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Dana129

Does this sound familiar

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So, in addition to my shadows, I’ve made a distinction between the shadows and a different kind of headache I’ve been getting since my full blown attacks stopped. The pain of this headache is minor however, i very get fatigued, both eyes want to close, and the pain usually is located on both sides of the forehead, but one side is worse then the other, right now, it’s on my left side which has never had a full blown cluster, which is why I think this might be an additional headache. I don’t get any aura, nausea or memory loss, but I do feel very withdrawn and distracted because of how fatigued I feel, the pain itself isn’t that bad, but it’s very frustrating when it happens, the headaches can last from an hour to all day, should I see a doc about this?

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Hi Dana,

Yes, definitely see a doc about any changes to your headaches. 

I have been diagnosed with Daily Chronic Headaches, Chronic Migraines and Chronic Cluster Headaches (all in the same diagnosis), and I used to have Ice Pick Headaches as well. Having multiple primary headache types is not uncommon at all. 

Something I get asked a lot, is how I tell the headaches a part. Often, I'm not sure what I'm having until it's gone, or I'm well into it. But generally here are my indicators, which might help you identify yours.

Headache:

  • Can be anywhere on the head, one sided or bilateral. 
  • Just a dull pain, or sometimes sharp.
  • Treated with Paracetamol (Anadin)
  • Often the result of getting to hungry or thirsty, sometimes a drink will make it go away.
  • Lasts 30 minutes to all day

Migraine:

  • Almost always in the forehead or eyes.
  • Usually bilateral
  • Very sensitive to light, noise, smell, movement (even moving my eyes is very painful), touch, temperature, weather, etc.
  • Very emotional, often tired
  • Just want to crawl into bed in a blacked out room
  • Lasts 1-2 hours up to 7 days
  • First thing I take to abort is Anadin + a triptan (zomiltriptan or eletriptan). If that fails, then Codeine, if that fails by day 3, I down 9-12 shots of vodka. 
  • Stress is number 1 trigger, but also: bright lights, strong smells, getting to hungry or thirsty, over exerting myself, or just being me. 

Cluster:

  • Always one sided, nearly always in the eye, behind or above it. Sometimes it will start in other parts of the head and move to the eye.
  • Sometimes starts as a headache, then feels like a migraine, then turns into a cluster.
  • I can have it on either side of my head, and have had 2 at the same time on each side of my head. Really not fun.
  • Can have a cluster on top of a headache or on top of a migraine.
  • Lasts a few minutes to 3 hours.
  • Extreme pain. 
  • Triggers include a sudden drop in stress and a shock. Once had someone pour a glass of ice water down my shirt as a joke and it triggered a cluster attack. 

If you can think about your headache in terms like that, it will help you and your doctor identify it and find the right treatment. 

Mox

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Thanks for the detailed response, Mox, out of curiosity though, when using vodka to abort your migraines, does that trigger your clusters? 

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No, it doesn't for me. Thankfully I'm a rare one where alcohol isn't a cluster trigger. I only ever use it as a last resort, but it's very effective. And as I don't get hangovers, I normally wake up the next day feeling pretty good.

Mox

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I don’t know how else to describe the experience, except as an oxymoronic “mild CH,” when I am not in the spring and fall intense ch attacks. I have ongoing (although not incessant—I get 1-3 clear days every 1-3 weeks) 0.5-2 level pain the rest of the year;  they are often, but not always, accompanied by the ancillary symptoms of running nose and tearing/drooping eye, but not always. All right side. They, as mild as they seem, leave me deeply mentally incapacitated, and often depressed, even if they stop for a while.. so that’s what I call mild chronic CH with episodic attacks much more painful..

Right now, my pain level is barely a 1, but my right nostril is running.

I was wondering if anybody else has experienced this.?

Edited by Into Light
Misspelling

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22 hours ago, Chronic2017 said:

Moxie, have you ever tried the vodka for aborting a cluster?

No, I've not tried vodka after an abort. An interesting idea though.

I'm working my way through about a dozen shots at the moment. Day 3 of a migraine that wont' go any other way.

Mox

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2 hours ago, Into Light said:

I don’t know how else to describe the experience, except as an oxymoronic “mild CH,” when I am not in the spring and fall intense ch attacks. I have ongoing (although not incessant—I get 1-3 clear days every 1-3 weeks) 0.5-2 level pain the rest of the year;  they are often, but not always, accompanied by the ancillary symptoms of running nose and tearing/drooping eye, but not always. All right side. They, as mild as they seem, leave me deeply mentally incapacitated, and often depressed, even if they stop for a while.. so that’s what I call mild chronic CH with episodic attacks much more painful..

Right now, my pain level is barely a 1, but my right nostril is running.

I was wondering if anybody else has experienced this.?

That’s what we call “shadows” lingering headaches that are either painless or mild, can happen weeks or months prior to an actual cycle, or in between full blown cluster headaches, or after cycles, I’m lucky enough to have these shadows almost all year, used to be just 10 weeks after a cycle, but it’s getting progressively longer, 16 weeks now, it’s pretty common, shadows at times feel like a totally different illness on their own sometimes. I’m sure that whatever treatment you try suggested on here whether that be the d3 regimen or some “alternative treatments” wink wink you can find on the theory and implementation it would help with your shadows if the treatment works for your full blown headaches 

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1 hour ago, Dana129 said:

That’s what we call “shadows” lingering headaches that are either painless or mild, can happen weeks or months prior to an actual cycle, or in between full blown cluster headaches, or after cycles, I’m lucky enough to have these shadows almost all year, used to be just 10 weeks after a cycle, but it’s getting progressively longer, 16 weeks now, it’s pretty common, shadows at times feel like a totally different illness on their own sometimes. I’m sure that whatever treatment you try suggested on here whether that be the d3 regimen or some “alternative treatments” wink wink you can find on the theory and implementation it would help with your shadows if the treatment works for your full blown headaches 

Thank you. I was thinking that is the case.

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On 4/10/2019 at 5:30 PM, Into Light said:

Thank you. I was thinking that is the case.

I’m going alternative. Now the World Trade Center Health Fund is trying to “unapprove my oxygen. 

 

On 3/31/2019 at 12:37 AM, Batch said:

Hey Freud,

Fair comments about my post to JH.  Too much bravado and not enough factual data...  I've fixed that with an edit.  Take a look and let me know if it passes muster.

Regarding the online survey data, I've kept my reporting of that efficacy data as objective as humanly possible.  I'll be happy to show you the survey database this coming September at the Clusterbuster Conference in Dallas, TX.  Credibility is everything when talking about efficacy of a CH intervention like Vitamin D3, so I'm not about to risk that credibility by making false, misleading or exaggerated claims.  I've too many neurologists, headache pain specialists, vitamin D3 experts, CHers and a growing number of migraineurs following my work.  A few neurologists have even been kind enough to provide peer reviews and feedback...  Two of these neurologists are CHers so are taking this vitamin D3 treatment protocol to prevent their CH.

For reference and for those who don't know me, I'm a 74 year old retired Navy fighter pilot with over 3000 hours flying Navy fighters.  I have a dated degree in Chemistry circa '67 from the University of Washington, I've been a CHer since 1994 and diagnosed as chronic by neurologists at NIH in 2005.

I'm not a doctor so I don't diagnose, prescribe or treat CHers or migraineurs.  What I do is provide information outreach on safe and effective non-pharmaceutical CH and MH interventions (O2 and Vitamin D3).  That information is based on feedback data from thousands of CHers I've been collecting since September of 2006 on CH.com with my first posts on the benefits of oxygen therapy with hyperventilation as a CH abortive, on 10 December 2010 when I began posting about my experiences preventing CH with vitamin D3 and the cofactors as well as detailed data from the online survey of 293 CHers following the anti-inflammatory regimen CH preventative treatment protocol to prevent their CH.  This survey  went online over the Internet in January of 2012. 

When asked for suggestions or answers to CH related questions about this treatment protocol, I generally provide answers based on what many other CHers or I have found. I also suggest CHers and migraineurs see their PCP/GP or neurologist to discuss the anti-inflammatory regimen and to obtain the essential lab tests for serum 25(OH)D, calcium and PTH.

I don't sell anything, nor have I taken one cent in renumeration for any of my posts about the benefits of vitamin D3 in controlling CH and MH here at Clusterbusters, over at CH.com or on Migraine.com...  My wife will attest to that fact as she does our books.  She frequently points out that I've spent an average of $2,500 a year (out of pocket) since 2006 providing information outreach to CHers and MHers on the benefits of oxygen therapy with hyperventilation as well as the benefits of vitamin D3 and the anti-inflammatory regimen in preventing CH, MH and in promoting improved health since December of 2010.  I even spent two weeks in early 2018 posting in Facebook CHer and Migraineur groups.  I got booted off Facebook after a couple posts on the effectiveness of the anti-inflammatory regimen in preventing migraines.  It appears Facebook's Big Pharma sponsors didn't like what I posted so had me blocked.

I've been paying $100/year to keep online survey running since 2012 and my annual dues as a member of the American Academy of Neurology (AAN) as a vitamin D3 and Cluster Headache researcher have cost me $260/year since 2013... My annual travel, lodging, meals and registration costs to attend conferences, meetings with neurologists and to make presentations on the effectiveness of oxygen therapy with hyperventilation and the anti-inflammatory regimen since 2009 have averaged $2,000/year. 

I've made two trips to Switzerland, two trips to Norway and one trip to Germany to attend meetings with fellow CHers at CH conferences and to meet with neurologist like Prof. Dr. med Ottar Sjaastad in Haugesund Norway, Prof. Dr. med. Arne May at his headache clinic at the University of Hamburg Eppendorf (UKE) Germany and Dr. Todd Rozen, MD, FAAN at his facilities in Wilkes-Barre PA.  If you'll check the fine print in the ICHD-III beta website, you'll find Dr. May and Dr. Rozen are in the working group responsible for trigeminal autonomic cephalalgias.

5Q9aBF3.jpg

Dr. Rozen was kind enough to stop by my poster presentation on results from the online survey of CHers taking the anti-inflammatory regimen at the 2014 AAN Annual meeting in Philadelphia, PA.  The reason for the Cowboy getup is simple... I grew up on a horse and during my poster presentation, I didn't want anyone thinking I was a neurologist.

What most people don't know is I've been quietly going down the rabbit hole in search of answers that will help me define a more detailed pathogenesis of CH and MH as well as determine how and why vitamin D3 and its conutrients/cofactors are so effective in preventing CH and MH.  I track all vitamin D3 RCTs as well as cluster headache and migraine RCTs on clinicaltrials.gov and weekly editions of the AAN journal Neurology. 

This research has taken me into the realm of molecular biology and gene mapping.  There are quite a few neurologists doing this kind of research using anti-CGRP monoclonal antibodies as CH and MH prophylaxis, but none using vitamin D3 as a CH or MH prophylaxis.  I'm a member of PLOS - a nonprofit publisher innovator and advocacy organization, the Cureous journal of medical research, and Researchgate where leading edge studies and scientific papers like this are published.  That said, there are a growing number of physicians now trained in the Coimbra vitamin D3 protocol for preventing multiple sclerosis.  Dr. Coimbra has treated over 2000 of his multiple sclerosis patients with his vitamin D3 protocol and his patients have a 95% complete remission rate.

So why am I doing all this?  It's clearly not for the money...  It's also not an ego trip seeking credit for the many findings made public about the safety and efficacy of oxygen therapy with hyperventilation as a CH abortive or the anti-inflammatory regimen as a safe and effective CH prophylaxis...  That credit goes to the thousands of CHers who took the leap of faith to try these two CH interventions then took the time to provide their feedback. That feedback is what motivates me to keep doing this as I know the terrible disabling pain of our disorder and that the good news is it doesn't need to be that way.

By the way, I'm a strong supporter of CHers using psilocybin or seeds as a safe and effective CH prophylaxis.  The data I've collected to date from CHers here at Clusterbusters indicate the vitamin D3 protocol and psilocybin treatments are not mutually exclusive.  Although the data is largely anecdotal due to small numbers, It appears these two CH prophylactic treatments have a synergistic effect when taken together.

Take care,

V/R, Batch

 

 

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