Elavil -- Does it help frequency/urgency or just pain?

[Sarojini]

Hi all,

I recently decided to quit the DMSO treatments I was getting, because while they helped a little (for a few days), they didn't seem to help enough to be worth going to the doctor every week to get them. Plus, it seems like my pain is actually a little WORSE now than before the instills.

I am thinking of taking a break from instillation therapy for a while and asking to try Elavil in addition to my Elmiron and Atarax for a month or two instead.

I know it can help a lot with the pain of IC (which would be great), but what about the frequency and urgency? Does it help with those too?

Thanks,

[mayray518]

I tried DMSO for a year and it worked and then my body became immune to it. I then tried elmiron and it did nothing. I then tried elavil. It was my lifesaver. It took 3 months to work at 50 mg and I hated the side effects (tired all the time) but I stuck with it. I have gotten myself down to 10 mg and 6 years later it is still working.

[Iris]

Hi Jen, I am on Elavil, and it has certainly helped me a whole lot. I have been on it just under two years, and it has helped with the urgency and frequency, pain, and I have been able to get a good nights sleep. I still have to get up once a night sometimes, not always, but for me, it has been a life saver. I do get the craving for sweets, and I have put on some weight, but my IC and my bladder symptoms, have definitely improved. Keep us posted, hugs and love Iris.:thumbsup: :hi: :woohoo: :flower:

[kelly McC]

I cant say for sure it has helped with either during the day but at night it has helped me not get 4-5 times so I can get some sleep. I sometimes will get 1-2 and sometimes not at all since starting elavil.
Kelly

[kadi]

Yes, on Elavil (20mg) at night, with Ditropan 5mg at night I sleep through most nights, sometimes get up once...

If I'm flaring, doesn't do much for frequency during day, but it's a major godsend at night...

[theclownster]

Hi Jen! I'm not sure what the Elavil does exactly, but the combination of Elavil, Atarax and Ditropan XL, I feel almost like a normal person. I can go hours without having to go to the bathroom, which seemed like a dream a couple months ago.

Personally, I felt an increase with frequency and urgency while on the Elmiron. Once I stopped that for good, it's been so much better. I can't even describe the difference. I sleep through the night most nights - and usually if I do have a bad night it only means i get 1-2 times. I used to get up anywhere from 3-6 times a night. I also use prelief daily with everything I eat (including when I take certain pills).

Hope this helps a bit. Give it a try and see what happens. We are all different as I'm sure you know.

Take Care and I hope you find some relief soon!
Jennifer

[kadi]

Yeah, I had the same reaction to Elmiron, felt like a constant tickle in the bladder. ... Wish I could take Atarax, I think my IC is allergy related, but can't tolerate Atarax or Benadryl anymore, maybe from interaction with Elavil, but who knows??? Dratted disease...

[poetgirl]

Yes, Elavil can help with the urgency/frequency because it has a mild sedative effect that slows down the muscle contractions. It helped me soooooo much. I rarely have to get up at night to pee and I don't have any more of that pelvic area and urethral pain I was having, which was a result of all that spasming.

I'm debating weaning myself off it because I've been doing so much better but we'll see...the only side effects I've had from Elavil are morning grogginess and sometimes dry mouth, both kind of annoying but not a big deal.

I hope it can help you. :kiss:

[JessicainArkans]

Is elivil the same as Amytriptaline?
Amytriptaline has helped immensly with getting to sleep at night, it does not seem to keep me a sleep all night I wake with periods of wanting to go for a jog, I usually just lay in my bed and tickle my hands and arms, sounds bizarre but it has always calmed my nerves, when I was a kid I would sit on the commode and tickle me sides and my belly cause they hurt so bad (did not know about IC then!)
I got off track, the Amytriptaline has made me very retentive, as if I needed more retention (hubby say's I am anal retentive! ) WELL!! For several weeks now, about over a month it is very hard for me to void, I have to really push to get it all out, I know this is not good to do but what should I do from here? This Amytrp. is the only real good drug I have found that helps an array of symptoms and since I took all my cares away from my apathetic Urologist and handed my cares to my wonderful family physician. I do not want to tell him about it cause I do not want him to take the drug away, it really is the only drug that has helped.
Does someone have an answer?
Thanks for your time!

Jessica

[gloriabono68]

I read all of these things where everyone else is finding relief and i am sooooooooooo glad of that...........but i am so confused about the elavil and the atarax.........I have asked my uro about it and she doesn't seem to want me to try anything except what i am trying........i have been doing the bladder cocktails twice a week for two months and now i am down to one a week ..this is my third month. I am not doing dsmo because it makes my IC worse , i dont know what this one is called i am currently doing.
The only thing i can tell its doing......is i pee less amounts when i go. Hasnt really helped the constant frequency.......nor do i get any rest at night.........i am a wreck.........my nerves are shot from the constant going and not getting any sleep or rest.......i am about ready to pull my hair out.......i have been taking elmiron too for the past three or four months .........can't tell its really helped or really made anything worse.......other than make my stomach look really bloated........I already weigh too much from a past paxil experience , albeit thats the best my IC has ever been so i dont want to take anything to make me gain any more weight....and i bet that the elavil would........she said the atarax would make me too sedated probably.........which at this point would be a good thing........trust me on that one...... how much control should i be taking here? should i ask to at least try these other medications to see what happens?? i am so tired and so tired of being miserable..........i just don't know what to do anymore. I take two ditrapan xl 15 mg a day and four urelles a day , three elmiron's a day........plus the cocktails........and its just not really getting any better...........she said after this round she would see if i could be a candidate for the interstim therapy.......
BUt then i read about all these other medications i havent tried.
someone please please help me sort all this out............
gloriabono@yahoo.com and i also use instant messanger on yahoo and khayes68 on aol instant messager................
thanks
gloriabono:( :confused: :rolleyes: :pray:

[ICNDonna]

Elmiron can take up to six months or more to become effective so I wouldn't give up on that yet. And interstim isn't usually considered until other treatments and medications have failed.

If your current uro is unwilling to have you try other options, you might want to think of a second opinion.

Warm encouraging hugs,
Donna

[peiti]

Jessica,

How much Elavil do you take? I take 12.5mg Elavil once a day (cut half from a 25mg pill). My dr told me if I took high dosage, it could make me hard to urinate. I was once on 25mg a day, but the side effect of difficult urination was gone in several days.

I like Elavil so much, with only 12.5mg a day, my pelvic pain and bladder pain are gone (It started working on the second day). Now I have to be very aware of what I eat so I don't put on weight.

[JessicainArkans]

I take 50 mgs of Amytriptaline at night, you would think that would be enough to knock out a horse but I still find myself with sleepless nights frome all the IC pain:(
Oh well, I have to survive this, this world is too wonderful!!:pray:
God bless all of you who are suffering!
Jessica Day

[Julie Smith]

Hi to all you with difficulty peeing. It's so bad that I have to run the water for up to 15 minutes. During the night when I'm sleeping I wake up about 2-3x. I know pushing is the worst thing to do so I sit and sit and try to relax.

My pain dr. told me after 3 nerve blocks I may gain weight and have this difficulty. Even when I'm out it's hard if the water won't stay on. He also said some medications will cause this and that's why he can't prescribe more for me. That's ok, I'm like a zombie anyway and can't drive.

Hope this helps,
Julie:toosh:

[gloriabono68]

SHould i ask my doctor to try the elavil and atarax before i do the interstim therapy?? I keep reading where lots of you are getting relief from that..........but she hasnt let me try anything like that yet.........should i be more persistant in that and just see what it does?? i just take so many freakin pills already i hate adding more but i am getting desperate and not sure about having the interstim..........
thanks
kristi ( gloriabono)

[Julie Smith]

atarax is extremely helpful, i take .25 mg in am and 75mg. in pm. This dose has been increased over a 12 month period. I really noticed a huge improvement w/ this higher dose.

Yes, by all means, look into meds. talk to all of us and then talk to dr. Your'e in charge of your body, no one else. 4 mos. ago I started seeing a pain dr. for pain meds and they really help, although i am really woozie most of the day and am not able to drive at all.

Uro prescribes...atarax,elmiron 200mg.am and 200mg pm.

pain dr. prescribes demerol, valium, nuerontin 300mg 4x day, vicodin 7.5 mg. for breakthrough pain.

Pscychatrist prescripes wellbutrin xl 300mg, paxil cr 25 mg. and xaxanax 2 mg. to sleep.

When you see a dr. pain or uro or whatever, it's a partnership and you have to speak up and ask questions and ask for what you need.

Best of luck to you,
julie:kiss:

[gloriabono68]

Yes thank you...........I am doing alot of research and printing out some stuff to take with me when i actually see her again in two weeks. THis time i will have it ihand and can say , why arent we trying any of this...... luckily i do not have alot of pain so , at least theres that but the constant going and not getting any sleep cause i cannot stay out of the bathroom , and the depression it taking its toll. alot of the antidepressants actually make my IC worse.........i wish i could find one that didnt or didnt bother my IBS>.... or make me gain weight or have severe sexual side effects.......sometimes i think its better to stay depressed......i don't know......this just gets more and more confusing and complicated as i go.......
I am glad you've found some things that are workingfor you........i hope i do soon too.
take care
kristi ( gloriabono) :thumbsup:

[Julie Smith]

Even though I am feeling better, look at all the meds i'm taking and still not able to work and zonked out most of the time. So.... it takes time, lots of time to find what works for each and every one of us, it's not fast. Hang in there.:kiss:

Take good care,
Julie :kiss:

[SharonA]

Jen...:hi:

Sorry it has taken me such a long time to reply to your question about Elavil but, as you know, I have been out of touch for a while.:D

Elavil has been a life saver for me. From the 1st day I began taking it, my IC symptoms have become fewer and less severe. That includes the frequency/urgency issue, also. My doc began having me take 10 mg and increased it to 50 mg. Now I take 25 mg at night, every night. I consider it my "wonder drug". I have tried to take a lower dose but, below 25 mg causes me to flare within a day or two. Yes, I have gained the usual pounds and am constantly trying to take it off. I would gladly stay at the weight I am right now if it means that I have my life back. Of course, that does not mean that I do not try to reduce. After all, vanity rules...:D

[gloriabono68]

I am considering asking my doctor about being put on the elavil but already being a fluffy chick......and gaining alot of weight on paxil ( still cant get it off and its been three years since i stopped taking it ) was just wondering exactly about how many pounds did u gain ..........cause if its more than 10 i don't think i will try it.
And i know this is personal but does it have sexual side effects??
everything else i have tried messes up that and or bothers my IC to the point i cannot take it.
i so need some relief............so i am willing to try anything.........at least for a while to see what happens.........

kristi ( gloriabono) :rolleyes: :confused: :( :pray:

[SharonA]

Kristi...:hi: Sorry it has taken me a couple of days to respond to your question about Elavil. I just missed your post...senior moment??????

I have gained the usual Elavil 20 pounds over about 2 1/2 years that I have been on it. I am now in the process of being able to get rid of 5 of those pounds and am trying for the rest. I just have to watch everything I eat and not give in to the cravings for carbs and sugar that I have always had trouble with, even before Elavil. I have always been a bit "over-stuffed" and have gained and lost probably a thousand pounds during my lifetime.

Yes, there may be sexual side effects that go along with Elavil. I have lost most of my libido but I went through an early menopause many years before the first symptom of IC. I do not now nor have I ever taken hormone replacement so I am not sure if Elavil is the cause of my loss or if it has everything to do with post-meno. I was having trouble with desire before IC. Thank God I am married to a wonderful man who is very patient. He understands that it has nothing to do with how I feel towards him. We have great communication between us and we have discussed this all the way through my change and IC. He is just happy that I have my life back and am not in constant agony because of IC.

Hope this answers your questions. I will be glad to help in any way I can.:)

[gloriabono68]

Thanks........and yes that answers my questions........i really appreciate that........
Hope you are having a good week............

kristi

[sing_to_you]

Hi there girl how are ya.
Sorry the treatments did not work well for you. I know for the longest time here you were really holding fast to them and wanting it to do good for you. I gotta say girl you did give it your Best shot. As you know I did do the treatments too, I had 5 only though but still I know what it is like to have them. One a week every week. Each one seemed to make me more and more uncomfortable, I seemed to be getteing more sore as they went along. It has been almost 2 months now since I had a DMSO treatment and I am doing much better now. I am taking the Cysta Q pills that the ICN shop sells. And I think I can truly state that they are doing me some good. Each day I wake up I am feeling more and more like a normal person, so they must be doing something for me. I also have IBS So I take Meds for the pain of that and they help with that. But I really think you ought to concider giving the Cysta Q a shot. It has a lot of good stuff in there for your body too not all this stuff that is bad for you with harmful side effects. I take One pill at the morning and One pill at bedtime and that is it. I stopped the Elmiron when I stopped the DMSO also. I am trying to give my body a rest and it seems to be working so far so good. I have not been on latley cause I have actually been out fishing with the HUbby and having some fun for a change:thumbsup: Been a long time. Sure wasn't happening when I was doing the DMSO, I was flat in bed in PAIN!!:( And I think if I am not mistaken isn't that the Oppisite of what it is supose to be doing for you:confused:
So just wanted you to know what I am doing and maybe you could give it a wirl. Cause I was taking the Bladder Q but I was not seeing any results with it. But I think I am with the Cysta Q have a wonderful and peaceful night
sing_to_you

[ellienor]

has anyone had increased urgency with elavil?
I took some last night and i was up every hour peeing.
It eased up today,,, then when i took some more after dinner..
I have lots of pressure off the roof again!
I didnt eat any triggers at dinner either.
thanks

[mags]

I was put on elavil and was excited about trying it until it caused retention. I started out at 25mg and was miserable and then it was reduced to 10 mg. It seemed okay at first but then after a week at 10 i started having trouble going again and it is such a miserable feeling that i can't stand it. Has anyone had this feeling go away? I want to take it, but i just can't seem to.

[SrMaggie]

I did not like the side effects of elavil. I started craving sweets. I gained about 15 pounds. It is true that elavil did not MAKE me gain weight, but at the same time it made it favorable for weight gain. I think that the retention would be okay for me if my bladder were larger. But it's not and so I have to bear down sometimes to get relief. How graphic one can be on these boards, because we can't see the audience.