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10-14-2009, 06:59 AM
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#1
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ICN Member
Join Date: Sep 2008
Location: Upstate NY
Posts: 121
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not sure anymore what I should be doing??
I have been on elavil 25mg and that wasnt helping dr moved me up to 50mg at night before bed. The 50mg helps me sleep, i dont wake up at night at all. Which not a good thing, yes it is better than waking up 6 times to go to the bathroom but in the am I so have to go and for the rest of the day I am in pain. so the doctor said to take the elavil 25mg one night next night take the 50mg and then the next the 25mg. Has anyone ever heard of this? Neither dose is helping with the pain. I am so frustrated?
__________________
[i]Dx: 10/08
Meds
Elmiron 3x a day
Prosed 3x a day
birth control to try and stop period so no pain, (even though my tubes are tied)
Effexor XR 1x a day, 75mg
Elavil 50mg before bed
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10-14-2009, 11:20 AM
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#2
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ICN Member
Join Date: Aug 2002
Location: Saginaw, MI
Posts: 27
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I have also been bumped up to 50mg at night. It does help with sleep and I sleep sound. If it isn't helping other symptoms I know at least I get a good night's rest. It also has lots of unpleasant side effects like increased hunger, dry mouth, feeling dizzy upon standing, etc. Not sure if it is touching the frequency, urgency and pain yet but keeping it aboard anyway. Do mention your continued symptoms with your doctor. There are other treatments you can try in addition to the elavil like anti-histamines, elmiron, antispasmotics and muscle relaxers. And make sure to keep your diet strict while your bladder is mad. I hope you find some relief soon. I'm trying to get my pelvic area calmed down also. Stay strong
__________________
On IC diet and drink lots of bottled water
Meds:
Baclofen 10mg 3x daily (muscle relaxer)
Elavil 25mg evening
started cystoprotek 9/28/09
want to try atarax/visteril
elmiron too expensive
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10-14-2009, 03:16 PM
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#3
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ICN Member
Join Date: Jan 2009
Posts: 504
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I agree, you probably need more than just Elavil. Elavil helps me a little, but only a little. I am on a lot of meds right now, which sucks. But if you read or watch any of the conferences from the ICA, the doctors say you need to treat 3 things: the oversensitive nerves, the inflammation, and the depleted GAG layer. That's why Elavil helps the nerves, then you usually do Hydroxyzine or something to help reduce mast cell activiation and therefore inflammation, and then Elmiron for the GAG layer. There are of course other meds for the same things, like Neurontin instead of Elavil, etc. I take those three I mentioned above plus the OTC supplements. It's a loooong road, but I feel like veeeerrry slowly I'm improving little by little. And of course for any of the meds to have a chance, you need to do the diet. I tried some meds before I tried the diet and by themselves they didn't help. Because my bladder was being inundated with no-nos like vinegar. No more of that!
I hope you feel better soon! And please try to find a specialist who knows what to do with IC if you feel your current doc doesn't know.
__________________
Female
Currently 33 Years old, live in Sacramento, CA
July of 2008 - pelvic pain began, coupled with bloating and IBS symptoms, which lasted 4 months then went away after stretching/hot baths everyday. Urinary frequency began in November of 2008.
In-office Cystoscopy didn't find anything.
Main symptoms: Frequency mostly. After several months of frequency, I developed mild to moderate bladder pain but that is now under control. Completed 8 months of physical therapy.
Had LEEP procedure on cervix in January.
Currently on: IC Diet, Elavil (20mg), Elmiron (400mg/day), Hydroxyzine (50mg), and Cystoprotek and Desert Harvest Aloe.
Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol.
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10-14-2009, 03:35 PM
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#4
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ICN Member
Join Date: Feb 2008
Location: Charlotte NC
Posts: 353
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Sleeping all night, painful void in the am
I don't take Elavil but I know what you mean about sleeping so soundly that you don't wake up to void any. When I do that I void a lot in the morning and the pain begins when walk to the bathroom, then hurts while I am going and afterwards, my bladder is aching so badly that it is difficult to walk. Seems that we can't win. I don't know the answer, just know how you feel.
Good luck,
Sandra
__________________
Diagnosed with IC in 2/08, Have had IBS as long as I can recall, Fibromyalgia, Chronic Fatigue, Depression and Anxiety (increased by the IC diagnoses and issues) PCOS since I was 18, My IC specialists suspects, as do I, that I have had IC for at least 20 years- just never found the "right" Dr, or had a severe flare like the one that led to my diagnosis.
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10-14-2009, 03:50 PM
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#5
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ICN Member
Join Date: Sep 2008
Location: Upstate NY
Posts: 121
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thanks for all your responses. I do take the elavil but i also take elmiron, prosed, effexor xr and birthcontrol. lol I was on a hystimaine(sp) before but I was feeling pretty good after the hydro so she had me stop that, I would if I should call tomorrow and ask about taking that again, i still have some, and 5 refills, at this point i will take what ever meds they will give me to get rid of the pain. I do the IC diet, and found my worst enemy to be chocolate milk and soda, gave those up along time ago I also take prelief with every meal lol
__________________
[i]Dx: 10/08
Meds
Elmiron 3x a day
Prosed 3x a day
birth control to try and stop period so no pain, (even though my tubes are tied)
Effexor XR 1x a day, 75mg
Elavil 50mg before bed
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10-20-2009, 07:28 PM
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#6
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ICN Member
Join Date: Mar 2006
Location: East Central IL (near Champaign and Bloomington)
Posts: 1,477
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I had to work my way up slowly to the 50mg of elavil. I had to start at 10mg, and slowly work my way up because it would put me into a coma if I took a larger dose. My doc gave me 10mg tablets and told me to work my way up at a pace I was comfortable with. I now take just one 50mg tablet. Good luck!
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11-10-2009, 04:51 AM
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#7
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ICN Member
Join Date: May 2005
Location: OK/MI
Posts: 650
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__________________
Jen
I have: IC, IBS-C, arthritis, carpal tunnel, hypoglycemia, RLS seasonal allergies, sinusitis, depression, anxiety, infertility, hormone imbalance.
Have tried too many things to list, e-mail me for a list. I recommend reading Screaming to be heard by Dr. Elizabeth Vliet
IC in remission for over two years now Most health conditions in remission since 7/06. I take Ortho Tri Cyclen Lo, eat Fiber one bars.
Married for 15 years, have 1 cat that I consider my "son"
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