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Nimodipine (Nomitop) - has anyone tried it ?

Discussion in 'General Treatment' started by Dechi, Mar 21, 2016.

  1. Dechi

    Dechi Senior Member

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    I am currently following Dr Mason Brown's protocol, as described in " Beating chronic fatigue syndrome - a complete step-by-step " guide to recovery ", written by Kristina Downing-Orr and I was wondering if anybody has tried it ? Both Dr Brown and Dr Downing-Orr had a severe form of ME and were treated successfully with this protocol. Dr Brown has treated more than 100 patients with it and says 80% of his patients recover fully or close to it. The central element of the protocol is Nomitop, but there are also supplements to take. There are 4 easy steps and the protocol is especially made to be done at home. You can choose between the medical approach (with Nomitop, supplements and probiotics) or the all-supplement approach. I chose the medical approach.

    I started three days ago, this morning was my third dose of Nomitop. I would be interested in hearing (positive if possible) feedback on the subject.

    If anyone is interested, I have a complete report of the use of Nomitop to treat CFS/ME across the world, including side effects and success rates and the names of doctors who use it and their methods.
     
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  2. helen1

    helen1 Senior Member

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    @Dechi How are you feeling so far on it?

    I've copied and pasted some info on Nimodipine (Nomitop):

    Nimodipine is a dihydropyridine calcium channel blocker that was originally developed for the treatment of high blood pressure. Post stroke cerebral vasospasm is now the main indication for Nimodipine usage with dosages used of up to 540mg per day. It is also sometimes used to improve cognitive function in dementia patients and to lessen the pain associated with cancer.

    Nimodipine’s possible symptom effects on ME patients

    Nimodipine’s primary usage in ME patients is to improve blood flow in the brain.

    Dr. Goldstein performed a study to compare the SPECT scans of CFS patients prior to and post Nimodipine treatment. He found Nimodipine improved patients’ SPECT scans.

    ME/CFS Specialists’ opinions on Nimodipine

    The Canadian ME/CFS Guidelines suggests the use of Nimodipine as it acts“primarily on the cerebral circulation. Improves mental clarity in some but not all patients with ME, but may also have a global effect to increase relaxation, reduce fatigue, decrease tender points, and improve exercise tolerance. Common side-effects include hypotension, nausea, headache, bradycardia, skin rash, and peripheral edema. Start with 30 mg. Check effect on blood pressure. Gradually increase to 60 mg twice a day as tolerated.”

    Dr. Mason Brown has seen many of his ME/CFS patients improve with Nimodipine usage. He writes, “Nimodipine helps twenty per cent (of ME/CFS patients) very quickly, another twenty per cent over six months, and all others to varying degrees over a period of time.” He improved his own health to 95% with Nimodipine usage as a treatment for his ME/CFS. He states “The work of nimodipine is at least fourfold: to release the backlog of neurotoxins and waste products from the brain, to open up the brain circulation, to allow in oxygen and nutrients to enter and to help cognitions, pineal, hypothalamic, and pituitary function.”

    Dr. J. Goldstein, now retired, specialized in the treatment of ME patients in California. He used Nimodipine as a primary treatment for M.E. and has called it“one of the most useful treatments for ME/CFS and Fibromyalgia.” He also writes,“About 40% of CFS/FM patients taking nimodipine experience relaxation, increased energy, a decrease in tender point sensitivity, improved exercise tolerance, and enhanced mental clarity…. Nimodipine has been shown to release dopamine, serotonin, and acetylcholine…. Tolerance does not develop to the vasodiliatory effects of nimodipine, but sometimes does to its amelioration of CFS/FM symptoms.” He recommends taking 30mg to 60mg 3 times a day.

    Dr. J. Teitlebaum suggests that CFS patients take 30 mg of Nimodipine 1 to 4 times a day.

    A report of accounts of Nimodipine usage in 13 ME patients found four of them did not receive any benefit. The other nine all had improved mental clarity or general functioning; half of them achieved functioning of 50% to 100%.
     
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  3. Hip

    Hip Senior Member

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    If you search these forums for nimodipine, you'll find may threads.

    Note that nimodipine is misspelled in this thread title ("thread tools" to edit).
     
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  4. Dechi

    Dechi Senior Member

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    Thanks @helen1 ! Today is my 4th day on the meds. Yesterday I experienced dizziness and fatigue for about 3 hours after the meds started to kick in. I am currently taking 1/4 of 30 mg (I use a pill cutter as recommended) but I will be lowering to 1/8th this morning, as instructed in the book when you have side effects. Dr Brown really emphasizes going slow with the Nomitop. Also I am known to have very little tolerance to meds, as many CFS sufferers do, so this will increase my chances.

    @Hip I tried the search function but no result showed. Maybe I am not using it properly ? or maybe I was just misspelling, thanks for the heads up. I've tried editing the title but somehow couldn't manage to. I'll try again.

    I've read all the discussions from your link. They're interesting, but noone has really given feedback after trying Nimodipine for a while, and noone has given feedback on Dr Mason Brown's specific protocol. So I'll make sure to do that, whether it's positive or negative.
     
    Last edited: Mar 22, 2016
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  5. Bansaw

    Bansaw Senior Member

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    Hi Dechi, do you have a link to his protocol ? Also, am I right in thinking Nimodipine is Rx only?
     
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  6. Dechi

    Dechi Senior Member

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    @Bansaw

    Yes, Nimodipine is prescription only, and very expensive. I read somewhere on this forum that someone was able to order it online for a fraction of the price. It cost me more than 200$ cad for 28 pills, which will last more than 1 month, but I would need double that quantity if I reach 2 pills a day.

    To get the protocole, you need to buy the book. You need to take other supplements, change your diet and drink a lot of water, and everything has to be done in a certain way and order. The electronic (kindle) version of the book is less than 10$ US so I recommend you buy it. It's a really good book. The kindle app is free and can be installed on pretty much any tablet.

    https://www.amazon.ca/Beating-Chronic-Fatigue-Step---Step/dp/074994093X/ref=sr_1_1?ie=UTF8&qid=1458655020&sr=8-1&keywords=Beating chronic fatigue syndrome

    If you need to convince your doctor, there is a complete report on the use of Nimodipine for CFS I can give you. It worked with mine. And I also showed him Dr Brown's protocol.

    Here is the report on the use of Nimopidine on CFS / EM patients across the world :

    http://www.25megroup.org/Information/Medical/Nimodipine Use in ME, Jan 2014.pdf
     
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  7. Bansaw

    Bansaw Senior Member

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    Thanks, I will look into buying that book. Can I ask if the protocol has a good focus on getting your gut bacteria into good balance? I feel my gut microbiome is way out of balance and thats a primary key in my case. I see you mention "probiotics" in your post above, but is there more of an extensive focus on the gut?
     
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  8. Dechi

    Dechi Senior Member

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    @Bansaw

    There are 4 steps to the program. Step 1 is Nimodipine and Step 2 are probiotics. They need to be done at the same time. So yes, probiotics are essential, but there are only a few pages on gut microbiome. If you want to read on the subject, I recommend the book " Brain maker " by Dr Perlmutter, a neurologist, also available on Kindle.

    If you decide to do the program, come back to let us know. It would be nice to have someone to do it with !
     
    Last edited: Mar 22, 2016
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  9. ErdemX

    ErdemX Senior Member

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    I've tried it but unfortunately I decided to stop it after 1-2 months because I had much more pain (My Cfs also includes constant muscle pain). I was using Lyrica to lower the pain and I thought Nimodipine might have had some kind of counter effect that made Lyrica less effective.

    During this usage I felt that my cognitive problems has improved, I had clearer mind but I didn't feel improvement on fatigue (maybe it was too early for that). I had no side effects.

    By the way, I'm from Turkey and here you can buy it without a prescription and a box with 28 pills is something like 3.5 dollars.
     
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  10. BurnA

    BurnA Senior Member

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    Are you sure it had any active ingredient :)
     
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  11. ErdemX

    ErdemX Senior Member

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    Yeah, and I'm also sure that this ingredient costs much lesser to the drug company. Drug industry is not one of the honorable parts of our civilization. :)
     
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  12. Dechi

    Dechi Senior Member

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    I'm sorry it didn't work for you. What protocol did you follow ? Dr Brown's or something else ?
     
  13. ErdemX

    ErdemX Senior Member

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    I tried to do it as close as possible to Kristina Downing-Orr's books method. Right now I'm trying different things but in the future I can try Nimodipine again. It seems to be a promising option with low side-effects.
     
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  14. Dechi

    Dechi Senior Member

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    Great, let me know if you try again, I'm interested. Meanwhile I'll keep doing the program. This morning I lowered my dose to 1/8 th instead of 1/4 th of a pill (30 mg) and I was fine. So I'll do that a few more days before going back to 1/4.
     
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  15. Bansaw

    Bansaw Senior Member

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    Anybody know of any doctors in North Carolina area willing to prescribe Nimodipne, or are sympathetic to Dr.Browns protocol?
    Edit: Actually, since I posted this, I just got an email from a well-known local doctor. They said, " I have prescribed it [Nimodipine] many times, but the drug is expensive and may be hard to find because it is usually only used in the hospital. At any rate, I don’t have any patients who have chosen to continue therapy with this drug."
     
  16. Dechi

    Dechi Senior Member

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    if you take a look at the report I posted, there is a list of doctors who prescribe it worldwide, towards the end I think. I had no trouble getting the meds, they weren't in stock at the pharmacy but they ordered it and I got it the next day.

    Here is the list for USA, there is someone in North Carolina

    [​IMG]


    [​IMG]
     
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  17. mermaid

    mermaid Senior Member

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    Curiously enough I only googled this drug the other day as my mum has been given just 5 days prescription for it. She is 94 and had had a 'funny turn' so I don't think it will do anything very dramatic for her, but it was interesting to read the posts on here on what it was used for. I had looked it up and assumed it was for high blood pressure, but she already takes a tablet for that.

    I also have a copy of this book where Nimodipine is recommended for ME/CFS and had forgotten about it. I think the chances of my NHS (UK) GP prescribing it for me are zilch. Are you in the US @Dechi ?
     
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  18. Dechi

    Dechi Senior Member

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    From Canada. I think if you prepare well you can convince your doctor. Print all documents and highlight important parts. That's what I did. Print the whole report, it's really useful.
     
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  19. Bansaw

    Bansaw Senior Member

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    fyi
    In my previous post I said that I emailed a CFS doctor in my area who I'd seen before and who had used Nimodipine and he emailed me back and said, " I have prescribed it [Nimodipine] many times, but the drug is expensive and may be hard to find because it is usually only used in the hospital. At any rate, I don’t have any patients who have chosen to continue therapy with this drug."
    I asked him a further question "did patients discontinue because it was ineffective or too costly?"
    He replied, "Nimodipine became ineffective over time".
     
  20. Dechi

    Dechi Senior Member

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    Yes, I saw your previous answer, thanks for this information. This is one doctor's experience, and I'm sure he is telling the truth. But after more than 1 year of searching for a possible treatment, this program by Dr Mason is the best I have found, and by far. There are a few hundred cases reported of being treated well and even being cured (for many years) with this treatment. So for now it is the best option for me and I will give it all I've got. Don't forget, Nimodipine is the main ingredient for this program, but it's not the only one. Maybe this whole package makes a difference versus only taking Nimodipine.

    We'll see.
     

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