Some More Alternative Treatments

Index Support Center Forums Non Rx Strategies Some More Alternative Treatments

This topic contains 3 replies, has 3 voices, and was last updated by Pereise1 4 weeks ago. This post has been viewed 543 times

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    Participant @pereise1

    So I had a couple ideas that may or may not work. The scientific evidence is there but the studies haven’t been carried out yet. So for my first idea:

      Sauna Use

    So PWN have a growth hormone deficiency (Ref 1, 2, and 3). A GH deficiency is said to destroy your memory, sex drive, sense of self, among other things. So how to increase GH without getting into messy peptides and stuff? Well, Use of Sauna increases Growth Hormone. Also increases Vasopressin and Ghrelin (which increase Orexin) as well as endorphins. In another study with healthy volunteers, GH secretion rose by 16x compared to non-sauna users. So theoretically then, sauna use should improve sleep as well as wakefulness in PWN. I just signed up to a local gym with a sauna and had my first session yesterday. We’ll see how much it helps. Here’s a good summary of all the benefits and risks.

      Hyperbaric Oxygen Therapy

    Now this one seems particularly illness/life changing. So the mechanism of action behind hyperbaric oxygen therapy (HBOT) is to flood the brain and body with oxygen. What this seems to do, is to induce rapid healing of scared or inflamed tissue. Among the many benefits of HBOT are lowering neuroinflammation (Ref) and because much of the fatigue in N is related to neuroinflammation, this is a promising treatment.

    What’s more, as analyzed in the “Cure For Narcolepsy” thread, we all have scar tissue, or gliosis, in our hypothalamus. When our orexin neurons got attacked, they were covered over with scar tissue, preventing their regeneration. HBOT solves this problem by seemingly “reoxygenating” the tissue, causing a change in the scar tissue by having the scared neurons begin to change and sprout new neurons (Ref). Apparently this has the effect of “restoring locomotor activity” in brain damaged rats (Ref). Now could this possibly do the same in us by healing the scared tissue in our brains? No way to know for sure yet, but there’s been a lot of research into the healing effects of HBOT in strokes and traumatic brain injuries.

    Here’s an additional article that goes into the benefits. I got a groupon for 3 sessions for $101 that I can use next week that I’m going to L.A., so I’ll try reporting back here as well.

    Moderator @ferret

    Fascinating! And thank you so much for providing links that explain your thought processes and back them up.
    Please report back on the Hyperbaric Oxygen Therapy experience. I won’t do the sauna because I can’t tolerate heat but the oxygen therapy sounds promising (especially your first (ref)) AND I will be passing on that info to so many of my friends who have had TIA’s.


    Participant @natdoc


    I am a big fan of both sauna therapy and HBOT. We do offer sauna therapy at the clinic and plan to add HBOT as soon as we can. Just a note for those of you who cannot tolerate heat, the sauna is an infrared device so heat itself is not a problem. Our sessions run from 15 – 30 minutes. We actually have many patients who sit through a sauna therapy session about an hour prior to their sleep study we have found that it also helps promote delta sleep. I will attach information soon.
    HBOT therapy is not new in general we have used it for quite some time to treat “bends” or decompression sickness and also to treat severe burns. It is beginning to be recognized for its uses in TIA, Stroke, MS and other neurodegenerative processes.
    Of course the problem is going to be in getting access since insurance companies do not currently cover these therapies for Narcolepsy. or insomnia. We offer the therapy as part of an office visit; so far we have not been dinged for it but I’m sure at some point someone will have something to say about it.
    These units are not all that expensive, I would suggest for those interested to trial a few sessions and see what happens, if useful then purchase may be an option. These units generally retail for about 2500.00.
    I wish everyone the best

    Participant @pereise1

    So as a follow up for everyone, I do feel that the sauna use and the HBOT (6 times so far) in the last 6 months has made a difference. However, I’m not sure how helpful my personal experience with these is, as I’ve also been steadily detoxing from mold exposure as well. It’s tough to weed out which symptom is caused by Narcolepsy, and which is caused/exasperated by the mold. After each HBOT session, I do feel a lasting boost in wakefulness and dysautonomia. Regular use of the sauna, while sometimes giving me a flare up of mold symptoms due to increasing circulation of mycotoxins, has improved the slow wave sleep deficiency I normally experience. I’m gauging that based on improvements in the continuity of my sleep, increased muscle and skin healing, improved memory and mood. 3 or 4 times a week seems to be the sweet spot for me.

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