MVD and TN

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How do you COPE with this disease?

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  • Posted

    Greg,

    Tegretol works very well for me. But not for everyone, or some can't manage the sidde effects.

    eddie13

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  • Posted

    Its really hard ive been on alot of drugs worst are the side effects i have good days an bad though my muscles hurt from oxcarbazepine it sucks I have tpn
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  • Posted

    Hello Greg, Because this horrible condition is different for everyone, we keep track of what each other has tried or is trying and work out the order in which to try them. Each one of us must have a good Neurologist as there is no way a GP, no matter how nice or how knowledgeable can have the information needed. We have to weigh up what our Neurologist says, and sometimes, we have to pressure them to let us try something which they, themselves have not recommended to us. We have to take into consideration any other medical conditions we have and we have to research, research, research. You cannot afford to let the doctors alone manage this condition. You must take some responsibility for your own health, find and join other forums to get their ideas too and you must never give up. Know we are with you.
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    • Posted

      Right on Valkyrie!  Well said and right on!  WE have to be our own advocates!  Docs have mostly no clue. Even neurologists are often clueless but they can at least write the prescriptions!  I find the right neurosurgeon to be the most helpful, for me.everyone has to find there own answer! And put up with the ignorance around this problem! Oi!

       

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  • Posted

    It's one of the most difficult and rare conditions to handle so I was fortunate that my family and a couple of close friends were very supportive. Tegretol seems to be the go to medication for this, even though the side effects are bad. Mvd surgery works well for most cases. Talk to an experienced neurosurgeon. I've heard of Nick Patel in London and Dr. Mishra in India, these two have handled a lot of these cases. Unfortunately, I couldn't go to either as I didn't know at the time of my surgery.

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  • Posted

    Hi Greg,

    Valkyrie has put it very well, we are all different and our metabolisms will differ as will our responses to the many and varied medications out there.

    For me Carbamazepine works well in respect of reducing the frequency and intensity of the pain. I also take Amitriptyline for neuropathic pain. And I also take a variety of other medications for an existing condition. The only side effect that I've had that is NOT a problem AT ALL is the sleepiness, having existed on 2 - 3 hours sleep until this last year or so it is actually a bonus! Unfortunately I have had a rash of rashes!! One of which is particularly worrying, having researched it I suspect that it may be a type of Vasculitis and could be linked with the Carbamazepine. Although, I do have autoimmune disease anyway so it could just be coincidental!?! Anyhow, I'll discuss this my GP and Dermatologist and see what options there are. Incidentally my GP has been very supportive and, like my Dentist, seems to have a good knowledge of the condition and related medications, he has allowed me to play with the doses and frequency up to a maximum of 800mg per day, at which point I'll be referred to a Neurologist.  As to how this relates to your question................ 

    We do the best we can with what's available to us, and when it flare's up we take to the sofa and 'do drugs' until it passes!! 

    Best wishes.

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  • Posted

    Hi Greg,

    I feel like TN affects every single patient in different levels. “Perhaps for some a lot worse than others?”

    Me; Am fairly new to this TN condition and its horrible pain, I have only experienced it now, for about two years.

    In my case; my TN symptoms, or TN condition can change just like the weather.... One day it can be extremely painful, or let’s say “horribly painful” and some days is will be “not so bad!” 

    As far to the meds I am taking; At the start of my TN condition; I was prescribed Tegretol by my Doctor. He started me with 100Mg twice a day, but. Soon enough, ended taking 600Mg twice per day.  Due to extreme TN pain I was experiencing, “it was unbearably painful and debilitating.”  It would re-occur almost every 5-10 minutes, though the day.

    But thank God, almost as it started, it begun to dissipate, or disappear After several months of taking 600mg twice per day, my TN symptoms begun to dissipate a little at a time, until “it became almost nonexistent” to about at 80% of the time.  Now. Since I am not feeling the TN symptoms that bad (anymore)…  I decided to start diluting my Tegretol dosage ever so slowly.  And “through a course of several months" I managed to reduce it, or take it down to about 200MG once per day, and some times “none”…  Currently; I take 200Mg once per day, but. Only when I need it… I do not take it daily!

      

    This process took me about six months of systematically and slowly reducing my dosage of the Tegretol “taking 200Mg less per day” on days and taking a full dosage at other days. Until it was reduced to 200Mgs at day.

     Example:

     For about two weeks I would take 600Mg in the morning, and 400Mg in the evening for that entire week. Then; on the next week I would reverse that, to 400Mg in the morning and 600 and the evening. And after doing that for about a month in half. Then I would take 400MG in the evening and 200Mg in the morning, then reversing that to 200Mg in the evening and 400Mg in the morning, did that for about another month in a half. And eventually after about 6 months of systematically reducing my dosage “ever so slowly” I managed to get it to 200Mg once per day, and then none.

    When this TN started for me, my pain level was at about a 10. 1 being almost none, 10 being at its worst.  But now; it is at a very mild level: Like a (1). Again (1) being the least amount of pain (10) being the worst kind of pain. 

    Greg; I do not know how long you have been taking your meds, how much do you take, or how bad your pain is?  But. If you are able to reduce it, I would definitely recommend doing so. Just be careful, not to stop cold turkey!  That will worsen your condition. TRUST ME, I tried doing it that way already, and it was a bad mistake!  (You do not want to do that!!)

    But. After experimenting with different methods, l I figured out a method that worked best for me.

     

    Just a health NOTE:

     When I was on 600MG twice a day, I ate like a PIG, and used to urinate really dark and it smelled really bad. Also; my kidneys started to be affected to some level, because “it will burn when urinating at times” Now that I managed to control the Tegretol levels to almost none, I feel healthier and I am back to normal with my appetite, and also urinate normal and almost got my pain levels to an nonexistent, or ever so slightly pain level.

    What keeps my TN symptoms at bay, or keeps it from reoccurring?  Well: I found-out that if I keep myself busy, or if I do any type of physical activity “when my TN symptoms start acting up, they lessen, or tend to disappear when I do get busy, or start to exercise, or become physically active.

    In another note: I feel that my TN condition is here to stay with me “for the rest of my life” but, I have worked ways, or methods to help me deal with it.  I had to figure-out some ways, or practices that do help me lessen it, or minimize it “when it starts to act up.” And though many trial and error practices, "I found out what works best for me when dealing with my TN pain symptoms.

     I MUST SAY that I feel so fortunate “that I have found ways, or methods” to minimize my TN symptoms and that I have almost managed to eliminate “the need” of me needing to take my medication.”  I can almost say that I have managed to control my TN symptoms to a nonexistent presence.

     

    Take care!

    God bless!

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