Transient betterment from blood patch / csf venous embolizations

Hello all. I made an introductary post the other day but i wanted to bring up a specific topic about CSF leaks. I touched upon it before but id like to get into more detail.

2 years ago i did a 48 hour flat test, which involves laying flat for 48 hours straight with only a neck towel. After 4 hours or so, my 24/7 headache started to ease away. Eventually by the end of the test, i was feeling near pain free. Because of this, i suspected csf issues.

Fast forward the next 1.5 years. I had a 2x blood patches, 2 myelograms (first found 5 maybe fistulae, second found nothing) and an embolization of 5 fistulae.

In each patch or embolization, i had several days where i felt a LOT better. Including some days where i seemingly had high pressure. None of this really lasted long, maybe a few days of good and a month of better.

So my questions are:

  1. Does eagles / compression explain the transient time of feeling better from patches/embolization?

  2. Why would i feel so good after a flat test? Does have neck support laying flat make eagles better?

  3. Anyone else go down this route?

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Usually laying flat would increase head pressure, so if you have IJV compression I’d expect it to make you feel worse…unless the build up of intracranial pressure caused a CSF leak while laying flat, & that’s why you felt better?! With the patches, usually members do feel better initially as it repairs the leak, so stops the symptoms of low pressure, but then you’d expect the pressure to gradually build again and so then start to feel worse…

If you had some support on your neck I guess possibly it could’ve pulled your C1 away from the IJVs, opened up a little space maybe? @SCJeff and @Emerald have some suggestions about this in another discussion:

Worse than I thought - General - Living with Eagle

As I think I mentioned before, the Spikey Leaky Syndrome seems to be quite common with IJV compression…

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