green

Hi Katcanny,

Well, I am a Ph.D. student. I often take 'soft' days off - which means, I have days where I just don't really get much done. I really hate it though. I hate how hard it is for me to be consistently productive. 

I almost never have a day where I can't leave the house. I do get a lot of nausea, fatigue, dizziness. But, it has been better the past few years.

It definitely comes and goes in intensity.

Yes. And I have had periods in my life where my legs were weaker. 

Also, right now, they hurt like crazy! I am lying on my back at the library with my feet on a chair and my back on the floor because I did single-leg squats yesterday and they hurt so much.

Did you, perhaps, exercise recently? (like in the past few days)?

Even if not, don't get too down about leg weakness - it may come and go over time.

wonderful! 

Gosh, wouldn't it be great if we could beam the light energy to the hypothalamus, thalamus and brain stem? I just don't think anything can reach that far, unfortunately. But if it could it would be great to see if we could enhance autonomic function that way.

That's great! I'm glad to hear it. Are you experiencing sleep benefits? (that is, as I understand it, what the vielight is marketed for)

And, how far up the nostril does the vielight go? You may notice that the nostril space is pretty open, but then that space narrows considerably into the sinus passages. Does the light go up into the sinus passages?

I've rigged up my own system which consists of a red bulb that produces light ~630-650 nm, at 60 mw/cm^2, I put a kitchen funnel over it (so the bottom of the funnel faces outwards) and then push the funnel up against my nostril, so the bottom of the funnel is just matching the nostril opening. But then I wonder - should I angle the funnel more 70-85 degrees from the floor (if I were standing up with my head level), so that the light shines up into my sinus passage, or, more of a 35-45 degree angle to the floor so that the beam is angled as if tio pass right over the roof of my mouth? 

If anyone has ever tried intranasal light therapy, let us know. I found some new stuff about shining light up the nose to improve autonomic function.

"Furthermore the light source in intranasal light therapy is located closer to the all-important mid-brain area where much of the autonomic functions lie, with little barrier in between the light source and the target."

" When compared to alternative methods of irradiating the brain from the outside of the cranium, the intranasal method has a distinct advantage: the concave shape of the underside of the brain envelopes the convex shape of the light beam coming off a single light source in the nasal cavity. The diencephalon (in the mid-brain area) is the seat of some of the most essential autonomic and survival functions, and holds some keys to the physical well-being of the person. This is a hard-to-reach region for light to access from outside the skull but is more easily reached from the nasal cavity, especially with longer wavelengths (that are closer to the infrared red spectrum). The hypothalamus located in this area, is the control center for many autoregulatory functions."

http://beta.asoundstrategy.com/sitemaster/userUploads/site502/Brain stimulation potential with intranasal light therapy.pdf

I am really into shining light into my brain right now. But... I'm not sure I buy this. It seems (to me) that the autonomic regions - the diencephalaon - is too far away from the nasal cavities for this to work. I've been looking into it and I don't think light can get more than a few centimeters into the brain. I can see how light might get to the underside of the frontal lobes, but it seems like a stretch to get to the hypothalamus. There's like 2 inches in the average adult between the sinus cavity and the hypothalamus. But, i don't know.

I recently tried sensory deprivation, which consists of lying for 90 minutes in a highly concentrated solution of water and epsom salt.

It was supposed to be relaxing. But I got out feeling really good. Really refreshed and high energy! The next day (today) I feel like I have post-exertional malaise. I did run a little bit too, but it doesn't seem like I ran enough to trigger my current state.

I am really sleepy, really relaxed, weak, brain foggy. Can't concentrate. Don't care. Generally feel good, but sluggish. 

So, sensory deprivation w/ epsom salts, maybe not the best. 

You know what hasn't helped? Sometimes I use my infrared light on my legs to try to enhance mitrochondrial function. And this, does not seem to help.

Gah!

I don't know if anyone can advise you on infrared heating pads. I bought a cheap one off of amazon, and was underwhelmed. You know, there seem to be multiple mechanisms of action with infrared penetration of human tissue. 

One mechanism is increased blood flow due to heating causing vasodilation. This is more an issue with higher dosages and longer wavelength IR.

Another mechanism is increased NO flow. I don't know much about this - perhaps it is just part of vasodilation. 

Another mechanism is enhanced mitochondrial ATP production. This is believed to be associated with the ~600-900 nm wavelengths. It does not take a high dose to induce this effect. (This is what I aim for when I use my infrared light on my head)

Lastly, I found some new research claiming that IR light can alter water in a way that improves cellular function. I am skeptical of this.

But, the main point I have to make here is this:

(1) Vasodialation and increased NO production may not be so good for some POTS types.

(2) Increased mitrochondrial function may be good for certain kinds of POTs etiologies (don't some of us have straight-up mitochondrial dysfunction? I often wonder how the heck anyone knows this - considering how small mitochondria are...)

So, I think that you want to be careful to distinguish between low-dose NIR (near-infrared 600-900 nm wavelength) and high-dose FIR (far infrared, higher than 900 nm wavelength). You might not want to get both! You can easily get either. If you don't know what you're doing you might get both effects and they could interfere with each other. 

It's been a crap shoot, as I said earlier in the thread. And, to be honest, I'm having some tough times right now. I tried using the light at a greater distance for longer (30 minutes at a distance that should have reduced the power by a factor of 10 or 20) Sunday, and then  ran 3 miles with my roommate. So I slept 10+ hours last night and now my day is just flying by as I sit here feeling disorganized and confused. I guess, as I said, it doesn't help with post-exertional malaise.

Yes! I have this problem too and it makes me very unhappy.

I can't even run a short distance without feeling sick the next day! Ugh!

Hello All,

I just wanted to share that I'm continuing to use infrared light for brain fog. I found a light that produces energy in the 810 - 840 nm range, which is associated with good penetration of the skull. It is very powerful, non-laser light producing energy at a fluence of 200 Mw/cm^2 (that should be microwatts - not watts or mega-watts). I use it for five minutes every even day on my forehead. On odd days, I use the device on the top and sides of my head. I alternate exposure sites to give brain tissue a break from the light energy. But, I try to keep overall exposure comparable to what a human being who works in the sun during the summer for several hours with an uncovered head would receive - so that I am not taking any extraordinary risks. 

I have had good improvements in writing output, which I take to be a surrogate measure of cognitive function. But, I have to admit that I spent a lot of time (literally - four months) changing the dosage and delivery format. So it's a tough thing to do. At one point I overexposed myself and was nauseated and dizzy for several hours. On another occasion I burned my skin. 

Also - I just don't exercise so much. I really resent how little exercise I have to get to avoid post-exertional malaise the next day! I ran 3 miles yesterday and today I've been just unable to write without getting tired. Really frustrating. The light does not seem to help with this. 

Oh yeah! Lasers!

I got started with methylene blue because the LLLT (low-level laser therapy) community had some users raving about how LLLT is complementary with methylene blue.

I don't know that it's safe. It's probably not. I mean - I'm drinking an MAOI.

Dane 

Thanks for writing, Katybug and Yogini,

I think it's interesting that yoga works better for you, Yogini, than meditation. Yoga is probably a very different activity than meditation - it's light exercise, it involves stretching, it is easier to practice yoga for longer periods of time than it is to meditate. I'm glad it's working for you. 

Thanks for the link, Katybug.

Thanks for responding, statesof.

I notice cognitive benefits from meditating as little as 5-15 minutes a day.  But, the autonomic changes may require more practice.

propranolol doesn't do much for me. Sometimes it seems to calm me down a little bit. I don't like to take drugs if I don't have to. 

I hope you feel better soon. 

I've read some interesting studies on how meditation changes autonomic function. 

Here is the kind of thing I've been reading: http://sitn.hms.harvard.edu/flash/2009/issue61/

Ancedotally, the book "Zen and The Brain" gives a first person account of changes in nervous system activity taking place in an amateur (but intensive) meditator. 

During periods of intense meditation, I've noticed some changes in my own reactivity - like a diminished startle response that set in during a retreat. Really loud, sudden noises would not make my hair stand-up or give me goose-bumps - it was noteworthy because I've always had an elevated startle response. I sometimes really flip out when I'm surprised. Interestingly, here is a study on this very topic:

http://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0123512

They talk about 'de-automization of hardwired processes' - it seems like the autonomic nervous system is this thing we have no control over. But maybe we CAN control it, or at least, MAYBE with consistent, regular practice, the autonomic nervous system can be retrained thus, reducing the symptoms of POTS?

I wonder if anyone has had success doing intensive meditation for long periods of time? I'm taking meditation more seriously than I used to, because I've been going through periods of ruminative depression (melancholy and anhedonia exacerbated by ruminating about past life-events). But, I've just been meditating to help with unhealthy cognition which I consider to be not directly related to my OI/POTS issues. I was just thinking today: I wonder if I should switch to an 'easier' form of meditation (like TM), which, although less reputable for improved cognition, has some pretty good documented effects on the para/sympathetic nervous system. 

Has anyone ever tried boosting their mitochondria to treat fatigue and brain fog? It's pretty easy to find sketchy stuff on the internet linking to academic research on various chemicals that enhance mitochondria function. 

I've been dosing myself with methylene blue - it's used in aquariums. It's a dye and a medicine as well. It can be used to treat hypotension - but I don't think it would ordinarily play a role in OI management. I've never heard of anyone taking it by prescription for OI or POTS-related phenomena before. 

https://en.wikipedia.org/wiki/Methylene_blue#Medical_uses

It seems pretty nuts because I'm not taking pharmacutical grade methylene blue, so it's probably contaminated with impurities. But it's really cheap! I guess I'm a little desperate, although in my defense, I'm using a microdose <1 mg per day. I've been having some better days, so we'll see. 

I have almost completely recovered from my OI that onset as a teenager. I am now 33.

I rarely feel dizzy. I still get really tired and weak from standing around. I still feel tired a lot, but I have a lot of trouble sleeping, and maybe some sleep apnea so I blame that. 

My biggest complaint is exercise intolerance. I'm actually having trouble wrapping my head around it.

I'm noticing, from my personal records, that periods of non-exercise correspond to productivity gains and a subjective decrease in fatigue. Often there's a 1-2 day delay between increasing exercise and losing productivity / becoming more fatigued, or, a 1-2 day delay between backing off and feeling better. But, it's hard to not see when I'm looking at spreadsheet data of my workouts / productivity. 

Part of me thinks - oh gee, I should quit working out, because I've been working out regularly for 10 years and look at how much I benefit from stopping! 

Part of me thinks - if you do that, you will slowly regress and end up worse than before.

Any thoughts? I ran a half-marathon in Fall 2015, and almost ruined my Ph.D. work - did nothing for months training up, and hardly noticed the correlation at the time. Then again, this summer, I have a leg injury so I cut out running and starting lifting weights again. Suddenly, again, two months ago by and Ph.D. work is noticeably stalled. This is VERY frustrating!

I would love a way to manage the cruel exercise intolerance - I often start up a new exercise regimen in response to psychological stress - and this is a kind of profound cruelty that my reward for trying to cope in a healthy way is to be set back further. 

I'm thinking of trying mestinon again, I did it for awhile and I just don't have records going that far back about whether it helped with post-exercise OI. I'd like to up my tolerance of exercise without becoming dependent on a new drug though.

Water, of course, is a big helper.

I'm really getting good results from laying down and putting my feet up for 30-45 minutes blocks - a variation of a suggestion by Yogini. 

This seems to reduce the brain fog not so much. But, it really helps when I'm feeling shaky, tired, or when my legs hurt from standing for a few hours at a time.

I am having good results from a Philips Red R40 Heat Light. Which costs <$10. 

PM me to talk about LLLT / Infrared lasers. I am thinking about it all the time. 

Dizzygirls:
>This is a bit off-topic, but I was told by the researcher that, yes, the skull is very thick and the light does not penetrate well through it.

Yes, I think there is some controversy here. There is some research indicating that while 'low-power' IR lasers do not penetrate the skull, high power lasers do.

Yogin:
>For example, the Mayo Clinic recommend to me that I lie down for 45 min with my feet above my heart. This returns blood to the brain and the benefits continue after you've gotten up. 

This is very interesting! I would love to see some research substantiating this claim!

I shaved my head (so the hair won't block IR light) And I'm using a regular light halogen bulb right now (it produces IR light). I wear a "Make America Great!" hat I found on the street to protect my skin from UV light coming out of the Halogen. It seems to help me feel better.

Thank you all,

Green

Thanks. I did not know people were trying to use infrared lasers.

-Green

Hello,

I am interested in knowing if anyone has thought about using infrared heat, or low-level lasers on their cranium (skull) for improved cognition. My reasons for being interested in this are listed below. Citations/evidence in [ ] 

1. Some people with dysautonomia may have brain fog due to decreased cerebral blood flow. [I've read about this on this forum]

2. Heat increases blood flow, as in the use of heat for injury healing. [common sense] 

3. Infrared-lasers have been found to increase cerebral (brain) blood-flow. [One study I found http://www.ncbi.nlm.nih.gov/pubmed/20662034 ] 

5. I've been cutting my hair short (clipper buzzcut) and shining a halogen bulb to get some heat into the top of my skull while I type. Maybe it helps. 

It is a thing to think about, perhaps?

Regards,

Green

This thread is dead. But I wanted to point out that I think you're all misreading the article.

The article suggests that the cognitive symptoms of POTS may be a result of neurophysiology:

"Perhaps underpinning the acute impairment in cognitive performance, reduced cerebral blood flow and a possible uncoupling of cerebral autoregulation during head up tilt has been demonstrated in patients with POTS.

It also suggests that POTS patients may MISTAKE the physiological syptoms of POTS for anxiety:

"Additionally, given that the reduction in cognitive performance during the detection task was significantly associated with the magnitude of the change in heart rate, and that patients with POTS displayed significantly elevated anxiety sensitivity in relation to cardiac symptoms, it is possible that, in the context of increased vigilance to somatic sensations, attention is diverted and impaired cognitive performance follows."

But, notice that the study found that POTS patients have more cognitive trouble when standing up than when lying supine. That broadly supports the claim that the cognitive symptoms of POTS are neurophysiological and not psychological, although the authors are doing their academic due diligence, by saying "well, it LOOKS like they do poorly when they stand up because they don't have enough blood in their brain, but, it is POSSIBLE that they're just distracted by thought that the pounding sensation in their chest is a pending heart-attack.....

I don't think this article is pushing the "POTS is just anxiety" folk theory.

I haven't been on this forum for over a year, I think. This is because I'm doing much better! I even quit taking all my daily medications, and the prescription testosterone. I take mestinon only occasionally.

My symptoms started over 10 years ago. So, this should demonstrate that people do experience significant remission from POTS even after very long periods of time have passed. So there you go.

I got better. Chronic dizziness improved to the point where I am now only dizzy in extreme cases. Chronic fatigue was reduced significantly so I am now working and finishing my Ph.D.

I often wonder how much of my 'recovery' was due to reducing how much cardio I do. I wonder and worry about it a lot, because it is so frustrating that I cannot exercise intensely more often.