Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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hypertension from CFS: solved FOR ME

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Sherlock, Jul 5, 2018.

  1. Sherlock

    Sherlock Boswellia for lungs and MC stabllizing

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    Very quickly: TMG (a methyl donor and vasodilator) plus later added vitamin C. Putting a can of red beets in a blender might be a suitable test before buying TMG to try.

    No drugs required.

    Was sudden onset, at times got much worse (to medical urgency levels, but not emergency levels). Then quickly went away with the TMG.

    (Maybe I'll write a detailed post/blogpost one day, but for now this is a signpost that might help some of the very few who get hypertension instead of hypo.)
     
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  2. RWP (Rest without Peace)

    RWP (Rest without Peace) Senior Member

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    Both of us [my wife is PWR (Peace wihtout Rest) have orthostatic HYPERtension, so this is very interesting. Thanks for posting!

    RWP + PWR
     
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  3. Mary

    Mary Moderator

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    How interesting! How much TMG do you take and how much vitamin C? My BP is okay but I have a friend whose is high.
     
  4. Sherlock

    Sherlock Boswellia for lungs and MC stabllizing

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    Thanks, RWP.
    My first sign of post-viral CFS was sudden onset orthostatic hypotension-and-tachycardia, with otherwise hypertension.
    Pre-CFS; 120/80
    with CFS average: 140/90 but then often Isolated Diastolic Hypertension
    worst spike was probably 190/118 or so

    Pre-CFS, I was always able to bring down any minor bout of HTN (smoking cigarettes, etc) with a long bike ride. Post-viral, that would not work anymore though I pedaled myself ragged, so something had fundamentally changed in me.
     
  5. Sherlock

    Sherlock Boswellia for lungs and MC stabllizing

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    Thanks, Mary. That's the kicker: I'd bought the TMG as an exercise supplement pre-CFS, but it did nothing. Did nothing post-CFS either, at 1 or 2 capsules (750mg) at a time. One day, a cousin developed immune-caused sudden onset hypertension. I gave him some capsules to try. He nearly fell off a rider mower from HYPOtension from one capsule!

    So I naturally took a bunch (maybe 7-8) and wham! my BP was down to normal. Now I buy powder and take roughly a 1/4 tsp, not even every day. I think this works for me because of having MTHFR style methylation defects.

    But... I was taking my BP many times per day and discovered that I was usually a little high in the mornings. Taking extra TMG didn't help that. I knew that my BP would always be higher when I was sick (burning eyes, malaise, SOB, etc) so I wondered if accumulating ROS was somehow a contributing factor. Taking the vit C eliminated the morning hypertension. (Started with 4 x 500mg per day, but varies a lot. Must be wary of laxative effect.) I often have Systolic of 111 now, often even lower in the middle of the night. Its quite a turnaround and I was extremely frustrated for years before discovering this.

    I've included all the detail because that might help anybody with similar circumstances to decide if they should try this.

    Please let me know if it works for your friend :) You, too @RWP (Rest without Peace) and @PWR (Peace without Rest). Were you both exposed to some toxin?

    My Background: I was always healthy but developed CFS after a bad cold after enormous stress. MCAS and MTHFR
     
  6. Mary

    Mary Moderator

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    Thanks for all the info @Sherlock!

    My ME/CFS was very slow onset, over a period of some 13 years before I started crashing (PEM). I believe the origin was severe stress since childhood due to abuse issues. I don't know for sure but that's my guess. Though I did have heavy exposure to chemical solvents at a job I had when 19, but my health didn't start to go south until I was about 34. I just don't know. I did end up having to do a liver detox some 17 years later, which helped my digestion a lot but did nothing to stop ME/CFS.
     
  7. Sherlock

    Sherlock Boswellia for lungs and MC stabllizing

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    Addendum: I might take up to 1 tsp of TMG in divided doses per day and probably started out near that with my first bag of powder. There seems to be no downside for me in too much - and a bonus is that it helps with increased muscle power going up hills. Meanwhile, I never had any benefit from methyl folate or methyl B12 or SAMe, so I'm glad that didn't discourage me from trying the TMG in big doses.
     
  8. Sherlock

    Sherlock Boswellia for lungs and MC stabllizing

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    You know, I've just heard this week some doc saying in an interview that such applies to the vast majority of their patients. I certainly believe it. Maybe it is Theoharides. With insomnia, I loop these audios all night long. When I hear it again, I'll make a note and post that to you.

    The underlying principle is that emotional stress chemically sets up the mast cells to be hyper-reactive.

    P.S. I'm glad to be of help.
     
  9. Mary

    Mary Moderator

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    Hi @Sherlock - I don't think stress-induced onset applies to a majority of ME/CFS patients. I almost hesitate to post that I think severe stress was a factor for me because the whole idea has been so badly abused by people leading to "it's all in your head" etc. and the twisted doctrine of PACE that my thoughts are keeping me sick, which is BS. My stress levels are pretty low right now but that doesn't improve my functioning. And it's still just a guess. I have several siblings who experienced the same thing and none of them developed ME/CFS. Who knows - I was 4 weeks premature, maybe that was a factor.

    I don't think I have mast cell issues. My worst problem is PEM - it hits like clockwork if I exceed my daily allotted functioning of 3-1/2 to 4 hours of light activity with lots of rest breaks thrown in. I've done a lot of things which have helped me feel better overall but nothing has helped extend my activity window! :aghhh:
     
  10. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Which brand of TMG are you using?
     
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  11. Learner1

    Learner1 Forum Support Assistant

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    I'm glad the TMG, C and beets are bringing your BP down, but I take 2 mg TMG, 9mg C, and eat beets often, and it's done nothing for my high BP POTS, which is an autoimmune problem. Naldolol and propranolol, along with pyridostigmine have brought it down, though.

    There are many things that can affect BP, so it's finding what works for each of us...
     
  12. RWP (Rest without Peace)

    RWP (Rest without Peace) Senior Member

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    Thanks for the additional details. I was wondering if you did a home version of a "standing" test. I did a tilt-table, and the Drs. were so clueless, they congratulated me on my BP going up 25-30 points (because I had been fainting due to adrenal failure/fatigue, so they thought it would drop).

    My wife has never had it done. She can't stand for more than a split second without my help, and she's on 3 BP drugs (not our preference, but she had morbid hypertension ~240/120 in 2014.

    RWP + PWR
     
  13. Sherlock

    Sherlock Boswellia for lungs and MC stabllizing

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    Sorry, I should have been more explicit when mentioning Theoharides and added that he is all about mast cells, not CFS. Or it might have been Afrin, also MCs not CFS.

    Just some off the cuff thoughts, if you don't mind: sip throughout anti-acid, anti-oxidant, and/or anti-inflammatories. Elevate the legs during breaks. A foam roller. A cold shower break. Do 2.5 hours morning and 2.5 hours evening to build endurance.
     
  14. Sherlock

    Sherlock Boswellia for lungs and MC stabllizing

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    Yep, I would start my BP cuff then stand. Often I'd get an error msg. If it did successfully complete, I'd be low BP, with high HR to compensate. There also were times in the past when, if I stood still for a few minutes, I'd feel myself in danger of passing out - so I'd start walking and all would be okay once my leg muscles were engaged.

    Orthostatic hypertension must be very rare. Adrenalin is being used to compensate for low BP, then goes overboard? Does your HR never go high?

    Unfortunately, it doesn't sound like TMG would help you, especially if you don't have methylation problems such as with MTHFR. How did both you and your wife end up with the same thing?
     
  15. Sherlock

    Sherlock Boswellia for lungs and MC stabllizing

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    The capsules were VitaCost and the powder was from PowderCity, which unfortunately is now defunct. I'm guessing that simple powders like TMG are made in 1 or 2 big facilities in the entire world -- whereas herbals or complicated molecules are probably not.

    Oh, you just reminded me: I've read some reviews of TMG powder being fishy in smell and taste. That's likely because it degrades to DMG. Maybe the seller had it in a hot storage area. In the past three years, I've never personally received an order in that bad state.

    TMG should have very little scent or taste. I keep my supply in the fridge, and won't buy too much at once.
     
  16. Sherlock

    Sherlock Boswellia for lungs and MC stabllizing

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    Yep, that's why I'd pointed out my methylation defect and TMG's being a methyl donor. Also that I personally needed a much higher dose, in case some others in the world might be like me and almost miss out by dosing too low.

    It would be ideal if for instance there were a large database where people could query: show me posts where CFS patients with MTHFR and MCAS have HTN.

    Maybe I should adjust the post title to be somewhat more explicit. [Just did so, but didn't put in 'methylation' because that ignores the vit C effect.] Btw, do you do the titrate-to-bowel tolerance approach, e.g. from Levy and those before him?

    Also btw, when regular people use beetroot juice, hoping for athletic improvement via increased vasodilation, they use very large amounts - at least a quart, IIRC.
     
  17. Learner1

    Learner1 Forum Support Assistant

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    I am on high doses of all methylation cofactors, optimized by a knowledgeable doctor. My BP hasn't budged with any methylation changes.
    There are many other genes affecting methylation. But genes for SOD2 and PEMT should be included, too.

    Certain infections, heavy metal and other toxicity, and other environmental factors can have an impact, too. You'd need all of these in your spreadsheet.
    I think you're affecting NO more, which definitely can affect BP. See attached.
    Do you mean Mark Levine at NIH? IV vitamin C is preferred in reducing peroxynitrites, which damage mitochondrial membranes and impair complex I, which is what I'm trying to do.

    Since I don't want to do IV vitamin C right now, I'm taking 3g of C 3 times a day, to maximize what my bowels can absorb in a day. (If I took it all at once, it wouldnt all get absorbed.)
    I'm aware, but don't want increase my carbohydrate intake that much.

    We have a lot of issues and many problems to tackle. Like I said, I'm sincerely glad that your NO impacting strategies help your BP. Its just not a panacea for everyone for BP. It depends on what is causing the high BP in the first place. For me, it's the EBV-triggered adrenergic antibodies which nothing touched until I took a beta blocker snd I'm on high fise IVIG to try to reverse it.

    But your strategy has other impacts, like on the NO/ONOO cycle.
     

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  18. alex3619

    alex3619 Senior Member

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    Many of us have both hypertension and orthostatic intolerance, with a tendency to dramatic blood pressure loss.
     
  19. Mary

    Mary Moderator

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    Are you talking about sipping those things during PEM? What are some anti-acid, anti-oxidant or anti-inflammatories that you are recommending?

    I do elevate my legs most of the time when sitting - I have a recliner.

    What is a foam roller and what do you do with it? :confused:

    I can't take a cold shower break during PEM - it's exertion. I have to do absolutely nothing while crashed.

    Do what for 2.5 hours a.m. and p.m.?
     
  20. pamojja

    pamojja Senior Member

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    Ascorbic acid actually does absorb more even at much higher doses taken throughout the day, as the following rare study found (now behind a paywall). Even reaching serum levels usually thought only possible to be reached by IVs. With the advantage of orally of being able to maintain such high serum levels more continuously. While serum levels after a single Vitamin C IV decline very fast.

    (red emphasis added by me)
     
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