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Common Threads of CH Sufferers

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Interesting read:

I am 42 years old (male), 6'1 and 210 pounds (and I must say very handsome) ;).  I have had HA's since the forth grade.  I have had two concussions.  One of them was in elementary school and one was in high school (football).  Socially smoked in college, never a drug user and drink occasionally (staying away from alcohol has helped).  I have always been healthy, never had an operation, but I do have a mouth full of fillings.

Had some emotional stresses in my youth.  Can early stress effect the hypothalamus?

One thing that I have not seen anyone one else mention is being birthed with forceps.  It was a popular procedure when I was born.  My mother always thought they hurt me when I was being born.

Recently I have had luck with Les' licorice process.  I took it three times a day for three weeks (reducing the amount each week).  I have had less HA's in the past month that I can ever remember.  I am going to try energy drinks and oxygen to bust the next HA's I get.


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Good idea about trying the oxygen Rob!  :)

Although CH is theorized to be hypothalamus borne, I've seen folks report onset or dramatic worsening of CH following a head injury, so personally I'm pretty convinced that it can be a factor.

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  • 2 weeks later...
  • 2 months later...

30 yr old male  - Migraines @ 12yrs old, Chronic Head pain @ 15yrs old turned Chronic CH @ 27yrs old.

Family history of Chronic Migraine and Episodic Cluster on one side and Very Trigger based Migraines on the other side..

No injuries or surgeries prior to head pains and only one minor surgery since (a nerve ablation that did not work)

Started smoking cigs and weed in my early 20's. Drank regularly until the Chronic Cluster started at which point alcohol became a trigger although very slowly started w/ dark beers and progressed to all of it.

Otherwise never sick was more active before the Cluster but still don't just sit around.

my piece anyway

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mother of son 18 just started with them.. no drugs, smoking or alcohol ,, very active in college lives at home.  One thing I did notice with the last two is both times he ate asian food  (ie. teriyaki, ginger) and possbily banannas (high potassium ?) and strawberries before getting HA after falling asleep for 60 minutes  ?? so something he ate ?? do you all journal your food intake ? bottled water ? additives in food your eating ?  just thinking out loud

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the last two is both times he ate asian food

Well . . . in general, people don't find much correlation between food intake and the overall presence of CH, although some foods can be triggers (e.g., chocolate for some people).  And some people have said that very strict additive-free diets have put their CH into remission.  But in general, as Bob Wold often reminds us, CH has been around a lot longer than some of the things that we look to as possible causes.

HOWEVER, since your son's "CH" is so unusually sporadic, and you have these two data points, you might take a second look at that "Asian food."  MSG (monosodium glutamate--often found in many Asian cuisines (and elsewhere, of course)) gave me severe pancreatitis. It took almost five very painful years to figure out that connection, because it was (and generally still is) unknown to doctors. So there's an off chance that his CH-like symptoms just might be caused by MSG (which is why I put the CH in quotes up there).  You have to look closely for MSG, since it's in a lot of things, but maybe that would be worthwhile.  A lot of college kids eat a lot of ramen noodles (cup o' noodles-type stuff), and that is laced with MSG, and so are some pizza toppings (the sauce and things like pepperoni and Italian sausage).  In my case, for many years I had minor gut pain after eating MSG (as I later figured out) in things like ramen noodles and Roundtable pizza sauce, and then one day I guess I just had had too much and the pancreas couldn't take it any more. So it was kind of a cumulative thing and then it became full-blown.

If your son had more "typical" CH I wouldn't be suggesting this, but in his unusual case it might be, as I say, worth looking into.  MSG is a known cause of very severe, even excruciating headaches, and some specialists say it's a leading cause of migraines. Here's just one article about that: http://www.cbn.com/CBNnews/107774.aspx

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  • 2 months later...

Concussion at age 21. Out for 20-30 minutes. No medical care after. Clusters started exactly 3 months later. Ran for 5 years. Then, in remission for about 15 years. Now, can't get rid of them. They have their own mind and their own time.

Seven years ago, I started visiting the mountains, 3000' elevation. Clusters came back. Went toxic on Carbarzamine (SP?). Switched to Verap. for two years. Caused loss of two teeth. Nasty $hit. Then came Diltiazam and then back to Verap.

Now, off all prescription meds for CH's. I still got them when I changed altitude, ie: returned up the mountain where I now live or a low pressure front moved in. Was prescribed Demerol for the pain and told O2 was too expensive for treatment! Needless to say, did not help. Going off Verap was tough, but it seemed to do as much harm as good. BP way to low and doc wanted to up the dose.

Just emerging from a cycle that started the first of Sept. That was when I went from Diltiazam (SP) back to Verap. Neither stopped the cycle, so why take the stuff?


doing better :)

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I am 40 yrs old now, started when I was 21, didnt drink, smoke, or do drugs. No head truama but I was born on an army base and they did use forceps.

I have hazel eyes and my Moms dad is thought to have had these as well. My mother is fine, no headaches or migrains, but I do hear stories that my grandpa used to roll around on the floor beating his head in.

I am 5'10" 175 lb. Have always had bad allergies and used to get shots in fact.

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hi all, ive been away for a while and never really posted much but the beast is back and this site helps me so much during the hard times :(

I come on here and feel slightly ashamed, I seem to have it the least bad amongst everyone but it is still terrible, so i actually look up to and admire how strong each and every CH sufferer here is.  you guys are amazing.

I am 23 years old, the CH came into play big time when I was 21.  I could remember short periods of time where I would get headaches daily, right on schedule, for about a week and then they would go away.  coincidentally these periods of time are when i had decided to "quit" smoking pot for whatever reason (the reason being, actually, that I'm a total addict :P  sounds silly i know, but i NEED the stuff, and it bothers me) but yeah, i always wrote them off as withdrawal headaches or something.  but one night, i was up late, it was too hot cause my girlfriend at the time had turned the heat wayy up and added too many blankets so i tossed and turned until 4 in teh morning and then got up to smoke a big joint and read some comics on teh computer.  about a hour in, i was feeling unusually stoned, much more than i was used to, and i was used to it, believe me.  so i ended up having a grand mal seizure right then and there, my gf woke up and saw me stiff as a board in the computer chair sliding backwards, making terrible noises, not breathing for what she estimated was 45 seconds

its not the first seizure i have had, i had one when i was 14 and smoking pot for the second time (out of tinfoil, bad boy) and then again while coming down from a recreational mushroom trip, we had gone out to a diner and had a big meal and i just seized at the end, out of nowhere, but it felt really good...  it was the mushrooms, but im sure it was damaging to my head.   

ok back to the most recent seizure, i wrote it off as just getting very high and my brain couldnt handle it.  but to my despair, every time i smoked pot ( a then daily, almost hourly activity) or drank ( a once a month thing for me then, not at ALL now) i got a headache! 

So I'm not sure if a seizure counts as head trauma, but if that wasnt what sent me over the edge to being an episodic sufferer, it may have been when i ski'd into a tree when i was 14, had a helmet on, hard to describe the impact, but it was knees first, which blew my hip out of the socket and cracked it in half, then my face and forhead, basically the EXACT spot i get the headaches now, right behind and above the eye..  weird stuff

so i suffered through the first cycle, quitting all substances and bad foods, saw a homeopathic doctor and got some supplements from my chiropractor (nutrispec test, anyone?) and it seemed to balance out the frequency of the CH.  i shadowed constantly at about a kip 2, and the headaches came every 5 days or so.  very strange first cycle.

second cycle was worse, headaches daily, sometimes twice, and i suffered for two months til i was able to bust with mushies.  it took multiple busts, but was PF after the third week/third bust. 

now fast forward a year later, I had to move back home with my dad and lo and behold, the change of scenery and location gave the beast the opening it needed. but now i only get a headache nightly after falling asleep, shadow all day, and plan on busting tomorrow...  the problem with this cycle is the CH left unchecked will last for over 3 hours, whereas previous headaches would last 45 mins - 1:15.  I am blessed with a nice hospital that lent me a tank of oxygen til my insurance works out a good one for me, its 8L/m but it actually works.  well, not last night, had to drive to the ER and sit on some 15L/m for 45 mins til i felt ok again.

sorry this is so long, but i figured it would be the best place to put it.  again you guys are all my ultimate champions, lets keep up the good fight... i wouldnt wish this on my worst enemies, you guys are so strong. any update on BOL-148?

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Hey Veg,

Sorry to hear the beast has returned, but thanks for the update.

the CH left unchecked will last for over 3 hours, whereas previous headaches would last 45 mins - 1:15.

Yeah I'm afraid zee beast is known to morph like that - the same thing happened with mine.  :P


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also, on CH being hereditary.. my dad used to rub his head on the rug as a kid because of, he says, migraines.  not really CH symptoms, based on what i tell him when i have a headache.  but HIS mom used to get the pain behind the eye, and eventually black out.  then one day it stopped!  probably not CH.  but HA  pollutin mah genes

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Veg, I know both Ricardo and I had a history of seizures. I haven't had one in over 10 years at this point.

Seizures do REALLY weird stuff to our heads. http://www.scribd.com/doc/14732155/Partial-epilepsy-with-ecstatic-seizures as this article will tell you.

I had some where I laughed like crazy. I've even read of people having an orgasm during a seizure.

Hope busting helps you!


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1st time I read this thread tonight. The only head trauma I can remember I could have had was a slapshot in the face when I was 14 while goaltending (ice) hockey practice. I was unconscious for IDK, ten seconds? Cheap goalie masks back then. The only thing treated was my split lip (3 stitches). Concussion wasn't checked (concussions didn't seem to exist in hockey then, there is a new case every week in the NHL nowadays...)

But I started my CH 4 years after so I can't see a link.

My brother and my nephew have CH, my bro started at 42, episodic, my nephew at around 20, chronic but daily low dosage of verapamil gets him completely PF.

Recreational drugs from age 15, 12-15 LSD trips between 15 and 18 years old. Regular pot smoker ever since (moderate). Cigarette smoker since 15.

I scored 23 on the asperger test. I've always been a loner, and sessions with a psychologist since 2008 made me realize I have always been depressed. No energy. Lazy. My psy says it's not normal a child or teen would be lazy, no energy.

The thread on testosterone on CH.com was a revelation for me: from what I read, it would explain low energy, depression, no muscular development, difficulties learning, somehow, well so my psy says.

All clusterheads appear to me to have higher intelligence...

When I was a child (4 to 8 yrs old), I used to experience every night what I identified later as mystical episodes, when I read somewhere that children may still connect with previous lives or rather states of being prior to birth (IDK how else to say). It was so out of this world, I still remember well... Well searching on hypothalamus the other day, I fell on this mystic Web site that linked the hypo to mystical experiences, encounters, mediums...

Just throwing all this at yous. I really don't know...

At least twice, after a Kip 9-10, I swear I floated a couple minutes above my body and saw myself lying down.

What do you mean exactly by seizure? My Engl-French dict isn't clear about that word.

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Ah no. Thanks bb. These would refer to seizure of a good (house, car...) by the court of justice.

Grand mal, oh, seems medical term for epilepsy.

Hmmm looks like we don't have an equivalent word. Wikipedia sends me to "convulsion'" when I switch seizure to French. Would seizure and convulsion be synonyms?

Is this...? : Non-epileptic seizures are paroxysmal events that mimic an epileptic seizure but do not involve abnormal, rhythmic discharges of cortical neurons.


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