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Patent filing for the use of nitric oxide with or without B-cell depletion in CFS

R

Rooney

Senior Member
Messages
185
Location
SE USA
deleder2k said:
Aha... I tried it once. Started at 30mg, went all the way up to 120mg extended release. Didn't do much for me. I kinda hoped for some effect since alcohol works very well for me. It also dilates vessels.
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Tried any vasodilator? A non-NO product like Hydralazine?
 
deleder2k

deleder2k

Senior Member
Messages
1,129
Sorry for my late answer.

No, I have not. Seems like it should be prescribed with beta-blockers. Is it considered "safe" to try out? Looks like there are some side effects. Very interesting though!

"Hydralazine requires the endothelium to provide nitric oxide,[9] thus only causes vasodilation in vivo with functional endothelium. Hydralazine will not cause vasodilation in vitro in an isolated blood vessel."

Can anyone translate this? If our nitric oxide production is malfunctioning, one could assume that this won't work or..?
 
Ninan

Ninan

Senior Member
Messages
523
I tried 1 mg (very low dose) of nitroglycerine today. Wondered if the icy cold feeling I have is low cerebral blood flow. All it gave me was a headache. But it felt like blood flow increased. Maybe the problem is elevated intracranial pressure?
 
K

kangaSue

Senior Member
Messages
1,859
Location
Brisbane, Australia
Ninan said:
I tried 1 mg (very low dose) of nitroglycerine today. Wondered if the icy cold feeling I have is low cerebral blood flow. All it gave me was a headache. But it felt like blood flow increased. Maybe the problem is elevated intracranial pressure?
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A "nitrate headache" is very common among the general population when you first start taking them and often lingers for the first few days.
 
Ninan

Ninan

Senior Member
Messages
523
kangaSue said:
A "nitrate headache" is very common among the general population when you first start taking them and often lingers for the first few days.
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I see. I read that it helps some and that others get a headache so I persumed I'm in that second group. I don't think it helped but maybe I'll try again. The dosage was very low.

Do you know the mechanism behind nitrate headache?
 
alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
deleder2k said:
Sorry for my late answer.

No, I have not. Seems like it should be prescribed with beta-blockers. Is it considered "safe" to try out? Looks like there are some side effects. Very interesting though!

"Hydralazine requires the endothelium to provide nitric oxide,[9] thus only causes vasodilation in vivo with functional endothelium. Hydralazine will not cause vasodilation in vitro in an isolated blood vessel."

Can anyone translate this? If our nitric oxide production is malfunctioning, one could assume that this won't work or..?
Click to expand...
Yes, if our NO function is not good then either it will not work, or it will work to a limited extent and may stop working. However that might mean it can be used as a test for NO function.
 
deleder2k

deleder2k

Senior Member
Messages
1,129
Ninan said:
" immediate headaches are connected to vasodilation caused by nitric oxide (NO) release"

That's what I thought. Since that's the effect I was looking for and it just gave me a headache I guess cerebral vasodilation is not the thing for me.
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If you take isosorbide mononitrate everyone experience headache the first days, then it usually wears off for the majority.
 
P

purma

Messages
7
Rooney said:
Because of this thread, I am on Imdur two weeks with good success. I asked my cardiologist for it as I have been having heart pain and new hypertension. It has done wonders for both. I was more active in my first week on the drug, but pushed too much.

I am sick 15 years (viral onset) with confirmed POTS. In the beginning I had OI and HYPOtension. I think I have a virus effecting my heart, otherwise the Imdur would have allowed for more activity. I feel particularly sick in recent months. Fearful now of being a cardiac patient even though my ecocardiogram looks good. I'm in my mid-fifties and my weight is OK. Vascular, it seems.

One problem with Imdur is constipation, literally my eternal pain in my backside. So taking Miralax as two gastric docs have suggested anyway. I have SIBO, too.

Delender2k, thank you for all your posts from Norway! They give us such hope.
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Back in March you posted about trying Imdur. So how's it going? Still taking 30 mg? What has improved and how much improvement? Any problems? How much has your BP changed? I have an appt with my PCP tomorrow and want to ask about trying it so would appreciate everything you can tell me. (Thanks!)

I've had ME/CFS 20 yrs now and like you have chest discomfort, and in recent years have developed orthostatic HYPERtension (like 120/69 after 2 min. supine, but after 2 min. sitting ranges 140/90 to 160/100). I am mostly homebound and have horrible fatigue and minimal activity makes me relapse hard with severe heavy-headed fatigue and chest discomfort that last for days/weeks. If I'm lucky Imdur might improve not only my my BP and chest discomfort, but also my overall fatigue/CFS as it did for Fluge's patients.

I would SO APPRECIATE your timely input on Imdur!!! Thanks so much!!!
 
C

Cog71

Messages
47
Location
Los Angeles
alex3619 said:
I want to read this one: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2562584/

Its a full paper.

However here is my take on alcohol. It drives production of free radicals from the mitochondria. So if NO and radicals are both raised, so is peroxynitrite. Its not the way to go for most of us, though it does raise questions as to whether there might be a subset who benefit.
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That's super interesting and probably beyond my quite basic capacities of medical understanding. But my alcohol intolerance kicked in exactly when my fibro/CFS did and my rheumatologist told me it was very common amongst his sero-negative patients (i.e. who consistently test negative for underlying auto-immune diseases)

His take is that alcohol being an incredibly potent vasodilator, lowers blood pressure and volume (in the moment, at least) which are already super low in most CFS patients and one of the reasons we feel so tired. It made perfect sense to me seeing as when I drink it I feel exactly the same way I do in the mornings before I take my vasoconstrictor (midodrine).

That's why I thought we had to stay away from anything that increased nitric oxide - because it dilates blood vessels. But this is a whole new can of worms and I'm really interested to see what happens.
 
C

Cog71

Messages
47
Location
Los Angeles
melihtas said:
No, there is no data about prevalence rates, that is why I said "I beleive" because it is speculation based on observation rather than established facts. However, online presence of ME patients are very clear indication to me. For example on this PR forums almost all the people are from the U.S, the U.K., Australia, Canada, Northern and Western Europe. I don't see many people from Eastern or Southern Europe, Africa, Middle East and Asia.

There is nothing published about ME in Turkey let alone prevalence rates. I have been searching for five years and I haven't come across any ME patients in person or online.

I know the difference between folic acid and methylfolate and I believe that folic acid might be one of the culprits for ME, not all folates. I tried late Rich Von Konynenburg's Simplified Methylation Protocol and Fredd's methylation protocol with higher doses in the past without success, the latter made me worse.
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Re: Prevalence rates - All the countries you cite are English speaking countries. (I'll include Scandinavia in this because most Scandinavians speak English better than I do). This is an English language forum. Italy has a very large population of diagnosed CFS.fibro sufferers - I'm guessing most of them stick to the Italian forums since their English isn't so good. I speak Italian and I've certainly been on a lot of Italian forums myself.

All the statistics I've read (I'm sorry for the lack of citation here but it's easily googlable) show a near identical level of sufferers across the board, regardless of the state or status of a particular country. (Pakistan has a large population or sufferers, also Romania, Vietnam and Uzbekistan, just to throw in some random examples.) This has always surprised me because a) I've always believed there to be some environmental cause, especially given the cluster 'outbreaks' we've seen in history (Los Angeles General Hospital, etc) and b) you'd expect lesser developed, more financially challenged countries to report fewer cases of a disease that you can't see and you don't die from.

But contrarily to what you say, the percentage rates world-wide are actually strikingly similar. One paper I read from a few years back showed the UK, France and Italy ALL showing almost exactly 110,000 recorded cases - interesting when you think that those three countries also all have near identical population figures.

I wonder if there is any other disease that shows such similar numbers across the world? Most cancers and cardio-vascular diseases vary wildly not just by country but by area within that country. What is it about CFS that makes geography so irrelevant?
 
C

Cog71

Messages
47
Location
Los Angeles
deleder2k said:
I think it is quite easy. Both alcohol and nitroglycerin dilute our blood vessels. They both relieve symptoms for many PWME. Fluge and Mella's hypothesis is that some autoantibody leads to NOS dysfunction which impairs the regulation of the blood flow. I feel much better when i drink alcohol, and I guess I would feel much better if I tried nitro too.
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Aargh! I just made that point a good 8 months after you did - guess I should have read further down the thread! Only reason I'm chiming in is because I feel much WORSE when I drink alcohol, and much better on a vasoconstrictor. So maybe something that dilates the vessels would be a good idea for you? (Other than drinking all day, I mean. Christ - I wish I could!)

Also depressing because it highlights once again the vast differences in symptoms between people with the same diagnosis. Which means we're even less likely than I thought to find that one-size-fits-all magic bullet...
 
C

Cog71

Messages
47
Location
Los Angeles
Ninan said:
I see. I read that it helps some and that others get a headache so I persumed I'm in that second group. I don't think it helped but maybe I'll try again. The dosage was very low.

Do you know the mechanism behind nitrate headache?
Click to expand...

No but back when I was healthy and stupid we used to take 'poppers' (amyl nitrite) when we went out, mainly because of lack of money for more decent recreational drugs. The headache was horrendous. People always says it was because nitrogen part dilated the blood vessels and the hard skull doesn't allow them to expand like the rest of the body does and so it hurt. Maybe I'm grasping but it does seem like there may be a link...?
 
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