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Naturopath cured my OI/POTS/NMH?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Valentijn, Aug 18, 2011.

  1. Valentijn

    Valentijn Activity Level: 3

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    I started on richvank's protocol a few months ago, and it caused a noticeable improvement in my ME symptoms in general. Then NMH became my most limiting symptom, to the point where I was almost entirely housebound.

    The first thing that helped somewhat was upping my B12 from 2mg/day to 30mg/day.

    And after seeing a naturopath, being tested, and being prescribed supplements, my NMH has been completely gone for about 10 days now (oh, and no more cold feet or palpitations).

    He ran adrenal and neurotransmitter labs, which showed very high glycine and glutamate, and cortisol starting out too low at the beginning of the day and ending too high. Apparently the stuff he tested is very important in regulating circulatory function.

    He prescribed TheaNAQ and TRAVACOR, both from NeuroScience in Wisconsin. Unfortunately, they only sell to doctors.

    TheaNAQ: I take 2 pills three times a day, before meals. According to their site (can't link to specific pages, but you can find these under Products on page 5), it "is commonly used to reduce anxiousness, support healthy levels of GABA, and promote sleep." It contains N-acetylcysteine, Alpha-Lipoic acid, Coenzyme Q10, and L-theanine, as well as cofactors (C, folic acid, selenium).

    TRAVACOR: I take 1 per day, an hour before bedtime. "TravaCor is specially formulated to increase serotonin levels, enhance GABAA receptor function, and block glutamate receptors. TravaCor helps relieve your patients' low mood, cravings, anxiousness, and sleep issues." It contains taurine, 5-HTP, and L-theanine, as well as cofactors (C, B6, folacin, methylcobalamin B12, magnesium, zinc, selenium).

    After starting these I had an immediate improvement in cognitive function ... able to engage in teasing my fiance again, which he was actually thrilled about! The next days I had no light-headedness, even when on the go most of the day with shopping and cooking and such. I still had/have limits on how much my muscles want to do, and how high my heart rate likes to go - but I think these are improving, albeit not literally overnight. Most importantly, a 9 hour flight and associated airport treks were not a problem at all. I even voluntarily walked more than I had to, and felt fine and alert (albeit exhausted in a normal way).

    My problem now is that these specific supplements are produced in the US and hella expensive to ship to europe. Does anyone know of anything similar in Europe?

    I also want to pinpoint which of the ingredients are likely to have caused my improvement, since supplementing a few items is a lot easier than supplementing 10 or so, if I can't find a similar blend.

    The components that were new for me were: 5-HTP, L-theanine, and alpha-lipoic acid. Everything else in them I've been on using richvank's protocol.
    SOC and taniaaust1 like this.
  2. Suzie

    Suzie

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    Hi . Can you please tell me what you mean by OI/POTS/NMH.Thank you.
  3. Valentijn

    Valentijn Activity Level: 3

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    Orthostatic Intolerance, Postural Orthostatic Tachycharadia Syndrome, and Neurally Mediated Hypotension.

    Basically it's a big component of ME/CFS for a lot of people, and the most disabling, in my experience. When healthy people change position, the body responds by upping the pulse and blood pressure a bit. When people with OI/POTS change position, the pulse raises too high, to compensate for falling blood pressure. With NMH, the blood pressure and/or pulse pressure fall after being upright about 10-30 minutes.

    The result is varying degrees of light-headedness, which for me made it pretty impossible to leave the house for about a month. I was stuck on the couch all day, and had to lay down (not sleep) for about an hour at a time, after sitting upright for an hour or so, to get enough blood back to my brain for a while. When things weren't so severe, I still often needed to lay down (not sleep) for an hour in the middle of the day.

    I think OI/POTS/NMH may cause the generalized "fatigue" in CFS, for people that haven't discerned the cause of it. I avoid the "F" word because it's so non-specific, and call the OI/POTS/NMH symptom "light-headedness", even when it's too mild to actually make me feel noticeably light-headed.
    ahimsa likes this.
  4. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I take several Neuroscience supplements!! Right now, Adrecor and Norlox. I have taken Travacor, but I take 5HTP now instead of Travacor. Sounds like your Natropath is good since he knows about these things.

    Valentijn, I have had CFS/ME for 20 years. I was doing great, active again. Then after a surgery, POTS came quickly. I have had it for three years. That is my main problem now, CFS is doing very well.

    There are many causes of POTS. I have never heard that fatigue would cause it, but it is terrible. I am improving. Supplements and blood/saliva testing have always been what helps me.

    ALA is very helpful for me, it has been amazing.

    Great you got help. Wish all doctors knew about Neuroscience, supplements etc. Just common sense with many do not have. I am happy I have good help.
  5. Valentijn

    Valentijn Activity Level: 3

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    I probably wasn't clear ... I think POTS causes the feeling perceived as generalized "fatigue", not vice versa.

    So glad to hear the same approach is helping you too! Next step ... find a cure for the whole M.E. package :)
  6. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Sorry! Didn't read it correctly!:D
  7. leela

    leela Slow But Hopeful

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    Welcome Suzie :D

    I see this is your first post, so you might find the section "Commonly Used Abbreviations" really useful as you peruse the vast oceans of info here on the forums. Of course you are always welcome to ask as you did, but you may quickly find there are many abbreviations you've not encountered before, and it's nice not to have to wait for an answer:
    http://forums.phoenixrising.me/showwiki.php?title=Commonly Used Abbreviations

    You can also find it from the main forum page by scrolling down and clicking on Wiki Home Base, wherein you'll find the link to Commonly Used Abbreviations.

    Of course not everything is in there, by a long shot, but it's a great place to start.

    Hope you'll quickly come to enjoy the wealth of info and camaraderie that is available here.
    SOC likes this.
  8. glenp

    glenp "and this too shall pass"

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    Susie

    Susie Welcome to the forums

    I tried to pm you but your settings do not allow it

    The references are to forms of dysautonomia, which often come with this illness. Here is a link to a good site

    http://www.dinet.org/

    You can also google "dysautonomia dinet""

    I hope this helps

    glen
  9. Sasha

    Sasha Fine, thank you

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    Hi Valentijn - do you mean that your NMH got worse on the protocol, or that once your other symptoms had improved, the NMH was the one that remained that was causing you the most trouble?
  10. Valentijn

    Valentijn Activity Level: 3

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    It's possible that going on the protocol caused it to drop because I was taking a much higher B12 dosage prior to going on the protocol.

    It's also possible that the light-headedness started at that time due to red blood cells not being replaced fast enough after the onset of my illness a few months prior.

    It got a bit better again (about the same as previously) while still on the protocol, when I upped my B12 dosage to the prior amount.

    But the light-headedness may have just become more noticeable because I wasn't in constant pain anymore :p

    So ... I have no idea!
  11. Sasha

    Sasha Fine, thank you

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    Fair enough! That's half our problem, that everything is so complicated...:D
  12. ramakentesh

    ramakentesh Senior Member

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    Interesting observations. I did find that a supplement that was supposed to increase Gaba levels resulted in an improvement in my exercise tolerance at one stage.

    B12 is according to some sources a scavenger of nitric oxide which may reduce its bioavailability. This may be of interest for some with POTS as there is evidence that a large subset of POTS patients have increased neuronal and endothelial nitric oxide levels (but importantly NOT iNOS activation). The relevant study was posted by me recently.

    As for the other contents. Ive heard good things about some of those contents so thanks for sharing.

    All the best.
  13. jayjay85

    jayjay85

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    Hello Valentijn,

    On Google i typed; L-theanine Pots and i saw your post. (I already knew this Phoenix website). I saw that you have a lot of experience with supplements. I saw on several pots that you have a good analytic view of things. I would like to message you privately if its possible; because i am also from the netherlands, amsterdam :) then i can write you my question in Dutch haha. Waiting for your answer.
  14. Valentijn

    Valentijn Activity Level: 3

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    I probably should have updated this thread a year or so ago :p The effects from supplements continued for a few months, then my OI symptoms (probably more NMH than POTS) gradually came back.

    I started Strattera about two months ago, since it's an NRI and my norepinephrine tested low, and that's been working consistently so far.

    If you want to send a private message, click on "Inbox" at the top of this page then "Start a new conversation". And although I'm living in the Netherlands, I'm from the US, so my Dutch isn't very good.
  15. taniaaust1

    taniaaust1 Senior Member

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    oh that sucks.
  16. alex3619

    alex3619 Senior Member

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    In combination the two supplements discussed in the first post are not a lot different from the combination I am currently testing. I think antioxidants, methylation and antiinflammatories might work better in combination, in particular by adjusting production of hundreds of hormones (eicosanoids). Its just an hypotheses, not proven, but I will continue to work on it.

    Reversal of the effects is actually expected under my model as these factors regulate hormone synthesis but there is always some creep in their production - things need to be rebalanced from time to time in order to control how much arachidonic acid is used to synthesize hormones and how much is stored.
    Valentijn and taniaaust1 like this.
  17. Grigor

    Grigor

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    Hi Valentijn. Great post. Which doctor are you visiting in Holland. Sounds like I need to see him too??

    Did he also give you the NRI ???
  18. Valentijn

    Valentijn Activity Level: 3

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    Eventually my huisarts did prescribe it, reluctantly. Then some research came out showing that the ADRA2A gene is over-expressed in ME patients after exertion, and I decided to try an ADRA2A inhibitor, since that gene is known to suppress norepinephrine.

    The strongest and most specific ADRA2A inhibitor is yohimbine, an extract from Yohimbe bark which I was able to get very cheaply and without a prescription in the US. It works even better than the Strattera, so that's what I use now. Selling it without a prescription is banned in parts of Europe, but it's also not available in prescription form in the Netherlands. But I think there are some countries nearby where it can be legally purchased, and I've seen nothing prohibiting bringing a private supply into the country.

    My GP knows nothing about ME/CFS, and there are no specialists here willing to help us, as far as I can tell. I've recently started seeing Dr de Meirleir in Brussels, and he found a couple chronic bacterial infections (Lyme and Yersinia) which will soon start to be treated with IV antibiotics.
  19. Grigor

    Grigor

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    De Meirleir is great .But I'm too bed, sofa, housebound to go and see him. I improved a lot when I got treated by him . But had to stop cause I couldn't pay it anymore .
    So after a few good years a relapse .

    Anyways. I will check out the stuff you are writing about. But who was the Naturopath?
  20. SOC

    SOC Moderator and Senior Member

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    :lol: There was me, not looking at the date of the OP and thinking you'd made some great new improvement. Isn't that just the way with this illness -- 5 steps forward, 4 steps back. Something works for a while and then it's gone.

    Glad to hear the yohimbe is still working for you, anyway. :)
    Last edited: Mar 27, 2014
    ahimsa and Valentijn like this.

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