Need help!

[lissa28]

I am a 28yr old female who has been suffering from this for 8yrs, and was misdiagnosed for 7 of those 8. My main issue with this is Nocturia, and pressure on my bladder, but no pain. I have frequency through the day, but not usually too terribly bad except during flares. I was prescribed Elavil 10 mg a day, and it worked awesome for a month. I had slight side effects like dizziness, but nothing too terribly bad. Then out of nowhere I got severe side effects I got canker sores and neuropathy in my left hand neither of which I have experienced before in my life, and severe constipation. My Urologist put me on imipramine HCL 25mg, and my nocturia is worst than ever. I start the nursing program in the fall, and can not continue to not be able to sleep to make it through the program. I started taking Quercetin, Bromelain, and Glucosamine Sulfate to try and temper the inflammation, but to no avail so anyone with any suggestions please help I am running out of time. Also I take 20mg Ritalin for ADHD and drugs have a way of acting backwards with me. Thanks!:confused:

[leelee88]

Has your Dr tried you on anything for OAB I know sometimes these drugs help IC patients sometimes they do not.. Just wondering if you had tried any..

[kadi]

If you tend to get a lot of side effects from oral medications, rescue instillations might be something to ask your doctor about. Doing one before bedtime has really helped the quality of my sleep.. Good luck with your studies & hang in there,

[ICNDonna]

There are many treatment options for IC. Are you taking elmiron? If not, that's one you might want to consider trying. It can take six months or longer to become effective, but those it helps say it's well worth the waiting. And definitely give the diet a try.

Warm welcoming hugs,
Donna

[tigger_gal]

Have you disscussed this further with your doctors, there are other meds and a combo of meds that might help you better.
Hang in there, sometimes it takes time to find the right meds. Have you tried Elmeron?

[jena55]

I have no great advice to offer as I am still looking for the answer myself. Just wanted you to know that you are not alone. I am also 28 and have been suffering w/these symptoms since I was 20 with no real diagnosis. So frustrating!! It really hurts the quality of life during your 20's when you are supposed to enjoy being young!! I wish you luck and hope you find some relief soon. Good luck in Nursing school.

Jena

[lisabar36]

I would have to say Elmiron really helped me with waking up non stop at night. It did take 6 months or more to start working, but it was so worth it for me. There are so many treatments out there, it seems like its trial and error until you find the right ones that will help you. Theres also atarax (hydroxyzine) that has helped many. These are some things you can talk to your doctor about. They always started me on a new med in the smallest dose and one by one so I would know if I had a side effect, what med was causing it, and by giving me the lowest dose, and then working me up, the side effects were not quite as bad. I did have some dizziness in the beginning with Elavil, but that went away. I hope you find something that works for you. Good luck.

[lissa28]

I asked my doctor about Elmiron, but because my insurance is the VA, and there is no current generic from of elmiron that is there last option. I also asked my Urologist about rescue instillations his response was he did not know what those were I tried to explain, but he just blew me off. I plan to go to my primary care doctor to request a new urologist, but am just waiting for finals to be done. However, because I have the VA there are only 3 total Urologists I can choose from, and I don't have secondary insurance because I am going to have to quit working full time to attend nursing school. The positive is my primary care is also my ob gyn, and she is always helpful. This disease can truly be maddening I study all these disease in school, and wish I had them instead because for most of them there is at least a cause, and in most cases the same treatment plan for all patients. I truly appreciate everyones response, and advice thank you all@

[lisabar36]

Hi, I know Elmiron has some kind of assistance program to help pay for it, it is expensive. If you go to there website they have info on how to get help paying for it. Also on this site, depending what state you live in, there is a list of IC specialists by state, that is how I found one of my IC docs. I am posting the link below. I hope you can find a new uro that can help you.

http://www.ic-network.com/md/#search

[purpletomorrow]

I'd guess the Ritalin is wreaking havoc on your bladder. Any way you can stop it, get on the IC diet, and see if things don't calm down for a while?

Remeron, a tricyclic anti depressant, has been a godsend for me. Calms down my bladder, lets me sleep at night, anti histamine qualities too. I take 30 mg a night.

Good luck to you.

[elamar]

Have you been precribed atarax at all? It is an anti-histimine that helps reduce inflammation in the bladder - and it has the wonderful side effect of drowsiness! I take the generic of it. I take a 10 mg generic atarax, and a 2 mg tablet of valium (again generic - only about $5 for a one month supply). I take those two around 9:00pm and can barely keep my eyes open by 10:00 pm. You also might need to look into a stronger antispasmodic. I had good results with ditropan xl (again generic!), also there is urelle, prosed and utira-c. My urge senstion would be so bad, that sleep meds did not work for me. I tried ambien cr and would still wake up several times a night to pee. I just fell back asleep quicker. I was actually prescribed to take 2 mg of valium three times a day, but didn't feel like it was doing anything so I just decided to do one at night. Maybe you can ask your doctor about the above meds. I can't take Elmiron (bad side effects) so I can't give you any advice about that. I tried the elavil, and it made me drowsy, but still wouldn't help with the urge problem, I would still wake up alot at night on it. I hope this helps. Good luck to you.