Seeking Recommendations for Vasodilators Effective in Treating ME/CFS

[kangaSue]

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

Depends on your circumstances. Nicorandil has greater affinity for venous rather than arterial blood flow and at low dose, studies show it doesn't affect bp in 'normals' at least.
I have low bp tied in with autonomic dysfunction (idiopathic autonomic neuropathy) and nicorandil helps to stabilise my bp even at the high-ish dose I'm taking to improve the blood flow to my GI tract (15mg 2 x a day).

 

[SlamDancin]

@kangaSue interesting. Would you say it’s had any generally anti-CFS effects for you?

 

[kangaSue]

interesting. Would you say it’s had any generally anti-CFS effects for you?

Sorry but I'm a bit of an imposter here and don't have ME/CFS, just identify with the chronic gut issues that a lot of ME/CSF'ers have

 

[SlamDancin]

@kangaSue All good, I guess I’d say you’re lucky for that! I think I’m going to put this stuff on my list to try

 

[kushami]

I’m an interloper too (but have been kindly told it’s okay to keep visiting).

My problem has been narrowed down to something auto-immune causing abnormal vasoconstriction in the blood supply to the brain.

I’m taking prescription vasodilators (normal blood pressure tablets), which are helping, but I’m trying to patch together a selection of vasodilators that work in different ways. Unfortunately, I can’t take a sufficient dose of any single kind or even two kinds because side effects start to show up.

 

[Centime Tara]

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

I don’t have any info about studies, but after I take a bath I feel remarkably better for an hour or two. I‘ve never understood why. I hope you’ll post what you learn.

 

[kangaSue]

My problem has been narrowed down to something auto-immune causing abnormal vasoconstriction in the blood supply to the brain.

Just a thought, do you happen to have any issue with pelvic congestion at all? There's some abdominal vascular compression issues that can cause abnormal vasoconstriction in the lower extremities and resultant blood pooling here may have an effect on brain perfusion in the right circumstances.
(I have renal Nutcracker Syndrome which can cause chronic fatigue that has been misdiagnosed initially as ME/CFS in some cases)
https://www.oatext.com/A-Tough-Nut-...al-Pain-Attributed-to-Nutcracker-Syndrome.php

 

[Forummember9922]

Fwiw +1 to Cialis i think it has been helping me (RE fatigue)

 

[kushami]

@kangaSue , thank you, I will have a read. At this point I‘m fairly sure it’s auto-immune rather than mechanical, because I get better on immune-suppressing and immune-modulating treatments. Unfortunately they weren’t practical for long term, so now I’m doing a DMARD and LDN.

Would feeling better on steroids tend to rule it out?

Did it take you a long time to work out you had renal nutcracker syndrome?

 

[kushami]

I had considered phosphodiesterase 5 inhibitors and decided against them a while ago, but can’t remember why! I should have another look.

I fiund out about a cardiologist who specialises in hypertension and problems with medication for treating it, and amazingly he also knows about autonomic dysfunction, so am thinking of getting referred to him if I don’t get my selection of vasodilators sorted soon.

It means a two-hour each way trip to Melbourne, but it is winter here so wouldn’t be too bad.

 

[Violeta]

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

I do experience relief from excessive fatigue from taking a shower. Sometimes I am so tired I can hardly even think of taking a shower, but if I can get myself in the shower it really helps.

The heat of summer, though, doesn't do the same thing. It actually makes me feel worse. I don't understand it.

The veins on my hands frequently bulge, and I tend towards low blood pressure. Herbs that raise NO, such as cat's claw, and vasodilate give me headaches. It's crazy.

 

[kangaSue]

Would feeling better on steroids tend to rule it out?

Not necessarily. Steroids exert effect on vascular tone, and catecholamines to some degree, and Nutcracker Syndrome (NCS) can mess with the regulators of both these functions. I can't say I know of anyone using steroid therapy to manage their NCS symptoms though.

Did it take you a long time to work out you had renal nutcracker syndrome?

I was diagnosed with chronic pelvic congestion a good 20 years before getting the NCS diagnosis. The left renal vein compression of NCS was apparent in 13 year old imaging of mine (CT scan) though, but it was either missed, overlooked, or just dismissed as being an issue involved as I wasn't suffering from 'debilitating left flank pain' that all the medical literature mention to be a major symptom for NCS.
Large case studies now suggest such left flank pain only occurs in about 40% of cases of NCS.

 

[SlamDancin]

@Violeta Same, warm weather and sun drain me whereas I get tremendous benefit now from long warm showers

 

[kangaSue]

The heat of summer, though, doesn't do the same thing. It actually makes me feel worse. I don't understand it.

Do you actully sweat normally in response to heat? Apparently, we can be very poor judges of that and I couldn't fathom why I got an exacerbation of abdominal pain just from being out in the sun and hadn't realised that I had stopped sweating.
This was confirmed with sweat tests of QSART and Thermoregulatory Sweat Test during an autonomic function test panel work up (and final diagnosis being idiopathic autonomic neuropathy).

 

[kushami]

@kangaSue, that’s food for thought.

I just happened to get a week of steroids for something else, and my symptoms went away. And then I had a partial remission and gradually returned to baseline over the next three months. So from that we assumed autoimmune, especially as I have two other autoimmune conditions.

It’s great that you had proper autonomic testing. Was that in Brisbane? Forgive my nosiness, but the two autonomic specialists I’ve seen in Vic don’t even do tilt table testing.

 

[kushami]

Maybe I could contribute something: Dr Peter Novak mentioned two forms of cerebral hypoperfusion in one of his lectures. (Note that he was talking about people who have OI but who do not have a specific diagnosis of POTS, OH, etc. He calls this OCHOS, and he has diagnosed several people with CFS with OCHOS.)

One form is not enough blood getting to the brain for classical OI reasons: low blood volume, preload failure, blood pooling in abdomen and lower extremities, lack of vasoconstriction in lower part of body, generally low blood pressure. This could be helped by volume expansion, volume redistribution, and vasoconstrictors.

The other form is the arterioles in the brain being abnormally constricted, so actively preventing enough blood getting into the brain. (Arterioles are the first branch after arteries.) He thinks this is from an autoimmune problem causing abnormal cerebral vasoconstriction. This could be helped by vasoconstrictors and immune treatment (when we eventually find out which one to give). People in this group tend to have normal or generally high blood pressure.

None of the OCHOS group has marked changes in heart rate or blood pressure on TTT, but when their cerebral blood flow is measured with transcranial Doppler during a TTT it is seen to fall.

Just thought I’d mention this as one possible reason different people respond well or badly to vasodilation/vasoconstriction.

 

[Violeta]

Do you actully sweat normally in response to heat? Apparently, we can be very poor judges of that and I couldn't fathom why I got an exacerbation of abdominal pain just from being out in the sun and hadn't realised that I had stopped sweating.
This was confirmed with sweat tests of QSART and Thermoregulatory Sweat Test during an autonomic function test panel work up (and final diagnosis being idiopathic autonomic neuropathy).

I will have to check for sweating normally in response to heat. For a long time I know I didn't, and it's horrible because the heat builds up inside of you. I did a course of body soaks and that helped a lot, and I did start to be able to sweat, but I'm going to have to check again when I am out in the heat. Next week we are expecting a day of 90 degree temperatures.

This is something good to think about, thank you, @kangaSue.

 

[Violeta]

Do neurotransmitters have a part in this, and if so, how important are they?

Found this:

"The neurotransmitters released from the varicosities in the ANS can regulate the vascular tone. Norepinephrine (NE), adenosine triphosphate (ATP) and Neuropeptide Y (NPY) function as vasoconstrictors, whereas acetylcholine (Ach) and calcitonin gene-related peptide (CGRP) can mediate vasodilation."

 

[Violeta]

Thoughts and questions about hypoperfusion, hypertension, vasodilation, vasoconstriction, neurotransmitters, and receptors are hurting my brain this morning.

 

[kushami]

@Violeta , I agree, it’s all so complicated. I do remember that norepinephrine and acetylcholine get mentioned (separately) in lectures on autonomic problems.

Pyrostigmine (aka Mestinon), which is sometimes used for POTS, is also sometimes used for CFS, I believe. It does something with acetylcholine. (Excuse my vagueness. I did try it a while ago but it didn’t work for me and I can’t remember anything about it now.) I’m sure someone else will be able to explain it.

Cort has an article about it being used in a trial for CFS:
https://www.healthrising.org/blog/2023/11/12/lift-open-medicine-foundation-chronic-fatgue-syndrome/