stil no success

[adrie]

undefinedI can't help but get incredibally frustrated reading much of this. I can't take Elmiron because it increased my liver function and didn't work. Elavil is the medication from hell. After DMSO I couldn't walk. All other antidepressants, I believe I have tried them all, make me feel worse. I had two hydrodistentions and felt worse. I have had pre-sacral nuerectomy and my trigone nerves cut. I tried Hyosimine but not good. Now my doctors tell me they do not expect me to get better due to the lack of response to any of the routine treatments. Insurance will not pay for Botox injections, and I was put on methadone for pain which made me throw-up for a week before I quit that. Good news, I am on Atarax, Skelaxin (muscle relaxor) and Singulair but no improvement yet. Iam following the diet and goin to physical therapy for PFD. It seems to me that people who say it gets better have had one of the treatments previously mentioned work for them. Maybe my Skelaxin, Attarax and Singulair will kick in but it doesn't seem likely because I have already been on them since September. Now, what do you say to someone like me? :headbang: :toilet:

[ICNDonna]

First of all, I'd like to welcome you to the IC Network.

Have you read the information in the Patient Handbook at http://www.ic-network.com/handbook ?

You didn't mention whether you have tried any of the bladder instillations other than DMSO --- there are many different combinations. Heparin has been successful for some, marcaine helps in some instances, and steroids instilled work for others.

I personally am on DMSO, monthly now, but started with weekly instills. My first few treatments were extremely painful for days, but now I am just what I would call uncomfortable for several hours after a treatment.

I also have a problem with extreme nausea and vomiting from pain medications, but my urologist resolved this issue by ordering phenergan tablets for me. Any time I take a pain medication, I take a phenergan with it and it helps significantly.

Another thing you might look at if you haven't already is your water supply. I am from the midwest (Nebraska) and where I grew up there are a lot of minerals in the water supply. You might try drinking bottled spring water for a while to see if that helps.

And if your doctors aren't willing to try other treatments for you, it may be time to seek second opinions.

Just don't give up hope.

Donna

[adrie]

First, thanks for responding. I am glad I found the ICN. I tried heparin and a lidocaine mix. My doctor says the only other thing left for me is Botox and maybe Interstim. Neither one of us think Interstim is viable and Botox may help but insurance won't pay. All other therapies also seem to be investigational therefore insurance will not pay. I got some Phenergin but I only got 10. They seem to be stingy with prescribing that.

I got a second opinion once and that is how I ended up getting my trigone lasered. That was a terrible mistake and left that doctor's office in tears. Since that surgery, it is not unusual for me to see my hand full of blood when I wipe. When I went back to my original doctor, he said he doesn't perform such surgery because it hasn't had good effects. I asked him what effects and sure enough, I had many of the effects. I have stuck with this doctor, the one that originally diagnosed my IC because he assures me that he will only perform something that has some good data. Don't know what else to do. I'll visit the pain clinic again soon and hope they can finally give me something to work. I can live with this, if the pain is controlled. :rolleyes:

I do think the water supply makes me feel worse. My water supply is comprised of half well water and half trucked in water from a nearby town. :idea:

[kelly McC]

Bottled water has helped me alot. I hope the pain clinic will be able to help you .phenergan has helped me nausea and vomiting were a problem for me now I able to take some meds. Hope your treatment will help.
Kelly

[jrowley]

adrie,

I noticed that when i was on klonopin for my restless legs that my pain literally dissapeared you might talk with your doctor about using that. But klonopin is used to treat epilpsey and it seemed to make a difference with the spams of the bladder. Just a suggestion

[kadi]

I have had some success with Elavil, Ditropan & DMSO cocktail treatments. It's been an incomplete success, however, & I also asked my doctor what was left (Elmiron made me worse, Atarax gave me a pounding heartbeat & panic attack, and I've been through more other meds than most people can imagine. I think I counted once & it was 17.) So, I totally understand your frustration & fear.

My doctor told me what was left for me was Neurontin or epilepsy meds, said there'd been some success with those for IC patients, the Heparin & Lidocaine type instills at home, or clinical trials if I wanted to go that route... None of these sounded good to me, but my bottom line right now is that my IC is manageable, not ideal, but manageable. You might discuss these options with your doctor. I know you did the Heparin & Lidocaine, there has been some question about the concentration of the mix, might be worth looking into if they were ineffective & not harmful to you.... Also some doctors are mixing sodium bicarbonate into it.
Here's an article.
http://www.ncbi.nlm.nih.gov/entrez/...t_uids=15667861

You might want to check the ICN store also, some people have had success with Cystoprotek, Desert Harvest Aloe Vera, or other alternatives. I am allergic to shellfish, so the Cystoprotek was not okay for me, haven't tried anything else, but did want to mention these if you wanted to talk with your doctor about them.

Am so sorry you're having such a hard time. I totally understand the frustration with trying things & having them fail. Hang in there, all you need is one thing that works....

[adrie]

thanks for the information. I have also tried Neurotin and several other seizure medications. About three years ago I had unexplained seizure like activity and muscle spasms so put me on a long trial of epilepsy medications. One worked but it affected my liver count while the just zombied me out. :loco:

I wonder if anyone else has had any muscle fasiculations or muscle spasms like me. At night and when in bed, you can see myabdomen spasm and some thigh muscles. I alos have many clonic jerks and they all seem worse with the pain. :cussing:

[adrie]

I had klonopin before in the past for my clonic (jerking leg and arms) episodes. It did help. I hadn't thought about takin it again. My clonic jerks are so bad that it also jerks in my abdomen and I thrust uncontrolably forward like in a scene from the exorcist.

[jrowley]

I have severe restless leg syndrome and they have me on mirapex right now for it which is making it worse. I have to go to a neuroligist now to see if there may be something else going on with my nerves. Neither the epilepsy meds nor the parkinson's meds are working. It's driving me crazy more than the bladder does.

[brett]

I have not been able to tolerate Elavil,elmiron,channel blockers,hydroxizine,all narcotics,tylenol and even advil. The diet doesnt help me and dsmo treatments made things worse as did hydrodistensions. I finally found one medication that works for me and that is the pain pill ULTRAM which is the only thing that has enabled me to function a little bit and not be in ongoing agony and tears 24 hours a day. the doctor suggested PAMELOR which isnt suppose to have bad side effects like Elavil(horrible drug for me!) and I will be trying that. I am at my wits end with this and I sometimes dont even know how I make it thru the days with so much pain and not being able to manage it but I am praying that the pmelor will be my miracle drug since I cannot take any other kind of medications....

[adrie]

I sure do feel for your restless leg syndrome. Mine is terrible. I be eating and my arm flies in the air, plate food and all. It is embarassing and it literally hurts. Let me know how things go with your neurologist.

[adrie]

Brett I thought Ultram was good but it just didn't help my pain enough. I think Ultram has the least side effects and not as bad constipation. DMSO made everything worse for me too-Icouldn't even walk. Diet hasn't helped and I was taken off Elmiron. I am glad to know someone else goin thru these things. I was unable to tolerate Pamelor. I was droggy all day. Hydroxicine made me very dizzy and tired for almost two weeks and then I was able to tolerate it. I am still on it and can't live without it. It also helps me with nausea through out the day but I still have nausea with pain pills. Sometimes I am not sure how I can live to tomorrow either. The pain gets so bad that I curl up and cry myself to sleep about 2-3 times a day. All my friends do is say i don't look sick. I inform them that they don't live with me and they only what I let them see. I am beggining to feel like my friends just make it worse. I had a friend call me last night complaining about his miserable job but he will not look for another one because he feels he is too old. I told him to quit feelin sorry for himself and he need to reexamine what is looking to make life good-he stays because of the good pay. I feel like as long as you are lookin for materials things to make you happy, you will never be happy. I told hime to quit wining because he is of stable body and mind to learn a new job if he wants too. THings like that help me realize how many people take things for granted. When I am feeling bad and wonderin how to continue livin, I just try to fall asleep and say tomorrow is a new day and eventually the pain will lessen with good pain pills. I do have to some things to make me sleep sometimes in order to do this.

[Portia17]

HI ADRIE

From what I am reading you and I are alike. NOTHING IS WORKING. Sorry to be so depressing fellow ICer's but this is how it is for some of us.

I have tried everything too but I have not tried the patch or morphine

DMSO did nothing

Diet has done nothing

OH WELL

[Betsie]

Mary/Portia,

I say this with the utmost care, but you need to realize that at some point many of us if not the majority have been right where you are. It sucks and those of us posting success, do so out of a willingness to not abandon our bad times and the members here that just feel helpless....we may feel better and you may feel you truly need somone just like you..but the fact is we were all just like you,

....depressed, scared, impatient and feeling very alone...but we are still here and though we don't sound like you, we stay to help!!! The only reson so many of us stick around is because we truly get it.....hard as that may be to understand...like the adult who has experienced nothing else since 6 years old and somtimes younger....all these years later, this person(s) has a name and a face to put on years of misery...talk about being misunderstood.

there are a million differnt stories here and outcomes....We still have and UNDERSTAND IC...we stay here to help!

[adrie]

FYI, I got a huge heating pad from Target. It has moisture and dry settings. I also used some mineral oil last night for constipation. The mineral oil worked very well w/o any cramping or diarhea and was very simple and inexpensive to take. I have to say, this heating pad is Better Than Sex.

[kiffy313]

Hi all,
I just want to say that yes we are all different, and thankfully we can all post here to help each other. No where else can I go (except for here and some Dr.'s...) and even say "IC" or "interstitial cystitis" without getting looked at like I have "3 heads"...LOL...Anyways, I am glad for those that do have success and it does help to read that it can get better for some people. I also like that we can feel better in knowing that we aren't "crazy" when nothing seems to be working and we feel so alone and we can come here. I am still trying to get "my old life back", but not really even that as I know that will never be, but maybe my life ahead will turn out ok, and maybe even better...I am trying to remain hopeful. My main worry is that the only treatment my Uro. said is available at this time to "re build" the bladder lining is Elmiron, and I could not stay on it as my liver counts got too elevated and my Urologist and Gastro Dr. said it was not for me...I had both Elmiron instills and took it orally and I do think it helped some after a few weeks, but now it is not an option for me. So, I just hope that something else will come along that can help the bladder lining that I can take. Right now I am just in PM and trying to maintain...Thanks for listening,
Take Care,
Kif

[roller]

I am (a young and active 61 yr old) and have had IC for 2 1/2 years.
I also have irritable bowel, fibromyalgia and trouble with anxiety and panic attacks (not often).
Has anyone who has experienced MUSCLE JERKS found out:
why this is happening
what it has to do with IC
does it have anything to do with meds
This has been happening for about two months (that's about when I started meds for anxiety).
Thanks Nancy
mskier@chartermi.net

[SharonA]

Nancy... This is a very old thread. Because of that, I have reposted your post and started a new thread with it on this same Forum.

I am also closing this tread for the same reason.