Study linking CFS/ME to abnormality in blood pressure regulation

PatJ

Forum Support Assistant
Messages
3,454
Likes
10,220
Location
Canada
Yohimbine will raise blood pressure. People here on PR have tried it so you can do a search for more info. I tried it (while taking LDN) but my BP bounced all over the place. I then found a statement on a web site that it shouldn't be mixed with LDN or bouncy-BP might result.

I've been using cayenne to raise my BP a little. I usually can't stand for more than 45 minutes without OI symptoms forcing me to lie down for at least an hour before I can be upright again. Since I've been taking 1/2 tsp of cayenne 3x/day I've been able to stay upright for 90 minutes at times, and have more energy and stamina. Cayenne is a BP regulator so it can lower high BP or raise low BP.

I started at 1/8 teaspoon, then worked by 1/8ths every few days. At first it's hot going in, and hot coming out. Once the body adjusts it's still pretty warm in the mouth but not when exiting the body. I take it mixed in 4oz of cool water, then chase with a little more cool water. If it's taken with warm or hot water then the heat of the cayenne is amplified. The cayenne I use is Starwest 35K Heat Units which is supposed to be good for general health use.
 

Float

Senior Member
Messages
212
Likes
1,037
Location
Australasia
1/2 tsp of cayenne 3x/day I've been able to stay upright for 90 minutes at times, and have more energy and stamina.
HI @PatJ what great results! !
Thanks for sharing this.
I'm going to look up some science on it.
Do you think it would be okay to drop quarter tsp into an empty capsule and take it that way ? Would avoid heat in mouth etc..
Thank you ☺
 

kangaSue

Senior Member
Messages
1,328
Likes
1,840
Location
Brisbane, Australia
I don't identify as having ME/CFS but I have hypotension in having Autonomic Neuropathy and had a similar drop in bp to those in this study during tilt testing. I also have a microvascular ischemic bowel problem (which is most likely tied to autonomic dysfunction too) and taking a nitrate med to increase blood flow to the bowel was contrary to expectation in also increasing my upright bp.

I see a few people here have mentioned having improvement in their ME/CFS symptoms from taking a nitrate or some sort of nitric oxide boosting supplement. Now that might also tie into some recent ME/CFS research that found issues of reduced red blood cell deformability and boosting NO production can improve your RBC deformability capabilities.

Boosting NO can also improve nerve blood flow too so maybe that helps with improved vagus nerve signalling too and this nerve has inputs into your cardiac regulation and bp function.
 

PatJ

Forum Support Assistant
Messages
3,454
Likes
10,220
Location
Canada
Do you think it would be okay to drop quarter tsp into an empty capsule and take it that way ? Would avoid heat in mouth etc..
Some people do it that way. Apparently starting it in the mouth and going down the throat is most effective and starts to influence BP right away.
 

Belbyr

Senior Member
Messages
459
Likes
1,076
Location
Memphis
I hope I am not speaking too soon but I have been feeling horrible the last 2.5 months. I think my elavil quit working and I might have been overdoing it (pushing through pain) leading up to my crash. I just recently got on low dose propranolol and have not had to get rushed to the ER anymore... I've been rushed to the ER 5 times in the last 2.5 months, til now.

I think I may have sympathetic over-action in my illness. My norepinephrine and dopamine levels are elevated in blood, and dopamine levels are elevated in urine but not the norepinephrine...

I am having to load more on the salt and water because of the lower BP though. I'm hyperadrenergic, now I feel a little on the low bp side when standing.
 

Float

Senior Member
Messages
212
Likes
1,037
Location
Australasia
FYI drug therapy for low BP - Ive seen Midodrine mentioned in several places and if the licorice and potassium fails me, ill ask for it.

I just started licoroce caps today, it says 2 a day on the bottle but i bet that isnt enough. Ill have to look up doses.

Ive been having salt and cayenne on all my foods, drinking some coffee, hydrating well.

Today i was woozy and could only lie down - was hard work to sit!! Its such a shame because since i started taking way more thyroid hormone, i feel like i have energy and I am certain (as you can be) that its the hypotension that is limiting me!!

Ive just had a very full on week and felt my body asking for rest a few days ago, which I couldnt because I had family staying, so I guess this bad hypotesion again (worse than general) is a clear indication I overdid it.

Im waiting for my holter monitor - i hope it tracks BP as well as heart rhythm but bet it doesnt :(

Good luck all x
 

kangaSue

Senior Member
Messages
1,328
Likes
1,840
Location
Brisbane, Australia
Do you think it would be okay to drop quarter tsp into an empty capsule and take it that way ? Would avoid heat in mouth etc..
Cayenne capsules are also a stimulant laxative that add to the efficacy of magnesium and I have made my own capsules this way but I only took the one as the bowel stimulation was way too effective for me.
 

vision blue

Senior Member
Messages
132
Likes
97
Any idea why they decided on a calcium channel blocker?

I also have very labile blood pressure, but the highs more of a problem for me than the lows. have constant incrased sympathetic activation, or so it feels like (there is blood test to supprort. and some foods put my in hypertensive crisis. But turkey lowers my bp (go figure) and after a nap in afternoon while lying down, i can drop down 60 points systolic, maybe more. mine is at its lowest when other people are at their peak.

great you have a doc that says virus can do it. I suspect virus 5 years ago - looked like shingles and recurred - is what started the dysauntomia parts of my symptoms. but no one would believe me.
 
My theory is that low BP is just correlated with CFS/ME, not causative. Like pretty much all our symptoms, the hypothalamus is involved. I've believed for a long time now that hypothalamic dysregulation is the root cause of CFS/ME. The hypothalamus gets damaged by cortisol and can eventually shut down or start malfunctioning. It regulates things like sleep/wake cycles, blood pressure, immune response, mitochondrial functioning, etc.
 

andyguitar

Senior Member
Messages
1,003
Likes
2,266
Location
South east England
Yes the hypothalamus does seem to be something to do with symptoms. But not sure if it is the origin of them. Another area of the brain sending it the wrong signals perhaps?
 
Messages
1,431
Likes
3,917
I just get home lie down and 'pass out ' into an instant sleep t
Felt like commenting that: I don't experience the POTS normally. Yet- why after I take a shower do I so wipe out and almost always have to lie down for a while. Its not simply: I am standing. So I think I experience a lower key version of the POTS phenom. (last summer, when I had a very bad stomach virus event, I was fainting and falling to the ground frequently). (thank you for that going away). When I was in this acute acute mess last summer, the shower hurt the surface of my spine and I had to turn it down to a drizzle.
 

Carl

Senior Member
Messages
247
Likes
241
Location
United Kingdom
My theory is that low BP is just correlated with CFS/ME, not causative. Like pretty much all our symptoms, the hypothalamus is involved. I've believed for a long time now that hypothalamic dysregulation is the root cause of CFS/ME. The hypothalamus gets damaged by cortisol and can eventually shut down or start malfunctioning. It regulates things like sleep/wake cycles, blood pressure, immune response, mitochondrial functioning, etc.
It has been reported on this forum that quite a few people, those that have been tested, have (partially) empty sella ie pituitary destruction. The pituitary is linked by the vagus nerve to the hypothalamus and when an infection destroys usually a portion of the right side of the pituitary, it also destroys a similar area in the right hypothalamus.

Therefore it is not really hypothalamus dysfunction. What I cannot understand is that I have not been able to find any research that has tested for this. I am certain that this is the real factor but for some reason, cover up?, research remains lacking. Just more poor quality research? There is so much of it.
 
Messages
1,431
Likes
3,917
Like pretty much all our symptoms, the hypothalamus is involved.
Due to related inflammation I experience, I am convinced this organ and nearby ones in the base of the brain are exactly where my inflammation is the worse. For instance, every night my nose feels like its got clothes pin clamping it shut. My teeth are being pushed out of the pulp. My eyes are all blurry and full of pressure much of the time and they are: right next door. Then add the cervical squeeze (I have).
 

kangaSue

Senior Member
Messages
1,328
Likes
1,840
Location
Brisbane, Australia
Felt like commenting that: I don't experience the POTS normally. Yet- why after I take a shower do I so wipe out and almost always have to lie down for a while. Its not simply: I am standing. So I think I experience a lower key version of the POTS phenom. (last summer, when I had a very bad stomach virus event, I was fainting and falling to the ground frequently). (thank you for that going away). When I was in this acute acute mess last summer, the shower hurt the surface of my spine and I had to turn it down to a drizzle.
Have you been tested for Small Fiber Neuropathy/Autonomic Neuropathy which can be a cause of symptoms similar to POTS but without having the elevated heart rate on standing?
 
Messages
1,431
Likes
3,917
Have you been tested for Small Fiber Neuropathy/Autonomic Neuropathy
ummmm. No. I'll look into what those are. I don't receive many tests. I don't ask for tests, generally.

the doctor considers me 1) diagnosed; and 2) have nothing to offer that I"d willingly take.

And when the simply act of undertaking the appointment will make me sick, I don't wilingly sign up for them except under extreme conditions.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,920
Likes
4,323
I don't come to this forum very often but I happened to see this thread and thought I could add some helpful info.

There's a website called Dysautonomia International that has some helpful descriptions of different types of dysautonomia (POTS is just one kind).

http://dysautonomiainternational.org/page.php?ID=34

And here's a link to a PDF with some basic information on Orthostatic Intolerance

http://dysautonomiainternational.org/pdf/RoweOIsummary.pdf

This document was written by Dr. Peter Rowe, one of the authors of the 1995 study that was posted by the original poster (@Arius )

Orthostatic intolerance is often found in patients with ME/CFS. In fact, it is included in the Feb 2015 IOM report as part of the diagnostic criteria for SEID (the proposed new name that never took off).

Hope this helps! I probably won't be back to this thread but if you want to talk you can start a conversation :)
 

kangaSue

Senior Member
Messages
1,328
Likes
1,840
Location
Brisbane, Australia
And when the simply act of undertaking the appointment will make me sick, I don't wilingly sign up for them except under extreme conditions.
As a measure of your autonomic function, you could set the ball rolling with this one by doing "The poor man's tilt table test" at home if you have a bp cuff.
http://oiresource.com/oitest.htm
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,267
Likes
5,135
Location
Toronto, Canada
It has been reported on this forum that quite a few people, those that have been tested, have (partially) empty sella ie pituitary destruction. The pituitary is linked by the vagus nerve to the hypothalamus and when an infection destroys usually a portion of the right side of the pituitary, it also destroys a similar area in the right hypothalamus.

Therefore it is not really hypothalamus dysfunction. What I cannot understand is that I have not been able to find any research that has tested for this. I am certain that this is the real factor but for some reason, cover up?, research remains lacking. Just more poor quality research? There is so much of it.
Please let me know if / when you do as I have an empty sella - discovered about 7 years ago and I am going for another MRI next week to have a look at it (and CCI).
 
Yes the hypothalamus does seem to be something to do with symptoms. But not sure if it is the origin of them. Another area of the brain sending it the wrong signals perhaps?
Yeah, I mean nobody definitively knows the origin of CFS/ME. But to me, it would explain why so many of us have histories of trauma AND were seriously pushing ourselves way too hard when we got sick. Though there are other potential reasons for this.