Seeking Recommendations for Vasodilators Effective in Treating ME/CFS

[Dude]

Hello friends,

After I take a hot shower or visit a sauna, I tend to feel significantly better for about 20 minutes. Symptoms like pain, headaches and a flu-like feeling almost completely disappear. Is anyone else experiencing this?
I know many people with ME/CFS have issues with heat.

I suspect that I might have a problem with my blood vessels, which expand in heat, potentially improving blood flow. Has anyone had positive experiences with vasodilators? I have an appointment with my GP next week and I'm considering suggesting a medication for trial. Nimodipine has come up in my preliminary search and I intend to try it out. Does anyone else know of medications that could be beneficial? Ideally, ones supported by studies, even if they're related to long Covid. My doctor isn't very open to experimentation, so I usually need a study to persuade him.

Thanks in advance

 

[BrightCandle]

When I was very severe showers were terrible for me but I think it was due to the exertion. I had more luck with baths where I just laid there in magnesium salts. However when I am improved on the severe or moderate/severe boundary showers have always made me feel a little better for 20 minutes or so. The problem is its still an exertion so I need to rest afterwards and that will be largely it for the day.

I have done various supplement ends of vasodilators and vasoconstrictors and constriction seems to help whereas dilation makes me feel worse. Its definitely worth a try to see if any improvement occurs, my guess is the heat of showers improvement is not vasodilation but something else, maybe the sinus clearing effect of the water mist.

 

[Hip]

Does anyone else know of medications that could be beneficial?

ME/CFS is known to have diminished blood flow to the brain, so if you want cerebral vasodilators which increase blood flow though the brain microcirculation, then there are several supplements which are demonstrated to help:

Brain Blood Vessel Vasodilators:

• Vinpocetine increases cerebral microcirculation. 1
• Ginkgo biloba increases microcirculation 1 and increases brain blood flow. 1
• Huperzine A increases brain blood flow. 1
• Bacopa monnieri increases brain blood flow. 1
• Korean ginseng is a microcirculation vasodilator. 1

Nimodipine is a cerebral vasodilator through a calcium channel blocker mechanism; but a gentler over-the-counter calcium channel blocker and antihistamine is cinnarizine, which one ME/CFS patient found moved her from moderate to near remission.


For vasodilation in the entire body, supplements such as citrulline, arginine and nitrate can help. The drug nicorandil improves microcirculation.

 

[hapl808]

I get brutal pressure headaches any time I talk on the phone or work on a cognitively demanding task. Ibuprofen helps a bit, but not a great daily solution.

I really don't know if it's blood flow (tried ginkgo, huperzine, ginseng, vinpocetine, curcumin) or inflammation or what. Very frustrating because it is the biggest limiting factor for me in cognitive tasks, any employment, etc.

 

[Dude]

Thanks for the suggestions, Vinpocetine sounds interesting. Cinnarizine unfortunately requires a prescription in Austria but luckily, I can order it from Holland.

I just recently saw a study on long covid about arginine:
https://www.naturalmedicinejournal....amin-c-reduced-long-covid-symptoms-in-1-month
I haven't had any success with nutritional supplements yet.

What I also found while browsing were these medications:
-Pentoxifyllin
-Nifedipin
-Ibudilast

 

[kangaSue]

Some of the PDE4 inhibitors can cause delayed gastric emptying so ibudilast is one to be careful of if you have chronic GI symptoms.

Tadalafil (Cialis) has effect on peripheral and microcirculation and a number of studies find it to be effective for pain in a number of different chronic pain syndromes when taken daily at different strengths (5mg - 20mg);
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2575214/

 

[Dude]

Wow, that cinnarizine works wonders. It arrived yesterday, and I thought it would take a while to kick in, but after about an hour, I started feeling a tingling sensation in my arms and legs. Suddenly, that heaviness that typically forces me to lie down was gone. Previously, I had real trouble sitting or standing for extended periods, which limited my work at the PC to just four hours a day. Now, after two days, I can say it's a completely different feeling. It's really hard to put into words. The fatigue behind my eyes is still there, and so are some of the pains, but that constant urge to lie down as if I have the flu is almost entirely gone. I'm genuinely surprised. Next week, I'll definitely get some Nimodipine; it seems to be safer for long-term use and should, if I've read correctly, have similar effects. I just hope it won't end up like Abilify, where its effectiveness wears off over time.

 

[gregh286]

Wow, that cinnarizine works wonders. It arrived yesterday, and I thought it would take a while to kick in, but after about an hour, I started feeling a tingling sensation in my arms and legs. Suddenly, that heaviness that typically forces me to lie down was gone. Previously, I had real trouble sitting or standing for extended periods, which limited my work at the PC to just four hours a day. Now, after two days, I can say it's a completely different feeling. It's really hard to put into words. The fatigue behind my eyes is still there, and so are some of the pains, but that constant urge to lie down as if I have the flu is almost entirely gone. I'm genuinely surprised. Next week, I'll definitely get some Nimodipine; it seems to be safer for long-term use and should, if I've read correctly, have similar effects. I just hope it won't end up like Abilify, where its effectiveness wears off over time.

Keep us posted
I am.same.
I got home Sauna installed 10 years ago.
Lost without it.

 

[L'engle]

I do feel much better and less achy after a hot bath. It doesn't make me able to go out and do things but it creates a restful and refreshed feeling. Almost like a healthy person when they are just going to spend an evening not doing anything.

 

[kushami]

Hello friends,

After I take a hot shower or visit a sauna, I tend to feel significantly better for about 20 minutes. Symptoms like pain, headaches and a flu-like feeling almost completely disappear. Is anyone else experiencing this?
I know many people with ME/CFS have issues with heat.

I suspect that I might have a problem with my blood vessels, which expand in heat, potentially improving blood flow. Has anyone had positive experiences with vasodilators? I have an appointment with my GP next week and I'm considering suggesting a medication for trial. Nimodipine has come up in my preliminary search and I intend to try it out. Does anyone else know of medications that could be beneficial? Ideally, ones supported by studies, even if they're related to long Covid. My doctor isn't very open to experimentation, so I usually need a study to persuade him.

Thanks in advance

Almost all blood pressure medications (apart from the diuretic ones) work via vasodilation.

If you happen to have slightly high blood pressure, most doctors will be happy to prescribe one without any need for papers to support it.

Nimodipine is selective for cerebral arteries; the others act on the whole body (simplifying a bit).

The common classes are calcium channel blockers, angiotensin receptor blockers, and ACE inhibitors. People often find success with combination therapy, a very low dose of two classes in one pill. The thinking is to minimise the possible side effects from either class but still get a good vasodilating effect.

Beta-blockers also have a vasodilating effect, I believe, but if you don’t have tachycardia then they won’t be applicable.

Then there’s phosphodiesterase 5 inhibitors as used for Raynaud’s:
https://pubmed.ncbi.nlm.nih.gov/37929840/

I did a lot of digging on nimodipine recently and did not find anything published in a journal on its use in CFS or dysautonomia. I think there were some studies where it was tried for dementia and migraine, in terms of increasing blood flow to the brain.

I have been working through all the standard vasodilating options for OCHOS, and am now heading towards nimodipine, for which I need to make a compassionate access application (in Australia).

I have found they all improved my ceebral blood flow, but I struggled with side effects. Many people take them with no side effects, however.

Look forward to hearing how the nimodipine goes if you manage to try it.

***
I have OCHOS as described here:
https://pubmed.ncbi.nlm.nih.gov/26909037/

It’s pretty similar to the low cerebral blood flow findings made in CFS patients by Visser, Rowe et al. I don’t have CFS but have thought I might while wandering around the internet for many years. Recently settled on OCHOS diagnosis.

 

[Dude]

I wanted to provide an update on my Nimotop trial; I always find it intriguing when people document their trials, as the initial effect is usually significant but often short-lived.

Unfortunately, the effect diminished again after a few days, and despite increasing the dosage, I couldn't achieve any better results. Truly a shame, but there were still a few nice days

 

[Springbok1988]

I have been on tadalafil for 16 days.

Improvements:
-Sleep is somewhat improved
-Brain feels more "open"
-I can relax a little bit more
-Dizziness improved

I have not noticed improvement in memory, brain fog, or fatigue, unfortunately.
Side effects were initially headaches and eye pain, both of which have gone away.

 

[kangaSue]

I have been working through all the standard vasodilating options for OCHOS, and am now heading towards nimodipine, for which I need to make a compassionate access application (in Australia).

Have you looked into the dual moeity vasodilator nicorandil as an option? ;
https://pubmed.ncbi.nlm.nih.gov/1445473/
https://pubmed.ncbi.nlm.nih.gov/29508065/

 

[kushami]

@kangaSue , no, I hadn’t looked at that one. I see it is on the PBS, so it would be a lot easier than trying to get nimodipine.

I will ask about it.

Thank you so much for the suggestion!

 

[SlamDancin]

Be careful with Nicorandil. It’s definitely an interesting drug that I might try as well but it definitely will lower BP so keep an eye on that

 

[kushami]

@SlamDancin , will do. “Luckily” I have some hypertension, so have a little room to manoeuvre. But I will proceed with caution. Don’t want to overshoot and go too low.

 

[cfs since 1998]

With some help from ChatGPT:

Prescription - Pentoxifylline. Reduces blood viscosity, among other effects. Has some concerning side effects.

Nonprescription - Vit. E, CoQ10, B3 (Niacin or Nicotinamide)

Niacin can cause flushing, but maybe this could actually help us?

 

[Nord Wolf]

Vasodilation is interesting considering we have two major arterial pathways in the body and brain.

1. Large arterial
2. Small arterial

I find heat, as in showers, to be relaxing and symptom reducing in the body alone. My guess is that the shower heat is directly influencing the body’s large arterial network. However, my dizziness severely increases and I lose my vision, completely with hot and sometimes even warm showers. My doctors state that my small blood vessels in the brain are naturally too dilated, so the shower heat dilates them further, aggravating PoTS symptoms and neurological vision complications, in my case.

I’m unable to handle any vasodilating herb or medication without developing skull crushing headaches, loss of vision, reduced hearing, and severe dizziness and lightheadedness.

It is fascinating that some folk here experience positive things with heat and vasodilation though.

 

[Violeta]

Some info from @mariovitali on Twitter (now named X) on glutamate and vasoconstriction.

https://x.com/lifeanalytics/status/1167489506968317952

 

[Violeta]

This is another message from his thread on Twitter. I realize this thread isn't about traumatic brain injury, but it's connected to the glutamate/vasodilators, and the whole thing is just so interesting I thought I would post this link, too.

https://x.com/lifeanalytics/status/1216609834046492672