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Dr. Brookoff's protocol

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  • BBB
    replied
    The Interfer Stim rocks!!

    Also...Dr. Brookoff has me on the 10 mg. pill inter-vaginally.

    Leave a comment:


  • ads
    replied
    Dr. Moldwin Moldwin does adjustments in severe PFD patients, so while 6mg total daily dose on valium is is standard, he may make changes according to the patient. A number remain on the valium long term.

    ads

    Originally posted by dbritts View Post
    ICsmiles,

    That was great info on using the valium pills instead of the suppositories. One question--my dr. goes by Dr. Moldwin's protocol--1 2mg. tablet taken 3x a day for a total of 6mg daily. I know Dr. Brookoff was using higher doses in the valium suppositories--what dosage of valium pills are you using? When my dr. prescribed 2mg valium suppositories they didn't do anything.

    Debbie

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  • ICsmiles
    replied
    Headache in Pelvis program in CA

    I'm interested in hearing about other womens' experiences too. I looked into it and even spoke with Dr. Wise and it seems very interesting and promising.
    At the time, however, I decided to see Dr. Jerome Weiss in San Francisco instead. Dr. Weiss was partly covered by my insurance, and he also offered nerve blocks, which was attractive to me at the time. I wanted a quick fix but it didn't happen for me. I had only one block, which is an injection, and I had no relief or improvement. In fact, I flared at first, which Dr. Weiss said could happen, so I was disappointed.
    However, there has been a very cool part of the pelvic floor therapy from Dr. Weiss, which is that he taught my husband how to do the internal therapy as well as external techniques like skin rolling. I was happily surprised that Dr. Weiss offered to teach my hubbie and that he was willing to learn!!! It was amazing to have that experience but I'm so glad we were open to it. Now my hubbie actually can tell how tense I am and he also can tell the difference when I'm in a lot of pain -- he says my muscle bands are tighter and much more sensitive. I yelp when he hits one, and he knows how to be really careful. We even know the terms like piriformus and obturator and try to study the area and the pudendal nerves so we understand it better.
    We have the Headache in the Pelvis book, which we have studied and found helpful, along with all of the articles available on Dr. Jerome Weiss's site on the internet.
    I have had IC for 12 years but never had pelvic floor therapy until recently. For me - it is like getting a great backrub - yes, it does hurt, but its a good kind of hurt. I don't think it is making my IC bladder pain go away, but it does give me a temporary sense of relief... overall though, im not convinced it really makes a big difference.
    I do think going to a week-long program as it is described would be a treat - to be worked on internally, externally, while also addressing emotions that may be interwoved with my pain - that sounds wonderful.

    hope to hear from someone who has gone through it!

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  • ads
    replied
    Headache in the Pelvis Program

    Has anyone attended the Headache in the Pelvis Program in California who is female? We have heard from a male patient, but no females. I would be extremely interested in hearing what an attendee thought. Thank you.

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  • dbritts
    replied
    Sharon,

    Thanks for the info. Every little bit helps. After almost 18 yrs. of IC, it's still trial and error!!! Debbie

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  • ICsmiles
    replied
    valium suppositories and oral valium

    Debbie,
    I have 2 mg oral pills and 10 mg suppositories. hope that helps. There are a lot of people using both oral and suppositories now, and if you do a search on this site you will find much information. Best of luck.

    REMEMBER WE ARE ALL DIFFERENT AND DO NOT TAKE ANY ONE PATIENT'S EXPERIENCE AS GOSPEL. WORK WITH YOUR DOCTOR, READ THE LITERATURE and TAKE EVERYTHING INTO ACCOUNT AS YOU MAKE DECISIONS FOR YOUR OWN HEALTHCARE. I LEARNED BY READING and TRIAL AND ERROR.

    NOTE: I will be off the computer for awhile so sorry if I do not respond to a post in the next week or so.

    Leave a comment:


  • dbritts
    replied
    ICsmiles,

    That was great info on using the valium pills instead of the suppositories. One question--my dr. goes by Dr. Moldwin's protocol--1 2mg. tablet taken 3x a day for a total of 6mg daily. I know Dr. Brookoff was using higher doses in the valium suppositories--what dosage of valium pills are you using? When my dr. prescribed 2mg valium suppositories they didn't do anything.

    Debbie

    Leave a comment:


  • ICsmiles
    replied
    Interferential Stimulator

    Last post on this, I promise! My friend returned from Dr. Brookoff with an Interferential Stimulator and instructions on proper usage. It is a very custom thing... for her, the feeling is one of gentleness and she feels better with it. A recent interview of his relates that some patients love it and I think one even giggled with it. He also noted that if it causes pain, many times that can be diagnostic. One of his patients who felt pain with the IF ended up having a problem with her colon, which had come loose and was protruding into her bladder. So in her case, she did not even have IC!
    I look forward to the day when I get to try the Interferential Stimulator.
    I have an appointment set up with Dr. Brookoff this fall and can't wait to see him!

    NOTE on the Pelvic Floor Therapy - There are trials going on at Stanford, CA. If you are near the Bay Area this is an excellent opportunity to try it without the cost issue. I am unable to do it because I live 6 hours away. Call the urology department at Stanford for more information.

    Leave a comment:


  • ICsmiles
    replied
    Cymbalta not for me

    I read in one of Dr. Brookoff's interviews that Cymbalta helps some of his IC patients with the ground glass type of pain. So I couldn't wait to try it!
    Wow. After 12 days on it, with several headaches, one bad migraine and general fuzzy head, I went off. I did not return to my Nortriptylene either - and I am feeling so much BETTER - mood-wise, not the pain. The pain is always there, but I seem to be one of those people who do not get relief from low dose antidepressants. They make me depressed! LOL!

    Leave a comment:


  • ICsmiles
    replied
    Valium suppositories-UPDATE!!

    My friend returned from her appointment with Dr. Brookoff in Denver, CO and she said the latest findings from his patients are that the valium pill itself works just as well as the suppositories!!!! He said many of his patients around the country are finding the pills easier and SO MUCH CHEAPER than the suppositories because 1) new things (like valium suppositories used vaginally) are hard for pharmacists to understand easily and 2- getting insurance companies to pay for them is impossible as they have no precendent for them. The guy from my insurance co - Blue Shield - who I was trying to get answers from seemed almost upset about it - he had a name for valium suppositories made for rectal use for some diseases, but when I said, no for vaginal use to help with urethra and bladder pain of IC, he just did NOT get it, or want to even attempt to understand.
    Dr. Brookoff told my friend to crush the pills with K-Y and insert, or even just insert the pill itself. I have tried it and it's easy - I just use a half at a time and can easily insert the powdery substance. It is also less messy - the suppositories got sticky as they dissolved as you can imagine.... yuk.

    Hope that wasn't TMI ladies!!!!

    Leave a comment:


  • dbritts
    replied
    Charisse,
    I'm new to the board, but have had IC since 1989. I also have fibromyalgia. My drs. say that alot of the pain is caused by nerves, but I've never had tingling in my pelvic region--throbbing, burning, stabbing, but definitely not tingling. I also have pernicious anemia and if my B-12 gets too low, then I do feel like I have the pins and needles, tingling feeling in my fingers, so I think nerve pain can feel different even in your own body. I developed GI problems about 5 yrs. ago and I read that the nerves that run into our bladders also run into our GI system and that causes an inflammatory response, so I think my GI problems are just an offshoot of having IC. I believe I just read that Lyrica is the first drug officially approved for fibromyalgia and I know some people who have already been using it with great success for FM--don't know about IC. That's just my experience with nerve pain, but we all have different effects from this disease.

    Ads gave a really great warning about staying safe when new treatments are coming out. I wanted to go to California back in the early 90s for back surgery to "cure" my IC. The dr. doing those surgeries lost her license after paralyzing several patients. I'm now grateful that my husband thought it was unproven and too dangerous.
    Debbie

    Leave a comment:


  • Charisse
    replied
    Thank you Ads for the warning! My drs haven't mentioned PNE yet but I did ask my rheumatologist about this being nerve pain and he said if it was nerve pain that I'd have tingling too. Does anyone here agree or disagree with this? I am going to ask my Uro-GYN next week about it. I have heard they are using Lyrica or Neurontin for pain with some success which would lead me to believe that it could be nerve related.

    Leave a comment:


  • ads
    replied
    Please be careful with pudendal nerve entrapment

    Margaret,

    I noticed you are new here, but may not be to IC/pelvic pain. Please be careful about pudendal nerve entrapment (PNE) and its current surgery as a treatment. This is a new area in medicine and there are no clinical trials with ample amounts of people to prove the surgery or testing is effective. I am not saying it completely wrong because IC like symptoms being caused by PNE seems like a step in the right direction. I have been to the PNE Houston Team, but didn't have surgery. It just want everyone to stay safe and there is a lot of information to sift thru on the web.

    Best wishes,
    ads

    P.S. you can private message on another and exchange telephone numbers. Just click on the persons name on any message and a pull down menu will come up and you can select send a private message.

    Originally posted by Margaret-Sonoma View Post
    Hi Charisse,
    I live in Sonoma, CA, and would love to really talk with another IC patient.
    Considering you have pain on bending forward, I shall take a wild but informed guess that you have some kind of nerve compression. Try going to the website "international pudendal neuropathy association.org " and see if your symptoms mimic any of those written about. I am new to posting here, and would love it if we can exchange phone numbers, but how without giving out our numbers to everyone?? JIll will know the answer. Please feel free to call me, and we can compare symptoms and strategies. Your case sounds like nerve damage or compression, and you are having referred pain to your vagina or urethra. HOpe we talk soon, all the best,
    Margaret in Sonoma

    Leave a comment:


  • Margaret-Sonoma
    replied
    Hi Charisse,
    I live in Sonoma, CA, and would love to really talk with another IC patient.
    Considering you have pain on bending forward, I shall take a wild but informed guess that you have some kind of nerve compression. Try going to the website "international pudendal neuropathy association.org " and see if your symptoms mimic any of those written about. I am new to posting here, and would love it if we can exchange phone numbers, but how without giving out our numbers to everyone?? JIll will know the answer. Please feel free to call me, and we can compare symptoms and strategies. Your case sounds like nerve damage or compression, and you are having referred pain to your vagina or urethra. HOpe we talk soon, all the best,
    Margaret in Sonoma

    Leave a comment:


  • soccergirl
    replied
    Valium Suppositories

    Hi Susan,

    I got the suppositories from Dakota Pharmacy (phone - 1-800-290-7028).

    www.dakotarx.com

    You can fax in any prescription and they will u.s. mail or fed ex you your prescription. Not sure how much they are there but I think less than a $1 a piece. That is one pharmacy that Dr. Brookoff has told people to go use Ask for Kevin, he is an owner and pharmacist.

    There is a very long thread about the valium suppositories up at the very top of the board. Jill posted it. It is called Valium Suppositories I think. There is lots of information there from people.

    Actually, I just got my delivery of baclofen rectal suppositories from Dakota pharmacy this morning by fed ex. I have not tried it yet. Anything vaginally irritates my vulva skin, I have lichen sclerosus and vulvodynia.

    Hope this helps!

    Lisa

    Leave a comment:

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