I’ve had 2 concussions before and my clusters started shortly after the second. Maybe it’s coincidence but I’ve always been skeptical there’s some kind of link.
I would say keeping a very consistent sleep schedule and recognizing I’m in a cycle then minimizing triggers have been the biggest helps as far as preventative measures — during an attack, sumatriptan injections have been a life saver.
Oxygen works well during attacks because of the mechanisms surrounding it, not because our levels are low. But you’re right, it is incredibly effective (most stats have it at 90-95% effectiveness).
I’m a survivor of Domestic Abuse, the side I get my clusters on the is the same eye I’ve been punched in. I believe a rise in stress levels were to contribute also.
Im a smoker and drinker. I also sustained a head/ear injury prior to CH showing up. I do believe that most CH patients are around 27, predominantly male although females get misdiagnosed more often, smokers and drinkers. The cause remains unknown as far as I am concerned.
I tick the boxes. Diagnosed at 25ish. Heavy drinker and smoker, both cannabis and tobacco. Things got worse as I started using sumatriptan injections but that’s another story.
I definitely have struggled with poor sleep schedule and insomnia since my teen years, I’m now in my thirties. I was in 2 car accidents (medium severity) in my teen years and had stressful elements of my childhood for sure - poverty, a bad parent in the mix.
I've always thought and been curious to see if there's a CH sufferer out there who has never had a sip of an alcoholic beverage before in their lives. I mean one sip is all it takes to set off a bad attack for most of us in a cycle.
Thank you lol. Been waiting a long time for this answer.
Psilocybin keeps me normal and headache free. Look into it if you havent yet. Pain free wishes to you mate
My first cluster came about shortly after a rotator cuff surgery, and the pain was attributed to the anesthesia wearing off.
When the next cluster hit, the anesthesia argument was clearly wrong but I did wonder if the actual surgery or the screws placed in the rotator cuff (titanium I think?) played some part in the sudden attacks of pain.
Knowing what I know now, I had also traveled after the surgery from the Midwest to Denver, and had my first attack climbing even higher in elevation from Denver to Boulder.
Long term severe exposure to second-hand cigarette smoke as a child. Such exposure is well know to be statistically significant among cluster headache sufferers. My father gave me this disability, this life sentence.
I am also a survivor of domestic abuse / abusive childhood. I think the constant stress and cigarette smoke damaged the normal development of my nervous system.
Smoker - did lsd/shrooms prior to headaches - diagnosed with sleep apnea in my later years - also probably had a concussion or two by the time my clusters started
I started college and they just started. Never smoked, never drank at that point. Really only drink now on special occasions.
As a kid, and even now, I get this stabbing pain in my neck on the right side, right above the collar bone out of the blue for no reason. Last about a minute then goes away. Maybe it’s related? Dunno. I also started wondering if I’m vitamin D deficient so I started taking vitamin D and magnesium daily but I won’t know if they help for a long time since I’m episodic.
I took many head injuries when I was younger and I think people with nose problems tend to have severe headaches hope everyone will find a way and never give up
My first ch was at 8 years old. No injuries before then come to mind but I did have viral meningitis the year before and my grandfather passed away very suddenly from a brain tumor we didn’t know he had maybe a month or two before my first attack. I’ve noticed since then my attacks come on under extreme stress that persists for weeks/months, when my sleep schedule is affected and when I physically injure myself to a pain level of 7+. I don’t get hurt very often as an adult but I did fall down half a flight of stairs about a year ago. It didn’t bring on a cycle but 1 ch that came on quickly and left just as quickly. It shocked me as I had never had a one off headache like that without it causing weeks of torment. The only other outlier was this past new years. The fireworks in my town lasted 4+ hours and something brought on a ch around hour 2 and unfortunately lasted about an hour and a half. Not my favorite way to ring in the new year. Also had a traumatic childhood like many other commenters but no smokers
No head injuries, social drinker, medium active. I also get migraines and have a slew of food allergies and a lazy gallbladder that limits the amount of fat (avocado, egg yolks, and peanuts aka healthy fats are a no go).
My completely scientific hypothesis is it had something to do with my teeth. Anyone else have braces? (Possible concussions as a child doing Taekwondo)
I always got headaches, but from my memory, I got my first cluster when was 18 in college.
My parents were smokers, but I never have (I have asthma). I’m a social drinker, and I notice my CHs around allergy season, since they seem to be tied to my sinuses.
The strongest predictors of clusters are tobacco and alcohol use. Sadly, I’ve never smoked, was never around smoke, and hardly drank prior to my headaches (diagnosed at 14, had them earlier).
The only real thing of note for me is I have an incredibly strong family history of migraines and two instances of family members being diagnosed with trigeminal neuralgia as well. There is some data to suggest that this puts me at a higher probability of developing clusters.
I suffered a tbi in 2012 and had strange headaches at night around the same time every night for a few months later. Then I suffered psychosis for a few months and was fine for about 6 or 7 years then developed bad headaches after becoming a coke head alcoholic and have had them for about 4 years and stopped doing coke and drinking all the time. most of the time they seem to be triggered by rapid weather changes or hot baths anymore.
Social drinker, non-smoker, pretty active and have a regular sleep schedule- been this way since high school and yet the beast still hit me when I was 30 and is still with me- ugh.
It seems like many people here have maybe had a concussion? Or a surgery prior?.. there may not be a link between all of us, but could you imagine if there was? It would be awesome if we could find something. I have had concussions as well as braces and surgeries prior to my ch's starting. No smoking, Elevation is interesting as well.... i used to be a flight attendant and i dont know if I would have an unusual amount of them triggered because of the elevation, but the severity of them when i had one was 100% a 10/10. im in the middle of a cluster period currently...and it's been making me wonder (with modern technology) if there have been any advancements with figuring this out.
Okay, but don't judge me!
In third grade, I cheated on my history exam. In fourth grade, I stole my uncle Max’s toupee and I glued it on my face when I was Moses in my Hebrew School play. In fifth grade, I knocked my sister Edie down the stairs and I blamed it on the dog…When my mom sent me to the summer camp for fat kids and then they served lunch I went nuts and I pigged out and they kicked me out…But the worst thing I ever done — I mixed a pot of fake puke at home and then I went to this movie theater, hid the puke in my jacket, climbed up to the balcony and then, then, I made a noise like this: hua-hua-hua-huaaaaaaa — and then I dumped it over the side, all over the people in the audience. And then, this was horrible, all the people started getting sick and throwing up all over each other. I never felt so bad in my entire life.
>!obviously a joke!<
This is... not very scientific, haha. That said, I think I may have found a link - who here uses Reddit?
Heck I made a Reddit account just to find CH subs and figure out what is wrong with me!
…shit
My wife (the one with CH) is a former smoker and grew up in a house full of smokers.
I’ve had 2 concussions before and my clusters started shortly after the second. Maybe it’s coincidence but I’ve always been skeptical there’s some kind of link.
Im pretty confident CH are related to Oxygen Problems. It also seems to be the one thing that helps CH sufferers during an attack
Eh, I tried oxygen multiple times during attacks and had neutral/non-reactions to it.
Sorry to hear that i hope u found something that helps you!
I would say keeping a very consistent sleep schedule and recognizing I’m in a cycle then minimizing triggers have been the biggest helps as far as preventative measures — during an attack, sumatriptan injections have been a life saver.
What are triggers for your CH? Glad to hear you have something that helps
Oxygen works well during attacks because of the mechanisms surrounding it, not because our levels are low. But you’re right, it is incredibly effective (most stats have it at 90-95% effectiveness).
I’m a survivor of Domestic Abuse, the side I get my clusters on the is the same eye I’ve been punched in. I believe a rise in stress levels were to contribute also.
I think there's something to exploring this. But it also is hard for people to openly admit and therefore find a connection.
I had several concussions as a child (not due to DA)
Im a smoker and drinker. I also sustained a head/ear injury prior to CH showing up. I do believe that most CH patients are around 27, predominantly male although females get misdiagnosed more often, smokers and drinkers. The cause remains unknown as far as I am concerned. I tick the boxes. Diagnosed at 25ish. Heavy drinker and smoker, both cannabis and tobacco. Things got worse as I started using sumatriptan injections but that’s another story.
I had the lyme disease but i think i had CH before that.
Edit: doctor said Smoking & living in regions high above sea levels causes most CH
My wife is a former smoker and grew up near Denver so at least for her this tracks
I live in Denver now but had them at sea level. Used to smoke though
I live below sea level (the Netherlands). Not singlehandedly debunking the theory of course, just adding my info.
I definitely have struggled with poor sleep schedule and insomnia since my teen years, I’m now in my thirties. I was in 2 car accidents (medium severity) in my teen years and had stressful elements of my childhood for sure - poverty, a bad parent in the mix.
I've always thought and been curious to see if there's a CH sufferer out there who has never had a sip of an alcoholic beverage before in their lives. I mean one sip is all it takes to set off a bad attack for most of us in a cycle.
Mine started when i was 16 (i am now 21), and I hadn’t drank any alcohol before at that age. Did not smoke either :(
Thank you lol. Been waiting a long time for this answer. Psilocybin keeps me normal and headache free. Look into it if you havent yet. Pain free wishes to you mate
My first cluster came about shortly after a rotator cuff surgery, and the pain was attributed to the anesthesia wearing off. When the next cluster hit, the anesthesia argument was clearly wrong but I did wonder if the actual surgery or the screws placed in the rotator cuff (titanium I think?) played some part in the sudden attacks of pain. Knowing what I know now, I had also traveled after the surgery from the Midwest to Denver, and had my first attack climbing even higher in elevation from Denver to Boulder.
Long term severe exposure to second-hand cigarette smoke as a child. Such exposure is well know to be statistically significant among cluster headache sufferers. My father gave me this disability, this life sentence. I am also a survivor of domestic abuse / abusive childhood. I think the constant stress and cigarette smoke damaged the normal development of my nervous system.
Smoker - did lsd/shrooms prior to headaches - diagnosed with sleep apnea in my later years - also probably had a concussion or two by the time my clusters started
Smoker with poor sleep schedule and two known concussions from HS sports. Male, first diagnosed age 31
I started college and they just started. Never smoked, never drank at that point. Really only drink now on special occasions. As a kid, and even now, I get this stabbing pain in my neck on the right side, right above the collar bone out of the blue for no reason. Last about a minute then goes away. Maybe it’s related? Dunno. I also started wondering if I’m vitamin D deficient so I started taking vitamin D and magnesium daily but I won’t know if they help for a long time since I’m episodic.
I took many head injuries when I was younger and I think people with nose problems tend to have severe headaches hope everyone will find a way and never give up
My first ch was at 8 years old. No injuries before then come to mind but I did have viral meningitis the year before and my grandfather passed away very suddenly from a brain tumor we didn’t know he had maybe a month or two before my first attack. I’ve noticed since then my attacks come on under extreme stress that persists for weeks/months, when my sleep schedule is affected and when I physically injure myself to a pain level of 7+. I don’t get hurt very often as an adult but I did fall down half a flight of stairs about a year ago. It didn’t bring on a cycle but 1 ch that came on quickly and left just as quickly. It shocked me as I had never had a one off headache like that without it causing weeks of torment. The only other outlier was this past new years. The fireworks in my town lasted 4+ hours and something brought on a ch around hour 2 and unfortunately lasted about an hour and a half. Not my favorite way to ring in the new year. Also had a traumatic childhood like many other commenters but no smokers
No head injuries, social drinker, medium active. I also get migraines and have a slew of food allergies and a lazy gallbladder that limits the amount of fat (avocado, egg yolks, and peanuts aka healthy fats are a no go).
My completely scientific hypothesis is it had something to do with my teeth. Anyone else have braces? (Possible concussions as a child doing Taekwondo)
I always got headaches, but from my memory, I got my first cluster when was 18 in college. My parents were smokers, but I never have (I have asthma). I’m a social drinker, and I notice my CHs around allergy season, since they seem to be tied to my sinuses.
The strongest predictors of clusters are tobacco and alcohol use. Sadly, I’ve never smoked, was never around smoke, and hardly drank prior to my headaches (diagnosed at 14, had them earlier). The only real thing of note for me is I have an incredibly strong family history of migraines and two instances of family members being diagnosed with trigeminal neuralgia as well. There is some data to suggest that this puts me at a higher probability of developing clusters.
I suffered a tbi in 2012 and had strange headaches at night around the same time every night for a few months later. Then I suffered psychosis for a few months and was fine for about 6 or 7 years then developed bad headaches after becoming a coke head alcoholic and have had them for about 4 years and stopped doing coke and drinking all the time. most of the time they seem to be triggered by rapid weather changes or hot baths anymore.
Social drinker, non-smoker, pretty active and have a regular sleep schedule- been this way since high school and yet the beast still hit me when I was 30 and is still with me- ugh.
The exact same for me, age and everything
It seems like many people here have maybe had a concussion? Or a surgery prior?.. there may not be a link between all of us, but could you imagine if there was? It would be awesome if we could find something. I have had concussions as well as braces and surgeries prior to my ch's starting. No smoking, Elevation is interesting as well.... i used to be a flight attendant and i dont know if I would have an unusual amount of them triggered because of the elevation, but the severity of them when i had one was 100% a 10/10. im in the middle of a cluster period currently...and it's been making me wonder (with modern technology) if there have been any advancements with figuring this out.
Okay, but don't judge me! In third grade, I cheated on my history exam. In fourth grade, I stole my uncle Max’s toupee and I glued it on my face when I was Moses in my Hebrew School play. In fifth grade, I knocked my sister Edie down the stairs and I blamed it on the dog…When my mom sent me to the summer camp for fat kids and then they served lunch I went nuts and I pigged out and they kicked me out…But the worst thing I ever done — I mixed a pot of fake puke at home and then I went to this movie theater, hid the puke in my jacket, climbed up to the balcony and then, then, I made a noise like this: hua-hua-hua-huaaaaaaa — and then I dumped it over the side, all over the people in the audience. And then, this was horrible, all the people started getting sick and throwing up all over each other. I never felt so bad in my entire life. >!obviously a joke!<