What has worked for people?

[mommy2T]

I see a lot of people on here who use Amytriptilene (sp?) with good success...but what else have people found that works? I can't take anything in this class (basically anything that ends in triptilene) because it causes me to have heart arrythmias (prolonged Q-T syndrome). Are there other anti-depressants that people have found that help?

Jamie

[eyeliner128]

Reply:

I have been on almost all of the antidepressants used for IC and Fibromyalgia. Most of them I just can't tolerate (dizziness, confusion, etc.)

Cymbalta - Took for two years and saw a lot of improvement, but when I tried to restart it, I felt no difference.

Wellbutrin - Immediate bad side effects.

Elavil (this is amytryptaline) Had great success for two months, but found that my body was becoming immune to small doses so quickly I couldn't keep up. I would have had to increase my dose every few weeks and that would end up with me as a zombie!

Effexor - Immediate bad side effects.


All of these were awhile ago so I can't remember specifics. I believe the Effexor caused retention and the Wellbutrin I couldn't even function I was so dizzy. Since you can't take anything in the "tryptaline" class, maybe you want to try others - this is a link to all of the antidepressants on the market today:

http://depression.emedtv.com/antidep...pressants.html


I've been battling IC for 18 years and this is roughly what I did to improve it to the point where I can live a pretty normal life now:

-I began 6 Elmiron tablets a day when I was diagnosed, and continued this for 6 months, then brought it down to 3 a day (the normal dose). Due to the aggressive combination of a hydrodistention (inflating the bladder with solution) and a high, high dose of Elmiron, my symptoms improved drastically within the first year of treatment. I recommend checking out these medications to treat IC itself - Valium, Vistaril, Cymbalta, Elmiron, Levsin, Lyrica.

-After that, I quit all medications for a year because I was a teenager, I wanted a pure body, I thought medications were poison, etc. I felt fine for about 6 months, then my symptoms returned with a vengeance. I wish I had not stopped the medications but I sincerely believe my body needed a break and needed to re-calibrate itself.

If you don't want an antidepressant, a close relative is Lyrica. It helps calm overactive nerves. I would definitely talk to your doctor about it

-Now, almost 3 years later, my IC has not been a big problem, but my other conditions have. I have Vulvodynia, Pelvic Floor Dysfunction, IBS, Endometriosis, Fibromyalgia and TMJ. I'm not sure if you have those, too, but here is what helps me most...

For Vulvodynia - antihistamines for the itching and inflammation, warm baths, drinking lots of water to reduce the acidity of my pee.

For PFD - low dose Valium has saved my life in this regard! I highly recommend it if you have any problems with your bladder or pelvic muscles.

For IBS - when I sense a flare coming, I take a Tramadol (non-narcotic pain killer) which usually relaxes the muscles. Bowel movements help.

For Endometriosis - I have this under control with continuous birth control pills.

For Fibromyalgia - I am currently trying Lyrica, but there aren't a lot of treatments for this other than physical therapy and exercise.

For TMJ - Antihistamines or valium seem to help, also if I ice the area of my face that hurts. Usually this pain just has to run it's course though.


Are you diagnosed with IC, or anything else? I can offer more advice if I know more about your conditions, if you'd like. I've been battling all of these for years, so I can answer your questions from experience.


Molly

[mommy2T]

Thanks!

Thanks Molly I am currently not diagnosed with IC. I have a history of endometriosis and when I had this most recent flare up of severe pain they went in to do the lap (#5 in 7 years) and found out that my endo was pretty well under control (thanks to Mirena). So that was good news, but then what is causing the pain?

Years ago my GYN thought I may have had IC, but the urologist told me (and not so nicely I might add) that my symptoms sounded more like endo and he would not see me until after my lap (which showed extensive endo so we never went any further with the IC diagnosis--plus I had NO desire to talk to that urologist again!).

I meet with the GYN for my post op 10/24 but from what she told my husband after surgery she thought the pain may be bladder related. (Moderate to severe low back pain, flank pain, & pain with intercourse was what led me to seek my GYNs help...now looking back I see how many urinary symptoms I have been "blowing off" and making excuses for. (going very frequently, nocturia, never feeling like I am "empty", etc).

Today the pain is terrible, it hurts even to walk. I am trying to get some ideas down to talk with the docs about, I just want to feel better soon! I go back to work tomorrow (I was out for my lap) and am dreading the "oh you're back...are you feeling better?" questions and having to just smile and say "I'm ok" when I want to cry and say "no...I feel no better at all".

Wow...ok..deep breath. Sorry--Did not mean to turn this into a vent. Thanks for all your help and info. I will do some research on the different meds now that I have that info

Jamie

[eyeliner128]

Reply:

The only sure way to know if you have IC or not is through Cystoscopy - which is usually done with the Lap, like in my case. If your symptoms are bothering you pretty severely, maybe find a good urologist to examine you, one that is familiar with IC. As you probably know, it can mimic many other diseases, making it hard to tell where your pain is coming from.

Take care,
Molly