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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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No PEM with new medication

natasa778

Senior Member
Messages
1,774
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.

If you cannot get nimodipine rx'ed you might want to try verapamil, it is available from some canadian pharmacies and relatively cheap.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
Most of the medications and supplements that alleviate my chronic bodywide inflammation have one thing in common; Calcium channel inhibition in some form. I would therefore like to try nimodipine, interesting stuff. I find it strange that not more people are on it.
Problem is that i suffer from POTS, hopefully nimodipine will not make it worse.
 

Jessie 107

Senior Member
Messages
291
Location
Brighton
I would love to be able to get rid of PEM, I would cope with the other symptoms but for me PEM is the worst. To be able to walk again with my dogs would be wonderful.
My question is, would my doctor be able to prescribe this for me? He doesn't seem to know much about me /cfs at all.
 

Dechi

Senior Member
Messages
1,454
@Jessie 107 Nimotop is one of the drugs recommended in the canadian criteria consensus for brain fog. If he's open, you could print him a copy and bring it to him. There is also great work done by Susan Parker that you can easily find on the web. She lists many doctors across the world who are prescribing it, along with tons of good infos.
 

Dechi

Senior Member
Messages
1,454
@Dechi Fascinating results. Do you happened to know which CFS/ME subgroup you belong to? (Infection or Autoimmune) is your CFS/ME sudden onset or gradual onset?

@hamsterman I have proof of infection by an enterovirus.

As a follow-up, I have to admit I have been regressing in the last year. I do believe nimotop is still helping me, but unfortunately the illness is progressing. It helps me sleep and function a little better still, but not as much as I thought in the beginning. Also, since it's very expensive, I am cutting down as much as I can. Right now I am taking a small dose in the morning only. Since I am worse in winter, most probably I will have to increase my dose in december or so.
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
@hamsterman I have proof of infection by an enterovirus.

As a follow-up, I have to admit I have been regressing in the last year. I do believe nimotop is still helping me, but unfortunately the illness is progressing. It helps me sleep and function a little better still, but not as much as I thought in the beginning. Also, since it's very expensive, I am cutting down as much as I can. Right now I am taking a small dose in the morning only. Since I am worse in winter, most probably I will have to increase my dose in december or so.


Thanks. I am just noticing that treatment of PEM seems to vary quite a bit depending upon the subgroup. I'm in the 2nd group (auto-immune), but I may try Nimodipine, at least test it out.