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Posts posted by trjonas

  1. On 7/8/2021 at 5:59 PM, LLL said:

    I've mentioned compression to many docs over the years but none really seemed to indicate it was on their radar as something they were familiar with, or not relevant for me given the other symptoms and imaging. Too much seems to be unknown about the pathophysiology and the nature of the beast... 

    I did just have a occipital block recently, which is on the CH "treatment pathway" with my current neurology doc. It did have a bit of benefit for a couple days.

    I've tried the long list of meds and blocks over there years, and a long list of specialists, without much benefit. I do think the CCH is part of the picture. Is there also, nerve compression, or cervicalgia? Maybe... Hemicrania Continua has also come up in my treatment because I have very high baseline headaches in addition to attacks (and other CCH symptoms like the knot in my neck, rhino/sinus and eye swelling, etc).


    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.

  2. On 7/6/2021 at 11:31 AM, CHfather said:

    @trjonas  Just curious -- Are you taking Neurontin (gabapentin) or a similar medication as part of your post-operative therapy?  I ask because Neurontin is often prescribed in nerve-regeneration situations (and it's also sometimes prescribed for CH).

    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. 

    • Like 1
  3. On 7/4/2021 at 7:37 PM, LLL said:

    @trjonas I'm glad you were able to get some releif at last for part of your symptoms. Can I ask how you were able to tell what components of your headaches/symptoms were from the compressed nerves vs CH? I ask because I have clear cluster symptoms and a diagnosis, but also seem to have strong triggers from neck posture/position and neck motion and I have wondered about nerve compression and/or cervical component.

    Was there any testing or imaging that was able to confirm the diagnosis of compression of the nerves?  I have had many nerve blocks over the years with some partial response but with nothing clear or repeateable.  My somewhat recent CCH diagnosis (after 11 years) does seem correct for what is going on and I am getting ready to follow the guidelines clearly laid out here at clusterbusters.  Like others, it is a long bumpy road.

    @spp-fan There is a study from the 1990 that does indicate that neck position/flexion IS a factor in cluster headaches for at least some percent of patients, more so with CCH, according to the abstract. [Nuchal features of cluster headache - PubMed]. This seems true for me and has been part of why it took so long for me to get to the cluster diagnosis.

    And being my first post, I do want to thank the community for all the kindness and effort that is shown across the forum.

    Thank you, L

    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!


    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.


    • Like 1
  4. 3 hours ago, Tony Only said:

    This was me 10 years ago. At my chronic phase I was on 720-1100mg verapamil daily. To me the "dependency" was also keeping CH non-stop; keeping me chronic. I never got relief from Batch regimen (Vitamin D protocol) as long as I was on verapamil. Looking back now, for me use of steroids and triptans also made it impossible to create a PF break with vitamins. At the very end of my rope I was forced to do the detox from prescription meds to be able to start busting. It's a road I probably could not walk twice in one lifetime. But now that I'm free from Rx, D3 protocol is only thing I need to keep me pain free and have busting to use should things go bad. I have serious heart issues from verapamil and back then could not do any exercise any more, sometimes not even walk or stand (due to heart and BP) so I'm very satisfied with this change.

    PF wishes to everyone ^_^

    @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!

    • Like 3
  5. @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?

    • Thanks 1
  6. 10 hours ago, Cast Iron said:

    For every success story there is a counter balance, like mine.

    After consulting Batch I started the D3 last year March as I was looking for a solution to decrease my intake of verapamil before my next cycle would start. After 1,5 month my blood serums were at par and removed one 120mg verapamil to 600mg daily dose (plus naratriptan, sandomigran), hoping the D3 would keep the beast at bay. What happened was not what I expected, my cycle started and ramped up to sometimes 12 attacks a day. Did the Emgality, GON injection, prednisone but all to no avail. On a certain month I had >240 attacks (pic below). Also my normal cycle was extended from 5 months to a full year now and in between I had to up my verapamil to 720 again. Still I am in the aftermath of my cycle, and actually scared this will roll over into a new one which normally happens around May/June.



    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...?

  7. 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

    • Like 1
  8. 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?

  9. On 9/15/2020 at 7:08 AM, IceCr4cKeR said:

    I suggest try taking Iodine & Vitamin K with the d3 regimen... Vitamin K helps push Calcium into the bones . while Iodine helps the Thyroid function, there's a bit of search done on Thyroid and headages. Iodine & K can lightly supplement decreasing Calcium levels in the blood 

    https://www.thyroidcentral.com/hypothyroidism-and-migraines/ (or google  Thyroid headages.) 

    Thornes Vitamin k2 has 15mg = 12,500% per 15 drops ( 1 serving) a bit pricy. , over the last year after I started taking Iodine with K during my d3 regimen, there's been a meaningful decrease in episodes and and pretty much the god dam pain has plummeted from 7-9 to 3... This could be due to other factors, but still worth a shot. 

    ****** Highly suggest you guys read ****

    https://www.medhelp.org/posts/Thyroid-Disorders/Cluster-Headaches-and-Hypothyroidism/show/1698010 **** 

    https://pubmed.ncbi.nlm.nih.gov/31310335/  (Relationship of Migraine and Tension-Type Headache With Hypothyroidism: A Literature Review) 


    Iodine -  /////// LE's D,K & Iodine   ///// Thornes Vitamin K2 15mg Liquid

    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.

  10. On 2/5/2020 at 10:37 AM, spp-fan said:

    I don’t think they will find much with the MRI. Since I wasn’t in a trama or accident. But I am maybe hoping they find some inflammation maybe pressing on a nerve or something like that. I really only get the pain when my head is in a forward position. 

    I don’t really have many of the above symptoms. When I don’t get a chance to correct my head at the onset of a position related headache it will end up radiating up to the front of my head. I do get migraines and this positional stuff is triggering them. 

    the past two days since I have woken up with a sinus pain and pain in the back of my head.  After I get up and moving around the pain goes down without meds. But never goes completely away until I take a Advil cold and sinus pill. 

    It seems I don’t really have CH. But I also don’t know of any other headache forums or communities. To share and reach out for help. If anyone knows any I’d be happy to listen.  Thanks. 


    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.

    • Like 1
  11. On 10/9/2019 at 9:37 PM, Jimmy Martinez said:

    HI everyone,  nothing much to say except that I hope everyone is feeling substantially less or zero pain. I pray every day for myself to CH free and for all of you.

    What's works for me is chanting NAM MYOHO RENGE KYO.  And Verapamil!

    I certainly don't want to push religion on anyone but I wanted to tell you all what works for me. 

    We can and will defeat this.

    To your health and happiness always,

    Jimmy Martinez-



     @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.

  12. On 8/29/2020 at 10:22 AM, devonrex said:

    I did try it, it helped my joint pain and such but didn't touch my attacks. I am just day by day. Melatonin has helped a bit with getting some sleep.

    @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.

  13. On 10/22/2020 at 9:17 AM, Tony Only said:

    I have been asking for prices this week to have these measured in my town. Cheapest price in my city is around $270 for Vitamin D, calcium and PTH together. Unfortunately I can't afford that.

    We have a public healthcare system and it is just about impossible to have Vitamin D measured there. Maybe once to make sure there is no deficiency but if you say you are using supplements the instruction is to stop using supplements. If I have had other health issues and high Vitamin D level, I have always been instructed to stop taking vitamin supplements before receiving any kind of care. Should I take costly lab tests on private sector, those would affect my care in public sector since they see the results. So it is kind if forbidden to have high Vitamin D levels over here.

    Lucky ones have health care in private sector via occupational health or insurance but majority are under public health services. I was wondering how is this in other countries ? Finland has a good reputation about public health services which overall in practise ain't that great.

    @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!

    • Thanks 1
  14. @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. 


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