Has anyone tried Nimodipine (Nimotop) to increase cerebral blood flow?

[bombsh3ll]

I am always on the lookout for new things to try, and am currently interested in Nimodipine. 

This is a calcium channel antagonist that works preferentially on the blood vessels in the brain to open them up and allow more blood flow. It can also lower systemic blood pressure at higher doses but the cerebral effect should be achieved at doses lower than needed to drop blood pressure significantly. My BP is the high side of normal anyway and doesn't drop, although I have severe orthostatic intolerance with POTS. 

There are a few reports of it being used with success in ME patients to increase cerebral blood flow, many of whom also have POTS or other form of orthostatic intolerance. 

It hardly seems to be mentioned at all on here and I wondered if anyone else has any thoughts or experience with it, good or bad. 

Poor cerebral blood flow, even when sitting (with completely normal HR and BP), is my worst symptom and it would be amazing to find something which on paper at least seems to do just that!

B xxx

[targs66]

I have never heard of this, but am curious to see if others have found it helpful.  I have the same problem with brain fog, even while I am sitting and have reasonable BP and HR! 

Thanks, and keep us posted, pls.!

[GasconAlex]

How did they measure your cerebral blood flow? Did they use the Diffuse correlation spectroscopy or the CT / PET / fmri? Do the values vary significantly between recumbent / sitting / standing?

Although I've had the standard Doppler / echo studies of the carotid arteries and the full stroke CT and MRI scans looking for blood flow problems / stroke / TIA I've never had cerebral blood flow quantified and am very interested in anything that is possible in this area.

[bombsh3ll]

23 hours ago, targs66 said:

I have never heard of this, but am curious to see if others have found it helpful.  I have the same problem with brain fog, even while I am sitting and have reasonable BP and HR! 

Thanks, and keep us posted, pls.!

Hi nice to see someone else in the UK (but sorry you have the same problems too!) This may sound a silly question but can you describe what you mean by brain fog? It is a term I see a lot but had not come across before I had POTS - I am a doctor and I use the terms presyncope or lightheadedness to describe what I feel - basically as if you are about to pass out, to varying degrees. Is this what people are referring to with brain fog?

18 hours ago, GasconAlex said:

How did they measure your cerebral blood flow? Did they use the Diffuse correlation spectroscopy or the CT / PET / fmri? Do the values vary significantly between recumbent / sitting / standing?

Although I've had the standard Doppler / echo studies of the carotid arteries and the full stroke CT and MRI scans looking for blood flow problems / stroke / TIA I've never had cerebral blood flow quantified and am very interested in anything that is possible in this area.

Sorry no I have not actually had my cerebral blood flow measured. I would really like to have this done to objectively quantify the deficit, but cannot find anywhere in the UK offering such tests. I know my brain is underperfused due to the symptom of severe lightheadedness/presyncope, which is relieved by lying down. Other causes of presyncope such as low blood sugar, low oxygen and anaemia have been excluded. 

[targs66]

hi bombsh3ll -

Always glad to see a doctor on here, though I am sorry that you have POTS!  To answer your question-  I would differentiate between what I think of as "brain fog" and a presyncope feeling:  my brain fog is a near-constant exhausted feeling like I am half asleep, with an inability to "jolt" my brain into wakefulness and functionality.  (That last sentence took about six tries, for example.)   Focusing for anything more than a few minutes is impossible.  I have trouble processing what people are saying to me.   I would attribute that more to what has been called chronic fatigue than the dysautonomia, but I suspect that my constant low BP doesn't help.  That feels very different than the "uh oh - I am going to faint" presyncope feeling, which is usually  brought on by any physical activity or even mild excitement (like a phone call).  It's quite sudden, leads to heart pounding and shakiness and then passes - but leaves me feeling depleted and more exhausted.  I hope that clarifies the difference?

I did have an "MR angiogram" when in the US.  Nothing significant was found.  I think it was to measure blood flow to the brain by examining the structure of blood vessels(?)  I don't know if it's something they would do in the UK!

Hope you can find some answers!  Keep us posted.

[bombsh3ll]

Thanks for your reply! So brain fog is different from lightheadedness - I guess I would have to be rid of lightheadedness to be sure, but no I don't think I identify with that, just different degrees of lightheadedness. 

I had a cerebral MR angiogram too in Spain, which was normal. It just looks at the structure of the vessels though, not how well the blood is flowing through them, and was done supine anyway. I was glad to get this done though. I am investigating possible places to get a transcranial doppler (sitting up) to measure cerebral blood flow.

[Pistol]

Yes - I agree with @targs66 - I have very distinct presyncopal symptoms that differ from brainfog. Brain fog is more of a generalized inability to concentrate, remember or recollect as well as process information. 

[corina]

20 hours ago, bombsh3ll said:

I am investigating possible places to get a transcranial doppler (sitting up) to measure cerebral blood flow.

Bombsh3ll, that was one of the tests my doctor located at the Leiden University Medical Center in the Netherlands did at their autonomic unit.  I think the London Clinic (Mathias) may do this too?

Hope this helps!

[bombsh3ll]

Thanks Corina!

I recently got an email back from them saying they do but you have to see one of their consultants first, which for me would be a costly waste of time plus necessitate two difficult round trips to London instead of one. I haven't ruled it out but have not heard good things about Prof Mathias - one lady spent nearly £400 for a 1 hour consult and he spent most of it asking about her marriage & inferring her illness was psychological in origin. 

It wouldn't be as bad if I could guarantee the test I want would be ordered and could be done the same day, but I would not want to risk letting him trouser £400 & not even order the TCD!

B xxx

 

 

[bombsh3ll]

On 7/27/2018 at 1:51 PM, corina said:

Bombsh3ll, that was one of the tests my doctor located at the Leiden University Medical Center in the Netherlands did at their autonomic unit. 

PS What did yours show, did you have reduced cerebral blood flow upright?

Many thanks 

B xxx

[corina]

Unfortunately I can't remember for sure but I think I had delayed reaction. I do remember that I had electrodes all over my head, bp measurement and had to bike for a certain amount of time (can't remember for how long). If interested in this test you could call them, they are on our Physician's list (Prof J.G. van Dijk LUMC Leiden The Netherlands)

 

[bombsh3ll]

Wow thanks Corina I may look into that if I cannot find anything closer to home. I do not know what the heatlh system in the Netherlands is like, do they take patients from other countries and do you have to pay privately?

I didn't realize this test was done whilst exercising, I assumed you would just be either tilted upright still, or seated in my case if unable to stand/be upright long enough for the measurements. 

That is really useful info thanks!

B xxx

[yogini]

Has this medication been studied for POTS/dysautonomia or do you know whether POTS patients have benefited? There is some overlap with ME/CFS but people with dysautonomia as their primary condition are a bit unique, I think.

[bombsh3ll]

No, there are no studies that I can find on its use in POTS, and only case reports of its use in ME, however no medicine has a particularly strong evidence base for efficacy in POTS nor is licenced for this condition specifically, so it would be empirical use based on its mechanism of action, i.e. increasing cerebral blood flow. It has no direct action on the heart and only a very minor effect on peripheral vasculature so theoretically could be useful, and has a good safety/tolerability profile. 

I am thinking about giving it a try. All existing medical evidence is born out of the idea that drug A may be effective in condition B because of how it works, and usually starts with one or two case reports, then larger scale studies and placebo controlled trials if there is sufficient efficacy, interest and funding. 

If I do decide to try it I will definitely post the results good or bad!

[targs66]

Thanks, bombsh3ll - please do keep us posted!  Best of luck.

[yogini]

On 7/30/2018 at 10:51 AM, bombsh3ll said:

No, there are no studies that I can find on its use in POTS, and only case reports of its use in ME, however no medicine has a particularly strong evidence base for efficacy in POTS nor is licenced for this condition specifically, so it would be empirical use based on its mechanism of action, i.e. increasing cerebral blood flow. It has no direct action on the heart and only a very minor effect on peripheral vasculature so theoretically could be useful, and has a good safety/tolerability profile. 

I am thinking about giving it a try. All existing medical evidence is born out of the idea that drug A may be effective in condition B because of how it works, and usually starts with one or two case reports, then larger scale studies and placebo controlled trials if there is sufficient efficacy, interest and funding. 

If I do decide to try it I will definitely post the results good or bad!

Hi, there are numerous medications which have been studied and shown to be effective for POTS/dysautonomia. You can read about them on the DINET site.

[Sarah Tee]

Just for anyone else who might be thinking of trying nimodipine, there is another medication that works on cerebral blood flow and is possibly easier to access called nicorandil. (Note that it is not easily available in the US or Canada, but is available in Australia, New Zealand, the UK and Japan.)

I don’t know whether it would be as effective as nimodipine. I will add more information when I can (waiting to discuss with specialist).

Edit: Turns out nicorandil has a rare but unpleasant side effect of ulceration of the colon. As someone who only has a couple of centimetres of colon left, which I really need to keep healthy, that is too much of a risk for me. Bit disappointed as I though this could be “the one”. For anyone who hasn’t had bowel disorders or surgery or other risk factors, it is still worth considering.