Elavil (Endep) - Increasing frequency?

[Rainwilds]

Hello all,

I just thought I would run this little question by and see what those of you who have used Elavil think.

I started taking Elavil 5 days ago, with a dosage of 12.5mg (I'm breaking the 25mg tablet in half with advice from my doctor). I have found it wonderful for my pain (I think I've gone from a 8/10 most days down to about 4/10) and it has been helping me to have deeper sleeps, even if I wake up to void, I can get back to sleep quite easily.

However, since the day I started taking it, I noticed my frequecy and urgency went up, quite markedly, even at night. And the voids are burning, something they haven't done very often before. They feel really concentrated and hot and I'm not voiding much at all. I've been drinking water (like usual) to try and dilute it ...

Has anybody else experienced this with Elavil? I don't want to come off it just yet beause it has some great positive effects and I haven't even upped my dosage to the 25mg yet. Any thoughts would be appreciated ...

Thanks,
Ally

[jaisa]

Could you have a UTI? Good Luck so nice to here something working--J:)

[leelee88]

While Elavil DID help with the pain, it also caused some retention problems. And with this caused frequency because I was not able to void a good volume there for making me pee more often.. Hope that makes sense..If I were you I would measure your urine, if it is very small amounts you could be having some retention from the elavil.

[Rainwilds]

Could you have a UTI? Good Luck so nice to here something working--J:)

I was thinking that but I had a test for one only a few weeks ago. Alas, it was negative! And yes, it is wonderful that something is working! I hope I can stay on it! :)

[Rainwilds]

While Elavil DID help with the pain, it also caused some retention problems. And with this caused frequency because I was not able to void a good volume there for making me pee more often.. Hope that makes sense..If I were you I would measure your urine, if it is very small amounts you could be having some retention from the elavil.

Thanks for the information! :)

I can see where you are going with this! Did you stay on it anyway? Did the retention ease off after awhile? I just really don't want to have to stop this medication so soon ...

[leelee88]

Yes I stayed on it until the Dr took me off of it because I was gaining weight and it was causing my BP to go really high..

SO I switched to Tofranil and had good results from the Tofranil. Only thing though with it, was it did not make me sleep like the Elavil which I missed that.

I am now on Lyrica and having even better results from it than any other med..

[Rainwilds]

Yes I stayed on it until the Dr took me off of it because I was gaining weight and it was causing my BP to go really high..

SO I switched to Tofranil and had good results from the Tofranil. Only thing though with it, was it did not make me sleep like the Elavil which I missed that.

I am now on Lyrica and having even better results from it than any other med..

Thanks for responding so fast Ronda! :)
Someone else mentioned I should try Tofranil - I'll see how I go, it might have to be an option.

[leelee88]

Well give the Elavil a chance.. Your body just might need some time getting use to it.. BUT watch for swelling like in your fingers and hands/feet.. That would also be a sign that you are retaining..I hope this is not the case. But if it is do not let it get you down because there are a lot of other things out there to try..:)

[Rainwilds]

Well give the Elavil a chance.. Your body just might need some time getting use to it ...

A bit of an update on how the Elavil is going for me:

I increased my dosage about 4 days ago to 25mg and although I can sleep solid for about three hours, after that, I am up EVERY single hour to void - and basically nothing comes out! I had frequency before I started on the Elavil but I didn't have the intense urgency that I have since I've been taking it. The higher dose has helped in the respect that I can get a 'few' hours sleep, but after that it seems pointless because I am up MORE then I used to be before starting the drug! The urgency/frequency remains throughout the day too. Another thing I also noticed was that since I had taken the increased dosage, my appetite has increased dramactically! I've never been a big eater, but now, my stomach is grumbling right before I go to bed and as soon as I wake in the morning! And that is after a reasonable dinner!

Anyway, I guess what I am getting at is that I have to try another drug. Elavil has been FANTASTIC for reducing my pain, but the increase in my other symptoms is getting me down. I know it's all trial and error in these things ...

So, my question is, what should I try next? Has anybody had a similar problem to me and then tried something else? I'm really sad to come off it because being almost pain-free most days is AWESOME, but I know that not getting any sleep is doing damage to my system ...

Thanks in advance!
Ally

[Dakota]

Elavil helped greatly with my pain. I did not notice that it increased my frequency, but I did start to gain weight almost from day one. I had to discontinue it because it dried me out so bad even at a very small dose and I was so upset because it was the only thing so far that helped.

Rhonda
Did you find that the Tofranil helped as much as Elavil? I would love to try Lyrica, but when I mentioned it to my Uro, he looked at me like I was crazy, and said he has not heard of it being used for IC. What are the side effects of Lyrica? I would be so willing to give it a try if I was sure it would not aggravate my Sjogren's Sydrome. I'd probably have to work really hard at convincing the Uro or my primary doctor to let me try it though!

[Rainwilds]

... Did you find that the Tofranil helped as much as Elavil? ...

This is what I am going to discuss with my doctor - if anyone has any information, please let me know! Thanks!

[sara74]

Hi

I tried Tofranil a few months ago. I have to say it didn't really help me with the pain (but we are all different so it might help you). I had previously been offered Elavil but gave up on it after a couple of days because I was so tired from it. I did try to convince my doctor to let me try it again - but she wouldn't let me.

I live in the UK and i'm now waiting for my appointment with an Urologist in May. I hope to try Lyrica aswell. Quite a few people seem to be using Lyrica for IC with good results but from what I can gather not all Urologist are familiar with it.

[Rainwilds]

... I tried Tofranil a few months ago. I have to say it didn't really help me with the pain (but we are all different so it might help you). I had previously been offered Elavil but gave up on it after a couple of days because I was so tired from it. I did try to convince my doctor to let me try it again - but she wouldn't let me.

I live in the UK and i'm now waiting for my appointment with an Urologist in May. I hope to try Lyrica aswell. Quite a few people seem to be using Lyrica for IC with good results but from what I can gather not all Urologist are familiar with it.

Thanks for the information ...

Yes, that is the thing isn't it? We really are all different, I feel like it is always a 'trial and error' approach to IC! I've heard of Lyrica too, it seems like a very strong drug though, so I'm a bit apprehensive ...

[Mrsrea]

I just got prescribed Elavil today and will take it tonight. I wanted to ask you were you taking anything to sleep before you started this medicine? I have been on sleep meds for many many years and I am nervous tonight to just take the Elavil and wonder if it will actually help me sleep. If it doesnt I guess a few hours later I will have to take something to make me sleep. but I was just curious.

[Dakota]

Mrsrea

Yes I was taking the Elavil as a sleep med for many years. When I was diagnosed with Sjogren's Snydrome, the doctor I was seeing told me I had to stop it. I was given Restoril in it's place. It is very effective, but very addictive, and I probably will never be able to come off of it. I've been on it for years. What dose of Elavil are you on. I was only trying the 10mg to see if it would have an effect on the IC pain which it does. Because of the low dose I am able to take it with the Restoril. If I were to increase it to say 50mg a night it might help me sleep, but I am not able to get anywhere near that dose. Hope this is not confusing to you. I would say in your case if you can tolerate a much higher dose it should help you with sleep. What sleep meds have you been taking and did the doctor say you had to stop them when you started Elavil? I wish you the best and hope this works for you. Keep us informed as to how it goes for you.

Dakota

[Mrsrea]

I have the 10mg dose. I just took otc sleep meds and the doctor didnt really say if I should stop or not. I tried last night just taking the elavil, well I took my pain meds an hour before but I finally did sleep. It took about 2 hours for the pill to work and then I slept great. I went to bed at 1215am, got up at 530am to pee and then got up at about 930am. Thats really good for me. I am hurting really bad right now so I just took my pain meds.