Intracranial hypotension

So I replied to a post 3 yrs old! Still looking for advice. My son has now been diagnosed with intracranial hypotension post his 2nd chiari decompression surgery:( Right now he has also been diagnosed with POTS & EDS… The plan is more imaging to find the leak & try to repair… Has anyone gone thru this & gotten better? My son has a constant headache & cannot function

I don’t have much advice. But, I do understand the situation. I’m 1yr 7mo post op with wide spread pain and headaches. EDS is also on my list of possible diagnosis. The VA is rather slow though. I have had some relief with holistic remedies and very light physical therapy. I’m pretty sure I have EDS… without needing a doc to confirm, I researched supplements that could help the pain anddrain of energy I have daily. My research showed nutrition and physical therapy are actually vital for us. There are a lot. My supplements also relevant to a male with EDS (I take some supplements for female functions and horomones) currently are: Alaskan Salmon Oil Omega 3s, 1000mg vit c, 5000 ui vitamin D (very important for energy and many metabolic functions), a high potency multivitamin, daily bone broth, vitamin E, Gaia herbs turmeric supreme, and collagen. While exercise helps, it’s very important to maintain proper posture and listen to the body. Because EDS causes ligaments and tissues to be weak, we have to maintain a strong core. Hopefully, this helps. It’s a daily learning experience.