starting treatment

[ChristineW]

Hi guys, I just had 5th of 6th Bi Carb Treatment, they havent worked, Ive been in flare 4th day now. Severely, fell to floor from spasms. SO....I have to see a pain mgmt that my ins dont cover and I do not have enough to afford out of pocket so will prob go broke for it or take a loan out , I dont know..but no one else but this man knows about IC and everyone recommends him, so I have to do something....anyone know if the state helps with that stuff?
Also, there starting DMSO next Fri..5 of them. I also have begun elavil. On Elmiron too. Is Elavil like xanax? I take xanax cause the pain causes great anxity. How fast for elavvil to work for me? Will it help me sleep> Im up every 15 mins pee'ing. And in pain. And also, I dont know much about DMSO, what kinda of treatment is it...like sodium bicarb? Same way...and lay there 15 mins after keeping it in? Ive read somehwre its painful, is it? The sodium bicarb causes me discomfort, burning, itchiness....I just wanna know what to expect from DMSO.

THANKS SO MUCH..if this dont work they may do hydrodistention again.

Christine

[JessicainArkans]

Dear Christine,

I took the routine of DMSO treatments and I did not find them painful, the insertion of the cath was what I though was the worst, the cocktail of DMSO, Marcain, Elmiron & Solucortef did not seem to burn or cause pain, I held it for only 10 minutes the first time, 20 the second and got up to about an hour with the rest of the treatments, when I got home the first thing I would do was get into a hot bath to soak that freaking urethra, it hates being cathed the poor thing,(LOL).
I thought I would just die on the first few rides home stopping at Burger Kings, MC Donalds, and a Coffee shoppe, ( I live 14 miles exactly from the Doctors office). Just being cathed makes me feel like I have to go allllll the time.
I have been luckily unscathed by urgency and frequency, I have a lot of retention and PAIN with my IC!! I do not know what I would trade for what , they all come with a heavy hand!
I am glad you are exploring all your options there are so many out there to choose from, my Doc had me read Dr. Muldwins Guide to Surviving Interstitial Cystitis and let me pick and choose what meds and treatments I wanted to start with.
After having the DMSO treatments I found they really where not working for me because the 3 day rebound effect was horrible, I had so much pain for three days after the instillations , I could not get out of bed, but did find that I felt REALLY better the remainder of the week ( 3 or 4 days depending). My nurse said she had not had a patient react like that before so maybe and hope fully you will not find this your fate.
I truely hope it works out well for you.
I have also had 4 Spinal Stellate Ganglion injections ( spinal blocks) I have the worst Insurance in the whole world next to not having any, one procedure cost about $1,000 for the hospital, general anestheseia (Versaid), Doc and the injection, I found the recovery time not to be anything at all, I went for huge shopping trips afterwords, I even had a Margarita after my first one I MUST ADMIT THIS IS ILL ADVISED!! They made a world of difference in me.
I am on payment plans for the next 5 years, but you know what I am worth it!
I also take an antidepressant, Valium which helps me enormously with bladder pain, Clonazipam for sleep, Amytriptaline for sleep and Ultram for pain.
I am not 100% yet, not even near 50% but I do have a want to live, I did not before the blocks , my life was awful, moving from couch to bed to knowing all the tv programs, ( my God, I even got hooked on Soaps now that is bad for me!!)
P.M. me if you would like to know anything else, I have rambled enough!!
Wishing good luck with your Doctors and treatments
Much love and concern,
Jessica Day
JessicainArkansas
:kiss: :thumbsup:

[Dixiefireball]

there is a few ways i know to get treatments without paying out of the pocket.
1. see if you can get on medicaid call your local dss office.
the sad part sometimes a pain clinic will not except medicaid.

2.medicare
3.private inc. see if you can get a lower deductable (sp?)
4.sometimes a church will help you pay for a few dr visit also.

nerve give up hope there is something out there will help you.

i'm sorry the treatments has been so painful for you.
sending you hugs and prayers
Rhonda

[1tuffcookie]

Christine,

Hang in there! We know what you're going through. You're not alone!

Elavil should help you sleep, from what I've read. I took it for a while, but it's hard to remember much because it was years ago. I think it did help me sleep. But you should know that it causes weight gain--that's why I quit taking it. I think it kicks in pretty quickly--a few days, maybe.

DMSO is like the other IC treatments--it works for some and not for others. I did it, and it didn't help me. It usually is painful, but some patients say it's worth it, because they feel better later. I think it's definitely worth trying.

I hope you feel better soon!

[ICNDonna]

I'm one who is helped significantly by DMSO --- I am on a monthly schedule now. My husband takes a low dose of elavil for arthritis pain and it seems to help him --- I tried it for a week and it did a reverse effect on me --- my blood pressure shot up to over 200 so I had to stop taking it.

Hydrodistention also helps my symptoms every time --- when I go into a flare that won't stop, we schedule another hydro for me.

I hope you find some helpful treatments soon.

Warm hugs,
Donna