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  • janet.
    replied
    Pain ?

    I have not tried a pain clinic. I am afraid they will not understand IC. Thus far, my uro has treated me well and is understanding. However his surgery schedule is usually booked up pretty far in advance. I am waiting for my 4th DSMO/hydro (in about 4 years-so not so bad on that). However the pain is really bad this time. The only time my pain was this bad consistently was prior to my first DSMO/diagnosis. I do have vicodin but it does not help as much after 3 days or so. Obviously I know this is an addictive drug and I am cautious. Typically I do take it on a monthly basis/about 3-4 days (hormone related) and maybe have an additional day or two in between (no food triggers noticed or any other reasons for the occasional flare up.) I don't know what to do for the next 5 weeks. After my last DSMO/hydro I did take percocet for a couple days and went down to the vicodin and was fine. However this time I am not "weening myself off"-I have no idea what to do, what to ask for...I don't want a stronger med now because after the procedure I do not want to have a tolerance to whatever he gives me then. I am using diazepam and diazepam suppositories which have been great (especially for work). 9+ hrs of sitting is REALLY bothering me. I truly do not know if I can take 5 more weeks of a 40+ hr work week. People just do not understand. It is not just the work issue (it is getting up, getting ready, the commute...) ANY IDEAS WOULD BE GREATLY APPRECIATED.

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  • Cris1986
    replied
    Dmso

    I had my first DMSO treatment Friday and will be going for treatments every Friday for the next 6 weeks. It wasn't nearly as bad as I had expected. The catheter burned when they were inserting it and taking it out, and I felt a burning sensation the first few times I urinated after the treatment. I experienced some minor discomfort after the treatment. That was gone within a day, though. I haven't noticed that much of a difference yet, but I anticipate that it will take more than one treatment before I start to see any results. So far, I have seen a slight reduction in my frequency/urgency and noticed that my flares don't tend to last quite as long as they used to. I will also be going to physical therapy soon.

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  • ginaaa22
    replied
    I'm not sure if you were asking me what I'm going to do when I go back to cleveland... I'm not sure which dr I am going to see. I am going to scheduel an apt with a uro-gyn and a pain management dr. I will prolly see my old PCP since I saw her for 8 years and she would usually give me a script for whatever I needed (ie. I couldnt get into see the specialist). I will also be seeing a GI dr, someone for my VV, fibro. If I go before you do I will let you know what dr I see and how it went. I should be going back to the dr at the CC in december. I'm sad to leave Dr. Oldendorf but I can't drive 4 hours to see her when the CC is 30 mins away and more than capable of meeting my needs.

    When i went to the cleveland clinic as a pediatric pt i was seen in GI, gyn, uro and neuro. They will have all my records and im getting everything else sent over from the U of M. I can tell u that unlike any other place I have been the CC is very thorough. Around the time I got my first UTI that would not go away I started having GI issues. I saw a GI dr there and we tried meds and therapy. It didnt help so I got an endoscopy and colonoscopy along with blood work, MRI, ultrasounds and food intolerance testing. Everytime I went back saying I didnt feel better they would do more testing to try and get to the bottom of it. I wish I could see my old GI dr there but unfortunately I cant. I have seen 100+ dr and the CC care, dr, and facility is the nicest I've ever been to. Thankfully they have another clinic in willoughby, oh which will be right by my house and they have a uro-gyn who specializes in IC that works there. You can get on CC website and schedual an apt online and they willl email you with a date and time.
    Last edited by ginaaa22; 05-08-2011, 06:33 PM. Reason: add more

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  • andreamarie
    replied
    Pt. 2: treatments I've tried

    Thirty five yrs ago there was very little but most treatments are still used today. Anything intravesical made me worse: DMSO, Prednisone, etc. It got so bad I can't be cathed. Had my bladder stretched twice for dx: got worse.
    So we don't do anything invasive. They were still taking bladders out; fortunately because of the Crohn's not an option. I could die from results.

    Used TENS to retrain my bladder; it took me three yrs to get dx. I'd been guarding. 30 mg of Valium for pelvic floor spasms. Elmiron (I had to get it from Germany and Italy.) I got retention from all antidrepressants and Lyrica.

    When I hit menopause I went I was nearly symptom free with Valium, Cystoprotek, hydroxizine, and gabapentin. Fourteen yrs later itching returned after serious g.i. infection and shingles. You have no idea how much more is known now. But one i.c. guru burnt out and left Boston.

    Because I have so many other illnesses, I have other specialists who I have excellent relationships with. I want to see if one will call re itching, since bladder symptoms are under control.

    Do you know who you'll be seeing, or any of the doctors? I see one of my favorite docs in a week. He's a neuro I see for sleep disorder (I have CFS) and has tried to help me re other problems. He sees others with i.c. and prescribes Percocet without any problems. I have not tried PT because I can't be touched internally.

    For anyone who has retention I have found that HOT BATHS AND VALIUM BEST. ALSO IN BEGINNING COULD NOT TOLERATE ATARAX BUT COULD HANDLE BENADRYL. MANY MEDS CAUSE RETENTION.

    SO AGAIN, DO YOU HAVE ANY IDEA WHERE YOU WILL START WHEN YOU GO BACK TO CLEVELAND?

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  • andreamarie
    replied
    Cleveland Clinic: am going to try to get one of my docs to call Gina22

    Horrible itch flare today; thought I'd lose my mind. I know it was the result of getting mildy constipated (sorry if that's TMI, but it's something that sets off flares in many of us. G.I. tract has been over reacting since colonoscopy (good news is gastro was really happy with what he saw) and is trying to figure out problems.

    I am considering going to the CC. It's not impossible. They have more docs there treating i.c. than all of Boston. Website impressive. But before I go I'm going to see if I can get any of my specialists to call. I've seen one uro here who's sympathetic, but is doing treatments I've had. Also, since bladder is quiet, I'm ahead of the game. The itching that I got with the i.c. is what's back. I know it's from i.c. because of previous paragraph. Whatever are my i.c. flares, flare intense, I want to lose my mind itching right under bladder wall. Since they see so many cases, they probably have seen this syptom. Yrs ago a woman in my support group had same symptom. Even oxycontin didn't help it.

    I will make some preliminary calls to see if I can find right doc for someone to call. Do you know who you'll be seeing. There are more docs there for i.c. than all of Boston.

    Once I got my g.i. tract under control (which started flare) I did the "shotgun" approach. 4,000 mg of gabapentin (that has been very effect; obviously neuropathic pain is involved. Added 100 mg. of Lamictal, another noreleiptic used for neuropathic pain (a. m not sure it's that effective, but I can tolerate it)
    30 mg of Valium and a 5 mg. Valium suppository. Also hydroxizine. Some weed (I just added this; not directly effective, but I use it for nausea.) Adding the weed knocked me out and I slept for about three hrs. Woke up to itching and took one Percocet and another Atarax. Hot bath. 5% lidocaine cream in a special base. I went from a 10 plus to about a 4. I was using Baclofen supp rectally, but stopped for a few days to see if it was causing g.i. problems.

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  • ginaaa22
    replied
    I will let you know how it goes. I will be going back there in november when I move back home... Havent been a pt there since 08 but I have heard great things about their IC knowledge and treatment options..

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  • Cris1986
    replied
    Dmso

    Linda, I spoke with my urologist's office about DMSO treatments. They ordered the medication and will be getting back to me within the next couple of business days to schedule an appointment. I'll be going for DMSO treatments once a week for 6 weeks. I was told that my urologist will discuss possibly sending me to physical therapy and/or another pain clinic when I go in for my DMSO treatments. Gina, I'm only about two-and-a-half hours from Cleveland. I'll look into finding a doctor there. Thank you everyone for your replies.

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  • andreamarie
    replied
    I'm really far from Cleveland

    I'm really far from Cleveland but I went there for a second opinion because they had a doctor, Bruce Stewart, who was famous for diagnosing i.c. Sadly, he died at fifty eight from prostrate cancer. How ironic for a famous urologist.
    The doc who diagnosed me had spent a yr at CC as a visiting professor. He was the twenty fifth doc I saw but he knew right away.
    It looks like you take many of the same meds I do. My sleep specialist prescribes Percocet for me. Dr. Theoharides says that taking opiods with Atarax (same as hydroxizine) increases the opiod response.
    Interestingly, my bladder is fine; it's the itching in my vagina under the bladder that drives me insane. I see a doc who specializes in vulvadynia and even though I don't have it, she's been helpful. I use a compounding pharmacy and am having real success with diazepan (Valium) suppositories.I'm going to try a lidocaine cream from the compounding pharmacy and if the lidocaine bothers me they can do buffered lidocaine in a suppository.

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  • ginaaa22
    replied
    How far away from cleveland do you live? I have heard great things about the cleveland clinic pain management. They have 20+ dr who treat IC in all different specialities (uro, gyn, uro-gyn, pain management, counceling). I used to go to the cleveland clinic when I was a pediatric patient and they are awesome. My uro gives me tramadol for pain and percocet for flares. Not all uro's will prescribe these tho. Right now I am a pt at the university of michigan but I will be returning to the cleveland clinic when I move back home. If you are interested in going there go to there website and look under dr's by condition and type in IC and you will see all the dr's and their specialties. Any big hospital should have a website and have information on dr's online.

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  • Snowden1
    replied
    I am going to give the Elmiron one more change and hope that I don't have the same issues as last time (nausea, blood in stool, etc). I am going to start slower and try 1 pill a day then try two then try three. I don't know I may not even get past the first pill - who knows. I did try the Cystoprotek and actuallly thought it may be working for me until I started getting stomach and GI trouble from it. It's like you trade one thing for another.

    Thank you so much for your response. Everyone is most helpful here.

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  • 123456
    replied
    Go to your PCP. They are more likely to give you pain and sleeping meds. My does so knowing all my conditions without question. She is wonderful and does not treat me like some kind of drug seeking addict.

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  • amaranthe
    replied
    Andrea, if you have been taking the valium for 35 years and havent fallen down the "slippery slope" yet, then I highly doubt you are going to now! The very idea is absolutely ridiculous! I think it just must be some standard speech she gives to everyone on those meds and that it must not have occured to her how long you have been on them. Either that, or she is just plain crazy!

    I know you dont want to go to a pain clinic, but it might actually be a good idea since they stay abreast of the most current treatments for chronic pain. Also, they arent inhibited about r/xing things that other Drs are. So, I do think you should give a pain clinic another try. (However, I will warn you that it might take trying a few to find the right one!)

    Snowden,
    I am so sorry you had such a horrible Drs appt. I think the cruelest thing a Dr can say is that they think you have already tried everything and that they cant help you. (Especially, when it isnt even true, such as in your case!) Personally, I think the odds are pretty high that you know more about IC than your Dr does. (After all, you have been a member here for years and years and are on here almost daily reading and giving advice. So over the years, you have studied IC extensively and you know your body better than anyone! So please dont lose hope!

    I think you are on the right path with giving Elmiron another try. After all, (as you probobly know already), it can take up to 6 months for it to work, and when you tried it last time, you didnt try it for anywhere NEAR that long! So, trying it again makes sense. If it doesnt work for you or you have too many side effects from it, then you might want to consider giving Cystoproteck (or whatever it's called) a try. (You know what I am talking about, that med that people take who cant take Elmiron.) You definately need something to protect your bladder wall and help simulate the lining to your bladder. I would imagine that without anything, you are probobly in a tremendous amount of pain. So, definately give Elmiron another try.

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  • Snowden1
    replied
    andrea,
    what did you finally end up getting? What meds are working for you? I just wrote a book here but hit a wrong button and lost it all. Basically, I have severe retention too. I went to the uro today and all I have done is cry because he told me he "couldn't help me." He said I had tried it all. (Not yet). He gave me Elmiron and Atarax like I ask for but said if they didn't work before (I tried 40 days they wouldn't work now." So I am a HOPELESS CASE - basically is what he said AGAIN and I just cried and made my IC flare and my back worse. I ask for an MRI, but he ignored my question and told me to stay away from surgeries basically. So I can't travel far and I don't have someone to drive me. My husband will take a month in between school in June to try to help take me to a GOOD dr. I just don't know where that will be. I am just so sad I try to hold on to some hope and then they offer nothing and what they offer is at my suggestions and I'm told it won't work. Why are people so cruel?

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  • Snowden1
    replied
    ok so i have tried to post the same message and had it erased twice. I guess I'm just not suppose to post it. I just wondered andrea, what meds you finally received? How severe is your IC? I also have retention with meds really badly and went to see the uro today. He told me bascially he couldn't help me and I had tried everything. He gave me the Elmiron and Atarax when I ask to try them again. He said if they didn't work before they won't now. SO i have cried all day thus putting myself in severe back pain and bladder pain. I am so sick of this.
    Last edited by Snowden1; 04-21-2011, 08:27 PM. Reason: found lost post

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  • andreamarie
    replied
    I just came back from a visit to the Pain Clinic at Massachusetts General Hospital. It was a well researched referral. It was also a nightmare if you look at it one way or a skit from Saturday Night Live if you look at it another way.

    I was dx thirty yrs ago and tried all the treatments available at the time. I couldn't tolerate intrvesical treatments. I didn't use narcotics because they weren't helpful. Valium was a lifesaver; no used it then. Also, I retrained my bladder using a TENS device. When I hit menopause I was almost symptom free with the meds I was taking: Valium, hydroxizine, Cystoprotek.

    Three yrs ago I got the shingles and lost my remission. It's been up and down. My worst symptom is INTENSE itching under the bladder wall. It can be so bad I start shaking and hear myself screaming.

    My pcp, who I need a divorce from, was shocked that I was using two five mg. diazepam suppositories and tried to block my specialist from prescribing them. My psychiatrist, who originally wrote oral diazepan and the neuro I see for sleep fixed things.
    She gave me the "slippery slope" speech. Since I haven't moved on to anything else in thirty five yrs this seems absurd. She insisted on a pain clinic. Been there, done that, but thought I had a good referral. Twenty yrs ago there was one good i.c. pain doc in Boston. He retired.

    I will go right to the punch line: "you could get a small vibrator to relieve the itching." I HAVE ALLODYNIA; TOUCH IS BRUTAL. IT ALSO SETS IT OFF.

    I came with good lit from the ICA on pain. I also had everything clearly written out. The fellow, who was great, read it. The doc did not.

    I also get retention but can handle hydroxizine and gabapentin. She gave me a scrip for another noreleptic, which I did read about. I can't take most meds used because of retention. I came home, took all my meds at once and am physically comfortable. They knocked me out enough that I'm not suicidal or homicidal.
    Since I'm still married to my pcp, when I see her next wk I will tell her SHE has to find a pain doc.

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