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Thread: Returning after long time

  1. #1
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    Default Returning after long time

    Hi everyone

    I used to post here long ago but lost track of this website over the years

    I'm a movement disorder patient with the conversion disorder label
    which only means the neurologists can't figure out what's wrong


    no weakness / all muscles work
    but there are random movements (muscle tension) I can't control

    usually low level
    but lately over the years things have gotten noticeably worse
    typing & handwriting are breaking down on me

    I'm still working full time / with no usable diagnosis or treatment.

    After all this time (17 years) I don't really care anymore
    if the root cause is organic (physical) or psychological
    with my luck it's probably a mix of both

    so - my question:

    Are there any Klonopin veterans out there

    who successfully tried out herbal meds?

    I had to be detoxed from Klonopin when it stopped working for me after being on it for 2 years.
    & of course that is the only med that relieved the symptoms

    no way I'll ever take that stuff again.
    other meds I've tried / discarded are too numerous to list here.

    Found a reference to Valerian Root yesterday
    but the stuff I bought seems strong

    But not as overpowering to me as the prescription muscle relaxers I've tried / discarded

    just ordered a bottle of the same stuff at a lower dose.

    I accidentally found this page listing some others here
    but in all my travels to various doctors no one ever mentioned this.

    thanks for any replies
    Last edited by Moderator #7; 08-07-2017 at 07:41 AM. Reason: No links until your 11th post.

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  3. #2
    Distinguished Community Member tic chick's Avatar
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    welcome back, leonedog !

    well, i've been on klonopin for almost 30 years for panic attacks and ptsd. generally i have no bothersome side effects. although klonopin is not a true muscle relaxant, one of the effects of it is that it does relax your muscles.

    i haven't tried any herbal medicines and i don't have problems with people who want to try them. i do take vitamin supplements, like b12 because i don't eat much meat and i donate blood about 4 times a year.

    herbal supplements are not tested by the fda as drugs are. therefore, there are no regulations that the bottle must contain what it says. your only protection in getting what you pay for is buying from a trusted website. there might be some kind of seal of approval by some organization on some supplements, but right now i can't remember what or if.

    and this is the crux of your problem. people read about herbal supplements from different places. these places say this herb is good for this and that and the other thing. how do they know? so, you go out and buy something, not really knowing if it's the right dosage or if it's really going to help you, not knowing how it's going to interact with other drugs you take. then you get some unpleasant side effect (just like fda approved drugs) because these herbals ARE drugs. people have used them for hundreds of years, but they knew how to use them. if you're interested in more natural ways to help yourself, be good to your body and find a doctor (a naturopath, an alternative medicine doctor), who has experience in herbal medicine. this is serious medicine and you need someone with experience in knowing how and which drugs work.

    i wish you luck in your search for an alternative method to treat your probs and i hope you find a doctor or professional to help you on your journey.

    thank you for sharing,
    jeannie
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

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  5. #3
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    Hi Tic Chick:

    ?30 years?

    yes Klonopin is an anti-anxiety pill
    and oh-boy does the anxiety come back on withdrawal.

    And yes I know I need to pick out a professional to run my medical case
    but easier said than done
    (doctors have told me flat out not to come back!)

    as of now I'm the only one running the show
    I have one appointment with a new psych doctor 2 months out
    for "cognitive behavioral therapy"
    even though I can't really figure out what triggers or thoughts I'm supposed to be avoiding.

    I already have this distrust of herbalists & chiropractors
    or as some seem to be called: "functional neurologists"
    besides the obvious fact they want to be paid in cash / not insurance


    The main reason I'm considering this route
    is from the one time I tried the valarian last saturday night
    I actually did get some positive results upon waking up

    (for a few hours the stiffness was gone & full manual dexterity returned in my left hand)
    so I do have this small glimmer of hope that something may be possible

    But my typical side effect of dizzyness was there too
    that I've experienced with many-many other prescription meds
    which is the deal breaker.

    I have also had experience with "boutique" / cash only
    fibromyalgia centers before with mixed results
    The particular one involved was a real M.D.

    & He did get me a safe way to get a solid 6 hours of sleep which I'm still on
    Using on an off label effect on a alpha blocker blood pressure med clonidine
    which I'm very happy with (am borderline high blood pressure anyway)

    But he also landed me in the hospital from pumping up my thyroid T3 levels too much (tachycardia / De-hydration)
    From following his organization's play book

    so basically that's why I'm posting here looking for advice

    thanks

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  7. #4
    Distinguished Community Member tic chick's Avatar
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    hey leonedog!

    i've been to baltimore. it's a pretty big city and also close to new york. cognitive behavioral therapy might work for the psychological reasons you say might be part of the cause of your probs. i would google alternative medicine doctors in your area or another large metro area you could travel. we can't give medical advice here on BT. it's part of the terms of service, the rules for posting here. i've been here since about 1999 and the rules have remained. yes, non-MD alternative practitioners are usually not covered by insurance, so they ask for cash. that's why doctors experienced in alternative medicine might help you get your care paid for by insurance, although i doubt they will pay for herbals or supplements.

    i'm going to recommend a website: https://www.iherb.com/info/links
    right in the middle of the page under "natural and alternative databases" is are the words "Conditions A-Z'. "Herbs and Supplements A-Z" will give you lists of drugs that you can click on and read what conditions they've helped and suggested dosages. at least you might get an idea of what a safe dosage is/and or if that herbal might work on your conditions. the best studies on drugs are double-blind studies, where neither doctor nor patient knows whether patients are getting the drug or a placebo.

    yes, i've been on klonopin for 30+ years. i have had tourette syndrome since age 6. at age 19, in the space of a year, i was involved in 3 incidents where guns were pointed at me. i developed a fear of going to sleep and couldn't fall asleep until 5am. this lasted about a year and i also became agoraphobic for awhile, but was able to help myself with that problem. i also started having panic attacks, 2-3 times a week. i got married, had 3 kids and did not take any drugs during pregnancy for tourette syndrome or panic attacks because i didn't want to harm my unborn children. i continued to have 2-3 panic attacks a week that i hid from my children so they wouldn't get scared. it was very hard. at age 30, finished having children, i found a neurologist specializing in movement disorders. he started me on drugs to help the tourette. the third drug i tried, helped my ts a little, but i noticed my panic attacks went away. i have had small panic attacks, maybe once per year since then, but nothing like what i had before starting klonopin. i started out taking 4mg. a day, now i take 3 mg. a day. there is no med for ts and the ones they give off label are antipsychotics. not for me. yes, i am dependent on klonopin, but not addicted. i don't have addictive behaviors and i am managed by my primary care doc. i know i will be on klonopin for life and i have periodic tests to make sure my liver and kidneys are ok. the last 30 years have been blessed for me. i don't know what would have happened to me if i had continued to have 2-3 panic attacks a week for the past 30 years.

    finding a good doctor is time consuming, hit or miss. once you find one, they are wonderful.

    i hope the iherb website helps you .

    jeannie
    Last edited by tic chick; 08-07-2017 at 09:12 PM.
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

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