Has ANYONE ever successfully gone OFF elavil/amitriptyline?

[CareBear]

I have been on elavil for over four years and quite honestly it is making me stupid!!! I can't remember conversations I've had with my husband, what I had for breakfast, etc... I know it is from the elavil and I want to go off. Has anyone successfully weaned off this med? If so:

1. How did you sleep?
2. What did you do for pain?
3. How long did it take?
4. How did you do it, so I can talk to my doctor?

I am desperately looking for advice from someone who has been on elavil and gone off it!

Thanks!
Cari :headbang:

[windwalker]

I was on it for only six months, it helped in the beginning but didnt do too much. I was started on Ditropan xl 10 mg's twice a day and that did a lot more for me than the Elavil. Its a lotta ditropan that way, but even taking one 15 mg a day did nothing, thats the only way I got relief.

[CareBear]

Windwalker,

I've heard of Ditropan, but don't really know much about it. What is the classification? Do you still get breakthrough pain?

Cari

[ICNDonna]

You need to work with your physician to taper you away from elavil. Please don't try to do it on your own.

Donna

[green_the_fish]

Hi CareBear :)
I'm one of those who has stopped Elavil successfully. I first took it at 10mg, then 20mg. I took it for a couple of months, then became upset due to the same symptoms that you're experiencing. I asked my uro if I could go off, since it wasn't helping my pain anyway, and he said it was alright.
Since 20mg isn't too high of a dose anyway, I didn't wean off. I just stopped taking it. I did experience some withdrawal syomtoms, but it wasn't much worse than when I went off of Zoloft a few years back.

As for your questions...
1.) I think my sleep patterns were a bit off for a few days, but I got over it. When I couldn't sleep, I used some OTC meds.
2.) I take NSAIDs on a daily basis, and have a supply of breakthrough pain meds like Percocet and Ultracet, as I did then.
3.) How long did it take? Do you mean, how long did it take for the withdrawal effects to go away? Only a few days, really. I had to miss some school, but that's no big loss :lmao:
4.) Well, I just stopped taking it, but my circumstances are different from yours. You should probably step down over the course of a few weeks.

Can I ask you some questions now?

1.) What other treatments have you tried for your IC?
2.) How many mg of Elavil have you been on?
3.) Did the Elavil ever help you with your pain?

I think the higher your dosage, the longer you should take to go off. Also, if it was working for you as a pain med, you may have to deal with an increase in pain. I definetely think you should talk to your doctor about this before making any decisions.

Good luck!

[CareBear]

I have been on 20mg. for the last 4 years. I have tried Elmiron--hated it!! It made me sick. I have had excellent pain relief/prevention?? whatever with the Elavil. I am mostly pain-free which is great, but I am losing my mind, which when you have two little kids is not so great.

This morning I made banana bread only to realize that I forgot to put the SUGAR in!! Duh! I swear either the Elavil is making me like this or I am showing early signs of Alzheimers!!! I have way too much to remember to be forgetting stuff!!!

I have tried once or twice to go off, but seriously, if I don't take it at night I can't fall asleep. My body now needs it to sleep, which is bad. While I wish I could survive on no sleep, I can't.

My doctor is very nice, but he has no clue about IC. I honestly don't think he even knows what it is?!?!?!??! I can tell by when I go in and he kind of mumbles and asks how my bjdkjsadfj is. It is kind of cute and funny, but when you're trying to get some answers, its not so cute. So, really I'm just looking for some direction to go back to him with. From the apparent lack of repsonses, I'm guessing that either not many people are on Elavil, or those who have started it never get off. That scares me!!!

[Butternut]

I was taking Elavil 10 mg for a few months, gaining weight. I began cutting the tabs in half for a few wks then into fourths. Now off completely.
I am down to one Hep/Bicarb/Lidocaine Instill per month. I ate some hotdogs and sausage last weekend and have been suffering pain and some burning since. Before making the food error, I was feeling pretty good. I called for an Instill. for in the morning. We'll see....
Much experimentation! I just don't want to get worse. Please God help me to stay on the IC Diet.

[ese]

I was on elavil for quite a while, up to 125 mg. I went off of it cold turkey once, and that was not a good thing. Going off like that made me sleep off and on all day and night for nearly 2 weeks. Another time that I went off of it, I tapered down slowing by taking my regular dose every other day at first and then slowly lowering the dose over about a month's time. Even though I went very slowly, I still had some jitters and tiredness - but nothing like I had going cold turkey. I take Tylenol PM now to help me fall asleep. Definately talk w/ your Dr for advice, though. Good Luck!

[windwalker]

Sorry I didnt get back to you right away, yes I have breakthrough pain, even flared yesterday. I agree w/donna about talking to the doc before just going off those.
Ditropan is like Detrol the "gotta go" med, but a different med in it. Stops the feeling of frequency/urgency for me. (except for yesterday ;) )
Hope I answered it for ya. Take care :)

[trytosmile]

I have been on it since 1988. It was original given for muscle pain for my back due to a motor vehicle accident. 10 mg at night. It helps my back muscles relax so that I don't toss and turn all night.

Sleep patterns, out within taking an hours. My worse side effects are dry mouth and I am groggy in the am.

[green_the_fish]

Hey there, Care Bear (I rhyme! :lmao: )

I was just thinking about you, and I thought that perhaps you could try an SNRI medication to balance out the side effects of the Elavil. It would be pretty unorthodox, but hey, whatever. SNRIs (ie: Strattera) are very loosely in the same class of medication as Methylphenidates (ie: Ritalin), but they are not stimulants. There was a period of time when I wouldn't have trusted any of these kinds of ADHD-targeted meds as far as I could throw a bottle of 'em (due to what I think is unfair marketing to children), but my father has had very good experiences with Strattera. Whenever I hear news of him from my mother, she always mentions how much better he feels, and how he attributes it to the Strattera. While he is taking it to treat Adult ADD, it might be beneficial to balance out Elavil's side effects for you. That might be an option of you really want to stay on Elavil.

However, if you want to quit (I think that's what I'd pick if I were you), it's really not that hard. Don't scare yourself about it too much. Elavil has a half-life of 24 hours, which means that in just one week, only a fraction of a miligram will remain in your system. As far as med detox goes, that's not too rough. Also, there are other medications that might be able to help you in the same way Elavil has.

If I was your doc, here's what I'd recommend:
Neurontin , 300 mg x a day... this is a med for chronic pain, but it's a GABA Analogue instead of a Tricyclic Antidepressant.
Tylenol PM, as needed. The first week or two after quitting might be rough sleepwise, so you should have some on hand.
Percocet, as needed. Again, the first week off might be hard for you, since the pain that the Elavil has been blocking off might come back. You might wanna have some pain meds on hand, just in case.
All of the medicines above are ones that I have personally tried, so that's why I recommend them.

Be careful about asking for any Percocet or Vicodin though, the way some docs are today, they'd think you asked for a large rock of crack cocaine and some heroin syringes :rolleyes: If you get it, though, it comes with an advantage: it aids sleep when taken at night.

In any case, there are still a lot of treatments you haven't tried. Ditropan XL, Detrol LA, pain meds, DMSO, Hydroxyzine, Prelief, etc. Did you know that some ICers who couldn't tolerate Elmiron orally have had success with Elmiron instills? Apparently, it doesn't mess with your stomach and bowels much when it's just cath'd into your bladder and then voided back out.
Are you good with caths? I know I'm not... but if you are, you might wanna look into Elmiron instills.

You doc sounds like... well, like a typical GP. They don't really know much about IC or chronic pelvic pain. Maybe you should go to a urologist (please don't tell me he is a uro, please!) :bonk:

Okay, I've been ranting for a while now, so I need to add a disclaimer: I have no medical training what-so-ever! I'm just an older teen with an achy pelvis and a lotta free time to read medical stuff. High school ain't even over for me yet. So, don't take my advice without asking a very smart, open-minded doc first! And if you find a very smart, open-minded doc... please give me the name! :lmao:

[CareBear]

Fish,

You're killin' me!! :bow: in a good way, of course. You know more than my doc!! No he's not a uro, he a family prac. So, he sees all ages. I am in a lovely HMO and he holds the key to any referrals to a Uro and up to this point he's not willing. But actually I haven't really been pushing it since I've been feeling pretty OK most of the time. My GYN gave me some vicodin, but I don't want to take it unless I'm dying. Because having drug addition problems in my much younger years, I don't want to go back there and she told me she won't refill it. So, I mostly live on large doses of Ibuprofen and Urimax when needed.

I really hate having to taken ANY medication at all!! :mad: Up to this point I felt I had the choice between narcotics and antidepressant therapy--neither is a very good choice, so I chose what I thought was the lesser of two evils.

I did try doing the hydroxyzine or however you spell it--sorry, its late and i'm tired. It gave me some trippy dreams and the pain was really bad. So after a week, I stopped and went back to the Elavil.

So, are you telling me that if I can make it one week off the Elavil, I will be OK??? Or are you telling me that the pills I took tonight will be in my system for a week and who knows how long the effects will last??

What do you think Dr. Dori Fish?? :kissing: :) :woohoo: :bonk: :idea: :biglaugh:
I love these little guys!!!!! They are tres cute!

Cari

[CareBear]

Oh, I forgot....
Elmiron made me sick
Prelief made me sick
and I have had enough "prodecures" and I am unwilling to risk infection or worse to let them shoot my bladder full of Clorox bleach aka clorpactin or driveway cleaner aka DMSO

[green_the_fish]

Hello, my murder victim!

I wonder, why doesn't your doc wanna refer you to a uro? All my docs have been quite eager to ship me off to the uro as soon as the urine cultures came back negative! Once you've got this pain stiff sorted out, you should probably go to a uro, if only to get a sample amount of Ditropan XL and Detrol LA. I don't mean to keep shoving pills up in your face, but they really have helped a lot of people on the boards.

Oops, I didn't know you were a recovering addict! Looking back, my crack rock and heroin comment might've not been very sensitive. Sorry if I offended you, that's just my sense of humor.
I see your point now, as you could very well have to choose between antidepressant therapy and narcotics for your pain problem, IF you restrict yourself to oral therapy. There is a chance that the GABA Analogue medication Neurontin (gabapentin) might work for you, thus avoiding the problem. The best place to get Neurontin would be a pain clinic.
Other than that, though, the only thing I could think of is trying some kind of Strattera-like medicine to cancel out the side effects of Elavil. Strange as the concept is, I've had to take medicines to cancel out the side effects of other medicines before. Cough syrup with Ditropan XL, Imodium AD with Elmiron, etc. You'd definetely have to go a pain clinic to try an unconvention plan like that, though.
If you're willing to try non-oral therapy, there is a lot more out there. I could go on, but maybe you're not into that anyway. Have you considered non-oral therapy, such as nerve blocks?

It sucks that you had bad experiences with those other IC meds you mentioned :( Most of the meds that made you sick just had no effect on me. I guess my body is more tolerant or something. Then again, I don't have an IC diagnosis. I'm just weird and sick for apparently no reason. Oh, and I hate caths! Those things are horrible, so I don't blame you for not wanting DMSO-type treatments. Moving on...

After you are off the Elavil for a week, there will be none of it left in your body. You will be detoxed of it. For me, that was was when the side effects left. We're all so different, I can't really predict how you'll react. To take a guess: your biggest problem will probably be sleep. Other than taking sleeping meds, OTC antihistamines, muscle relaxants, or opiates, I can't really think of what might help your sleeping problem.
Do you have a job? If you don't, then maybe you could adjust your schedule to accomodate some of the sleep disturbances you might have. If you start having a real tough time sleeping at night, do you know of any family members or babysitters come and help you watch your kids for a few days? I'm assuming that they're little kids. You could probably mangage to get back to normal sleep without pills, but you might wanna plan for the worst, since doing it without pills is the hard way.
I remember when my mom went off of Zoloft cold-turkey after years and years of a consistent moderate dose, she sat for hours slumped against the wall. Poor mom. My little sister was three years old at the time, and that kid's lucky that my mom had friends that helped take care of her.
Ah, I don't mean to scare you. Maybe you'll just quit with no problem at all, and then laugh at how nervous you were. I just think it's best to plan for the worst, just in case.
My two cents? Decide if you want to quit or not. If you don't, get a refferal to a pain clinic and go from there. If you do, go to your GP and tell them you're quitting, he'll probably just nod and mumble anyway. Call some friends or a baby sitter. If your kids are old enough, explain that mommy might act like a sleepy-head for a little while. Then, just take a deep breath and wait it out. After your brain goes back to normal, you can worry about long-term treatment and all that. You should probably take one thing at a time now. If you want to, you can go off of Elavil and come out okay. Many have done it before and lived to tell the tale :)

Oh, Dr. Dori Fish approves those smilies!
Well, I'm going to swim away now. I hope some of the advice in this post might be good for you.

[MotherSaguaro]

Hi Cari,

Your post is a bit old but I thought I would reply anyway. Thats the darn problem with anti-depressants, the old foggy noggin....well it was my problem as well. The key to coming off of them is tapering. You will want to talk with you doc first, of course and he/she should give you a taper schedule. Thing is if the elavil is really working for your IC you need to weigh your decision carefully. I was taking Pamelor which is in the same class as Elavil and the taper was cake.

There is a really super new sleep med out called Lunesta. I started taking it about a month ago. I was having problems sleeping because of the pain. It has worked wonders.

Amy

[coopsmom]

i took it for a year, went off of it fine. didn't bother me at all. good luck!! hope u do well.