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1/ 2022. CLUSTER HEAD ACHE SYNDROME (chas) What we know (under construct)


Sue mcdonald
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1. Amount of melanin in eye coloration is not suggestive of definitive color prediction pattern. (Blue, less melanin. Brown, most melanin. Hazel green grey etc... maybe even golden color? ) Doesn't predict one way or the other for chas determinate. 

2. Vitamin n mineral protocol helps many. Vit D3 is important adjunct tx. Slamming Monster drinks at begin of a chas, often helpful. Lots of Lutein can help eye aura.

3. Theres an element of colored light that seems to help or hurt. Pink lenses & yellow-green lenses help... vs blue light hurts.

4. A. Seotonin and/or glutamate pathways involved in causation and sx, and can be mediatiion path for tx.  B. Glyphosate (roundup) interaction w glycine cld be implicated as contributory mech for chas. C. Possible receptor problems with above listed mechanisms of action.

5. Histamine culprit for most w benedryl adjutant tx. Caffeine helps most chas.    5a. Mast cells - mast cell activation syndrome and/or mastocytosis. BAD triad tx for sx.  5b. Sinus involvement? 5c. WildChery Pepsi, Dr Pepper, Redbull, Monster, drinks often helpful (latter 2 have B vitamins).

6. O2 and I.V. are considered first line e.r. tx.    O2  O2.  O2.

7. Cluster head ache syndrome can be chronic, or come & go (episodic)...

8. Only dna issues that have come to light, so far? Is fetal nuchal crest abnormalities. Also some genes have been definitively i.d.'ed for migraine and areas on those genes are being studied for more refined indication of dna proof. Ita all alittle sketchy.  But nothing real solid abt DNA & chas has been discovered yet.

9. Tendency for drugs to tx chas work for awhile, then stop being effective. Chas sx themselves may change over time. This calls for flexibility in future dosing and drug selection.

10. Feet in, or sitting in hot tub w head in cold helps. Sucking ice water thru straw. Suck ion ice cubes. Breath in air conditioning in car. 

11. Often correct dx of chas may take years or even decades.

12. Microdosing. Imitrex, pain meds, hallucinogenic mushroms etc... microdosing seems counter intuitive? But if u do it? It can help.

#1 - #3 are all related to.... eyes/vision.  

There r other correlations, too. Pain!, allergic component, Horner's syndrome, occipitals(?), hypothalamus, trigeminal nerve, endocrine system - hormones (bsl n thyroid tank), low back pain/injury, many rock or walk (may be running seizures) till chas gone, ditto hit head or bang head on objects, tearing of eye, sinus congestion, runny nose, red eye,  Usually many long years of incorrect dx and odd meds to tx because med personnel don't understand.

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   hi @Sue mcdonald...do you have a current source for #1? way back in the 80's the listed characteristics in the majority of lit i could find (hard slog) for CH patients was: male, smoker, hard drinker, leonine features, orange peel skin, ocd, several more i forget.....and hazel eyes. 

...i believed it then because i happen to have hazel eyes....all the surveys since (and most clusterheads i've known thru online forums) do not support this characterization as accurate....including eye color. it never really mattered to me either way, since eye color is immutable, so would only be valuable as a tool in diagnosing (if true)...

....assuming #2 refers to vitamin D, the rest of your list looks fine...

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2 hours ago, jon019 said:

   hi @Sue mcdonald...do you have a current source for #1? 

No. I do not. I heard it here rptdly.. And, i also have hazel eyes ;)

Thanx :) i do appreciste the fact checking - its what i was looking for.

i just found another chas'er within 50 miles of me - thats 6 women. 4 of us, within 20 miles. Statistically? Thats a lotta females, 1 had chiari malformation. 

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  • Sue mcdonald changed the title to What we know (under construct)
2 hours ago, Sue mcdonald said:

i just found another chas'er within 50 miles of me - thats 6 women. 4 of us, within 20 miles. Statistically? Thats a lotta females,

...old ch.com JOKE..."wimmins don't get CH"...it's kinda funny in a morbid way, when talking about clueless medicos quotes...

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I read the pink glasses post a while back with interest. I wore them the '70's when I was working under fluorescent lights. They prescribed them for migraines!! They seemed to help with them for some patients. I did not notice any change in my head, but I loved them!! They did improve my moods.

My eyes are green. :)

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3 hours ago, devonrex said:

Blue/green eyes here.

As for 7 what do you mean come and go? Chronic do not tend to come and go, they just keep coming and coming, the rest looks about good to me. 

 

Thanx spiny for green

Thanx devonrex for blue green.   And of course, thank you, shaun for blue, jon for BIG blue  ;) .

I saw info abt blue eyes let in most light for melatonin and brown/hazel the least? Green in middle. It has to do w light coming into eyeball and reaching retinal rods & receptors - and that affects the melatonin, which affects circadian rythms. Newscaster w pink lenses? She had brown eyes. I did know one bigtime crook who had the world convinced he had green eyes. He did not. He had hazel eyes and wore contacts to make them green. He never took them out so all his records indicated green.

I, we, need critiques of what we kno abt the cluster head ache syndrome. I thank y'all.

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I cannot find any information saying that the iris lets light into the eye and onto the retina. My understanding is it is the pupil that controls the amount of light that enters the eye and the iris controls the pupil. The cornea refracts the light into the eye via the pupil and then it is focused on the  retina. Which is why Cataracts cause blurred vision. 

I know that in cycle, my pupil will not properly dilate. It stays constricted to some degree. The docs always look into your eyes with their bright light back and forth, but that is only to check how they react to the light. I walked over and faced corner in the exam room and had my Neuro look at my eyes there to convince him that I do indeed get Horners with my CH. My CH pupil will not dilate in the dark when I am in cycle. Now that pupil is permanently constricted to a tiny degree. I had fought so hard to lift that eyelid, that he thought I was full of it when I told him that I did have Horners. 

Now blue eyes contain LESS Melatonin that brown or hazel eyes, that is fact. The highest levels of Melatonin cause brown eyes. The less Melatonin in the iris, the lighter the iris. Ergo, blue comes into play. And your DNA determines your eye color.

I am all up for new facts, but I don't think that I am wrong on this bit. 

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I have LITTLE, beady eyes officially classified as blue, but what I would describe as something more like grey/blue - they never were close to being in the Bradley Cooper / Paul Newman class, which come to think of it must explain why Hollywood agents have failed to pursue me all these years.

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1 hour ago, spiny said:

I cannot find any information saying that the iris lets light into the eye and onto the retina. My understanding is it is the pupil that controls the amount of light that enters the eye and the iris controls the pupil. The cornea refracts the light into the eye via the pupil and then it is focused on the  retina. Which is why Cataracts cause blurred vision. 

I know that in cycle, my pupil will not properly dilate. It stays constricted to some degree. The docs always look into your eyes with their bright light back and forth, but that is only to check how they react to the light. I walked over and faced corner in the exam room and had my Neuro look at my eyes there to convince him that I do indeed get Horners with my CH. My CH pupil will not dilate in the dark when I am in cycle. Now that pupil is permanently constricted to a tiny degree. I had fought so hard to lift that eyelid, that he thought I was full of it when I told him that I did have Horners. 

Now blue eyes contain LESS Melatonin that brown or hazel eyes, that is fact. The highest levels of Melatonin cause brown eyes. The less Melatonin in the iris, the lighter the iris. Ergo, blue comes into play. And your DNA determines your eye color.

I am all up for new facts, but I don't think that I am wrong on this bit. 

You guys stay on me w this. The way to make sure u understand something? Is to teach it. Thats when n where u find out ur mistakes in thinking. I am amzed abt the permanence in pupil constriction, spiny. Thats... extreme!  But excellent info. How many out there have this? And docs dont kno? Yesterday, they brot a specialist in w my nurse (told me she was interning and learning, a student still). She (finally!!!! Soneone!!!!) Understood my hypothyroidism caused such severe bld sugar level falls? My body'd shoot out adrenaline when i was sleeping to wake me as last ditch attempt so i wldnt die when asleep and bsl's ttanked.  It was interpreted as nightmares, repressed psych trauma - NOT.  Even w t4 and then on armour? Id awaken as i was up clawing my way thru the wall... elist? Someone said get n take smallest t3(thy) pill at nite before slp? I took 1/2 and slept like a baby. Slowly incorporated it into a.m. meds. Better :) that soecialist? Damn!! She also understood and explained chas to the whole f* medical group there! I hit the jackpot. Its so depressing when ur med teams like cement - u r crazy and lying abt crazy migraines. Went for my bld draw? And tran into a nurse w chas?  She cried on my shoulder abt her chas, and how even her husband thot she was lying abt it   :(   i referred her here.  She said shed had one 3 days running - i explained shadows to her.... even her husband!  Talk abt betrayals... bad enuff ur doc gets u arrested - but family is just sad ppl to not have compassion...

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Not sure exactly what you’re looking for, Sue’, but I assume it’s some kind of confirmed information (“What we know”) as opposed to just ”what we think.”  There have been two major large interview-based studies of people with CH: Todd Rozen’s in 2008 and one by Larry Schor and others around 2018.  The first two articles here are from Schor’s work. The second two are recent studies that seem applicable to your thinking. The last three are related to Rozen’s work.

https://headachejournal.onlinelibrary.wiley.com/doi/full/10.1111/head.14237  [epidemiology, 2021]

https://pubmed.ncbi.nlm.nih.gov/33337540/ (pain, 2021)

https://journals.sagepub.com/doi/full/10.1177/03331024211018138   [diagnosis, 2021]

https://www.nature.com/articles/s41598-020-59366-9  [effects, 2020]

Rozen’s big study (2008): https://pubmed.ncbi.nlm.nih.gov/22077141/    (“Eye color: the predominant eye color in cluster headache patients is brown and blue, not hazel as suggested in previous descriptions. ")

Spin-offs from Rozen’s big study  

Women: https://jnnp.bmj.com/content/70/5/613

Tobacco: https://pubmed.ncbi.nlm.nih.gov/29536529/

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6 hours ago, spiny said:

I cannot find any information saying that the iris lets light into the eye and onto the retina. My understanding is it is the pupil that controls the amount of light that enters the eye and the iris controls the pupil. The cornea refracts the light into the eye via the pupil and then it is focused on the  retina. Which is why Cataracts cause blurred vision. 

I know that in cycle, my pupil will not properly dilate. It stays constricted to some degree. The docs always look into your eyes with their bright light back and forth, but that is only to check how they react to the light. I walked over and faced corner in the exam room and had my Neuro look at my eyes there to convince him that I do indeed get Horners with my CH. My CH pupil will not dilate in the dark when I am in cycle. Now that pupil is permanently constricted to a tiny degree. I had fought so hard to lift that eyelid, that he thought I was full of it when I told him that I did have Horners. 

Now blue eyes contain LESS Melatonin that brown or hazel eyes, that is fact. The highest levels of Melatonin cause brown eyes. The less Melatonin in the iris, the lighter the iris. Ergo, blue comes into play. And your DNA determines your eye color.

I am all up for new facts, but I don't think that I am wrong on this bit. 

Full blown chronic for 6+ years, while I was technically chronic prior to 6 years, since I would have at the very least one a week, all the time. So the 'pain free' for x amount of time never fit.

I have reduced sensation around the eye, temple, cheekbone. Not numb, just muted, my right eye is in a semi permanent droop, far more in an attack, but still noticeable between, pupil on the same side is also constricted, and less reactive to light. 

Now, correct me if I am wrong, also just did a quick google, but there is a relation between melatonin and vit D absorption, so maybe not the eyes specifically but overall melatonin could have an effect on vit d absorption? Higher melatonin, more vit d blocked, greater chance of CH? So, having brown eyes would show higher melatonin?

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All of a sudden, words r so teensy i can barely read anything. Taking me forever to rwad. Not good. Sorry... if i am right? Melatonin is a hormone. Its not just a color holder, or a bix that fills up w brown stuff (or less for blue eyed ppl)  its a hormone within the body. And of course i cant find that one site that addressed melatonin. I will get back to u...

Thrres peocebtitled meatonin or cancer... that melatonin starts out as swerotonin and converts to melatonin andcreverts back to serotonin.

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Full blown chronic here too with grey/green eyes. Grey predominantly in winter, green is summer. Some say that the amount of summer light changes the colour.

Pupil on the CH side is constricted, but unlike Devonrex very light sensitive before an attack, can really be painful to look into light...especially bright white light, guess it's the blue light for me. But can look into the sun, odd.

Also half an hour before an attack become very hungry...graving for fat food...high energy stuff...guess body is anticipating on the energy drain during an attack...afterwards very thirsty.

 

 

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48 minutes ago, Cast Iron said:

Also half an hour before an attack become very hungry...graving for fat food...high energy stuff...guess body is anticipating on the energy drain during an attack...afterwards very thirsty

Strange I lose so much weight when in cycle as I don't feel like eating plus I vomit really bad if I get hit with Kipp 9 or 10s , but I am really thirsty after an attack 

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51 minutes ago, Shaun brearley said:

Strange I lose so much weight when in cycle as I don't feel like eating plus I vomit really bad if I get hit with Kipp 9 or 10s , but I am really thirsty after an attack 

Funny you should say that, CCH has kind of forced me into intermittant fasting and with far far less junk from takeout, over the last 2 years have dropped 130 pounds, while it is good, it went from about 400 to 270, the way it happened is not exactly ideal. Fluorescent light is hell for me. 8-9-10 with the eye running and mucous and pain, I tend to cough on the phlegm, spiking the head, causing dry heaves until it keeps cycling and I vomit. 

Edit: Pro tip, grinning helps suppress the gag reflex, so I look like a grinning thrashing moaning madman during the bad ones...


 

I do get the same extreme cravings just to eat, like ravenous hunger, then it is gone. Could be the body gearing up. I am sure we burn more calories during an attack. 

In any case that is my ramble

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I gurn loads just before an attack the missus notices and always will say that she knows a good 15 mins b4 I get hit.  I can't really afford to lose the weight as I'm stick thin as it is . I've never been above 154 pound . After my most recent cycle I dropped to 112 pounds.  

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6 hours ago, Cast Iron said:

... but unlike Devonrex very light sensitive before an attack,....

....Also half an hour before an attack become very hungry...graving for fat food...high energy stuff...guess body is anticipating on the energy drain during an attack...afterwards very thirsty.

 

 

I am postulating a theory here.  What happens when cha hits? 1. Endocrine system tanks. 2. Blood sugar levels tank. 3. Thyroid tanks.

4. Blood Pressure escalates fast. 6. Pain goes up fast.

For many of us? It happens at varying degrees of speed . So... u may notice the feelings of hunger or (suicidal) depression first. Thats ur thyroid signaling for help.

For me? It happens as fast as flicking on the light switch. Sometimes i get the knife sharp flickers of head-grabbing pain first. It used to just be everything all at once for me.  Its slowing waaaay down now.

The weight loss? I would wonder if u r not swinging into more hyperthyroid times... does the insomnia kind of correlate thru w the weight loss? Times u dont want to eat? R those also times where sleep is more squewed also? If u were to actually go super hard hyperthyroid? That wld indicate severe food cravings - body compensates running so hot w demand for a LOT of extra food. Fat craving? Follows same line of thot. Protein + fat = carbs (how body makes carbs. Example of ketogenic diet).

I can't explain the liquid cravings. Sometimes i want to guzzle a lot of water. Other times i don't.  Why? Dunno... part of what helped me to try "slammin" a rb or monster? Is that at times? I wld guzzle, or slam, if u will, 4 cans of wildcherrypepsi. Same amt caffeine. 

Wonder if it's the bodys way of changing pH levels??  The odd way of breathing? Leaning forward and grunting out air? IT *IS* sx of odd blood pH levels and a way to manipulate ur blood pH levels towards normal. The theory of intaking a lot of water? That'd also change ur body's  pH. So maybe blood pH enters into the equation - i wld give credence to that thought/theory. 

The body wants to maintain homeostasis and a lot of it's energy goes into keeping everything within certain acceptable limits.

Eat and drink what u r craving. Ur body is trying to tell u, to help u.

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5 hours ago, devonrex said:

#1.) Funny you should say that, CCH has kind of forced me into intermittant fasting and with far far less junk from takeout, over the last 2 years have dropped 130 pounds, while it is good, it went from about 400 to 270, the way it happened is not exactly ideal...

#2.) ..Fluorescent light is hell for me. 8-9-10 with the eye running and

#3.) mucous and pain, I tend to cough on the phlegm, spiking the head, causing dry heaves until it keeps cycling and I vomit. 

.#4.) ...I do get the same extreme cravings just to eat, like ravenous hunger, then it is gone....

1. I wonder if this is fluctuations of thyroid. I used thy t3 for 10 yrs to halt the chas dead when they'd try to start up. And cgrp works off thyroid also. Curious? - Have u tried that? 

2. Fluorescent lighting is problematic for many chas. Spiny & pink lensed glasses. Theyd give me a ha in a store. This is related, heavily, to the autoimmune fms info.

3. Mucous and pain, vomiting and choking on phlegm. This, i wld betcha dimes to dollars, is what was referenced abt ghycosphate(?) or roundup, and glycine. It sounds like IgE rxn that happens when immune cells cause atrack on abdominal area.  So. R u celiac sensitive? Do u note commonality between eating breads? McDonald's hamburger buns and attacks? Because boy- i sure did? Id eat McDonald's h buns? And on wld come that allergic IgE vomit w phlegm and u choke on it.. and it keeps coming....? I thot i just had a rxn to just mcdonalds breads. But it'll pop up for me, sometimes, w other bread carb products. I feel that itchy tingling and I'll immediately spit out and not eat it. Thats why it makes sense to me the whole benedryl topic to tx a chas and in fact the whole syndrome deal... it aint just a headache. Exposure to roundup? Walk across a nice green lawn? Let dogs run in dog park w big green area? No pricker stickers? Prolly roundup exposure... proly IgE rxns coming down the line towards u.... and ur dogs.  Esp at risk r breeds like goldens, genetically at risk just by being goldens.

#4. Extreme cravings come n go? May be - IgE rxn? Or else its thyroid falling fast and body craving energy to keep it going? Tome to pay attention to cravings. When do they come in relation to - anything. Green lawns? Fast food? Sleep? Laundry detergent? Gottabtry to suss out what its reaction to. - to save urself. See?

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On 1/15/2022 at 11:28 AM, CHfather said:

...confirmed information (“What we know”) as opposed to just ”what we think.”  There have been two major large interview-based studies of people with CH: 

Yes, ty. Confirmed info as opposed to assumptions. 

U kno....? Thats a whole lotta b.s. wordage.  And ppl get paid big $$$$$ for that?? Mmmm.

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  • Sue mcdonald changed the title to CLUSTER HEAD ACHE SYNDROME (chas) What we know (under construct)
On 1/15/2022 at 6:51 AM, spiny said:

 .... I do indeed get Horners with my CH. My CH pupil will not dilate in the dark when I am in cycle. Now that pupil is permanently constricted to a tiny degree. I had fought so hard to lift that eyelid, that he thought I was full of it when I told him that I did have Horners. 

Now blue eyes contain LESS Melatonin that brown or hazel eyes, that is fact. The highest levels of Melatonin cause brown eyes. The less Melatonin in the iris, the lighter the iris. Ergo, blue comes into play. And your DNA determines your eye color.

 

Melanin is color component. Melatonin is hormone in body and can be activated by light coming in thru eyes. Amount of melanin doesn't seem to matter re: chas. I dont think amount of light matters either.

We all went a bit sideways w terminology. 

And there have been instances - nope dont have reference, do u?- Where epigenetics played a role in inherited eye color that did not conform to strict Mendelian genetic rules.

Does anyone know of a person? I'll take one,... of golden colored eyes in combination w chas?

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  • Sue mcdonald changed the title to 1/ 2022. CLUSTER HEAD ACHE SYNDROME (chas) What we know (under construct)

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