3 ms·

at lowest for me it was normal to be in bed for 16-20 hours a day in agonizing pain and horrific migraines. Dozens of doctor appointments had mostly been a wast

at lowest for me it was normal to be in bed for 16-20 hours a day in agonizing pain and horrific migraines. Dozens of doctor appointments had mostly been a waste. They all claimed it was anxiety. Realized one morning that I had spent hours thinking how wonderful it would be to never wake up again. Have kids, and the would end up in state care without me. (No family capable of caring for them) Started trying every suggestion I could find on the internet. Lots of wasted effort and backfires. 6 months later I was Kayaking with kids each weekend. Took about 3 years to get mostly back to normal. Hardest part was giving up all normal food and switching to a strict plain chicken, sweet potatoes and green veggies diet. Supplements, massages, avoiding all scents, special eye glasses, etc. eventually finding the right medications that didn’t have insane side effects.

the__alchemist 3y ago
What/was is the cause of the pain and migraines? What triggered the fix, if you know? (The transition from bed to a kayak)
- treeman79 3y ago
  Underlying causes. Autoimmune Sjogrens, clotting disorder that was in over drive (factor 5) high cranial pressure(IIH) Nerve damage(probably from Sjogrens) lot Vit D Did an elimination diet. That calmed the body down. AIP diet to maintain. Started high doses of Vit D, E, Omega 3. Started watching bob and Brad and spent a couple hours a day on stretching and massages. Discovered and treated TMJ. Removing smells and lights. That got migraines under control. (Slow reduction over the months) LDN got nerve pain under control. Diamox to get head pressure under control. The big one was I kept having stroke symptoms, but MRIs were clean. Started blood thinners and symptoms went away.
  - throwaway02sfv 3y ago
    My wife seems to have broadly the same symptoms you are mentioning. Sharp migraines, anxiety attacks (as per doctors), rapid heartbeats, disturbed sleep, bodyache, random mood swings etc. Her MRI is clean too. Doctors just started her with blood thinners which might be alleviating some pain but no, she is not feeling good at all. Had done multiple tests, visited bunch of doctors but still yet to figure what's exactly wrong with her body?
    - treeman79 3y ago
      Rhumtologist to check for autoimmune. Avg time period for diagnosis for mine (Sjogrens) is 7 years. Get test results and look them up. Doctors kept ignoring positive results, saying they are false flags. Like high ANA. When I kept pushing for more tests they kept saying results didn’t matter. Or they use tests that Re 1/3 false negative. With diet I didn’t need dr approval and lots of people say it works better than meds. I found that to be true. It is a Huge mental block on giving up comfort food when hurting. Clotting (factor 5) food didn’t matter. But I found artificial sugar was a trigger. Neurologist for nerve pain or head. Neuro-ophtomoligist are often good at whole body issues. IIH high cranial pressure may or may not have clean MRI. Lumbar puncture is needed.

the__alchemist 3y ago

What/was is the cause of the pain and migraines? What triggered the fix, if you know? (The transition from bed to a kayak)

treeman79 3y ago
Underlying causes. Autoimmune Sjogrens, clotting disorder that was in over drive (factor 5) high cranial pressure(IIH) Nerve damage(probably from Sjogrens) lot Vit D Did an elimination diet. That calmed the body down. AIP diet to maintain. Started high doses of Vit D, E, Omega 3. Started watching bob and Brad and spent a couple hours a day on stretching and massages. Discovered and treated TMJ. Removing smells and lights. That got migraines under control. (Slow reduction over the months) LDN got nerve pain under control. Diamox to get head pressure under control. The big one was I kept having stroke symptoms, but MRIs were clean. Started blood thinners and symptoms went away.
- throwaway02sfv 3y ago
  My wife seems to have broadly the same symptoms you are mentioning. Sharp migraines, anxiety attacks (as per doctors), rapid heartbeats, disturbed sleep, bodyache, random mood swings etc. Her MRI is clean too. Doctors just started her with blood thinners which might be alleviating some pain but no, she is not feeling good at all. Had done multiple tests, visited bunch of doctors but still yet to figure what's exactly wrong with her body?
  - treeman79 3y ago
    Rhumtologist to check for autoimmune. Avg time period for diagnosis for mine (Sjogrens) is 7 years. Get test results and look them up. Doctors kept ignoring positive results, saying they are false flags. Like high ANA. When I kept pushing for more tests they kept saying results didn’t matter. Or they use tests that Re 1/3 false negative. With diet I didn’t need dr approval and lots of people say it works better than meds. I found that to be true. It is a Huge mental block on giving up comfort food when hurting. Clotting (factor 5) food didn’t matter. But I found artificial sugar was a trigger. Neurologist for nerve pain or head. Neuro-ophtomoligist are often good at whole body issues. IIH high cranial pressure may or may not have clean MRI. Lumbar puncture is needed.