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MRUPE

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Hi all, 

Episodic CH x 18 years. Diagnosed 10 years ago. Provided multiple prescriptions in the past (anti-depressants, convulsants, anxiety, topiramate, hypertensives) without benefit. Similar difficulties of many here: sleep triggers, ER visits, work, friend and family challenges.

First trial of Zomig sub-lingual aborted a headache and then moved to intranasal with good effectiveness. It is my primary triptan.

Several years ago, learned about O2 and found neurologist willing to prescribe. Was shocked at its effectiveness and reduction in use of triptans. 

O2 has been mainstay for last several years with use of triptans at work or when O2 is unavailable. 

Last cluster period of 2018, trialed melatonin toward the end of the cycle. Cycle returned 5 weeks ago (ugh). Have continued using O2, zomig and melatonin before bed.  

Happy to meet a group of folks with similar difficulties and experiences. Hope to learn a thing or two here. 

Currently awaiting completion of psilocybin trials from Yale in hopes of an option to decrease/bust cycles and increase remission times. Fingers crossed.....

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Welcome! Are you enrolled in the study?

We have a great group here and they are happy to help. :) 

ATB!

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Hi... welcome...nice summary!

Best

Jonathan

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Appreciate the welcome everyone. 

I’ve been looking around and saw the vitamin D3   references. The resources were a bit lengthy and not made up of high quality evidence from a research methods perspective. Given the low risk I’m interested to know more. 
 

From what I’ve read it appears to be 10,000IU/daily with an addition of other assorted vitamins/minerals. 
 
am I correct in my interpretation?

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spiny,

I am not enrolled in the study. I have contacted the authors to learn more. They should be wrapping up the intervention period looking at clinical trials.gov. I figured they’d have some idea of preliminary results at this points. 

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15 minutes ago, MRUPE said:

From what I’ve read it appears to be 10,000IU/daily with an addition of other assorted vitamins/minerals. 
 
am I correct in my interpretation?

Yes, although there can be an initial loading period when the D3 amounts are much higher.  The other assorted vitamins/minerals are important.

 

17 minutes ago, MRUPE said:

The resources were a bit lengthy and not made up of high quality evidence from a research methods perspective.

You are correct. No formal control group, placebo, etc.  The anecdotal evidence from more than a hundred users is, however, extremely compelling, and what research there is is very nicely done.  

1 hour ago, MRUPE said:

Hope to learn a thing or two here. 

Maybe this file might be worth reading in that regard (or maybe not).  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

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1 hour ago, CHfather said:

Yes, although there can be an initial loading period when the D3 amounts are much higher.  The other assorted vitamins/minerals are important.

 

You are correct. No formal control group, placebo, etc.  The anecdotal evidence from more than a hundred users is, however, extremely compelling, and what research there is is very nicely done.  

 

Hi CHfather, 

Without control groups how can someone suggest the other assorted vitamins and minerals are important?  I understand there is research to suggest Vitamin D deficiency in headache conditions (migraine and cluster) but little to draw a causal link, let alone justify supplementing numerous pills? The same can be said for melatonin. Correlation to cluster headaches but little research suggesting supplementing is effective. 

I should probably put it out there; I base my knowledge on the evidence hierarchy in research (see skeptic :) ). Unfortunately for me and this condition, that limits me in what I may or may not pursue as treatments. Needless to say, its why I'm paying close attention to the trial out of Yale and the use of psilocybin.  I hate to get my hopes up, but it looks/sounds like the only promising research for this condition.  

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21 minutes ago, MRUPE said:

Hi CHfather, 

Without control groups how can someone suggest the other assorted vitamins and minerals are important?  I understand there is research to suggest Vitamin D deficiency in headache conditions (migraine and cluster) but little to draw a causal link, let alone justify supplementing numerous pills? 

G'evenin MRUPE!

Batch, who came up with the vitamin D3 regimen, is an old Vietnam era Navy fighter pilot, and a fellow clusterhead with a chemistry degree!!  You're correct in that there are no double blind trials, however, Batch has been collecting survey data from the many clusterheads who've had tremendous success with the protocol since he came up with the it almost 10 years ago.....that data shows a efficacy of around 75%!

I couldn't begin to tell you how it works but I've listened to Batch speak at our yearly patient conference and I can tell you that there's a sound reason for each of the co factors and that they all work in correlation with each other.

Dallas Denny 

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1 hour ago, MRUPE said:

The same can be said for melatonin. Correlation to cluster headaches but little research suggesting supplementing is effective. 

Well, I don't know what your high standards would call for regarding melatonin, but here's report of a randomized placebo-controlled study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5012937/"In a randomized placebo-controlled trial consisting predominantly of episodic cluster headache patients (18/20 with episodic, 2/20 with chronic), melatonin 10 mg orally, when introduced early in a cluster period, i.e. 2nd to 10th day, was superior to placebo at decreasing cluster attack frequency."  Some other references in there as well.  No adverse side effects reported.  Worth trying? Up to you.

Regarding the D3 . . . more or less what Denny said.  Do it; don't do it; up to you.

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....hmmmm....that darn anecdotal evidence.....results in insufferable forums like CLUSTERBUSTERS.org....beware...

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Lol @jon019.....yuppers. that damned old anecdotal evidence saved my freakin bacon.....damn proud I didn't have to wait for completion of the Yale psilocybin trials to get on board!!

DD

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Relatively new here since July and have lurked a lot but posted little. I had my worst CH episode in over a decade from this past June until October to be followed by my first migraines. Still trying to sort out a lot of things including if the migraines are rebound headaches from sumatriptan. I'd like to get away from triptans all together if it's possible. I'm not a skeptic requiring a lot of hard evidence rather I want to feel better.

Ahem...anecdotally:

I've been doing the D3 regimen since late July and I can't prove anything but I have a pretty good sense it played a significant part in ending the vicious CH cycle I was in. At the minimum it sure helped me all around nutritionally and with my moods.

Melatonin has been helpful since my previous vicious cycle in 2007. It was recommended then by a neurologist and every time in the years since I stopped taking it anecdotally the less vicious CH returned.

Likewise with the gabapentin I was prescribed for withdrawal from benzodiazepines which seems to have helped with neuropathy with arthritis and anecdotally CH.

I dallied around and didn't go to a neurologist this last go round for several reasons and in hindsight I view it as a mistake. Anecdotally (that word again) more than a few people in real life have told me oxygen was a godsend for them. My family doctor refused to prescribe it because he's big on sending to specialists and was upset I wouldn't go to a neurologist. He also won't go over the 9 sumatriptan a month drill. The spine doctor I go to for significant osteoarthritis I have from injuries and inherited rheumatoid arthritis also calls himself a pain doctor for Medicare purposes. He is willing to up the sumatriptan and over the 9 a month I can do a GoodRx coupon which is reasonable. I think he also is willing to go to bat for the oxygen.

Speaking of arthritis I'm not so sure that the medications I take for it isn't also possibly at the root of the cycle this past summer along with benzodiazepines withdrawal. I just don't know but I've learned a lot from lurking here and my 2020 is going to be renewed focus on regaining my health. I'm willing to try emagility but I am put off by the cost. Also busting but I would have no idea how to go about obtaining anything. Both of those things leave me feeling pretty helpless on those ideas.

I'm not sure what I'm contributing to this post if anything but if there are any suggestions that might help anecdotal or otherwise I'm open to hearing about them.

 

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Posted (edited)

@Jost sharing is contributing! You may want to try LSA. Most here use RC seeds. You may want to start a new topic in a closed forum for any questions rregarding them. I am formerly chornic & pain free because of the anecdotal methods here. You probably already know this is a great community. Hang in there, we'll be here.

Edited by Brain on fire
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hi CHfather, 

that article and those referenced within are why I trialed melatonin last year and why I’m using this cycle. I’m trying to assess if/how it impacts my cycles. Fingers crossed...
 

I’m not against anecdote as we all need individualized management. I don’t like the idea of adding too many variables to management, hence my questioning of vitamin D3. I may in fact implement if melatonin isn’t showing an effectiveness. Given the numerous favorable reports, I’m interested. 

 

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Posted (edited)

Hello again @MRUPE I'd noticed in your 1st post here you weren't opposed to anecdotal evidence because you took the meds you'd been prescribed in the past. Often people aren't aware meds they are prescribed are used based on anecdotal evidence. I am a minimalist med wise & fully understand not wanting to add buckets of supplements to your daily routine. I like to know what is working for my CH rather than wondering what part of several things I might otherwise throw at it are working. I use 1 preventative (not avaiable by Rx but my doc is aware), once a month & don't need abortives anymore.

Edited by Brain on fire
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Thanks BOF,

you and I sound similar in our thinking. 

May I ask what preventive you use?

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Posted (edited)

Low (threhold dose) psilocybin. I'll start speading out my doses soon. I couldn't take hypertensives, prednisone, D3 etc & went in knowing my choices were limited. I did a lot of reading, asked a lot of questions & received an enormous amount of support.

Edited by Brain on fire
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1 hour ago, Brain on fire said:

...Often people aren't aware meds they are prescribed are used based on anecdotal evidence. I am a minimalist med wise & fully understand not wanting to add buckets of supplements to your daily routine. I like to know what is working for my CH rather than wondering what part of several things I might otherwise throw at it are working.

I'm a minimalist with meds and believe less is more and like to test things out without cluttering it up. My intention wasn't to be critical rather just pointing out that anecdotal may be all we have. That certainly was the case 50 years ago when trying to survive CH when they didn't have a name for it.

As far as non prescribed methods I've never found a doctor who didn't cringe and shrink away from discussing it. They don't even want to acknowledge marijuana much less anything else.

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I didn't see your response as critical at all. Shame about your docs. I am very fortunate to have an open minded, compassionate & well versed doc. 

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I just moved about 40 miles away from my current doctors and am going to change. When I lived in this area before the nurse practitioner I went to was much more open minded. She's narrowed her patients down to a specific category but has another one in  her office I'm going to try who I hear from sister in law is like minded. We'll see about oxygen and other topics. Perhaps I should venture onto the other boards on here.

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Agree with the minimalist approach @MRUPE!

Although I highly recommend the D3 regimen solely bbased on the "anecdotal evidence" that I've witnessed as it was being documented over the years, I don't personally use it.....when I got here 10 years ago I committed to "busting" as a treatment and didn't want to "muddy the water" by adding the D3 and then not knowing for sure which strategy worked!!  When I got here I viewed clusters as a curse but thanks to this place it's become an annoying inconvenience!

DD

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Do you have your answer now? Is it possible the D3 regimen help or harm it?

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Posted (edited)

@Jost #1 get oxygen, it will change your life :D. Sumatriptan injections work as an abortive but they are a double-egded sword. Many have increased frequency, severity, increased duration, some episodics report increased and/or longer cycles & some place the blame for changing from episodic to chronic squarely on Sumatriptan. You'll NEED oxygen to abort any slapbacks you may get while busting & to get you through the detox process. Busting is a personal choice. No pressure to use that method.

Get the oxygen regardless of your decision, it is the best abortive available & has basically no side effects!

Edited by Brain on fire
Clarification

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