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As a note, I have had what I just assume are angry shadows, hitting into the 8 area during normal shadows for a few minutes then dropping back to the normal annoyed shadows.

In the "Treatment of Cluster Headache" that document he created for the American Headache Society, Dr. Goadsby says "1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach." That was a few years ago. The 2023 European Academy of Neurology treatment guidelines for CH, of which Goadsby was one of the authors, refer to "the use of at least 100 mg prednisone (or equivalent corticosteroid) given orally." (I can only see the abstract of this article so I don't know what the taper is.) In a 2020 study, patients were given "100 mg oral prednisone for 5 days followed by tapering of 20 mg every 3 days," so that's 18 days. Another study in 2021 used that same protocol. A comment on one of those studies mentioned "historical ambiguity about the optimal oral corticosteroid dosing regimen." But maybe the higher initial level and/or longer duration than a typical approach is what is being used now. As with many other treatments for CH (including busting), maybe the dosages creep up as people decide to throw more at this condition than they might otherwise have considered at first. Sorry that busting isn't working for you this time!!!!! Have you considered switching substances (from MM to L or seeds, for example), which does seem to help many people?

For me, it has been: prednisone 5mg oral tablet - 13 day taper 12 tabs x 2 days (60mg) 10 tabs x 3 days (50mg) 8 tabs x 3 days (40mg) 6 tabs x 2 days (30mg) 4 tabs x 2 days (20mg) 2 tabs x 1 day (10mg) Stop

I didn’t even think about SUNCT. Good call. here is a brief description of them. SUNCT (also known as Short-lasting, Unilateral, Neuralgiform headache attacks with Conjunctival injection and Tearing) is a rare form of headache that is marked by bursts of moderate to severe burning, piercing, or throbbing pain, usually on one side of the head and around the eye or temple. The pain usually peaks within seconds of onset and may follow a pattern of increasing and decreasing intensity.

hiya Mox...good to hear from you...very happy for your success! ...yup, that is exactly what happened to me on about 3-4 cycles over 30+ yrs. the first time i was sure i was dead with a stroke. 0-10-0 in 1-2 minutes. took me to my knees. once i knew i wasn't dieing i wished for that kind of cycle every time....quick and gone and get this shit out of the way fast. the difference for me was no other CH symptoms, except maybe the mental/physical fatigue intense pain causes. ...i dunno what SUNCT is so can't comment there. didn't seem to me a different HA type, same tho more intense pain, in exactly same spots...just a different presentation of CH... best j

Same as above, sunct sounds like it fits, seems like you are getting to know that side of the primary headache family tree, which sucks.

If I recall correctly, the last one I did had me at 60 for a week and then tapered off.

I’m about to go back and try a prednisone taper - what is the MG per day/number of days you guys are prescribed when you go that route? It has been a few years and I do not recall what my script was exactly. Think it was something like 60mg for 3 days, 40mg for 2 days, 20 mg for one day, 10 mgs until the bottle was gone. Prednisone was the magic bullet for me back in 2018-2020, but I wasn’t aware of potential side effects as I am now. I don’t remember running into any issues personally. This is kind of the nuclear option for me - have busted 4 times with no results (has worked like magic for me the past couple of years), on day 8 of Vit D3 protocol (following to the T) but not sure if I can wait it out to see if it ends up working but I plan to continue regardless. I’m a month into this cycle and just had a 6 attack night. Really at the end of my rope.

This sounds like SUNCT; which is characterized by really short but painful headaches

Hi everyone, I have pretty much shut down my cluster headaches with shrooms and seeds. My last full-on cluster headache was several years ago. But, ever since then, about once a month or every other month, I get this weird headache that I’ve never found a diagnosis for that I’m now calling a Micro-burst Cluster. These clusters last less than 5 minutes, usually less than a minute. 10-30 seconds, sometimes a full minute, sometimes a bit longer. But they aren’t Ice Pick headaches. Those feel completely different. The reason I think these are cluster-like is because they are one sided, usually in or just above the eye, are ultra intense and the after effects are the same as a cluster. Feeling wiped out, body temperature swings, emotionally drained, post-cluster headache, etc. It can often take me an hour or two to recover from one of these 10 second headaches. They seem to tick all the cluster boxes apart from meeting the 15 minuted - 3 hour duration part. They even strike me completely out of the blue with no warning. When I mention them to the professional headache community, I never get a response. They don’t see resemble any known headache type. So, I’m curious if anyone else has experienced something like this. Mox

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I am glad that that helped. I surfer with sleep apnea also. Got my C pap machine years ago. It did not help my clusters at all.

A good reminder. Thank you.

I was wondering how many of you know that their is a relationship between some cluster headache sufferers & sleep apnea? My wife suffered from cluster headaches for about 15 years. We thought that it was because of "El Nino" weather patterns as the headaches correlated with these weather events every couple of years. Every neurological test & study she went through yielded nothing...no abnormalities! Until one recently bad episode last year, I contacted a pulmonologist to set my wife up with a sleep study. The results of that study indicated she had severe obstructive sleep apnea. She started using a bi-pap machine with sleep & the cluster headaches immediately disappeared that very night! The pulmonologist stated that he has seen dozens of cases just like my wife's! I rarely see this discussed on Cluster Busters.

Positive Results: Psilocybin Reduces Cluster Headache Attacks A new extension phase study from Yale led by Dr. Emmanuelle Schindler proves that repeated, low-doses of psilocybin lead to a significant reduction in the number of cluster headache attacks. After doing a 3-dose pulse regimen of low-dose psilocybin, cluster headache attacks went down from a baseline of 18.4 to 9.8 cluster attacks per week. For more information: https://conta.cc/4d8NI22

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Thanks a lot. Took 30,000 last night and will probably continue.

Now that I think of it since it is his thread that should notify him to

I’m diagnosed and medicated. Anecdotally, dextroamphetamine seems to have a short term preventative effect for the 4-5 hours it’s in my system. I’m episodic, and today is actually the first day that I have had one break through within a 4 hour window of dosing during a cycle. It was definitely on the lower end pain wise. As it’s obviously a stimulant, makes sense as to why it works for me that way.

Hi Batch, Been an episodic Ch'er since I was 18. 28 years old now. Started the d3 regimen that was posted here in 2016 as well as Verapamil and never waivered. I get my episodes every year or two for about 3-7 weeks. As people have noted before, the episodes seem to get longer and more intense as I age. Currently in one of my most aggressive episodes with a record of 27 attacks in one day using O2 and triptans as needed. I got a blood test after increasing my d3 dose to 20,000 iu a day and my total came out to 116 ng/mL. My calcium levels are in the green. Unfortunately I forgot to request PTH results. Do you think I should increase my daily d3 intake to reach above 150 ng/mL? Was nervous about taking 100,000 iu a day based on already being on 10,000 iu for years. Another question about d3, is it okay to be substantially higher as long as my calcium levels are in the green? Also on the anti-histamine regimen and full keto diet. Thanks for all your help.

Hello, new poster here, long-time CH sufferer; 13 years now just wanted to drop my opinion Based on your description, I think it is not cluster headaches ( again only in my opinion, not a doctor ) The reasons why I don't think it is CH is because: 1) Odd timing of first occurrence ( 12 as opposed to 20's+ ) 2) Length of attack period lasting only days and not weeks/months 3) Possibly not responsive to oxygen 4) No known triggers ( as another poster pointed out, many have a strong reaction to alcohol ) 5) Traditional antiinflammatory and painkillers seem to have some effect at least for awhile ( many report they have no effect at all or extremely stunted effect ) Individually they would not rule out CH, but taken together it doesnt seem like it is CH. Im not a doctor but it seems from what you described more similar to a migraine type attack than clusters.

I tried it twice but it did nothing for me. I hope it can help you if you so choose to try it.

Update to this just for notes.. I went back in for another infusion last Monday and Tuesday, only 2 days of treatments this time. No clusters after the first day. I think this did help the last time as it got me out of a bad spot and I did have a few multi day cluster free breaks. they did creep back up to about 2 or 3 a day so I scheduled this last treatment. I have not had to use any triptan or the DHE injections they gave me for home use. I think maybe this time around I will mix in some alternate medications to see if I can just get on top of this crap and keep them suppressed longer.

The sadly ironic thing, at this point I wish it were something like a tumor, then it could maybe have been removed by now and not still have these. Welcome to the worst family to be in, sorry you are here, but there is a ton of info and help collected here. Talk to your neuro, there are a few things that may work, ketamine as mentioned, dhe infusions, prednisone taper to verapamil, rc seeds (their legality seems all over the place)