• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Decreased cerebral blood flow?

Ninan

Senior Member
Messages
523
Does anyone else recognize this? I'm severely ill except when I get my B12 protocol to work.

When I crash (or return to my untreated state, rather) I feel like the blood vessels in my brain contract. Like they only let a trickle flow through. It's kind of a cold, numb feeling, a little like when an arm or a leg doesn't get enough blood. A while later I start peeing out everything I drink. Soon I have extreme sensory sensitivity which puts me in a downward spiral with less and less energy, towards complete vegetable, severely ill, can't talk to people or even go to the toilet. Increasing blood pressure helps a bit but far from enough.

Anyone recognizes this? Is it lower cerebral blood flow? What can be done to increase it?

One of the theories I've heard is that something (autoimmunity?) makes the larger vessels in the body dialate and that the vessels in the peripheral vessels contract to compensate. Can't say I notice the first part though.
 

Ninan

Senior Member
Messages
523
I'm reading about the NO hypothesis. But since B12 reduces NO and B12 helps me I guess NO and citrulline wouldn't help.

I have low sodium and low potassium according to HMT and blood test and can't seem to raise them even when I take lots.

Vasoconstrictors make me feel better but i guess that is because they increase BP. If vessels in the brain are already constricted it might help constricting the rest of the vessels to increase BP. Hot water and sauna make me feel worse.
 
Last edited:

Bansaw

Senior Member
Messages
521
I took a prescription med (Nimodipine) for the last two weeks but just had to stop because of disconcerting side effects which were palpitations and chest tightness. However, it did seem to improve cognition.
I looked into cerebal blood flow and both doctors I saw a few weeks ago have mentioned Huperzine to me.
This is normally taken in conjunction with Vinpocetine (Vinpocetine is the one that improves blood flow.)
Anyway, I was encouraged by the blood flow that Niodipine provided so I ordered Huperzine & Vinpocetine to see if they can give me the benefits without the side effects.
 

Ninan

Senior Member
Messages
523
I took a prescription med (Nimodipine) for the last two weeks but just had to stop because of disconcerting side effects which were palpitations and chest tightness. However, it did seem to improve cognition.
I looked into cerebal blood flow and both doctors I saw a few weeks ago have mentioned Huperzine to me.
This is normally taken in conjunction with Vinpocetine (Vinpocetine is the one that improves blood flow.)
Anyway, I was encouraged by the blood flow that Niodipine provided so I ordered Huperzine & Vinpocetine to see if they can give me the benefits without the side effects.
Thanks, Bansaw, I'll give them a google. Do you recognize the feeling I described above? How do you respond to vasodilation like hot weather/water, sauna, alcohol etc?
 

Bansaw

Senior Member
Messages
521
Thanks, Bansaw, I'll give them a google. Do you recognize the feeling I described above? How do you respond to vasodilation like hot weather/water, sauna, alcohol etc?
I don't see a parallel with your symptoms and mine, but that doesn't mean that we don't have a common bloodflow issue. CFS is a complex condition that differs from person to person. My issue for example might have been caused by a sickness I picked up in Africa called Rickettsia Mooseri which can cause vasculitis.
I have issues in cold weather certainly. I have a mini personal sauna in my house which has done my good in terms of detox and in terms of body heat and heightening my immune system (I've not caught a cold this year which is unheard of for me).
Alcohol I get a reaction too because of my gut issues probably.
 

Ninan

Senior Member
Messages
523
Ok! I'm ordering ginkgo biloba, huperzine and vinpocetine. I have great effect from ALCAR but don't tolerate it anymore due to gut issues and allergies, so maybe one of them will help.
 

Bansaw

Senior Member
Messages
521
cool. however, watch the ginkgo because gingoloid acid can cause dna damage and that leads to more serious stuff. In Europe the ginkgoloid acid is limited by law to 5 parts per million. The USA supps are not limited. I ordered my ginkgo from Standard Process and that has the limited acid in it.
However, the ginkgo didn't do me much good personally speaking.
https://www.standardprocess.com/Products/MediHerb/Ginkgo-Forte#.V0tKupErLIU
 

Ninan

Senior Member
Messages
523
Ok, thanks. So maybe it'll get stuck in customs? I'll order a lower concentration.
 

Ninan

Senior Member
Messages
523
Anyway, I was encouraged by the blood flow that Niodipine provided so I ordered Huperzine & Vinpocetine to see if they can give me the benefits without the side effects.
Have you tried yet? Any luck?
 

knackers323

Senior Member
Messages
1,625
I feel much better for a day or so after raising my blood pressure with an maoi and tyramine foods. contraindicated I know. ive had some success with hich dose niacinamide. could we have a sticky blood problem as talked about here?
https://cfsremission.wordpress.com/treatment/thick-blood-clots-dimension-of-cfs-etc/
or some auto immune issue that effects the blood vessels, like vasculitis. or could what this Dr Lonnie Herman says a factor? I don't know if what he is saying is viable or not.