trjonas

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 well to the greater occipital nerve block (and it sounds like you did), then the nerve decompression surgery could be an option for you.

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.

@Luis I'm so glad!

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 the surgery. Because I partially did, he said he felt good about performing the surgery. It was not until a week after the surgery, when I was there to have the stitches removed, that he gave me his findings. These were: both greater occipital nerves were badly compressed and damaged. (He described the specific damage but I won't go into that here, since that doesn't actually really matter much - whether they were damaged or not does.) He was happy: we made the right call. He continues to have followup appointments with me and we're both happy with the way things are going! Tiffany P.S. In the interest of full disclosure, I am also now undergoing the full Vitamin D protocol that has helped so many people on this forum, and also Vit M busting, for the same reason. These I started in earnest after the surgery to address the other symptoms I still had. The surgery was very effective in helping me eliminate, right away, the symptoms you described and it may yet be, as my nerves continue to heal (taking tons of Vitamin B to aid this along with the healing the Vit D provides), that the surgery plays a (big?) part in eliminating in those symptoms too. In studies I read, there were two people of very similar age, condition, and onset (concussion) to me, and this same surgery eliminated all their symptoms, but it took many months for one of them and over a year for the other. Their symptoms did reduce over these time periods, so I surmise it was just the healing process. The nerves were no longer compressed but had to heal from the beating they had been taking.

@Tony Only SO, so, so happy to hear this!!!! Yeah!

@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!

@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

@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 is that Batch also told me earlier on that I was at a sufficiently high level to come off my Rx. I tried and it was *real* bad. I mean: REAL BAD. But three weeks later when my levels were much higher, I tried it again and that time I was able to cut the Rx by a third (as above) and still sustain my improvements without feeling any worse. It's been almost a week on the lower Rx dose and so far so good! So I wonder if like me, you were actually told to cut your Rx too soon. I'm willing to get my D levels up to 300 if I need to, because my condition is extraordinarily refractory. At my last lab test, which was about three weeks ago, I was already well past 150. Your mileage may vary (some things that work for other people on this forum and others don't work at all for me) but I wonder if you could get your Vitamin D levels up that high and then be able to dial back the verapamil without adverse results?

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...?

You're right, that's not too far from me! Go Carolinas.

Cool! Where are you, @spiny?

> 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!

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?

@LuisDid it work? Give us an update if you're still on these boards!

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.

@spp-fan For something like this I would recommend looking into occipital nerve decompression surgery. I normally wouldn't, but if your occipital nerve sheaths are now inflamed or pressing down on your occipital nerves, it could create a cluster-like headache. (Full disclosure: I've had this surgery. It solved this problem, which I also had, for me. I still have other issues and symptoms, but @xxx is helping me work through them with the Vitamin D protocol and @Jteira with the busting; they are both AMAZING.) I'm not sure where you're located but I'm in Charleston, SC, and my doctor/surgeon was Dr. Marcelo Hochman, who has a heart of gold and amazing skill.

This is a wonderful story! I am so, so happy for Tom and grateful to him for sharing his story. If it worked for him, it could work for someone else. Not everyone, maybe, but this could save at least some lives. Thank you for posting it, @Tony Only!

@Jimmy MartinezYou are awesome! I also pray for everyone on these cluster boards. @MoxieGirlI'm a huge fan of yours. Just know that someone can be spiritual but not religious. I'm that way; I'm not at all for religion either.

Thank you for posting this, @Tony Only! What a great organization!

@devonrex I read that taking melatonin can interfere with D3 healing. (In this book: https://smile.amazon.com/gp/product/1491243821/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1&asin=1491243821&revisionId=&format=4&depth= "Taking melatonin and D3 together might actually counteract the healing properties of D3 taken alone.") Maybe that's why it hasn't been fully effective for you? I stopped taking melatonin when I read this.

Thrilled to see this! Go, Batch! @xxx

@Tony Only Is https://www.lifeextension.com/lab-testing/itemlc081950/vitamin-d-25-hydroxy-blood-test (though that's only Vit D) an option for your country? If not, I can help you pay for a test in Finland if you need it. I'm not wealthy but I want to help!

@kat_92, hang in there! I was never diagnosed with it but there's a possibility I unknowingly had it very early on (one of my doctors speculates I did), in the earliest days of COVID, a few months before all the lockdown and masks and things began, and it was NO FUN. Maybe take high dose Vitamin D3 and K2 and magnesium to knock it out. I wish I had known that back then. Batch @xxxcan tell you more, but also I just read a book on Vit D that says it can knock out many illnesses when taken in high doses.

@StephenAwesome post! Love the simplification @xxxInteresting about the dust mites! I'm allergic to dust so I'm going to order some hypoallergenic and dust mite proof bedding.

@Jost you can try taking oil of oregano. It fights both bacterial and viral infections very effectively. Powerful stuff so don't overdo it!