Nimodipine - use in ME

Sly Saint

Sly Saint

Senior Member (Voting Rights)
"
Brief notes on Nimodipine and ME/CFS
Nimodipine belongs to a group of drugs called calcium-channel blockers.


In very simple terms these drugs relax the smooth muscle in the walls of blood vessels and cause them to dilate.

So they are mainly used to lower blood pressure, treat angina, and improve the circulation in people who have Raynaud’s phenomenon (cold hands and feet).

Nimodipine is slightly different to other drugs in the group in that its main site of action is on blood vessels in the brain (the cerebral arteries)."

http://www.meassociation.org.uk/2008/01/brief-notes-on-nimodipine-and-mecfs/

see also: http://www.25megroup.org/Information/Medical/Nimodipine Use in ME, Jan 2014.pdf
 
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Dechi said:
Yes, I am still using Nimotop. I am unfortunately on a downward slope but Nimotop is helping me not go down as fast. I have been taking it for 18 months now.

If anyone is interested in knowing more, just ask !
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It was one drug that was being 'looked at' certainly back in the early 2000s ( I remember reading about it). However , in the UK it was hit or miss as to whether you could get it prescribed by your GP. More recently I have come across people that it helped 'stabilise' who have been on it for a while but can no longer get it on prescription.
Again, another thing that does not seem to have been looked into re responders/non-responders(?)
 
Sly Saint said:
It was one drug that was being 'looked at' certainly back in the early 2000s ( I remember reading about it). However , in the UK it was hit or miss as to whether you could get it prescribed by your GP. More recently I have come across people that it helped 'stabilise' who have been on it for a while but can no longer get it on prescription.
Again, another thing that does not seem to have been looked into re responders/non-responders(?)
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It’s hard to get here as well. When my prescription runs out, I will have a hard time getting a new one !
 
TiredSam said:
Just wondering how you know you would be going down faster without the Nimotop?
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Good question ! I had lowered my dose to a strict minimum at the beginning of summer. I didn’t realize it at first, but 2-3 months later I was a mess and all my symptoms had increased in a somewhat drastic way.

I upped my dose again about 3 weeks ago and went back to my previous condition.

To be honest, the fact that I did the 2 day CPET test this summer certainly didn’t help, but I’ve been slowly but surely getting worse since I started being ill about 4 years ago.
 
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This is very interesting, thank you @Sly Saint
It would be horrendous of them to stop you having Nimodipine, if it's stabilising you, @Dechi. Is the problem the long-term use of it, that's not been researched?

Hell, if the alternative is to decline, then isn't it in your best interest to continue? Why are doctors cautious when it's not needed, but stupidly reckless at times they should know better, (I have a list)?
 
Squeezy said:
This is very interesting, thank you @Sly Saint
It would be horrendous of them to stop you having Nimodipine, if it's stabilising you, @Dechi. Is the problem the long-term use of it, that's not been researched?

Hell, if the alternative is to decline, then isn't it in your best interest to continue? Why are doctors cautious when it's not needed, but stupidly reckless at times they should know better, (I have a list)?
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The problem is that it’s an off the shelf prescription and everyone is scared to prescribe something used short-term on people who had a stroke to treat someone with ME long-term.

I am hoping that since I have been using it for a long time, they are more scared to make me stop it, lol!
 
Jaybee00 said:
@Dechi
( or anyone else)

How much Nimodipine do you take per day?

Thanks
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Many years ago I was taking up to 90 mg per day. For the last 2 years I was taking 15 mg. I just stopped 2 days ago because I am having severe bouts of abdominal pain. 3 times in the past year, not related to anything I can think of.

Since 1% of people using it can have abdominal pain as a side effect, I figured it was worth it to stop it to see if it helps. I was very sleepy all day today. Slept 10 hours last night and 4-5 hours during the day, on top of resting. I’m wondering if it has anything to do with stopping it. It might also be due to my increase of LDN. Sigh. It’s complicated.
 
Clonidine works by relaxing the blood vessels and may be easier to get. I found it helped me a lot. Work done in Dundee showed that patients had stiffened walls in their blood vessels, I think Paul Cheney did as well so it is reasonable to think drugs like these would help.

They may not be suitable for everyone because they lower blood pressure and if you have OI the side effects could wipe out the gains.

If you do get it, start with a low dose and build up over a few weeks because it makes you feel sleepy. That used to be the guidelines but not anymore.
 
Cort has an article on Nimotop today. I was able to try a dosage of 30 mg for a couple weeks years ago. I stuck to just once a day looking for the kind of response Goldstein reported, but saw no change positive or negative.

Downing-Orr reports that Dr. Brown’s success rate (a complete or near complete recovery) was an astounding 80%.
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I have to say seeing redflags like this is so frustrating, which Cort also points out. I don't know the rest of Dr. Brown's protocol but I know with absolute certainty he was not creating 80% near recoveries. The book itself seems the same cliches that have not been backed up over time. Probably the most frustrating thing is labelling side-effects as toxins leaving the system.

I'm not sure what makes nimotop special over other vasodilators that cross the blood brain barrier or how modest vasodilation would cause some to rapidly recover and other to recover over years of use. But, I was interested enough to try it. Along this topic I tried to find any forml studies on such treatments and found one unpublished one on sildenafil.
 
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