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Verapamil, a calcium-channel blocker, eases my symptoms

Discussion in 'General Treatment' started by ME_guy, Sep 3, 2016.

  1. 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 after the first visit. 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.
     
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  2. frederic83

    frederic83 Senior Member

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    What does BM mean, please. Thanks.
     
  3. ME_guy

    ME_guy

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    Oh. BM is bowel movement.

    I get post-activity exhaustion and deep muscle aches and brain fog. Separately, I also get these symptoms after a bowel movement. I feel the same until 15-20 minutes after a BM. At that point, deep muscle aches all over, exhaustion, and brain fog surge in. Stamina is almost nonexistent for a while. The feeling plateaus for a couple of hours and then slowly recedes over 8 to 36 hours.

    I feel that I have 2 prominent triggers for more intense ME/CFS symptoms: activity and BMs.

    I have a background level of ME/CFS that does not go away, but is definitely reduced with verapamil.
     
  4. Bansaw

    Bansaw Senior Member

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    Thanks for sharing.
    I just tried a treatment, Nimodipine, which is also a calcium channel blocker. This purports to increase bloodflow to the brain. And it did give me a noticeable boost, but I developed side effects to it, namely a tightness in my chest area and two weeks later, palpitations. So, I stopped to be cautious.
    I think my CFS personally is linked to my HPA axis and my brain's control of that. Thus increasing blood flow to my brain caused it to function and affect the HPA positively.
     
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  5. ME_guy

    ME_guy

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    I just looked up HPA axis and saw a bunch of terms I have never encountered. A lot going on there.
    I have not experienced tightness in my chest or heart palpitations on verapamil, but I don't know if that is significant for you. I do have some generalized anxiety that I am controlling with a medication, so maybe I should become more familiar with the HPA axis.
     
  6. alicec

    alicec Senior Member

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    The worst adverse drug reaction I have ever had was to a calcium channel blocker (instant severe migraine). This was a long time ago, before the onset of CFS, and don't remember the name of the drug.

    Nothing would induce me to try another calcium channel blocker.
     
    ME_guy likes this.
  7. Gingergrrl

    Gingergrrl Senior Member

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    I put a post in here but it disappeared unless I somehow didn't post it correctly?!

    I had written that if anyone has an autoantibody that blocks the calcium channel like I do than it could be dangerous to block it further and my doctors told me not to ever take a CCB or meds with CCB properties.

    I know this won't pertain to most people but wanted to post it just in case it could help someone.
     
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  8. ME_guy

    ME_guy

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    Gingergrrl and alicec. Thank you very very much for your experiences and warnings on calcium channel blockers. I hope that my helpful response to a CCB does not lead to someone else's very bad reaction. Perhaps my form of ME/CFS is a minority condition. Or maybe there are a number of important subtypes of ME and so no one will be in a group with over 50 percent representation.

    Some day soon, it would be great if we could all accurately be categorized into types and subtypes--or combinations of types--of ME/CFS. We would know much better how to treat it, and with smarts, cure it.

    The major studies of people with CFS had better expect to find major anomalies of the condition within their cohorts. To expect otherwise would be naive.
     
    Gingergrrl likes this.
  9. Gingergrrl

    Gingergrrl Senior Member

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    Please don't worry and we all share stories and anecdotes of reactions to meds and supplements all the time. I think many people do tolerate and are helped greatly by CCB's. I tried one in 2014 for POTS (before I ever knew I had this autoantibody and for all I know, I did not even have it yet at that time) and it dropped my BP very low and I threw up and almost fainted. The doctor took me off immediately (after one dose) and put me back on the beta blocker which works well for me (for POTS). In general I have not done well with several meds that block the calcium channel and this was not the only one. But this is probably not relevant for many others.

    I don't think yours is the minority but it's funny you said that b/c I usually feel that my version is in the minority or that mine is possibly another illness altogether. And I agree re: the sub-types and that no group will have over 50 percent representation (even though I never quite thought of it that way before) but that makes the most sense to me.

    I agree and that is my dream scenario!
     
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  10. anciendaze

    anciendaze Senior Member

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    @ME_guy

    Gingergrrl's treatment with calcium-channel blockers came about because she had a mast-cell activation disorder, and mast cells need calcium channels to release biochemicals in vesicles. You may have been successfully treated for an undiagnosed mast-cell disorder. Most such cases go on for years before they are diagnosed, which leads to all manner of complications. Her problems with orthostatic hypotension due to antibodies to N-type calcium channels happened to put her in the same clinical diagnostic class as people with entirely different biochemical abnormalities.

    This highlights the extent to which "CFS" has been used as a "wastebasket diagnosis" for cases doctors don't want to deal with.
     
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  11. 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.
     
  12. natasa778

    natasa778 Senior Member

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    Med Hypothesis fwiw...

    http://www.medical-hypotheses.com/article/0306-9877(94)90049-3/abstract

     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    @natasa778 Would an injury to the calcium channels be the same effect as an autoantibody blocking them? Am truly asking b/c I have no clue! Am wondering if an injury could be repaired differently than getting rid of the antibody?
     
  14. natasa778

    natasa778 Senior Member

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    Possibly, but on the other hand the positive effects of verapamil in this case could be totally unrelated to mast cells, or even to calcium channels as such - verapamil is currently being trialled in type 1 diabetes, after it was shown in animal studies to have an effect on some such unrelated cellular mechanism (details now escape me, should be easy to google find).

    In this particular case, given the worsening of symptoms after BMs, it is more likely that something like this is at play:

    The role of the autonomic nervous system in the action of verapamil on the sinus node in man
    The results suggest that the autonomic nervous system plays an important part in modulating the effect of verapamil on SN function in man. The cardio-accelerating effect of verapamil is either provoked by a fall in blood pressure and a consecutive restraint of vagal innervation on the sinus node or a direct vagolytic action of the drug..
     
    Last edited: Sep 4, 2016
  15. natasa778

    natasa778 Senior Member

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  16. Gingergrrl

    Gingergrrl Senior Member

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    I tried the CCB (Diltiazem, not Verapamil) for POTS about a year prior to being diagnosed with a mast cell disease so that part was not on the radar yet. I also do not know if I had the calcium channel antibodies in 2014 or if they developed at a later date (and this was diagnosed in March 2016).

    All I know is that I had a horrible reaction to one pill (huge BP drop, vomited which I had not done since I was a child, and almost fainted) and was immediately switched back to the BB. It was not until two years later that I learned that I have the calcium autoantibody and was told not to take any meds that further block the calcium channel. So it makes me wonder if I had the autoantibody in 2014 and just didn't know it vs. that I just did not do well with a CCB for POTS due to my dysautonomia itself or other reasons?

    I was not on Midodrine or anything at that time to increase my BP. The first treatment that literally keeps my BP raised for about two weeks without Midodrine (but then fades in the third week) is IVIG. Post-IVIG my BP stays around 103/73 (good BP and good pulse pressure and I feel better) but by the third week, like right now, it drops my BP and my PP is only 18 again.

    I wish I understood it all better. I can report what happened but can rarely report why it happened!
     
  17. natasa778

    natasa778 Senior Member

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    That is a million dollar question ... afaik autoantibodies can be 'reactive' (reaction to injury?) and non-pathogenic, but in your case it sounds as if they probably are, or at least adding insult to injury. :(
     
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  18. anciendaze

    anciendaze Senior Member

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    It is hard to find anything in physiology which is truly unrelated to a wide range of metabolic pathways, and autonomic function gets into everything. In particular every time a cell releases biochemicals from vesicles you can be certain some kind calcium channel is involved.

    Another possible connection with type 1 diabetes shows up with antibodies to GAD65, a particular glutamic acid decarboxylase important in conversion of glutamates to GABA. This has obvious effects on autonomic function via a shift from GABA to glutamates and probably from parasympathetic to sympathetic autonomic activity. I've been interested in any connection between this and ion channelopathies because the combination of a channelopathy and type 1 diabetes is frequently fatal. I know one survivor who has beaten the odds -- so far.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    Natassa, in my case, we believe the autoantibodies are pathogenic (but am not sure how this is proven except by my symptoms and hopefully by future improvements after treatments to reduce them). Also, when you said "injury" do you mean a literal injury or would a virus or mold exposure be considered an "injury"? Sorry if dumb-ass question :D.

    Agreed and dysautonomia (IST and POTS) was my very first clue that something was wrong. I know my autonomic system is completely messed up and that this effects everything else. I just don't know how to fix it.

    Eek... this scares me a bit and I had not heard this before! Do you mean any ion channelopathy combined with type 1 diabetes is often fatal? I don't actually have diabetes (negative on about 6-7 different tests run by my Endo this year) but I do have the GAD65 making me higher risk which is why I am tapering off of Cortef to try to reduce the risk. Some of my docs think I have this antibody for other reasons that will never manifest in diabetes but I can't risk it.

    In any case, what is the reason that an ion channelopathy and diabetes can be fatal? :eek::nervous::aghhh:
     
  20. knackers323

    knackers323 Senior Member

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    Anyone know a good online pharmacy for veraptamil nimodipine or other calcium channel blocker?
     

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