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trjonas

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trjonas last won the day on June 9

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About trjonas

  • Rank
    Advanced Member

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  • Gender
    Female
  • Location
    Charleston, SC

Profile Fields

  • Cluster Headache Community
    Yes
  • Migraine Community
    Yes

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  1. Hi @LLLI'm not surprised that none of your doctors know of nerve decompression surgery. Very few doctors seem to know about it, which would be pretty shocking since it can be so effective, and even costs less over time than that standard of migraine treatment botox - except that most doctors seem sadly uninformed about anything to do with clusters, HC, or even standard migraines. I also have HC; that's been confirmed because I partially respond to indomethacin. I'm with you on the very high baseline and the knot in the neck, rhino/sinus, eye watering/blurring, etc. If you responded
  2. Hi @CHfather! I am not - they never mentioned it. @xxx has me taking Vitamin B to heal the nerves, though, and I take skullcap (also good for nerves) from Les' licorice regimen.
  3. trjonas

    D3 regimen

    @Luis I'm so glad!
  4. Hi @LLL! I am VERY reluctant to contradict @spiny, who has been super knowledgeable and a huge help to me, and I don't even know if this is true: but the doctor / surgeon who performed my surgery said there was no MRI or test that could confirm damage to the peripheral nerves. He is extremely well regarded in Charleston (my city) for his expertise in this and other areas, but that doesn't mean Spiny could be right and he could be wrong. But in any case, he told me the best indicator was whether I responded to nerve blocks. If I did not, he would not have in good conscience recommended th
  5. @Tony Only Wow! Thank you for this. It's *very* encouraging. That makes me want to come off the indo all the way. I'm down to 50 mg daily from 225 mg, but I think I can go all the way. I too am doing the Vitamin D protocol (very high dose in my case, as I seem to have multiple conditions and they all seem refractory, e.g. 100,000 IU daily, with a whole bunch of cofactors, under @xxx / Batch's watchful care), and busting, with help and guidance from the generous @Jteira. Here's to complete healing!
  6. @Cast Iron, you could read this book about the Coimbra protocol to get an idea of side effects of really high-dose Vitamin D. I'm finding it helpful and informative: https://smile.amazon.com/gp/product/1983353248
  7. @Cast Iron Hi Alex, I hear you! Mine seems to be a very big beast indeed too, but I think I am finally seeing some light at the end of the tunnel. Between many busts (I'll have to look but I'm at between 10 and 20 busts including ketamine initially) and the Vitamin D protocol on steroids (I've been taking 100,000 IU daily with Batch's blessing and some additional supplements he recommended), just this week I was able to decrease my prescription medicine by 1/3. I never even dreamed I'd ever be able to do that. The reason I asked about your levels when you tried dialing down the verapamil
  8. Oh my!! That's terrible! > After 1,5 month my blood serums were at par If you don't mind me asking, when you say "at par," what was the number? e.g. 90, 125, 150...?
  9. > Initially you may get some days are better than others kind of thing. But when it kicks in and your D3 levels are high enough, the whole mess can just melt away That's exactly what I was hoping to find out! That's what's happening to me (some days are better than others). It's taking longer for me, I've been on the new Vitamin D protocol since April 23, but my condition is really refractory. Thank you, @spiny!
  10. For anyone who has been successful in eliminating their clusters with the Vitamin D protocol: once you started to see it improvement, did it steadily improve until the clusters were gone or did it fluctuate as you got better, with some days worse than others? As with busting: when the first and/or second day might be worse and the remaining three days better and better?
  11. trjonas

    D3 regimen

    @LuisDid it work? Give us an update if you're still on these boards!
  12. I love this! @IceCr4cKeR what dose of iodine do you take? I've been taking one capsule of this daily for months because the ER found my blood levels were inexplicably low in sodium and advised me to increase salt in any way I could. That was the only abnormal thing they could find with me. My sodium levels are normal now; I've been taking the iodine daily to maintain that. I wonder if taking more would help me reduce my HC/CCH.
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