New Forum

[icnmgrjill]

As many of you know, we're now offering a number of new special reports to our subscribers. Our next special report will be on Managing IC Flares & Pain.. and will be released this Fall. But, what I'd like to do first is ask you all... what are your best flare management methods??? Let's talk about it and see if we can come up with a great list of resources!!!

Jill :)

[kelly McC]

Great idea. Mine is using alternate ice packs and heating pad or patches. Drinking water and resting curled up on the couch.

[tigger_gal]

managing flares..
Try to avoid stress..

heating pad... I alos was told by one of the gals here (sorry forgot who) that if you lay the heating pad in the preanal area it relieves pan faster.. she was very correct.

getting in a very warm bath...

urised and vicodine...

a big note above me that says flaring do not disturb....

patience and understanding from your family..

Brat

[Mimi-in-Chicagoland]

Pyridium Plus

Bland food

Heating Pad

Warm Bath

Low Activity

No stress...or lowering stress. I tend to flare really bad during the holidays. Usually when I'm with the in-laws or when they visit us. My husband understands the stress that puts me under and he helps in the kitchen. We only plan ONE big meal. The rest is either restaurants or easy foods. I am allowed to rest without guilt. He carries anything heavy.

He keeps my evil SIL from bothering me...before I try to kill her. :evilsmile

I can usually tell when my bladder is a little sensitive. When it is, I don't eat any questionable foods. My in-laws INSIST on eating at this deep dish pizza place, and my husband INSISTS that I order my own entree instead of sharing their pizza. I love that man. :kiss:

[Katrina]

IC Pain Relief Methods (This list put together by Katrina) Remember I am not a doctor and you should always check with your doc before trying theese. Note that it may take cobining a few of theese to get the help you need.

This list is for when you are already in pain


• Ice/Cold (I believe alternating between hot and cold is best)
o Ice packs
o Ice
o Cold spray water
o In a water bottle
• Drinking almond milk
• Drinking baking soda and water mix or alka selser (about 1 teaspoon baking soda per glass)
Taking alkaselser Gold
• Herbs
o Marshmallow root (althaea officinalis) helps sooth irritation and inflammation due
o Licorice (glycyrrhiza glabra and g. uralensis) good for inflammation and anti allergic but should only be used short term
o Uva Ursi (arctostaphylos uva-ursi) is an antiseptic of the urinary track also used as a diuretic, also for inflammation…also only for short term use
o Black Cohosh (cimicifuga racemosa) not good for me since has similar effects to the hormone estrogen. Is used as a sedative and to relieve menstrual cramps. May have anti inflammatory effects. Avoid large doses.
o Catnip (nepeta cataria) eases menstrual pain, soothes the nerves, and as a sleep aid.
o Chamomile (Matricaria chamomilla) mild sedative, creduces inflammation, relieve menstrual cramps, http://www.ic-network.com/cgi-bin/ustorekeeper.pl?command=goto&file=Foods-Tea.html
• cornsilk tablets are unreal!!!!!
• Drinking a burger king milkshake
• Resting/relaxing (some goes as far as to say laying down….at times I could only lay on my side)
• Acupuncture
• aroma therapy (either in a warm wash cloth across face, in a bath, inhaled from a bowl of steamy water, vaporized on an oil burner, sometimes candles, applied to the skin, or taken orally)
o almond oil
o lavender
o lemons oranges
o all essential oils
o honey
• reflexology
• physical therapy
using a donut pillow
• Yoga mine see , ICN: (http://www.ic-network.com/shop/)
• Prilosec OTC or something...not so much for pain but because it is newly non prescription acid reducer
• Water (drinking plenty of water helps with burning pain and helps dilute urine so that it is less harmful to the bladder wall
• TENS unit Ask your doctor for a TENS unit. A TENS unit is believed to work by providing another source of stimulation to "divert" the brain from paying attention to your bladder. It's based on the spinal gate theory. Some patients find TENS very helpful while driving, or in situations when a pain medication isn't appropriate.
• Migraine Ice Patches
• Tylenol with 4 Prelief (many non prescription meds can hurt the bladder….be careful and watch out for what bothers you) http://www.ic-network.com/handbook/nerve.html
• Topical analgesic…Menthol example ICE Blue Gel
• Heat
o Thermal Care Heat wraps
o Heating pad (http://www.ic-network.com/shop/)
o Thermal care adhesive body warmer (http://www.ic-network.com/shop/)
o Spraying heated water
o a microwaveable pad (http://www.ic-network.com/shop/)
one of hubby's tube socks filled with uncooked rice. I just microwave it for about a minute and it's pretty hot. It's pretty flexible if you're trying to heat in between your legs.
• Extra Prelief (http://www.ic-network.com/handbook/prelieffactsheet.html)
• Taking a shower or Tums if your desperate
• Warm Baths (NOT HOT!!!!) No bubble bath or strong soaps, please! Soft soaps, perfumed soaps, bath salts & bubble baths can be very irritating to an IC patient. However, you can put baking soda in the tub for extra comfort. SITZ Baths Definition: A sitz bath (also called a hip bath) is a type of bath in which only the hips and buttocks are soaked in water or saline solution. Its name comes from the German verb "sitzen," meaning "to sit." I recommend: (a tub divided into two …one half is filled with hot water and the other cold. With part of the body on one side and than switching and back again in quick succession) Recommended 3 times a day for 20 min each
• Foot baths
• Visualization [relax your mind. Make sure you are warm and comfortable, and practice deep long breathing, concentrate on the rhythm of your breathing, as you breath imagine the air going in and out of the painful area (such as the bladder), As you inhale, imagine a warm glow healing the pain, and as you exhale, imagine the pain being expelled. Next imagine your pain as a red ball, now take that wipe it with your washcloth, as you wipe the ball gets lighter and lighter in color, keep whipping until the ball is white.] That was 2 examples do what suits you best.
• Trying things to distract you
o Listening to music
o Watching a movie or TV (some choose to have tapes ready for late night flares)
o Reading
o work on a craft or project
o spending time online
o writing letters
o Working around the house (Do what feels comfortable to you. Don't push it.)
o Being constructive and helping others
• Venting here or to friends
• Hugs
•
• Praying
• Staying positive….believe the pain will end
• Meditating (http://www.ic-network.com/handbook/meditation.html)
• Ask for help if you need it (family, friends, doctors)
• Instillations (http://www.ic-network.com/handbook/instill.html)
o DMSO
o Heparin
o Marcaine
• AZO for Urinary Pain Relief or URISTAT
• Ask for a foot message from your spouse or partner (actually I think it is the receiving one that helps with the pain :)
• Pain meds patch (such as fentanyl)
• Pain meds oral (Remember, the earlier you catch a flare and pain, the easier it is to stop and the less medication it can take to stop it. So, don't wait until you are crying and desperate... because that allows that pain cycle to get firmly started. Try to catch in early!) (http://www.ic-network.com/handbook/painmed.html)
o Oxycontin (Pain med’s are recommendations from other ICers)
o Pyrradium
o Perocets
o Klonopins
o Neurontin
o Codein
• Cold water in a balloon in vagina
• Taking slow deep breaths/other breathing therapies (http://www.ic-network.com/handbook/breathing.html)
• Practice relaxing the muscles near the bladder
• Put some work into lessoning your stress
o Use art to help visualize and express your stress…you can even use it to visualize and than erase your pain
o Spend time with your pet!!
o Play with your children or with children (if you have none of your own)
o Sing (you don’t have to let anyone hear you)
o Listen to a guided relaxation audio tape to relax your body. Commonly available at book stores, we recommend the tapes by Potential's Unlimited (Barry Konicov). If you can't find those, try the Health Journey's series of tapes. [http://www.ic-network.com/shop/]


NOTE: AS WITH ANYTHING BECAREFUL….AND IN RISKY THINGS ASK YOUR DOCTOR BEFORE TRYING NEW PAIN METHODS!!!!!

[Judy Gee]

Wasn't sure if you received my message so I'll try again. Where do you purchase Pyrdium Plus? Is it an OTC? Thanks, Judy G

[theclownster]

Hi there! I think this is a great new forum. I look forward to getting new ideas and sharing mine with others.

As for the Pyridium plus - it is a prescription drug. I got samples from my urologist - he actually gave me a whole box so I did not have to spend money on them at all which was nice. I only use it if I absolutely have to - cause I don't like how it stains things - It works great!

I'll have to think of some good ideas to add to everyone's list. I think my two best strategies when flaring is to drink lots of water and take lots of prelief.

Thanks for sharing your ideas everyone!
Jennifer

[Kimbamor]

what about healing touch...I haven't done it in years but it was emotionally uplifting evn if it was mostly placebo. Kind like when you were little and mom or dad patted/rubbed your back when you were hurt or upset. It is much more then just that but closest I can think of to describe. How about witch hazel to the perineum or tucks....I know it's used post partum but it works to decrease inflamation and is soothing. Not sure on effect with valvodynia (sp). Oh and for the tens machine what are the best placements of the electrodes (have 4 lead and never thought ot try it). I can guess low back and belly but what about perineum. I never realized how much it hurts there untill I had first foley (could not self cath because of it). I use the rice bag for that area but it only helps when on. Any experience with hot tubs....my girlfriend want me to come over and try her's (2 hrs away). I think my health coverage pays for part or you can at least use it as a deduction-medical expense for tax purposes. I always wanted one but no use if it makes it worse.

[tillysav]

Things that help me during a flare:
REST
Pray :pray:
Try to avoid stress (it's a killer)
Drink lots of water
Start taking URIMAX to calm my bladder (the blue pill)
Eat bland food in small portions
Curl up with soft blanket and take a Nap, read a good book, watch a movie, eat vanilla ice cream, nap again!
Last resort: take a pain pill

[ICLori]

Dear Kimbamore, I do not have a TENS yet but have tried it in physical therapy recently, and will ask my doctor now to write a prescription now that it has shown to help me. (I guess it helps 25% of IC'ers, that's a statistic I read somewhere.)

When I found it helped me, was when one lead wire was put on the left side of my pubic region, almost in the crease of the leg and pubic region, not more than an inch say above the pubic bone itself. The other lead wire was placed on the opposite (right) leg, in the crease kind of between the buttock and the leg, maybe an inch or so away from the anal region. And then the other two leads, on the other side that way. So that the whole region is bathed with the electrical impulses.

I found that if I turned it up as high as I could tolerate it, it did give relief but then gave me increased pain afterwards. If I turned it up only very low, stayed at a low frequency, then it gave about two hours of relief after ten minutes, and the pain was not any higher afterwards. Apparently when you have the frequency up high, it helps incontinence because it stimulates the muscles. With IC, you want calmness, not stimulation of muscles, so a lower frequency works much better.

Anyway, TENS could certainly perhaps help with your situation, although it is best to consult with your physical therapist about where to place the leads and frequency etc. I was just giving what worked for me, as an example for you to discuss with the PT.

I can't top what others have said about pain relief - mostly just hot water bottle, lying down a lot, hot baths.

Blessings, Lori

[Kimbamor]

Thanks Lori. I just saw my uro today and she gave me the go ahead for self treatment. She figures since I am a nurse I won't try any foolish/dangerous ones... She wants me to keep a log on what treatments help so she can pass the info to her IC nurses. I have to teach patients how to use the tens machine in our clinic for back and myofacial pain so It was just the positioning I was wondering on. My husband is going to tease me about the perineal placement I'm sure.... :) I sent off an article to my sister-in-law on accupuncture and she is going to check with her resources. She is a massage therapist and is licensed for accupuncture too :) I even have a pharmacist in the family (hubby has 7 sisters and 2 brothers so I have just about any profession in the family). I know if things get bad I can always just have my docs do blocks or botox or even stims even though we don't treat many patients for pelvic pain(separate clinic). I let everyone know what she finds out or if my docs have any "new" treatments (I am making sure they get educated on IC for sure ).
Thanks again

[Lyn40]

When I am flaring, I find hot baths, heating pads, rest, lots of water, very limited diet, increase dose of elavil (from 10mg to 15mg), pain meds as needed, etc. are what works best. These are typical treatments.

I would just add that I find it terribly difficult to sleep when I am flaring. Usually by the 3rd night, I am so exhausted that I end up sleeping hard 5-6 hours, which is great. The next morning, my flare is almost always starting to die down. I think the sleep definitely helps my bladder spasms calm down, not to mention my mental state.

[dyno]

My best flare management aids are heat and relaxing.

[Phyllis Ann]

To all of my new wonderful friends here at IC-network.

My best relief is to sit at the computer and read everything everyone has written.
I don't know how I would have made it thus far without all of you wonderful people. Just knowing I am not alone is the best relief I could have ever asked for. If I get scared, am hurting, or just need comfort, I know you are always there.

I don't normally even need to post and am kind of quite but it seems like all my questions have already been answered.

Thank you Thank you Thank you

Sincerely

Phyllis Ann

[Sarojini]

Kimbamor -- at least for me, hot tubs work great. HOWEVER, it has to be mine. Public ones have too much chlorine in them and that irritates me down there (and other places). My husband and I have our own out on the back deck, and he maintains it with bromine (which is supposed to be gentler) and also uses the least amount he can get away with without turning the tub into a bacterial soup ;)

Anyway, I love sitting in it. It's very soothing. I have IC and myofascial pain syndrome, and the hot tub helps both conditions.

[hannahmae]

I'm sure you have all probably tried this, but I find that positive thoughts (as in "its not that bad") really helps me when I am feeling horrendous...similar to reducing your stress levels externally, you need to calm yourself internally by thinking positive and not letting the pain and discomfort anger or upset you...
I would consider myself to have mild IC, but I really find that sleep is the best treatment for me...days when I am feeling "not right", I just keep sleeping for as long as I can, which also helps with the stress levels!

I think there must be some kind of placebo effect to flanelette pyjamas and a warm doona!

H :)

[tate-sparks]

undefinedundefinedundefined
Hello all,
This is my first time posting, so I am not sure it will work or wind up in the right place! I am desperate with flares so thought I would log on and read up to distract myself.
I had the interstim implanted Aug. 2nd. So far it was great for 2-3 weeks, but since then I have been going crazy!! I cannot seem to figure out why I am caught in this flare cycle. Would love to hear from anyone. Thanks for sharing all of your tricks.
Robin

[Mimi-in-Chicagoland]

You have to get your interstim programmed to deal the best with your urgency/frequency after its implanted. That's done at your doctors office. If he isn't trained to do it, your rep will have to meet both of you there. Some people require more than one programming. I haven't been programmed in over a year, and I never touch my unit unless I have to turn it off for a cat scan. You can also have your unit programmed so electrical devices and metal detectors don't turn you on and off or reprogram you (you also won't set them off as much.)

This will help with the flare you are experiencing now. If it gets too bad, turn your unit off. Hope this helps.

[onegoodday]

Everyone talks about prelief helping, so I tried it. If I take more than two, I get severe stomach cramps, diareaha, then end up having bladder spasms for hours, Has this happened to anyone?

[XoChelsey03Xo]

:cat: My best way to cope with my pain is to lay down. I usually fall asleep and when I wake up I feel much better. Of course when I'm out at work or something this can be hard to do. Usually I just have to sit down for a while. Chelsey

[HOOP]

Hi There
I Believe That Sleep Is Part Of What Keeps The Pain Away. I Have Been Taking A Sleeping Pill The Last Couple Of Day On And Off And The Pain Hasn't Been Really That Bad. I Can Tell The Difference When I Don't Get Sleep. The One Thing I'm Trying To Find A Way To Control Is The Car Drives. I Can't Seem To Go For A Drive With Having The Need To Go To The Bathroom. I Can Probably Last 10 To 15 At The Most. Does Anyone Have Ideas?

[Lmarks33]

I was feeling so bad about my life and my IC but reading this makes me feel better knowing that I not alone.

Thanks guys.

[Dragonfairy]

Hello everyone. I'm new to this forum and newly diagnosed with IC. What a relief to know that I'm not alone. I have been on Elmiron for about 4 months now and am just know noticing a positive difference. Flare ups however do still occur and from reading this forum, will probably continue to do so. I have found that heat in any form helps and helps quick. I too drink loads of water and kool aid to help with the dry mouth and constant feeling of dehydration. I have recently added Bextra to my daily intake of meds for another medical ailment and am pleasantly suprised that it has prevented any flare ups even when I cheat and have food items that are restricted from the bland diet that many IC patients follow. When I asked my physician about it, the only explanation was that perhaps since Bextra is like a super duper dose of ibuprofen on steriods, that it was preventing the flare of the bladder lining. Quite frankly, I don't care how it works, I'm just glad it does for now.

I'm going to try to keep checking in on this message board. I helps me feel a bit normal again.

:)

[Karissa]

My main source of relief is Pyridium. Granted, one time I was out of town and I never thought I was going to make it to the store in time. My flares seem to come out of nowhere but I hadn't had one in awhile. I usually have Pyridium in my purse at all times, but I didn't at that particular time. I won't be forgetting it any more.

My other "remedy" is heat pads. I have one that I put in the microwave and for about 30 seconds and it's ready to go!! I've never really used ice before, I always use heat and curl up under a blanket.

My ideas seem to be about the same as everyone elses! :)

[golfcat52]

:cat:
When I have a flare:
1) I take 2-4 Tums, drink water with baking soda an hour later, and more Tums a few hours later. (From Dr. Gillespie's book).
2) Drink a lot of water.
3) Rest. Take Atarax or Benadryl if needed to get some sleep.
4) Re-alkalinize by drinking only green juices for a day or more. Munchies: only raw veggies or rice cake.
5) Get back on track with dietary control to avoid another flare!

[Kathy98902]

I had to make a plan so when I have a flare I can just go on autopilot.
This is what works for me. Maybe some of these suggestions will help you.

1. Try to stay relaxed. Tense pelvic muscules hurt more.
2. Take pain meds. Don't wait until the pain is overwhelming.
Perelief and Pyridium are also helpful.
3. Warm bath with sea salt and baking soda (1 cup of each mixed together)
dissolved into the water. Rinse off with shower after bath.
4. Use heating pad. In my case, my dog (a Shui Tzu named Gizmo) acts as
my heating pad. He is kind of a therapy dog. I lay on my left side and he
curls up against the lower part of my tummy or the pelvic area. He has
done this since he was a puppy. I got him the same year I had to take
my medical retirement from teaching.
5. I tend to lay down a lot during a flare. A quiet room away from the
hubbub of the rest of the family, helps as well, esspecially for sleeping.
6. Accept help from others. My husband is very supportive. I believe there
should be gold medels for supporting spouse. He and our daughter take
care of things cooking, laundry, & etc... until I'm able to take it up again.
7. Aroma therapy helps me to focus my mind to relax better. I have a
mixture of Lavender and Camomile essential oils mixed with distilled water
that is in a spray bottle. I spray my sheets and pillows with it. It doesn't
stain anything. Orange oil in a heat diffuser is also calming and uplifting.
8. A warm cup of decaffienated Earl Gray Tea with 3/4 a teaspoon of sugar.
Earl Gray Tea has Bergamont Oil in it. Bergamont has soothing properties
in it. My husband teases me and calls the tea my aroama therapy,
because of the pain meds I usually fall asleep before I can drink it.
9. If the flare is esspecially bad I go to my uro or doc and get an injection
of Toridol. (hope the spelling is right)

Hope this helps! God Bless!

[Myli]

In the beginning, just a year and a half ago when IC hit, I tried to help it as I had the few times I had a bladder infection. That was sitting in hot water and drinking a lot of water and using Uristat. Unfortunately, I found that hot water was great as long as I was in it and eventually, not even then. About 4 months ago, I gave in and tried sitting in cold water. I was amazed. Half an hour in the tub meant hours of relief and sometimes the end of the flare up. Now, I still drink a lot of liquids, about a gallon a day and use the Uristat during a flare to augment the medications I am taking. I have found that it helps to have a very full bladder before urinating and probably the dilution of whatever hurts is helpful as well. During a flare, I sit on a cold water bottle (fully clothed, the cold is not directly touching my skin.) Somedays I may have to sit for hours, but so far, that always works to stop the pain for a pretty long time.

I also wear leggings and an overly large men's T-shirts at home. I find them to be pretty comfortable even during flares. Jeans I save for going out as the tightness plus a belt can be quite uncomfortable.

Avoiding stress is a high priority with me, as I find it often precedes a flare up. Very few foods seem to bother me at all. I have eaten out and eaten all the no foods without any repercussions, except for caffeinated/carbonated beverages. I also have found peanuts to be problematic. Thank heavens for almond butter! Very nummy!

My advice would be to not do what I did and keep trying something that isn't working. If it isn't working, try something else. And, stand up for yourself with your doctors. One of the major mistakes I made was to let my regular doctor make decisions that I felt strongly were wrong for me. But, I defered to her because she was the doctor. Don't do this. You know your own body. I've lived in this body for 60 years, I think I know something about how it works and when something is wrong. I will never again let a doctor make a decision that I know or feel strongly is the wrong one for my body.

/hugs
Myli

[LadySirella]

:woohoo: After reading many of the replies, I don't feel so bad because apparently these flare ups can last for hours. I've been able to find relief within about a half hr. I drink lots of water all the time but when a really nasty :yikes: flare up hits I take an Oxybutynin 5 mg with a large glass of water. I'm supposed to be taking the Oxy for urinary frequency but it doesn't seem to help the frequency but damn it helps the flare up.

Hope this helps someone. Glad this site is here. :love:

[SusanC]

Hmmm, flare relief...during them it seems like there may be no relief in sight, but for those of us with long term IC (had mine for 10 years, and others on the ICN have had it much, much longer) we know that the flares will pass. While in a flare use any and all treatments that seem to help, but never, Never give up trying to find the combo of treatments, meds, therapies that will help, because really and truly you will find what works for your IC...and this site really helps that.


In the beginning.....

there was TENS (my life-saver), used off and on for most of the day....first on the tummy area for that nasty burning...then later, after the burning was under control, used the pads on my particular "trigger points":on the right lower buttocks just above the crease of the leg on the 'behind' cheek.

heating pad (moist heat...microwavable or electric) or Stella, our Persian cat on my lower tummy...at the same time a microwave heating pad on my butt on the area described above.

baking soda and water (yuck!!!, but it works for me!)

drinking water and ONLY water, all day every day

a loving and understanding husband, parents, sister, and grown daughter

NO pain meds allowed by my doc....if not for TENS, I don't know how we (hubby and I) would have survived


After 3 years............................................

New uro...a uro-gynecologist this time...and a woman

lidocaine instillations, first at the uro's office, then they taught me how to do it myself, so I could continue working

pyridium from the drugstore...lower dose than RX, but effective

physical therapy as myofascial release during flares...would hurt more temporarily, but lower the pain of the flare

Still....no pain meds until 6 months later, then a trial of Tramadol, then low dose Vicodin....neither worked hardly at all, but the Vic was promising, yet she would not prescribe anything higher

Plus.....all of the above


After 4 years...............................................

New uro....compassionate, understanding, and willing to try what was new in research about the same time I'd read it on the ICN and before I could even suggest it from my list of things to ask that I take with me to his office

pyridium as a RX...stronger, and even more effective and taken only during flares

Prelief with any questionable food

0.5% marcaine instillations at least 2X's daily

Vicodin....5mg taken 2X's daily

Plus....all of the above

After 9 years..................................................

SAME uro...who would want anyone else? He gave me hope and was willing to work with me and didn't deny the pain of IC

Still marcaine instillations at least once daily, up to 3X's daily if flaring

Vicodin.....on a regular schedule, as above, with added 7.5mg tablets to use while flaring in place of the 5mg

Plus...all of the above which includes a fabulous, supportive husband and the rest of my family


Moral of my (her)story of flare remedies:

Have a good plan and the kind of doc who will work with you on a long term treatment plan to find what works for you. That's what gave me hope and still gives me hope that someday this pain and these flares will be under more control. HOPE is the answer for me and helps me to get through the inevitible flares that we all have.

Thanks for being here for me and for reading this long post...it was cathartic, in a way...to see how far we've come...though right now it's back to my daily friend the heating pad and the couch.

Here's hoping and praying that your day is comfortable and your flares short- lived. :smile fai

SusanC

[Myli]

I have never had that reaction to Prelief. In fact most of the time, I am not certain it helps at all. But, I have taken 6 or more at a time on occasion. I see that some folks use Tums. I haven't tried those myself. You might try looking for other products that alkalinize the urine.

I think this only helps if food is a trigger or an irritant once a flare occurs. I have found that very hard to determine, because I eat the same things day in and day out for the most part. It is how I control my weight. So, if I flare, I do look at what I am eating, but usually can't see that I ate anything different. Very occasionally am I able to point to a food as the problem. My doctor has told me that food hits the urine within about 2 hours after eating. So, a flare the following day is unlikely to be related to something I ate early the day before.

I would suggest using the ic diet as a guide and see if sticking to it makes a difference. If it does, then perhaps some food is a problem for you. Then you can reintroduce other foods very gradually until you can identify one that is a problem. I also think seeing a nutritionist to help with devising a diet plan to cope with the ic and any other problems you may have, is very worthwhile. It has helped me immensely.

/hugs
Myli

[golfcat52]

:cat: I forgot to mention how very, very helpful the book, Solving the Interstitial Cystitis Puzzle by Amrit Willis has been to me. I credit her advice with getting my symptoms under control and having relatively few flares. I also take prelief with any, even slightly, possibly irritating foods. I also use Beano to help with digestion of beans, broccoli, etc. That seems to reduce the IBS symptoms that seem to precipitate or coincide with IC flares. I also had food allergy testing and stopped having milk and cheese. I'm not allergic to peanuts, but find I have no tolerance for peanuts or peanut butter. Good luck to all!!

[jbakerbell]

There is now a generic for Pyridium Plus so be sure to ask your doctor to allow for substitutions and demand the generic. My pharmacy had to order the generic when my urologist refused to let them substitute it with Pyridium.

[michele]

i have found two things that work wonders.

1. accupuncture. it doesn't work for everyone, but it can totally shut down a flare immediately for me.

2. bladder installations...my doc does a cocktail including marcaine, heparin, and a few other ingredients like baking soda. she doesn't like DMSO (or whatever the order is, i can't remember right now). you can do them yourself once they've shown you how, or your doc can do them in office (but it ain't cheap for them to do it!).

also, i've found that drinking sprite (of all things!) sets off a flare worse than any other carbonated beverage including onces with caffeine. weird!

anyway, best of luck to everyone.

[Miki]

I found that prelief didn't work for me.
As for flares:

EXCEPT for this one:

heating pad
hot hot sitz baths
Lortab for extra break through pain. Usually was 1 7.5mg....now is 2.
Valium,
Zanaflex.
When I was younger, a "theraputic intercourse" made things really bad for 3 days, then lots better.

laying in bed all day.
Reading,
staying on computer to get mind off flare.

Use of pyridium,
also HCL hemmorodial suppositories (RX) either in rectum or vagina
Use when going to sleep at night.

Try to walk around, and get own liquids, and food, just to get out of bed, esp after 2 days.
Try to sit in living room and watch TV, but can't do that for very long.

Used to love to watch Vids in my bedroom.
I don't do that now, and am bored by the DVD's. Great home theater,but I am just not really into movies since 9/11. Esp. the one's hubby likes, shoot up bang bang.

THIS NEW FLARE: UGH.
nothing seems to really work.
I am using a mixture of cortizone cream and nupercanial and apply to opening of the uretha, then in the vagina, and the rectum.
Stings just a little at first, but gives about 5% relief, and more after.
Take 2 7.5 lortabs.
Pyridium 3 X day
Valium, up to 30 mgs day
Zanaflex.......1.5 tabs a day divided doses.
baths...hot and read book. (this is gross, but pee in tub, to release the spasms and holding of urine)

Lying in bed with my tush elevated and legs bent at angle to hold my laptop.
work and play on computer. Stay on this group to take mind off my own pain.
Read books.
heating pad on lower abdomin this time. Usually put the heating pad on my duragestic patch, to help the medicine get into my system faster. My skin temp is low, and I need to give it warmth.

Don't eat a lot. Just when I have to take pills.
I used to love getting candy, but gave up on candy.
Blew out my 5 month old heating pad today. Good thing I have a backup!

Try not to pee often.
Drink my juice concotion. I use 1 cup of orange juice to 7 cups of water.
4 tsp. of sugar and 4 packets of equal.

The orange juice has not bothered me when not in flare, and neither has the equal.
I was using 7 packets, and no sugar. Decided to try to see if equal was bad or not.
Doesn't matter.

Most of these things are not really helping my flare. Have been in it for weeks, with some really "normal days....2-3 /on a 1 great 10 worst scale)
This flare is runing around a 6-8. Started as about a 4, then escalated.
There will be 2 or so days no problems, no flares, no meds etc, then bam. It hits.
Or I will get spasms of flares 1-3 times a day, lasting about 1 hour to 3 hours.

Haven't tried the baking soda, might do that tonight.
Scared to use it and also have the orange juice cocktail that I drink.
Maybe stick to water or milk.

Will call my pain clinic on Mon, to see if we can adjust or change my narcotic meds.
I think I am getting too used to the lortabs. Oxycontin doesn't work, any longer on me. That is 12 hour lortabs actually.

Tried morphine pills, they made spasms worse. Retained urine, and couldn't just pee.
That was hell. Instead of taking away pain, it caused it!

end of book

Miki

[golfcat52]

Miki,
You might want to try "Throat Coat" tea by Traditional Medicinals. It has licorice and marshmallow root in it and is very soothing and warm. Make sure your vitamins or supplements are not causing flares. I take Schiff Children's vitamins as it has less irritating forms of vit. and doesn't have artificial sweeteners or colors, Ester-C, Everyday Calcium with Enzymes (by Rainbow Light), Yeast Defense (by Nutrition Now), and Thera-Tears Nutrition (fish oil, flaxseed oil, and natural E for dry eyes), and Glucosamine-Chondrointin with MSM (also Schiff).
I know there is some seasoning used at Cracker Barrel that sends me into bad flare with the IBS too. I asked for ingredients list (not recipe) and they wouldn't share, so I haven;t been nack. Maybe there is something causing your flare that isn't an obvious ingredient.
Good luck - hope your flare ends soon.
Betty

[jbakerbell]

My urologist put me on Sanctura, 20 mg twice a day about 10 days ago. It is for urge incontinence and stress incontinence mainly, but he said it might help with bladder spasms and urgency and pain. Takes 1-2 weeks to show results but I noticed a difference in 3 days. My 2 month flare is about gone!!!!! Sanctura has been available in the U.S. since early summer. Anyone else tried it?

[jbakerbell]

I always had good results with Pyridium Plus 4 times a day when I had a flare (along with my daily Elavil and Hydroxyzine. This recent flare is the worst in over 8 years and the PP doesn't seem to be working now. SANCTURA is a new drug I was given 10 days ago to see if it helped the urgency, burning and pain. So far, it seems to be helping.
I also drink a lot more water during a flare, and have found (for whatever reason) it doesn't burn as much if I am in a sitting position rather than lying down.

[Miki]

Interesting to read the different modes of relief.
One thing I found interesting is how different our flares are.
Some people flare for a few hours, and then it is over.
Some of us flare for a week or more, and it seems never to end.

My flares are constant. Meaning, when I flare I must take action, and that 9 out of 10 times, the flares are long lasting. Like this month.
I have had about 6 good "normal"...meaning I was able to tolerate the pain without additional medications. That means I feel like I have to pee all the time, but I can put it to the back of my mind, and still go on with most of the slow things I do in life. (not much any more)
That is usually a 2 or 3 on my 1-10 scale....10 is going to ER.
Ever since I got this "whatever" 22+ yrs ago, I have never felt the way I was before getting it. I only had one wonderful 6 month period. It was 1 yr or so after getting problems, (no doctor told me it was IC, or anything, I was finally diagnosed as chronic urithritis.). So, I got appendcitis a yr after the disease began. I went into ER, they pushed me up to surgery after like 8 hours of pain. NO pain meds. (nice huh).....Did all kinds of tests first, and finally found my appendix was all crumpled up and ready to burst.
Did the surgery, and all was fine. I had an IV antibiotic drip for 3 days till I got out of hospital. After the pain of surgery was gone so was my bladder and uretheal pain! I mean, I was NORMAL. None of this feeling like I had to pee all the time.
It was so wonderful! I was Cured! Well on July 24 while visiting my parents in Ca. My husband and I decided to have sex. (not that we weren't during the normal period, and it was so nice.) But this time, BOOM........same old same old. Came back. No UTI, just the darn pain like I had a UTI.

That was the end of my normal days. I still wonder if they would put me on IV antibotics if I would get over this horrible disease. But no URo would even consider it. Oral anti's didn't help. I am sure it was the heavy duty anti's IV to make sure I didn't get sepsis due to the appendix almost bursting that helped.
But no was the ans. from every doctor. They just said it was a fluke.

I

[purpleviolet]

I didn't know where to post this question - has anyone tried an infrared heating pad - I keep getting this ad in the mail for it. It claims to be healing and better than regular heating pads. It is expensive. There is also a therapy called red light therapy - I don't know if it is the same as infrared or not. They both claim to penatrate tissue and promote circulation and reduction of inflammation.

[Miki]

Well, we think I am getting too used to the lortab. Took me off that and added percocet for flares to try.
Also, for the times that I would think to go to the ER, she gave me Actiq, which is a fentanyl lolly pop. You don't suck it, you rub it against your cheek inside.

Since I am on Duragesic, and it really does work, she figured I could try this.
It is a fentanyl based drug.
It is meant for break through pain for cancer patients, but aren't all the narcotics?

:confused: What I don't understand is how so many of you are able to go without any meds. and can function. My pain is too severe to think about that.

I remember just a few months ago, we tried to give me a fentanyl vacation. IE: use a different med. I was put on oxcontin long lasting stuff.
That is the whole point of pain management. It is to get you to a place with meds where you can cope and live your life. :woohoo:

Anyway, I switched back to Oxycontin, and it didn't work at all. It worked 7 yrs ago for very long time, then it stopped, and they put me on Duragesic.

But, I didn't realize how much pain I was in without the long acting meds. :dizzy:
I remember how scared I was to go to a pain clinic because I was afraid they would not allow me to use meds at all.
That is not the way my pain clinic works.
But I was in the worst pain while on the oxcontin. It made no sense, but there it was.
So, after 1.5 weeks of this horrid stabbing constant peeing, etc etc, they put me back on the patch. Within less then 12 hours I was back to almost my normal 2-3. It was amazing. :dance:

How do you all do it? How can you stand the pain all day and night 24/7 with out something to help? :hmm:

OR: do you only have pain occasionally, that you can handle, and then when the pain gets worse you take some break through meds?

My pain is 24/7 and it never gives up.
That is the reason I am on the patch.

It would be interesting to find out how each of us presents in the area of pain.

I just read how you people get dmso treatments, and how they helped or other instilations. I had those and it killed me for a month after they stopped the procedures. I couldn't even finish them. It was too painful, and that was with IV demerol!

I think I must be a nut case. Or have some totally different disease.

Thanks for listening.

I am thankful that my flare lasted for one week, and now I have had 2+ days of 2-3 on my scale. I am so weak tho. I could hardly walk from the parking lot to the clinic. I have been in bed so long with pain, I just have no muscles left.

If I can control this pain again, I will be able to start my exercising program again!

miki :)

[Miki]

kicked husband out of house tonight.
I am tired of his verbal abuse, and his lack of any apparent desire to be human
miki

[michele]

miki, are you ok? i'm sorry to hear about your husband...on top of a flare, it's tough to take it when someone's not being decent.

*hugs*

[Miki]

Thanks, the flare is getting worse tonight, and I am now trying to just deal with it.
I am trying my new meds, I hope they work.
It was even making me have nausea. I get that when the pain level passes a certain point, and I get upset, so I have to do my relaxation CD.
Husband went to shrink today, seems to be in better mood. Better STAY THAT WAY!
Or he is out for good.

Miki

[the_lost_lenore]

For me, I use Uristat and warm baths to help deal with flares.

[ICNDonna]

I suggest you ask your doctor about the heating pad. There are thousands of different ads in my mailbox every day, many for expensive items that I know are not worth the money.

Donna

[purpleviolet]

Thanks Donna for the advice. I bet doctors' mail is full of stuff, too. Sometimes I think we hear about things before they do. I just had a horrible flare, I don't know what from, but maybe from quacomole - avocado and salsa - too spicy. I got hopeful when this Ph science - PH control product arrived and so I'm trying that, but still not quite back to my normal plateau (which of course is not 'normal'). It's all so confusing this PH thing, because simple baking soda, or perhaps calcium citrate, can also alkanize urine. I'm thinking about asking my doctor for doxycycline or Sanctura, but I have to try one thing at a time for awhile before jumping to somehing else. I just read somewhere about IC refief from a hypobaric chamber. Anyone heard of that?

[Myli]

Certainly a new one on me. Isn't that what they use for the bends? Wonder how that applies to IC?

:grouphug:
Myli

[crystilclear]

I love the therma care pads so much. They have been a great help during my period. Sounds weird but the Flexeril for my back helps my bladder too. And something I learned the hard way to take a pain med before the pain becomes out of control. I can truly say that is a lesson I will not forget. Anyways thought I'd pitch in an idea too. Hope you all are having a flare free day. Take care - Chris

[Miki]

congrats on the 100mg. I hope this will be the dose that helps you and that you can resume your life.

Crystilclear:
I would assume the flexeril works just as the zanaflex worked for me. It helps to relax the muscles of the bladder, and uretha. I know that the pills are in a similar family, but my zanaflex is more for MS. patients, and for their spasms.
I also know that there can be liver complications from the zana. I might ask my doc for some flexeril. Maybe that would help more?

bek

[crystilclear]

The only problem I have had is difficulty staying awake during the day. I think the combination is a snoozy. :bonk: Sometimes it is almost impossible to stay awake without smaking myself in the face a little. When I looked up possible long term problems that is tghe explaination it gave me (Excessive somnolence). It probably has the same risk factors especially if they are in the same class. Maybe one can be a better alternative for the other but I don't know enough to tello you if it is or not. I just know it helps me even though it makes me very tired but I'm like that anyways. Sorry I didn't really answer your question now did I? You could always ask your doctor. Take care - Christina

[Miki]

flexeril I took one time, before the time I was taking so many meds. It made me very tired, and I think a full tablet made me sleep for 18 hours.
Now I take 50mg of benedryl and can't fall asleep.
I used to be able to feel the affects of the drugs, now I am just "normal" tired all the time. Dragging. I fight to stay awake during the day, and have problems getting to sleep at night. Weird.

Maybe not, fighting to be awake, body gets used to that state of being.
None of the drugs seem to be working on minor or esp. major flares now.
I am so ******.

The new Urol I saw said, "IC is not a disease you want to get"
like that! I wanted to hit him. He didn't take a history, didn't go over the drugs I was on, he said, basically there is nothing he can do for me.
Don't ya love it?

Even my husband who was in with me, was getting annoyed with how he treated me.
I think I will call up the clinic and complain to his nurse and ask if this is how he treats all patients, or just ones who can't be cured!

[purpleviolet]

Miki - U need to find another doctor, and also find some way of registering a formal complaint about him. I would call the nurse and explain just like u did in the e-mail how bad he was and ask her to relay that message to him. I think most doctors would want to know how their patients view them. Have u tried any other the alternative methods listed on this site? Please all ICers enter your experiences with drugs/methods on remedyfind.com, a very concise database is forming there. All these years I only found baking soda and pain killers to help with flares. My doctor's practicing nurse(she's much more available than the doc)tells me to up the elavil and atarax I take. I told her about the doxycycline study done in Switzerland, and she is checking it out. It specifically says those patients had white patches of leukoplakia in their bladder and IC symptoms, but no infection. Does anyone have those patches? - are they seen on a regular cysto or does it require hydroextension to see them? Some of those IC patients with the white patches got better taking that antibiotic. Hope everone finds something to help with flares.

[Jeanne D.]

Hi Purpleviolet,

I have those white patches in my bladder. You can see them during a regular cysto. I have tried every antibiotic know to man with no change in symptoms. I also have huge, hemorrhaging, Hunner's Ulcers. My diagnosis is Eosinophilic Cystitis (EC) not IC. Many of my bladder symptoms present the same as those of IC. My biopsies have been sent to the Naval Institute of Pathology in Bethesda, Maryland and my urine has been sent to a very special lab that looks for things other labs do not. We have found no treatments to date that have been of any help, but we keep on looking.
It definitely is worth consulting with others -- someone out there just may have our answer!

Jeanne

[Miki]

I do not know what is inside my bladder, the different doctors I have seen have basically said it looked fine. One doctor only blew me up to 300 cc
but I think most times Ihold more.
Anyway, an earlier doctor told me he saw some little blood in a few places.
But most of the new docs say that anyone who is blown up past the point of leakage of the water from the cystoscope will tend to bleed.
I actually have another appt with the URol. in 6 weeks. Figured I will give him another chance. Maybe it was a really bad day for him?
So, I got in touch with a woman PT who does trigger point therapy at my own pain clinic, amazing. I had to find out via, a wrong tele #, from the idiot Urol, (fax #), then faxed this this number myself, person called me on MOn. She is not on my insurance, told me about the woman who is at my pain clinic. Who knew??? So, now I have an appt with her the same day I see my pain PA.

Will keep you posted.'
I realize how different we all are. I can't tolerate taking Baking soda, it is so horrid, it makes me want to vomit. I can't take it. :headbang:

Bek

[Arizonian]

I like my salt water jacuzzi (outdoors) or the bromine jacuzzi at my health club. I also try to avoid chlorine spas as it can be an irritant. Also, heating pads are wonderful! I use it every night while reading before bed. I also find that exercise relieves pain and gets your mind off of the pain. I use a stationary bike, elliptical machine and even light jogging.

[Joyaur]

Prelief really help me I take four with each meal...when i am in a flare...

[trytosmile]

Great idea...things that help me during a flare

SILENCE ... : :woohoo:
reduced stress (LOL...is there such a thing) :dizzy:
rest, which includes a good book or a movie
warm bath with epson salt
heating bad
bland food, warm drinks
meditation and yoga
my mom ! :kiss:

[cynb2003]

I have been diagnosed with IC for 1 year and 2 months. I would consider my condition rather under control. My urologist had me cut back on my Elmiron from 400 mg (2 pills 2/day) to 200 mg (1 pill/2 day) and I have been having little flare ups here and there. I am back up to 400 mg. My question is this...I have never tried this prelief, it seems like it is worth a try from some of the replies I have been reading. Should I give it a try? Does it interfere with any meds??

[Myli]

I don't believe there is any medication interactions from Prelief and yes, it does help a lot. I should own stock in the company, I rely on it. Are you using the IC diet? That helps, but even then I have needed Prelief for some foods. I now just take it routinely as a preventative.

<grouphug>
Myli

[cynb2003]

I do try to behave! I consider myself lucky with not too many food issues. Coffee/Chocolate would be my 2 troubled areas. I have only 1 tea a day, so I really don't want to give it up! Thought maybe the Prelief would help with that. It would also be great to try when we have a social function and I would like to have an alcholic beverage and not suffer for the next 3 days!!
I get monthly massages, exercise 3 times a week and really work on the stress issue. In the spring, when was being cut back to 200 mg a day was really rough. My dad passed away in April and boy did I have a FLARE UP!!
So I have seen first hand what stress can do!

[Prozan]

I just started the Sanctura is it still helping you?

[michie]

wow I thought I was the only one for the last year my greatest relief has been pyridium, percocet, hot bath, and try to pass out with a heating pad while the drugs take effect. My doc gave me a new drug the other day Its called urimar-T its like pyridium except it comes in blue instead of the ever favorite orange color that I'm grown attached to. I'll let you know how it works just took it 10 min ago because I was worried about it effecting my urinanalysis I had this morning. If anyone has already tried it please give me some thoughts.


michie

Oh yeah!!! don't forget don't anyone dare talk to me someone els talking to me during a flare makes my skin crawl and I get to cranky or if someone tries to rub my back and say its ok what do they know they never had to go through this. Let them have one flare and they'll soon realize that it wont be ok its miserable :bonk:

[skieofnight]

Heating pad or anything ice cold in perinuem area. I've also recently discovered the IC diet no no's so that has shed light on heading off the flares.

In summary...heat/cold, avoid triggers, drink water, rest, decompress.

[free2bme]

What a great idea!!! the sign I mean. Flaring do not disturb. Think I'll try it! Thanks!

[onegoodday]

Hi
Can Anyone Tell Me About Sanctura..

[aimeee667]

I am using a drug called opium&belladonna suppositories,it is a old fasion approch but it is the only thing that has got my ic under control,try it .

[Miki]

I tried to find those at our Pharm. and they didn't know what I was talking about.
I asked my Pain specialist about it, and she would give me an Rx, but we don't know where to purchase said stuff.

Bek

[Janette Rass]

I have found that the most important thing is to ALLOW myself to be at rest and to give myself permission to set aside all those ever present obligations! After that I use my all time fav the heating pad, elevate my feet, try first level of pain relief [ibuprophin] then if that doesn't do the trick I move on to T3's & pyridium, and if that doesn't do it I use B&O suppositories. So far that has always worked for me.Lots of hugs to all. Hope all those flares are short ones! http://www.ic-network.com/forum/newreply.php?do=newreply&noquote=1&p=73434#
Smilie

[aimeee667]

this is for miki Belladonna&opium)supp.,this medication is a very old fasion approch but is does work.Ihave been on it for 8yrs.if you can not find it but they should be able to,shoppers drug mart always keep a supply for me.when they run out we use morfineand buscapan,not sure of the spelling but keep trying

[rhea]

Miki-you might want to try finding a "compound pharmacy". The suppository is a compounded med and only certain pharmacy do that...think of the old fashion pharmacy..if you are not sure where to get the rx filled you can always call a hospital based pharm and they might be able to help..good luck.

[Miki]

We have one of those RX places here. It is like half hour away, and I can't drive. They will deliver for an extra 25.00

I am not only dealing with the stupid IC now, (at least flare is only occasionally right now), but have had 6 weeks of bad Meniere's too.
I am going nuts.
Isn't bad enough to have a lousy pee pee, but then add the dizzy head swirls too!
I am about out of patience right now. I gave myself the right to rest, and get better, but 6 weeks is nuts, esp when I had more than that of the stupid IC before the menieres kicked in too.
I am trying to relax but what I didn't count on with MM was that by the 5 week it would start doing a flare, one day, and a feel basically sorta good the next. I had one day last week where it felt like I was back at level 2.
MM has NO things that really help. Meclizine, and valium. That's it.
I am so used to being tired, the pills don't even make me tired enough to sleep.

I can't read, I am only able to do the puter, because I learned long ago to really focus my eyes, and not use my head. I concentrate on one word at a time, so I can be slow.
But I have also had some slight flares with the IC, too. This was a killer.
I finally took some Zanaflex, and Vicod. and it helped. I guess being off of those meds for 5 weeks during the MM helped my system take back meds that stopped working.
I am going to try to not take them as often now.
I need the stuff to work when I flare in IC.
The MM I just have to suck up and be really careful

Went out to Barnes and Nobles last week to get more audio books, and it total sensory overload. I was so Tried when I got home. (no I did not drive.,)

Oh well
enough ranting and raving. I will now try to go back to an audio book.

Miki

[sweetpea2555]

:) I found that moist heat compared to a regular heating pad works the best for me. I was burning myself with the heating pad because I couldn't feel how hot it was and decided to try wetting down the pad inside (for the moist heat feature) and noticed a BIG difference. It even calmed some of my worst bladder spasms.
I know everyone is different, but it is worth a shot.
I am one who can't stand ice it throws my bladder into spasms go figure- just shows how different we all are!
Hope this helps someone!

[rhea]

Oh my goodness Miki...meniears on top of IC...omg...do you have the ringing in the ears as well...that is a horrible disease. I have a friend that has it really bad. I had a spinal tap a year ago that did not close and had a spinal leak for about 5 days before I went to the ER...5 days of dizziness and vommitting was more than I could handle so I give you LOTS AND LOTS of credit for doing this for as long as you have. BIG BIG HUG to you and lots of prayers...I hope it lets up soon for you...god bless...and if you ever wanna chat bout minears did lots of research for her and spoke to lots of neuro's to understand the disease...Rest and feel better soon... :kiss:

[Betsie]

Miki,
Though I have never been dxd with Menieres, I know much of the symptoms and the relentless off balance feelings. My ENT discovered I have a left ear imbalance, in that the pressure is different. It is easily set off by a fast elevator, an airplane hitting certain elevations and anything in general that has rises and falls. I t is also set off by respitory issues. He has prescribed nasal remedies in the past that do help so much along with inhalors. If I know I am going to travel, I start on these rx treatment a few weeks prior, during and after. I wonder if anything like this would be helpful and able to be added. Another trick I learned is to take sudafed 1/2 hr prior to take off, as the eustaction tubes are what causes much of the pain/vertigo. I know I am not describing menieres, but thought I would post anyway....I know how horrid it feels, and thankfully, I have been free of symptoms for some time now. Good luck, I hope it settles down very soon.

[Miki]

Rhea:
Thanks for the HUgs, I wish that would cure or at least put the darn thing into remission again.
I can't even imagine 5 days of a spinal tap and all the sickness that caused you.!
MM. gives me nausea on and off now. It is starting into my 6th week. I was so bad the first 3 weeks, but each day was just a little better, and I allowed myself the right be feel sick. Now, I am so fed up with the dizzies, It is not Vertigo at this point, at least not unless I lie down flat with my head flat too. I have to stay upright, even sleeping on an angle. If I don't I will have more problems.
Don't get good sleep this way, and find that I am sliding down to a less angled position.
How did they finally stop your problem? Just went away when the hole healed?
Wow, I just don't know if I could tolerate it.
I have NO Patience any longer. I went to my pain Management dr. yesterday, and I was so upset, I began to cry. She said I really need to get my nerves and stress under control, it doesn't help the IC or the MM. Great! Like talk about frustration, how does one handle having all these recurrent things? I did it when I was younger, but I never had a MM attack that was as bad as this one was. I guess 6 weeks it usually takes for me to feel pretty "normal" just off balance, is not going to apply.
How bad is your friend? Does she have the problems everyday?
I would be happy to talk. I have done lots of research also, but my MM is episodic, or at least it was. I don't know what is going on this time.
I am just angry, depressed, and frustrated that I can't seem to handle it.
At least my IC has been at tolerable levels the past couple of days. I get a few times where the pain goes from a normal of 3 up to 6, when that happens I really go nuts.
It has happened and I decided to take my IC meds. I was surprised when the Zanaflex actually helped me again. I got to a point about 4 months ago when NOTHING helped.
I could take lortab or percocet, besides wearing my duragesic patch and it didnt' bring down the pain. That was awful. I was really upset about that. I didn't know what to do.
Having chronic disease is horrible!!!!!
I feel like my whole life is centered on my illnesses. I don't just have Ic and MM. but also IBS, Migraines, "faux" herpes, (that is a long story), Burning tongue. If it isn't one problem another pops up. Nothing that my shrink gives me takes away my depression. All the meds make me tired and not wanting to do anything.
So, what is to be done?
I hope your friend gets some relief. I know that there are pretty scary things that can be done to end the Vertigo, but it causes deafness.
Great right?
Thanks again for writing.

[Miki]

Betsie:
You are lucky you have found a way to control your pressure in your ears!
MM feels like you have pressure in the ear but there is none. The ringing (tintinus) is always present, and of course I am always off balance. Pretty bad disease for a ballet teacher. I can not remember how I ever taught when I had bouts of this MM.
I used to take psuedo. to give me energy and help with draining the ear. But I can not take it now, it makes my IC go nuts.
So many things, drugs, interact with each other, that I can't take them due to one problem or another.
I have to stay on a low salt diet, I am taking diuraetic, but it hasn't really helped.
Doc. told me today to up the water pills. Now I will see if the pills cause the nausea or the disease.
I use a nasal spray everyday for allergies, but I don't know of any that treat MM.

Thanks for writing. To help you with your balance, try doing eye focusing exercises.
If you want more info about that I can help you.
I am lucky that I was a ballet dancer, It helped me to use my eyes really well normally, and so I don't get as bad nausea as most MM paitents who can't stop the dizzies or vertigo by using focus to help, and to use focus to balance while in motion.
I am out of shape with the eyes thing, but it it still part of me, since I danced for so long. ONe Dr. told me I should be throwing up and so sick, when all I felt was a bit of nausea, and lots of Vertigo at that time.
I repeat what I wrote to Rhea, It is horrible to have chronic diseases.!

Thanks for the support
Miki

[Barbie]

Hi, My best flare coping stratagies are to first accept that it's happening and take care of it immediately! Don't wait and hope it will get better. I start with Pyridium, Voltaren for pain, the heating pad, and rest. Usually if I do all that, and get a little sleep, I wake up feeling a little better and can then cope. I'm in a flare right now and have followed all the steps and actually after 24 hrs. am feeling human again! Sure am glad I found you, I've learned so much!
Learning to cope,
Barbie

[rhea]

Miki-first off the spinal leak I had was repaired with a blood patch. Amazing thing once they did it, it was like "poof" all better, so I don't even begin to compare to what you are going through. My friend has lost about 30% hearing in one ear and the other "rings" all the time. Dizziness comes and goes but when it does come on it comes on hard and fast and can last anywhere from 3-4 hours to 48 hours. I know what you mean though about chronic illness. I think the worst part for me is just being tired ALL THE TIME. Sometimes it just gets to the point that I am soo tired that I just start crying and can't seem to stop. I don't think I have had more than an hour of straight sleep since I had my last surgery and they put me to sleep for 3 hours....to me it just makes everything worse.. anyway, I digress..I truly hope you feel better soon. You have been in my prayers...

[Miki]

Barbie,
Are you in pain 24/7, then flare up more? I have pain 24/7 and wear a duragesic patch. This keeps me at a level 2-3. I can cope when I am at that level. But if it goes up to 4 or above, then I have to just give in and take and do a lot more.
Sometimes my flares will last days, or just hours. It is weird.
My IC is mainly in the urethea, not the bladder. When I flare, it does affect the bladder, and I get feelings like a pencil is pushed into my urethea and when I move the pencil pokes me at different places in the lower bladder.

It is great that you have a good plan in the works. It is comforting to know that there are some other remedies which will work when you hit that flare.

I went through a period where nothing helped. That was really a mind blowing time
It was right before I got this bad MM> attack.

I hope your flares are minimual and you will feel better most of the time.
Miki

[Barbie]

Hi Miki,
Oh, I'm so sorry that your in pain so much. I hope your feeling pain free tonight!I'm coping right now with a mild flare pain. It feels like spasms in my bladder, menstrual cramps, back ache,and every once in a while sharp urethra pain like a lightening bolt going through. Luckily it's now under control and I feel just a mild pain. I'm on my meds and plan to be for a couple of more days. Mine always starts with mild pain that just continues to get worse and worse, to the point where I say "Uh-Oh" this is really a flare!Then I get on my meds, grab the heating pad, and know that I'll be useless for at least 24 hours. It also keeps me up for a couple of nights, like last night it woke me up about 3 A.M. and I just had to wait it out. I notice that standing rather then sitting relieves the pain, too, have you noticed that? When I first got IC my flares were horrible, and scared me. I was on the phone with my doctor all the time, and she was so understanding. Now my flares are about once a month or every 6 weeks, and pretty mild. I try to catch them before they really get going, and that seems to help so that I have more mild ones that horrible. Most of the time I'm not in pain, but then for unknown reasons, probably diet related, a flare happens.
I hope your feeling better.
Barbie

[mayray518]

Miki, i was a ballet dancer for 15 years. Danced with the Washington Ballet for awhile. do you teach ballet?

[Miki]

Miki, i was a ballet dancer for 15 years. Danced with the Washington Ballet for awhile. do you teach ballet?
Hi,
I used to teach until the IC, IBS, MM, etc etc just got to me, and I was in pain all the time. I gave up my school when I was 53 yrs old.
Not that I did too much in the 3 yrs. before. I was at the pain clinic, and trying to get to the studio at least 3 times a week. It was very hard.

Do you think your IC is caused by ballet? I really wonder. I was very techinical, both as a dancer (did my studies in NYC), and as a dancer, and teacher. Nat. it means tightening the muscles that also tighten your pelvic girdle. When I get over this MM episode (been 6 weeks now)...I will be going back to PT for PPD. See if it helps.
I know that my muscles down in the lower region are very tight.

I also coach, now. I did more coaching 2 yrs ago, and after each class I got flared up. I never understood why.
The less ballet I did the better I was..............or at least the less demost.
But that is very hard for me not to show things.
With age and fatness, and all that goes with it, I have learned that I can do a one on one coaching class without doing much real demonstration, and therefore will not cause a flare.

How about you.?

You can PM me or email me. or ans. here.

Thanks
Miki

[Miki]

[QUOTE=Barbie]Hi Miki,
Oh, I'm so sorry that your in pain so much.

Thank you. Tonight is not a good night. I was bad in the am and has continued. EVen my MM is acting worse today.
I guess I will take some pain meds.
Won't help the MM, but will/should take down the IC.

I hope your flare goes away quickly this time. It is good to have the meds, and esp. when they work.
You are lucky not to have the pain everyday, all day. I live with pain meds all day and night, and can't drive due to the woozie feelings.
That is one reason I don't drive. I think I have just decided to like being in my house and near all the things that can make me feel better if something comes on.

Take care, and feel better.

Miki

[smiley396]

Also, every since I had a hysterectomy three years ago, I have been having small bladder leakage problems and have to wear a those poise pantyliners everyday. Does anyone know if my hysterectomy causes this leakage. Has anyone had leaks after a hysterectomy. The surgeon says she's certain she didn't damage the bladder during the hysto, however the leaking only started after that. Or do you think the IC causes the leakage. Please help. Thanks, Smiley396

[smiley396]

Also does anyone know if smoking causes IC. My Dr. says no and that there is no reason why some people get it, but I was just wondering. Thanks, Smiley396

[Miki]

Hysto didn't cause me to have leakage. Just weight gain, and other problems.
I already had IC, and it made it so much worse for 6 months.

[yorkiemom]

For a flare that seems to be triggered by e.g., poor food choices (the incredible fiery burning that lasts for hours) I get relief by laying a piece of flannel with a blob of castor oil on it over my pelvic area. Over that, I put saran wrap, then my heating pad. Then I sit on a plastic garbage bag (in case the castor oil leaks) and relax for about 45 minutes. For some reason, it takes out the fire. Not the pain, just the fire, which for me, is a big help. Three professionals recommended this treatment for me before I finally tried it and for whatever reason, it does provide a modicum of relief.

[donutgirl]

Jill, I am a 24/7 pain ICer. During periods of extreme pain I put a relaxation CD in a personal CD player w/ head phones, turn the lights down low and try to focus on the music vs. the pain. I've been doing this for a couple of weeks now and it does help.

Thanks for all you do!
DIANE

[Hopeful Ic]

Thank you for telling us about hot tubs. I have been thinking about buying one. I am glad you mentioned this!

[fireflicker285]

a warm bath and heating pad (when not preg).

[mayray518]

never heard the smoking thing. I have never smoked. It causes a lot of bad things but never heard of it causing IC.

[Hopeful Ic]

I do not know of it causing ic but I know my uro said not to smoke because it increases flares really bad.

[mallenajolie]

My flare aids are the following:

#1 Heating pad
#2 Comfy couch, preferrably with a chuncky calico cat, and hand knitted/crocheted afagan + one additional calico cat with preferably with a loud purr. Lastly, Aquarium treats for them. :loco:
#3 Tens unit
#4 Good movie, if not too zonked out.
#5 Extra dose of oxycontin
#6 Comfy pillows, lots
#7 Water, or diluted ginger ale (doesn't bother me)
# 8 Phone, if feeling like chit chatting
#9 Journal, or note paper to vent, instead of venting to friends or family.

[Ania]

Heat, couch, water, talking to my best friend and visit this forum.

[Debgail]

Hi all:)
flare management for be sometimes depend on what got me there:) But here goes..
" drain fire" chinese supplement from The three treasures company...made to calm the bladder.

rest
tons of spring water
hot baths
ice bag on bladder
vicodin regularly during flare
turning down sex :(
aloe liquid sometimes helps

Hope this helps~! Debbie

[Miki]

worst part of flares is when you get more than just one thing acting up at the same time.
IE: Meniere's has been going on for 3.5 months, and then IC flared up for a couple of days. Add to that Migraines, and I have to wonder when I will ever get out of bed, or get off the heating pad. All I do is read, surf the net, and that is about it.
I am so tired of the flare of my Meniere's, and then when I try to get a medicine for it, it flares my bladder. Oh life so sweet. How does one remain calm, and positive???
I am depressed, and sick of all of this. I want a pill that will make it all go away, and be able to live a normal (semi normal) life.
I guess if I could accept that at 59, I will never be anything but someone who is fighting dragons all the time, I would get positive. I just know, if I have a good day, I am thankful for it, then I ruin it by wanting to just relax into that day, and feel good.
The next goes off, and I feel like I have lost all the opportunity I had when I had the good day. (except I was finally able to relax and not feel anxious about feeling lousy)

blah blah blah!!

[AFgirl]

I think this is a wonderful Idea. The only ones i can share is a Therma care heating pad (the ones used for menstrual cramps) or a hot bath, then curling up in bed with a good movie. It doesn't completely take it away, but it helps :)

[a11y]

Just relaxing and "taking it easy" I try and get my mind off it by watching a movie, or reading a book. I also take baths to relax muscles and calm down.
I will also sometimes take either 500mg or less (depending of pain, ugrecy, etc.) of Hydrocodone because my muscle have quite a time just relaxing (I have PFD too). Drinking lots of waters and try not thinking about it. Also consuling for stress managment can also help.

[Miki]

I think stress management should be required of everyone who has a chronic ailment.
I wish the pain clinic I go to would help me in that area. OR at least my shrinks.
Miki.

[southerngirl]

Heating pads, ice pack (between the legs), pain meds, warm baths, Tens unit, Lidocane patches, neurontin, pyridium plus, rest.

[yorkiemom]

Hey, Southern Girl, where do you put the lidocaine patches??? Uro told me they wouldn't help my pelvic area whatsoever; I use them for migraines and myofascial pain in my neck and shoulders and they work great!

[macylynn]

I have never stayed home because of a flare. I'm a teacher and it is more work to get ready for a sub and then worry about the sub and my kids than to just go to work and try to make it through the day. But, when I get home from work, my routine is:
Yoga pants
ice pack between underwear and pants
on my side
fetal position
hands between my knees
laying in the middle of our bed
Tons of covers
pillows lining my back

When I am at work, I try to sit as much as possible and bend at the waist (if it's not too obvious to students) I don't take anything because prosed makes my symptoms worse....

I was diagnosed two years ago when I was doing my student teaching. THAT SUCKED!!!! I was in so much pain!! I would go to bed early, wake up a couple times during the night, usually I would just lay down on the bathroom floor in the fetal position and rest before I would have to go again. I had so much back pain that I thought I had a kidney problem. In the morning, I would take a shower and start a new day. I was in a very difficult place because I am kind of 'anal' and wanted to have a good student teaching experience to increase my chance of getting a job.

[Shelka]

Hi,

When I'm in a flare I don't think there's ANYTHING I can take that will actually make it go away quicker, or at least I haven't identified it yet...is anyone else like this btw, where they don't know why it comes on or goes??

Sooo, my strategies are designed for coping with the pain/frequency/awful constant Got-to-go feeling for however long it lasts...

1) my HOT WATER BOTTLE!! It does ease the pain (probably not the bad Got-to-go all the time feeling which is a hallmark of my IC) & it's just comforting. I think I've gone through 10 of them in the last few years (seriously).

2) Reminding myself that IT WILL GO AWAY & really trying to think positively as much as possible.

2) loose clothes...no jeans or otherwise tight clothes pressing on my bladder

3) giving myself a break to just do what I feel like (veg, watch a movie, sleep in (if possible).

4) Hot baths help me relax my muscles.

5) Distractions!!...even if I feel awful & think 'there's no way I'll enjoy going out to a movie or walking the dogs or whatever so why bother'....I push myself to go anyways & a lot of the times I'm suprised at how I managed to push the IC a little bit more to the background than I thought I could.

and finally, and probably *most importantly* is...

6) going for treatments...like DMSO (in the past) & hep/lidocatine/sod. bicarb instills (currently)...

This might sound strange since I don't know if they actually work for me but just knowing that I'm doing SOMETHING about it that *just might work* is a lot better for me emotionally rather than feeling completely out of control (even if it's just an illusion of some control or the fact that the treatments give me hope that 'maybe this will do it!'.)

Hope this helps,
Shelley

[Joyaur]

For a flare I take about four prelief and CYSTA Q (four of them and drink mega water....

[Pain]

I WISH I had flares! After reading this thread...I guess this is why pain docs and the industry in general is leaning toward not giving long acting pain meds to ICers..since so many of you just have "flares" which short acting can control.

I had "flares" in my youth from "relations"....but for five years solid now I've had SEVERE 24/7 bladder pain and it is literally disintegrating in front of my eyes.

A while back we did a 24/7 thread on here and it seemed there were a lot who were like me..now it seems maybe not. I envy those of you that have flares...at least you have the non/low flare periods. Enjoy them!

[KLR]

In addition to what many of you have already written I also go to my chiropractor. I let him know that my IC is flaring up and that my plevic area is hurting and he adjusts me a bit differently and it really helps. Did this just yesterday and I swear the drive home was much better than the drive there. Note that I did this after I tested negative at my gyn's for UTI, yeast and bacterial infections.
K

[songbird7]

Sometimes heating pad works, other times ice works on lower bely especially. Prayer is good and it doesn't have any side effects. I have pain meds but sometimes have unwanted side effects from it. Do your best to distract yourself somehow like right now I am flaring with a backache and am here on the board,. I'm thankful it is not 24/7 Put on a silly movie. and maybe stand to see it. If it hurts to sit, stand. If it hurts to lie down sit. If sitting hurts, stand. I use meds the doctor gave me for anxiety and depression and these seem to relax the bladder muscles. Call a friend who will understand.
Take care and gentle healing,

[Miki]

Pain:
I have 24/7 pain. It is controlled down to a 2-3 by use of a fentanyl patch. If I did not have 24 pain meds, I would be really in major pain.

The flares I refer to: When my normal meds don't want to cover the pain any longer. IE: Break through pain. Then I have certain other meds that I take, plus hot baths, heathing pad, and staying in bed away from everyone. I am not civil enough to be around when I am in this state.

My main problem is that a lot of the pain meds for break throughs don't work. I have tried morphine, (it made the spasm in my urethea worse), oxycodone. (not the long lasting one) It just doesn't do anything, nor does the Oxycontin, any longer.
I have tried so many other pain pill which don't help the break through pain, I am scared that if I get something serious, I will not be able to find a pain med that WILL cover pain for me.
UGH

[Plush]

-heating pad
-ice pack
-Ativan
-half a Tylenol 3
-Prelief
-lonnngggg back rub by husband who reads the NewYorker and rubs back at the same time-talented man***
-visiting this board often which has been a complete and total blessing!!!
Hugs,
Plush

[malone]

I make sure I drink plenty of water--it not only helps bladder capacity but keeps acidity down. Dr.Hanno once suggested old fashioned Brioski-you mix in water and I find it nuetralizes a lot! I use a little more than the label recommends b/c that is what Hanno said and it can work wonders! The diet, the diet, the diet! Pain meds, stress and these wonderful message boards--I love you all!!! Malone

[Katrina]

What is Brioski?

[Joyaur]

I make sure I drink plenty of water--it not only helps bladder capacity but keeps acidity down. Dr.Hanno once suggested old fashioned Brioski-you mix in water and I find it nuetralizes a lot! I use a little more than the label recommends b/c that is what Hanno said and it can work wonders! The diet, the diet, the diet! Pain meds, stress and these wonderful message boards--I love you all!!! Malone






What is Brioski?

Also i use the purple pill if i get a flare..help with the pain

[Betsie]

taken off the advertisement site:


"The All Natural Antacid
for Indigestion & Heartburn Relief
For over 125 years, Brioschi has been providing heartburn treatment the world over, using only all natural ingredients to relieve heartburn symptoms and indigestion, without unnecessary additives, preservatives, or harsh chemical compounds."

[Joyaur]

Prelief does the same ....

[malone]

Just to clear it up--Brioski is very different than prelief! First of all you measure about 2 capfuls (I sometimes use 4) in a large glass of water. It tastes prety foul but it can help. I get some diarehea with it but even then it seems to reduce almost all the acid in my system. I was so lucky to see Hanno those few times and the little things he knew are the ones I always go back to. Good Luck--Malone

[intrepid]

Hot baths are great. When I am at work or stuck somewhere inappropriate for a bath I take a damp washcloth wrapped in saran and then heat VERY BRIEFLY (10 seconds) in the microwave, check the temp and apply directly to my burning bottom. When at home I put the warm washcloth directly on the peri area. Also, I work on a maternity floor and we use peri pads that produce cold when activated. These are great after a DMSO treatment or with severe burning after urination. This is in addition to serious meds and checking for infection. You can buy the multisticks to check your urine at home for infection or bleeding.

[KristaA]

Thank you all so much for your wisdom!

Number one for me is Prelief, prelief, prelief with lots of water. I also follow the IC diet even more strictly during flares and take Bladder Q. I also use cornsilk capsules, marshmallow root tea, horsetail tea, ( I brew them from loose herbs). Easier option: Throat Coat tea is great- the slippery elm in it is a great soother to the bladder and the UT. YOu can get this at any health food store or at Whole Foods. I use 2 bags per cup and let is cool before drinking.

Another necessity for me is a powdered green drink to alkaline my system first thing in the morning. I prefer those with a variety of green grasses, spirulina, algae, and probiotics all mixed together. You can buy a blend like this at most health food stores and at whole foods.

I also do a hot castor oil pack on my pelvic area. for directions on how to do one see this link: http://www.meridianinstitute.com/reports/castor2.html
It is so anti-inflammatory, I used it for endometriosis and I no longer have the terrible menstrual cramps I used to have for years. You can buy the pack and oil at whole foods and most health food stores.

I also use cold water to clean after urination- and that is major for bringing down the burning and inflammation of the tissue at least on the outside of the urethra.

Stress reduction is a must! If you enjoy your work, it can be a great distraction. :grouphug:

[Trishann]

When I am flaring:

Ice pack
water (plenty of it)
hot baths
pain medicine
Wear baggy clothes

[loro]

I didn't know where to post this question - has anyone tried an infrared heating pad - I keep getting this ad in the mail for it. It claims to be healing and better than regular heating pads. It is expensive. There is also a therapy called red light therapy - I don't know if it is the same as infrared or not. They both claim to penatrate tissue and promote circulation and reduction of inflammation.
yes I love mine and it works way better then a heating pad. There are diffrent rays of light like blue is for bacteria. Both visible and infrared light have been shown to effect at least 24 different positive changes at a cellular level. Visible light penetrates tissue to a depth of about 8-10 mm. It is very beneficial in treating problems close to the surface such as wounds, cuts, scars, trigger and acupuncture points and is particularly effective in treating infections. Infrared light (904nm) penetrates to a depth of about 30-40 mm which makes it more effective for bones, joints, deep muscle, etc.

Depth of penetration is defined as the depth at which 60% of the light is absorbed by the tissue, while 40% of the light will continue to be absorbed in a manner that is less fully understood. Treating points with Light can have a dramatic effect on remote and internal areas of the body through the stimulation of nerves, acupuncture and trigger points that perform a function not unlike transmission cables.

Light therapy stimulates the natural healing power in the cells of the body. This tool uses the energy of light, called photon energy, to stimulate the activity of certain cell components. By using photo energy, you have a simple, effective, non-pharmacological medical alternative. Conservative management of acute and chronic injuries and post-operative wounds have come to include the use of photo energy because it is quickly effective, cost effective, and easy to administer.

Light is energy that moves in a wave pattern. Light is also characterized by its wavelength in the electromagnetic spectrum. Red wavelengths are absorbed by the skin, muscles, tissues, and bone as well as working at the physical cellular level. The green diodes are believed to be absorbed by the Bio-Electromagnetic Energy Field which surrounds the body. Green is helps balance this field and relieve stress. Green is also considered a master color and is useful as an anti-inflammatory as well as in painful joints and allergies. Orange lights are a rejuvenating color. It is warm, stimulating and energizing. It boosts energy in the lungs and stomach. It is believed to also help muscle cramps and allergies. The yellow lights are believed to be a great stimulant for the sensory and motor nervous system as well as toning muscles. It is also great for arthritis and the lymphatic system.Most lasers produce a brilliant, visible red light. They can be large, and expensive. The more popular tools available today do not require this type of light emitting equipment, but use semiconductor diodes. These light-emitting diodes are less expensive and tiny, by comparison. They are also safe.

[willoweyes]

I use the following to get me through a bad day:

1. baking soda in water followed by tums
2. uro blue
3. an extra elavil if it is REALLY BAD.
4. ice
5. mat pilates
6. really bland foods whether i want to eat or not. not eating just makes my ic/ibs worse.
7. marshmallows (go figure, but it helps with the burning)
8. pain meds: tramadol (only when everything crashes at once).
9. bed rest

[willoweyes]

I forgot one:

leave the panties in the drawer. my mother almost died when i told her this one. but a) it saves time when you are going every 5 minutes b) they get all stained up from the uro blue and c) the clincher--my doctor(s) told me to do this one. also, no panty hose. bare legs or thigh highs only.

[Berkshire Road]

Lie in a dark room with heating pad in place, put on quiet, soothing music, and breather deeply and slowly. Take medication as appropriate (I have the ok from my doc to increase dose slightly during bad flares). All of this often leads to falling asleep, which is the best idea of all -- sleep it off!

[topcop229]

Set up the couch with pillows and comfy blankets, plus one or two heating pads...for abdomen and/ or back. I turn off the lights and turn on the tv to something meaningless that doesn't require thought. I drink a big cup of hot apple cider (made from a packet)...try to relax and doze off.

[bbtex]

Put on comfy clothes crawl in under the covers with my chihuahua, P.J., take my medicine and put on a favorite movie or read a good book. My heating pad will help me with the relaxation and usually I will fall asleep at least for a little while.

[irishnan3]

When I am flaring I try to relax as much as possible. I am lucky my son is a massage Therapist and he will do some trigger point therapy and swedish massage on me and it really does help. When I can't get that I do the hot bath, heating pad/cold seems to make me worse. Take my meds. and try to sleep. I think I cuddle my heating pad more then my hubby these days.
I flaring right now and none of the above has helped me so far. You just never know what's going to help on any given day.:dizzy:

[lonedog]

When I have a flare as I am now they typically last for months. The last one lasted 7 months. This one is just 3 weeks old but going strong. What can I do to stop these long flares?

[foofie]

Sprite has more caffeine in it than Coke or coffee or tea!!! If caffeine causes a flare up for you then Sprite will definitely hurt you. Take care...

[foofie]

for something like an Opium and Belladonna suppository, you would be better off to see a Naturopath (make sure it's a fully qualified Dr. of Nat.) to get this help. My Dr. of N. has helped me a lot. I am currently taking a natural alternative to Elmiron called IC Blend by Vitanica. It really helps with the pain and flare ups and it also builds the bladder wall back up on the long term. I ran out of it for about 10 days and was flat in bed again. Worth a try.

[SandyRN]

for something like an Opium and Belladonna suppository, you would be better off to see a Naturopath (make sure it's a fully qualified Dr. of Nat.) to get this help. My Dr. of N. has helped me a lot. I am currently taking a natural alternative to Elmiron called IC Blend by Vitanica. It really helps with the pain and flare ups and it also builds the bladder wall back up on the long term. I ran out of it for about 10 days and was flat in bed again. Worth a try.

I have to disagree with this statement that a naturopath needs to rx these suppositories. Actually it would be better if a pain management doctor or your general practitioner/internist rx'd them...whoever is managing your pain. I suppose any MD could RX them for you, but consistency is key in getting the best treatment possible.

[lauraheather]

If I am in a very bad flare, I up my dose of atarax to 150 mg spread out over the whole day. I wear comfy clothes and use my heating pad. I also take an extra muscle relaxer and use pain pills. I try not to overdo, spending as much time without moving as I can.

[CarolinTexas]

Atarax was my number 1 drug in preventing pain at night. I was in constant flare for 2 years. Valium, narcotics and warm baths also helped.

I had a nerve surgery last month (excision of ilioguinal and iliohygastic nerve) and it has killed all bladder pain. So, that's my rather drastic solution to coping with flare pain. If anyone wants more info, PM me.

I still need the Atarax for mysterious bm (colon?) pain in the morning. That's all that's left.

What type of suppository is belladonna/opium? Is it inserted vaginally?

[OrlandoP]

If I am in a very bad flare, I up my dose of atarax to 150 mg spread out over the whole day. I wear comfy clothes and use my heating pad. I also take an extra muscle relaxer and use pain pills. I try not to overdo, spending as much time without moving as I can.

Would you mind telling me what your usual dose of Atarax was/is? I'm on 25, and I get a lot of depression with it, but if I ramped it up and it killed the pain, I'd go with that. How many days do you usually need to ramp up the dose?

Also, do you get constipation with it?

Thanks much!

[lonedog]

Laura, I have increased my Vistiril from 25mg to 50 mg, my Elavil from 25 to 50, got back on Enablex to stop the spasms and am continuing with the Elmiron. It has been 4 weeks and I have gotten a little better but don't think I can take the 50 mg's of Elivil for much longer as it makes me a zombie. I see my Uro next week so I will see what he wants to do. His nurse has been talking about doing another Hydro but the last 2 I had last year didn't work so I am not real confident this one would. I think I will just keep taking the increased dosage of my meds for awhile longer and see if I can get back to where I was.

[lauraheather]

My usual dose of Atarax is 75 mg. I take it at night so I don't have the sleepy side effects. I started with 50 but soon realized that it wasn't enough. The doctor told me 75 was fine. And he wrote me a script for extra so I can up it to 150 if I have a flare. I normally spread those out a little bit through the day. I have found that if the flare is coming, if I take 100 mg at night, it will ease the flare significantly.
I haven't experienced constipation problems from the Atarax. I do have problems periodically but they do not seem to be directly related to that medication.

[OrlandoP]

My usual dose of Atarax is 75 mg. I take it at night so I don't have the sleepy side effects. I started with 50 but soon realized that it wasn't enough. The doctor told me 75 was fine. And he wrote me a script for extra so I can up it to 150 if I have a flare. I normally spread those out a little bit through the day. I have found that if the flare is coming, if I take 100 mg at night, it will ease the flare significantly.
I haven't experienced constipation problems from the Atarax. I do have problems periodically but they do not seem to be directly related to that medication.

Thanks so much, very helpful!

[Elle]

Just thought I'd chime in about Sprite having 4x the caffine of coffee, coke or tea...This isn't true -Sprite is caffine free, so if you have to have a soda, it's one of the better drinks to choose. It also is less harsh on the kidneys. I drove my aunt to dialysis 4x a week for several years and they even had signs on the soda machines that dialysis patients should only drink Sprite. Obviously, though, water is the best for us IC-ers!:)

[Jamey]

Witch hazel is great. I use something called Hamamelis Foam Bath. It's ph neutral so no irritation. You can find it at: Yves Rocher.com. I love all their products. They all seem to be really gentle.

[Jamey]

Hi all,
I found this really cool thing at CVS called a ThermiPaq. It's like a gel pack but it has some ceramic compound in it. You can heat it in microwave or freeze it. It seems to hold it's temp for a couple hours!! It cost me about $15 but sooo worth it. The worst part of hot/cold therapies for me is getting up every 10 15 mins to switch out or heat it back up. Says it was created my NASA. Oh yea, It stays flexible no matter the temp and has a neat cover you can strap on you.

[Jamey]

Miki,
I'm glad to hear I'm not the only one to pee in the tub. When I'm having voiding problems it's the only way to get my urethra to relax. I always go in the potty right before so I don't feel so much like I'm sitting in dirty water. I make sure the bath is hot and sit "indian style". That way the water haas good contact with urethra.

[boukie]

tell more about cornsilk tablets. I have seen this before on the internet. Does it really work well or just ok on flares? I am getting over a flare, pain all night long. I took a vicodine and it did not help, also took pyridium and it didn't help either. Any suggestions out there from anyone for flares?

[irishnan3]

boukie,
taking my pain meds., rest and if bath water don't bother you sometimes a long soak in the tub with baking soda (make the water white) that sometimes takes the sting out. hope you feel better soon.

[Arizonian]

I.C. Blend is an all-natural product with cornsilk in it. You can buy it on-line or from a naturopathic physician. It helps with the burning upon urination.

[Eline]

A simple one for mild symptoms:

I curl up in bed with dvd's. It's a double winner. The movie helps diverting my attention. And my laptop works as a heating pad. :)

[judy45]

When I am flaring it depends on why. A food flare can usually be helped with baking soda, heating pad and warm baths. Also Urelle has worked wonders for me. In a sex flare, the baking soda is useless, but I will use the other things and add a valium suppository for the urethral pain.

[CarolinTexas]

Hey Judy45,

So is this Valium Suppository vaginal? Did your pharmacist compound it for you? Mine said he had never heard of it (of course).

Thanks for the info,
C.

[elizlamb]

I used to get anxious just thinking about a car ride over 30 minutes! So much so that I would flare before I even got into the car. I now use a large beach towel rolled up and then shape like a "U". Place it on your seat with the "U" under your bottom. I find that this relieves the pressure and vibration. You could probably buy a piece of foam from a craft store and cut it and even cover it as a pillow.
Hope this helps

[Maura]

There is such great advice on these boards! Many thanks!!!

I am the IC patient that doesn't have much of a problem with food -medications is my main flare up!(certain chemicals such as additives and fillers are a big problem)
This prevents me from taking medications such as cholesterol meds and other things that are helpful in other areas.

If anyone else is sensitive in this way, I wanted to tell everyone my last experience with Tylenol. For years I have been able to take the geltabs (round, yellow and red.) The company changed the product and added ingrediants!!! One of the ingrediants is an artificial sweetner, ugh! On the front of the box it reads, easy swallow tabs and it's all red!!!
Within 20 minutes of taking, I had the lower cramping (bladder is trying to get the chemicals out) with urgency and frequency every 10 minutes for 4 hours! Just the worst feeling ever....and is why when it comes to other drugs that are supposed help one live longer, well my decision is for quality of life verses quantity!

I called the company and complained and as nice as they were, they said they had to do it because of slowing sales. I told them to change the box not to add artificial additives and dyes. If there were 300 of us IC patients calling in, maybe they would take notice but of course, they have never heard of IC!

Anyway, we should have a subject with the heading, medications that irritate the bladder. There is plenty on foods and diet that are helpful.
How about the IC patient that has this type of sensitivity? I really don't think people realize that when you are on several meds and the company makes changes to the drug,you may go into a flare, and never know it was the new additive they put in the drug.


Tough disease for sure:(
Wishing everyone a happy and healthy 2009!

[irishnan3]

Maura
I had a problem taking the Elmeron (not sure I spelled that right) the actual drug used for IC. I had terrible reactions from the capsule and medication. I also have problems taking any kind of capusal medications. It really makes it hard to get the medication I need at times. I have to always talk with the Pharmacy to see what type of bill they are giving me and if I could get it in regular pill form. I was taking Celebrex for quite some time and had to stop for my resent surgery. My bladder seems to be a bit more at ease since I stopped taking that medication, I now take Aleve and it doesn't seem to bother me. As with food and drink, we have to check and test things before we know its ok for us. Hope you are well and Have a wonderful Christmas or Holiday season.
Patty

[nevergiveup]

Drink lots of water to flush acidic urine out... take two tums if the prelief is cutting it alone in a case that I over did it with acidic food...Take extra prelief on next meal...Not eat till my bladder calms down...plan out my foods so the flares are spread out thru the week....(if I allow minimal acidic food item)...take a hot bathe let hot water spray onto my bladder area...it calms the muscles and bladder down... in extreme flare I drink a liter of bottled water while literally sitting on the toilet and every 5minutes pee the urine out till I flushed most bad urine out...I dont enjoy doing this because my bladder hurts from expanding so much so fast..:toilet: ....only eat safe foods during a flare no experimenting....watch a movie or read to distract so flare can pass...Make sure I take my elmiron...read my daily journal so I wont feel so down in the dumps that I have made some progress compared to when I first started ic symptoms....elevate my legs while asleep at night so I can some what lie flat in bed...take my atarax to get sleep instead of peeing all nite...Hope these ideas help :smile tee

[nevergiveup]

Can someone tell me what is cornsilk and how does it help with flares. Also where can I buy it and in what area of the store is it sold?

[ICNDonna]

This is a very old thread. I will be closing it.