not sure anymore what I should be doing?? - Interstitial Cystitis Network Support Forum

wfarrell · 10-14-2009, 06:59 AM

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?

Lindsay K. · 10-14-2009, 11:20 AM

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

musiclover · 10-14-2009, 03:16 PM

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.

sailawaygrl · 10-14-2009, 03:35 PM

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

wfarrell · 10-14-2009, 03:50 PM

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

kuntrygurl78 · 10-20-2009, 07:28 PM

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!

jen48446 · 11-10-2009, 04:51 AM

If you are able, get a second opinion, different doctors have different amounts of knowledge, etc. I know for my experience mine is due to hormone imbalance.

markov · 11-21-2009, 03:14 PM

Quote:

Originally Posted by wfarrell

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 hope you are feeling better with the Elavil. There does not seem to be a magic answer to the unpredictability of this alien! I noticed you are from upstate NY, can you tell me who your doctor is and if you are happy with them. I would love to start a group in this area, there does not appear to be one closer than Rochester. If you are interested, please let me know!

Marilyn

ICRN · 11-21-2009, 03:40 PM

Marilyn, where in Upstate New York are you? I too am in Upstate New York!

wfarrell · 11-22-2009, 04:05 PM

I am very upstate lol, i live in plattsburgh ny near the canadian border

ICRN · 11-30-2009, 08:59 AM

I am in Munnsville which is just 10 miles south of Oneida. You are about 3-4 hours away. Not too far in the scheme of things!

mary124 · 11-30-2009, 11:26 AM

I have heard of alternating the amount of meds every other night like with your Elavil. I don't take this anymore, but I have 2 medications that I take different dosages.