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Verapamil - an effective mast cell blocker

Discussion in 'Mast Cell Disorders/Mastocytosis' started by natasa778, Aug 31, 2016.

  1. natasa778

    natasa778 Senior Member

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    I have been reading several detailed reports on this calcium channel antagonist being an effective mast cell blocker. All these reports are by parents of kids with autism, where mast cell disoders and/or allergies are prevalent. The original rationale for using verapamil in autism was not linked to MCAS but parents were noticing that most of the positive effects were directly related to it controlling allergic and mast cell reactions. It turns out there is even some literature out there evidencing its effects in controlling mast cells, but mainly in-vitro and animal studies.

    I am aware that verapamil and other ca antagonists have been used by some ME docs, again for reasons that had nothing to do with MCAS.

    If anyone here has tried verapamil either for their MCAS or other reasons I'd be most interested to hear. Tx
     
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  2. osisposis

    osisposis Senior Member

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  3. Sidereal

    Sidereal Senior Member

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    This doesn't quite answer your query but I used another calcium channel blocker - nimodipine - and it actually made my mast cell reactions worse. Go figure.
     
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  4. ME_guy

    ME_guy

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    Verapamil is my magical treatment for ME/CFS and I joined this site recently in part to let others know about it. It lessens the muscle ache symptoms by perhaps 40 percent, decreases night sweats and body temperature fluctuations (temperature fluctuations like feeling core body heat rise with minor activity). These latter two are decreased more significantly than the aches and pains.

    I came upon verapamil by accident. It was prescribed to me by a respected neurologist (and professor at a U.S. university with a research hospital) who could not fathom why my ME/CFS symptoms were in part heightened by BMs. He was clueless about ME/CFS generally and did not come up with a reason for my ME/CFS symptoms to kick in strongly after most BMs. (Another doctor at the university hospital referred me to him hoping a good neurologist might have insights into my ME/CFS symptoms.) As an afterthought, at the end of the visit, the neurologist asked me if I got migraines. I said yes, every week or so, but not the worst kind with aura I have heard about. He said he would prescribe verapamil for me because it is proven to help prevent migraines. (Verapamil is a calcium-channel blocker primarily used to lower high blood pressure. Interestingly, some people in another forum say that verapamil might be tolerated by people with POTS:
    http://www.healthrising.org/forums/threads/verapamil.3784/ )

    BP and doses of verapamil:
    First, my blood pressure was usually fine and maybe slightly high when verapamil was first prescribed for me. Perhaps 130/80. My blood pressure remained about the same while on verapamil. In the last 6 months, after eating a better diet and losing a little weight, my blood pressure is about 120/70. I still am able to get my general practitioner doc to prescribe verapamil because I am enthusiastic about how it helps my ME/CFS and he does not know how else to help me with its symptoms.

    The neurologist initially prescribed 120 mg of Verapamil ER (extended release) to be taken once daily at bedtime. After 2-3 days on verapamil, my ME/CFS symptoms WENT AWAY COMPLETELY for nearly a week. Then the symptoms crept back over a few days as my body wised up to the new drug. I stayed on verapamil until I saw that neurologist for the second (and last) time 1 month later. My symptoms had crept back to being reduced by perhaps 20 percent in the 3 weeks before I saw him again.

    The neurologist said he did not know how he could help with my ME/CFS and BM symptoms. I then launched into a 2-minute plea for the next higher dose of verapamil. I noted that my blood pressure was no different than when I went on the verapamil, but that my ME/CFS symptoms disappeared for one glorious week, then crept back to perhaps 80 percent of what they were before. He relented and prescribed 180 mg verapamil ER. This is the dose I have mostly been on for the last few years. I take it each evening. In my experience, I can confirm that evening is the best time to take it.

    When I stepped up to the 180 mg ER dose, my symptoms receded further, but I did not have another glorious week with no symptoms. Darn. When I called to ask that the prescription be extended, his office asked if I was having any difficulties, such as new balance problems. I said no, which was true for me. He prescribed another year on the 180 mg dose. I have since been kept on that dose by other doctors, although I went off of it for a while when my doctor was uncomfortable extending that prescription. I did not go back to the original neurologist because his office is a long drive away and in my last meeting with him he said through body language that he was through with me except for the minor migraine issue. I don't know if he would have been willing to see me again for "just" that, as migraines were not my main reason to see him and they were not the most piercing, most terrible kind of migraines at that.

    The 180 mg dose reduces some of my most problematic symptoms by perhaps 40 percent, a massive cut in my mind. These symptoms are (a) muscle aches/pains, (b) brain fog that rises and falls with the level of pain, (c) stiffness when aches are greatest and energy is lowest, and (d) quickness to energy depletion when trying to be active. Unfortunately, if I try to take advantage of the lesser symptoms and become too active, I will crash back into greater aches, fog, stiffness, great energy/stamina deficit. Pacing is still important for me. When I overdo it, I pay for it. But, with verapamil, I am able to do a bit more before I get to that point, and I am more comfortable (a relative term) minute by minute, hour by hour, when I have not been overly active.

    The 180 mg ER dose reduces a couple of other symptoms by more than 40 percent, in fact more like 75-80 percent. These include (a) night sweats, and (b) my body overheating with a furnace-like feeling during and after very minor activity.

    Oh, and I don't get migraines any longer because of the verapamil. So that is a legitimate reason for me to go to my doctor and say, hey, I need the verapamil to prevent my migraines. Some docs who are not ME/CFS savvy (and there are so few) may respond to this plea as they have with me.

    I have had some coordination/balance issues in the last year, but these generally are minor for me. I do not blame the verapamil for this. I find it intriguing that verapamil might be tolerated by people with POTS and I hope there is some evidence for this. I will look for it.

    I found and joined Phoenix rising recently. I have not posted this detail about verapamil for me before now because of my fear that it could cause serious harm to people with prominent balance/POTS issues. I hope that this fear is unfounded, but people with POTS should be cautious. If verapamil may not increase POTS symptoms, or as someone said on another patient forum, even decrease those symptoms, then that would be amazing to me.

    Lastly, everyone with ME/CFS responds to different treatments differently. Others no doubt could be disappointed with verapamil. However, I believe that the efficacy of verapamil for some of us can be instructive about the mechanics of the illness.
     
    Last edited: Sep 3, 2016
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  5. bertiedog

    bertiedog Senior Member

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    @ME_guy Thanks so much for your post it is very helpful. I have POTS but that is controlled by low dose Propananol (betabloker). However I have almost daily migraines which start up every day within an hour of waking and they are really nasty but I don't get an aura.

    Somebody else who is knowledgeable asked if Verapamil might be helpful and whether I had ever tried it. It sounds like it would be a good drug for me to try but probably my GP would have to refer me to a neurologist of headache specialist for me to get it.

    The only problem I might have is that I have hyper adrenaline which the Verapamil wouldn't control I don't think, so I did wonder if I would still be able to stay on a low dose of Propananol for that. My BP isn't low around 128/78 but can go higher.

    Pam
     
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  6. natasa778

    natasa778 Senior Member

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    Thank you so much for this ME-guy! May I ask what you weight is please?

    (also a suggestion to maybe repost the whole of your post on on another section of this forum, maybe under 'general treatments' or dysautonomia or such, as it probably won't be seen by many people if it stays in this thread)
     
    Last edited: Sep 3, 2016
  7. ME_guy

    ME_guy

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    Hi bertidog. A GP I had for a few years before moving 2 years ago would not prescribe the verapamil for me because she was not in the habit of prescribing it for migraines. I lapsed from the verapamil and took magnesium instead (maybe sophomorically rationalized, because I know that Mg and Ca replace/block each other in various chemical reactions and I thought of more Mg as potentially a simplistic calcium blocker or poor-man's verapamil).

    I had to get a second neurologist who was more local to me to represcribe it and he was willing to go along with the 180 mg level. There were gap months with no verapamil and my aches definitely increased and energy decreased. Night sweats returned, etc. I saw that second neurologist for something unrelated to the verapamil, but I was sure to note that I get migraines and verapamil keeps them at bay, and also it happens to help my ME/CFS symptoms. I got the prescription again. I got the feeling from this neurologist that my migraines were the main reason he represcribed the verapamil and he gave me a sideways look when I made the case that it also helped my ME symptoms.

    My current GP is willing to extend the prescription because I have had no complications after being on it for a few years. I suspect he was not overly comfortable with keeping up that prescription at first. He is probably more comfortable with it now that I have seen him for over a year and I have not had complications. Also, I am not shy about letting him know how important I feel it is for my daily life.

    I don't know anything about hyper adrenaline issues. The verapamil has no effect on me as far as being excitable or drowsy. I also may not have POTS, although I might be starting to get it with some transient balance issues that are brief and don't threaten a fall. Your blood pressure sounds fine. If you try it, you would want to start at 120 mg (or lower?). Maybe others can chime in with their experiences. Another long-winded post. I'll try to be more brief.
     
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  8. ME_guy

    ME_guy

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    Currently, my weight is 191, down from 201. I am about 5 ft 11 inches. I have tended to eat nearly as much as when I was more active before ME/CFS and am trying to bring that down.

    As for reposting it under general treatments, okay. I will do that.
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    I know this is not relevant to probably 99% of people reading but if there is any chance that you have an autoantibody blocking the calcium channel, then per my doctors, you do not want to take any medications that further block them. I did not know this existed or pertained to me until March of this year but just wanted to mention it on the off chance it could ever help anyone else.
     
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  10. trails

    trails Senior Member

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    I've been taking a very high dose (360-480mg/day) of Verapamil for almost 30 years as a doctor-prescribed prophylactic treatment for cluster headaches. For that purpose it works great, though it is not without significant side effects (chronic and severe constipation). If it has been helping my CFS at all, I'm not aware of it.
     
  11. Alexi

    Alexi Senior Member

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    Was prescribed for superventricular tachycardia but unable to tolerate.
     

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