Elavil -- Does it help frequency/urgency or just pain? - Interstitial Cystitis Network Support Forum

***Sarojini*** · 05-24-2004, 11:15 AM

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 · 05-24-2004, 11:18 AM

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 · 05-24-2004, 12:31 PM

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:

kelly McC · 05-24-2004, 01:14 PM

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** · 05-24-2004, 02:40 PM

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 · 05-24-2004, 04:51 PM

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** · 05-25-2004, 03:41 AM

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 · 05-25-2004, 05:18 AM

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.

JessicainArkans · 05-25-2004, 06:42 PM

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 · 05-26-2004, 02:19 AM

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

***ICNDonna*** · 05-26-2004, 02:58 AM

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 · 05-26-2004, 09:01 PM

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 · 06-02-2004, 05:19 AM

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!!

God bless all of you who are suffering!
Jessica Day

Julie Smith · 06-02-2004, 09:47 AM

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 · 06-02-2004, 10:02 AM

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)