POTS and Spinal Fluid leak...

Peyt

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Hi all,
There is a video from Dr. Ian Carroll that says there is a connection between some POTS cases and Spinal Fluid leakage:

Has anyone ever had a Blood patch on this site or knows someone who has? How effective is it? And how painful?
Any thoughts regarding this matter is appreciated.
Thanks so much
 

lafarfelue

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Thanks for posting this video.
This is something I've been thinking about a lot the past couple of weeks!

Keen to hear others' thoughts and/or experiences too.
 

taniaaust1

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wow, I'm almost sure I have this going on as I have already a diagnoses of "some kind of connective tissue disease" (due to torn tendons happening at a young age which doctors said was not normal... and I also had a bowel prolapse and degeneration in 3 parts of my back. Daughter has symptoms of EDS so I probably have a gene for this).

I also have a bone spur in my neck area which is heading towards the spinal cord which I was once told "someone you will need surgery on that". I was in a rail disaster and a couple of car accidents so have had whiplash 3 times.

Im so very uncomfortable when I'm upright due to the head pressure....
 

Peyt

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What I am not too excited about is how they detect the leak... they use a CT Myelogram... But this procedure in itself causes another puncture and another hole/leak... and apparently its a very old procedure... I wish there was more advanced ways to detect the leak than by creating another one!
 

kurt

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As I was searching for more options for the treatment of CSF leak, I came across this study:
https://www.scirp.org/journal/PaperInformation.aspx?PaperID=71059

It actually suggests HBOT as a new treatment. Except they used the 2.8 ATM for 120 minutes, the home units only go to 1.3 ATM I believe.
That is a recommend for general population of people receiving lumbar puncture. I would be very hesitant to treat my own (or anyone's) ME/CFS with 2.8 ATM O2 for any length of time. We have such low antioxidant potential, it seems possible some of us could be 'poisoned' by high O2 levels, due to creating massive oxidative stress. And in theory that could precipitate a major crash or at least extended PEM.

Home HBOT units with lower pressure and less O2 saturation have been reported as safe for ME/CFS patients including one I have known IRL, although some have problems with the pressure equalization and blocked sinuses or hard to equalize eustachian tubes. Personally I have considered renting or buying a home unit to experiment with. But I would even be careful with that, working up slowly and learning the personal 1.3ATM O2 exposure limits.
 
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We have such low antioxidant potential, it seems possible some of us could be 'poisoned' by high O2 levels, due to creating massive oxidative stress. And in theory that could precipitate a major crash or at least extended PEM.
That's interesting. I had my first 'dive' yesterday at 1.3 for 60 minutes. I experienced 5/10 pressure headache lasting 12 hrs, muscle twitching whilst in the machine and mild nausea after. This morning I have a big reduction in muscle pain and some residual headache. Apparently muscle twitching is a sign of oxygen poisoning / too much oxidative stress. Surely that wasn't enough to cause harm??

On the other hand, at the symposium it was suggested the HBOT could help oxidise excess tryptophan which would otherwise take (?) 5-7yrs to eliminate through a tryptophan deficient diet.

Our family is also looking at getting a HBOT, but I am a bit turned off given the headache it gave me...
 

kurt

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That's interesting. I had my first 'dive' yesterday at 1.3 for 60 minutes. I experienced 5/10 pressure headache lasting 12 hrs, muscle twitching whilst in the machine and mild nausea after. This morning I have a big reduction in muscle pain and some residual headache. Apparently muscle twitching is a sign of oxygen poisoning / too much oxidative stress. Surely that wasn't enough to cause harm??

On the other hand, at the symposium it was suggested the HBOT could help oxidise excess tryptophan which would otherwise take (?) 5-7yrs to eliminate through a tryptophan deficient diet.

Our family is also looking at getting a HBOT, but I am a bit turned off given the headache it gave me...
How are you supporting your detox or methylation? That sounds like low glutathione levels.

So 60 minutes was probably too much, that is not surprising. I'm still considering this, but after reading this, probably I would try 10 minutes to start. And work up very gradually from there. So hard to be hyper sensitive.
 
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Thanks - I am not, looks like I could benefit from some glutathione/detox help. Yeah it's frustrating being this hypersensitive.

(I cannot find anything on the internet about HBOT causing headache... just that it treats headache. So I don't know how to prevent it in future)
 

Peyt

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Well I have been using HBOT at home 5 times a week (2 hours each dive) for the last 3 months. Last week I got my NutrEval Test results back and the doctor was surprised because the Antioxidant section of the test was all in the Green (Normal)...