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No PEM with new medication

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Dechi, Dec 23, 2016.

  1. Dechi

    Dechi Senior Member

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    As @Hip suggested, I am opening this thread in the hope that it might help someone else deal with PEM.

    When I started being sick, for the first year, I was crashing a lot, no matter how hard I tried not to. 21 days without a crash was my record. Then, in march 2016, I convinced my doctor to prescribe me Nimodipine (Nimotop). I had bought a book about treating ME and had decided to follow this protocol that used Nimotop as it's main ingredient.

    I started with 7.5 mg once a day (1/4th of a pill), but could not tolerate it. I knew I had to manage the dosage myself according to side effects, so I decreased to 3.75 mg per day (1/8 th of a pill). Then I was okay and from there I slowly increased my way up to 30 mg twice per day (once in the morning, once in pm). Sometimes I had to decrease for a week then start going up again. I went as high as 45 mg twice a day, but my maintenance dose is 30 mg twice a day. This whole process took 2 months !

    After 2 months, in may 2015, I stopped having crashes. I didn't realize it right away, because this is not the type of drug where you just wake up one day and feel like your life has miraculously changed... But I was recording everything in a journal, keeping stats and graphs, and in august, I realized I hadn't had one single crash for the whole summer !

    Before taking Nimotop, I couldn't do any exercise without jeopardizing my health. I had stopped trying to go to the gym because it was making me crash. I had to stop working with my physical therapist, because no matter how much easier she made the program, I was still crashing. At the end of our work together, I was only doing stretches and still couldn't manage it. Walking was hard. When I took the dog for a walk, I had to sit down to rest every 15 minutes or so.

    After Nimotop, I started going to the gym again. I had learned from all my crashes so I made up a nice program that was achievable and was able to stick to it (3 minutes of weight lifting over a period of 45 minutes. The weights are pretty heavy). Also, I was able to start biking again outside. At first I would only go for 20 minutes at a time, and my speed would stay around 12km/h. I went maybe 3 times a week. After a while, I could go for as long as 60 minutes, when I was having a good day. And my average speed increased to 18-20 km on those good days. That is quite an accomplishement compared to what I could do prior to Nimotop.

    3 weeks ago I had a definite proof that Nimotop is what's making the difference. I had to stop it to take a stress echo, where I had to pedal lying down for less then 9 minutes. 24 hours later I had the first crash I had since Nimotop had started to work, in may 2016. It took me 10-12 days to go back to my baseline. I was depressed and scared, I was afraid I wouldn't go back to what I was. I started taking Nimotop as soon as I could and I slowly improved to my prior level. Gym is okay again.

    I think people don't give enough credit to this drug. Most of those who try it want it to work really fast and they start off on high doses and get too many side effects and quit. I think if people took their time to slowly increase the dosage and tried it at least 3 months, they would have success more often. Sometimes it works on cognitive problems, also.

    It's not a miracle drug and it doesn't solve all our problems. In fact, pretty much is the same with me, except for PEM. But removing PEM from this dreadful illness is already a precious gift.
     
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  2. Bansaw

    Bansaw Senior Member

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    I experienced a boost with Nimotop but three weeks into taking it, I got some heart palpations so I decided to stop.
     
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  3. Dechi

    Dechi Senior Member

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    @Bansaw If I remember correctly, you had ordered the liquid gel capsules and couldn't cut your pills. It this is the case, maybe you would have had a better chance of succeeding with a much smaller dose to start with. The side effects can be quite drastic, that's why we need to start with a very small dose, and increase very gradually over a long period.
     
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  4. Apple

    Apple Senior Member

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    I'm glad you've found something that's helping you :)

    Can you explain a little bit about what Nimodipine is, and what it does etc
     
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  5. lnester7

    lnester7 Seven

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    I think Cfs ( the OI) part is 2 types plp will do good on vasso dilators ( as calcium channel blockers )

    I do well on the opposite vassoncontroctor ( midodrine)

    No idea why not more OI explorations is done in Cfs.

    For me too, not as much PEM and I am very active considering.
     
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  6. MikeJackmin

    MikeJackmin Senior Member

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  7. Hip

    Hip Senior Member

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    Very impressed that you persisted with this protocol, and did not immediately give up when side effects hit. You instead realized that you had to lower your dose, and slowly titrate the daily dose upwards, so tat your body could get accustomed and acclimatized to this calcium channel blocker.

    I can imagine that some patients might abandon their testing of this drug if they experience some side effects, but it seems that in these circumstances, you just need to lower the dose initially, and build up slowly.



    Nimodipine is drug number 3 in Dr Jay Goldstein's Top 23 Drugs For ME/CFS Treatment.

    Below are some snippets about nimodipine from Erica Verrillo's book Chronic Fatigue Syndrome: A Treatment Guide. Erica Verrillo has very kindly posted the first edition of her book online for anyone to read for free on her blog. I hope Erica does not mind me pasting a small snippet from this book below.


    The book also notes some of the side effects that ME/CFS patients may experience with Nimodipine and other calcium channel blocker drugs:


    Apparently nimodipine is unique among calcium channel blocker drugs in that it can cross the blood-brain barrier, and enter into the brain.


    Some other PEM reducing supplements are detailed in this thread.
     
    Last edited: Dec 23, 2016
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  8. Dechi

    Dechi Senior Member

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    Thank you @Hip, I think your document explains very well the effects of Nimotop.

    I forgot to say something that is strange : Nimotop is said to lower blood pressure but in my case (I have low blood pressure) it bring sit up to almost the ideal range (110/60 with Nimotop instead of 90/45 and lower without Nimotop).

    So if you have low blood pressure, I think you could still give it a try if you are very careful and start very slowly.
     
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  9. natasa778

    natasa778 Senior Member

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    A couple of people have reported taking verapamil (another ca blocker) eases some of their ME symptoms. @ME_guy called it "my magical treatment for ME/CFS" http://forums.phoenixrising.me/inde...-blocker-eases-my-symptoms.46616/#post-759590 (still working?). There are reports on verapamil helping some kids and adults with autism, reducing various negative symptoms, sometimes massively, and improving overall functioning.

    There are several verapamil threads on this forum.

    @Dechi what was the book you mention?
     
    Last edited: Dec 23, 2016
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  10. alex3619

    alex3619 Senior Member

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    My calcium channel blocker side effect was brutal insomnia. I was on Lercanidipine. Every month or so I would sleep an hour less per night. At the end before I figured it out I was sleeping only minutes a day, and broken up at that. I had been in decline that entire time. The first night on new (actually old, they cause neuropathy instead) meds I slept more than I had in the entire previous week, then twelve hours the next night, and I have been improving ever since. This is a side effect they don't warn about.
     
  11. natasa778

    natasa778 Senior Member

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    I am seeing this reported by parents of kids taking verapamil. In most cases the insomnia-effect is not too severe and resolves after a week or so. One report of severe insomnia kicking in straight away, but in this case there were no positive effects, ie the child was a non-responder so the trial was stopped.
     
  12. Dechi

    Dechi Senior Member

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    I do have insomnia, but I had it before. Nimotop isn't giving me any side effects except flushing in the face and dizziness, if I up the dosage too much. But on my maintenance dose, you would think I am not taking any drugs. I don't know about the other calcium channel blockers, but Nimodipine is known to have very little side effects.
     
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  13. *GG*

    *GG* Senior Member

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    Hmm, think I would have heard of this before, maybe I did, :( LOL Going to have to send an email to my Dr and see if he would prescribe? I already have pretty good exercise tolerance for this illness

    Do take medicine now for high blood pressure, so perhaps this would help in that arena. as well!

    GG
     
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  14. Dechi

    Dechi Senior Member

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  15. Mary

    Mary Senior Member

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    @Dechi - Thanks for posting this - I'd never heard of this before as a means of beating PEM. PEM is my bĂȘte noir, I can't imagine being able to get a handle on it.

    What were the bad side effects you had when you first started the Nimotop at too high of a dose?
     
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  16. Dechi

    Dechi Senior Member

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    @Mary The side effects were very bad dizziness and weird general feeling, almost like an out of body experience. Very unpleasant.
     
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I have been tempted to try Nimodipine several times, but I live alone, have two cats and my doctor is about 3 mikes away. I have lost touch with almost everyone while trying to live with this illness. I can't afford to be that ill!

    But it is so tempting. And I have high blood pressure, so it might not have the bad effects it has on some people.
     
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  18. PatJ

    PatJ far and free I gaze

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    I tried Verapamil in 2010. I think it almost killed me one night. On the third night after starting Verapamil I woke up with my heart straining to beat, feeling like a wet paper bag trying to inflate, while at the same time it felt like my blood pressure had gone so high that every blood vessel in my body was straining to avoid exploding. I also couldn't move for 20-30 seconds when I first awoke, but then my heart started beating normally and the pressure reduced and I could move again. It sounds dramatic but that's how it felt. If you've ever seen the movie 'Scanners', or even the original cover for it, you'll have an idea of how I felt.

    It took two weeks for the palpitations, chest pains, and left arm pains to subside. Palpitations were worse at night and prevented sleep entirely on some nights. I had heart palpitations every-so-often for a couple of years afterward but I'm not sure if it was residual damage from the Verapamil or related to something else. I went to the ER after the first week of heart palpitations and they did an ECG but said the results looked OK.

    The starting dose was probably too high for me at 120mg slow release per day. I didn't realize at that point that I had the common CFS/ME effect of medication hypersensitivity.
     
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  19. PatJ

    PatJ far and free I gaze

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    Since we're talking about calcium channel blockers I should mention that tried Flunarazine in 2008 for 10 weeks. Weeks 7 and 8 were wonderful. I had much more energy, less exercise induced muscle fatigue and PEM, reduced hypersensitivity to computer monitors, and could think more clearly.

    Week 9 is where the effects started to wear off and by the start of week 10 the beneficial effects had disappeared. The neurologist who prescribed it said that if the effect disappeared that I would have to find another option.

    It was prescribed because the neuro diagnosed me with migraine. This was before I self diagnosed CFS/ME. At the time I was sick enough to not be able to work but was much more physically functional than I am now.
     
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  20. Dechi

    Dechi Senior Member

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    If you start very slowly, even at 1/16th of a pill if you have to, and increase over a long period of time, even decreasing if need be before increasing again, I think you're chances are good.
     
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