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Thanks so much for posting this. It truly portrays the anguish of CH.


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Incredible story by Chris HannahChris Hannah, 06 Sep 2012 15:31

I've added this page to provide an additional way to connect with fellow sufferers and supporters. I hope you find it useful! -Chris


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I just hate it when someone says I have "headaches". Too late to change though, I think. Awareness is where it's at. -Chris


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Couldn't agree more! by Chris HannahChris Hannah, 03 Nov 2011 02:12

"Nurse, he's suffering from a cluster headache."
"Okay, have him sit down. We'll get to him as soon as possible." Hours later the guy either has beat the headache or destroyed part of the waiting room.

Unfortunately, few medical personel understand the intensity of a cluster headache attack or even know what it is. And hardly anyone else in society has heard of it. Even care givers, many times, cannot fathom how severe these headaches are when told they're cluster headaches.

So, we need a name change. Just like in war, when a certain word is used to define the enemy and evoke immediate response, we cluster headache sufferers need such a word to define us. I have not discovered a plausible replacement, but I ask that others who can, tell your doctors, and maybe a change will be made.

Thanks,


Stuart Freeman

Good news LittleBirdie! I know that fish oil is excellent for your bloodstream, first I've heard of it having any effect on headaches. I've taken it for some time. Glad to hear you are doing well. -Chris


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ok, ive been pain free for two days now. i was on clusterheadaches.com and found a thread about taking fish oil and vitamin 3D for headaches. started taking 3000mg of fish oil and 10000ui of vitamin D3 a day and am on my second day pain free. it started working the next day, and over a few days the headaches got shorter and less frequent. the stuff seems to work, a lot better than i would have believed. could be coincidence? possible… i think the pepper extract only worked because i spent some time sneezing and caughing the first few times i used it. when i got used to it… no longer effective. whatever the case, feels good to be PF :)

Hello there!
As the title states I am the partner of a CH sufferer and I'm looking for any info and advice on what to try next!!

We are both 28 and have been together for ten years and live in cornwall. The headaches have been going for as long as we can remember and he has been given many different nasal sprays, tablets etc but nothing really helps! He was diagnosed last year with CH and saw a neurologist but was just given an array of tablets which did seem to help eventually. When the cluster period had ended he stopped taking them and now, like clockwork, they're back! They always seem to start to grumble in the spring when he will get the odd few and then May, BANG! gets them all the time and really bad attacks, until the autumn when they start to ease off and then stop over the winter!
He's been back to the doc and was put on verapamil but it isnt doing anything and he also has a sumatriptan aqueous nasal spray to use when he feels a headache coming on!
So he's been back and is now on omeprezole, indometacin, nasal spray and amitriptyline but nothing seems to be really stopping these attacks!! He's only just started taking the new medication so it might take a few days to take effect, I dont know?!
It's the same meds he was on last year but each year the headaches seem to get more severe and what worked before doesnt seem to have the same effect the next year!!
He's also been referred back to the neurologist but its anybodys guess when that'll be!!
Any info or advice on what to try or do would be great as he seems to be getting more and more attacks and has just had 4 so far in 24 hrs! and this year they seem to be more severe than ever!!

Also has anybody had any luck in getting signed off work whilst the attacks are around?? Ive had health issues before and been signed off work and had no luck with benefits etc and although I do not think Dan should be driving to work and working in a builders yard, he wont go to the doc and ask for sick notes etc as he doesnt want us to be skint and have the same hassle I have had over the years trying to get benefits etc to help!!! I didnt know if anyone had had any success in getting time off and any financial help?! We have two young children, 3yr old and 7 month old, and so Dan doesnt want us to be struggling any more than we already are in this financial climate!!

Thanks in advance for any advice as I feel so helpless for him and just want to find something that might offer him some relief!!! or a direction to go in to try and find some answers!!!

Bex
xxxxxxx

Partner of sufferer! by flexibexflexibex, 15 May 2011 08:42

120mg is pretty low. Glad the melatonin is helping… anything natural that works is a plus. Good luck with the neuro.


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after the capsaicin didnt work that day, i looked up everything i could about capsaisin and cluster headaches. for those that it worked for, i saw the same thing, that it worked for a little while, maybe up to two weeks, then stopped working. on the plus side though, i am so used to the burn from my 1.5 million scoville pepper extract that i beat a hot pepper challenge, munching on habaneros. anyway, got an appointment with my neuro soon, probably gonna up my verapamil. im only at 120mg a day, and it isnt really doing much. i do find melatonin helps me sleep at night, and decreases the severity of my normal early morning hit.

Hi LittleBirdie, Sorry I was away for a couple of days. Welcome to the site. I've heard of other people trying capsaicin with varied success. Mostly with results like you've experienced recently. Check out the link on the right called "new patient guide". It covers a lot of the meds that are out there and working, both preventative and abortives. The key thing is getting with a good doctor that you trust, preferably a good headache specialist. -Chris


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i find that sex does nothing for me for a cluster headache. intense physical activity does, but in an odd way. if i take off running like a mad man down the street, the headache gets VERY intense, but then it goes away as i get to the point where i feel like im losing all sanity. i think its the adrenaline, the same thing happens when i jump(parachute). i have had the bad luck of exiting an airplane in the middle of an attack, but it went away when i hit the ground. at least i have never had sex turn into a trigger, that would really suck. hot water sets me off so i take cold showers, lysol sets me off almost instantly so i use bleach or ammonia instead. i really cant think of a substitute for sex. er, scratch that, i cant think of one that would keep my wife happy:) i get my headaches at around 3:40am and sometimes at 9:15pm, only the evening headaches really get in the way of me and wife time. im new to verapamil, so i dont know how much i still need to get used to it, but it does seem to make it difficult to get aroused. besides that, ive been trying hot sauce as well. it worked great at first, now its hit or miss, but that defenitely interferes with my sex life. my wife hates my hot pepper lip lol. i guess thats her way of saying she doesnt want to spice up our relationship?

Just got done walking the beast. It bite in my backside this time. Tried my pepper extract, didn't kill the pain. It opened upy sinus pretty good, like it had before, but no relief from the pain. Sprinted hard and almost passed out, then it went away. Not my normal time either… WTF?

I'm curious, has anyone else tried capsicum? I read somewhere that it worked for clusters, so I gave it a try. Since I didn't know where to find it in a medical preparation, I went to tiajuana flats and got their hottest food additive, made of oleoresin capsicum. At 1.5 million scovilles, it's pretty hot. Ive used it four times now to stop clusters, I squirt it into my nose, put a drop under my tounge, and on my last two hits, a drop in the affected eye. I can feel it start to work in less than a minute, and after a few minutes I'm just left with a burning pepper-face. I guess that makes me a pepperhead? I've always been one for extremes. Either way, 1.5 million scovilles in the eye hurts less than the "headache". Plus it's something I can carry in the field. A little weird I know, but at least it's legal and it doesn't cloud my head. I tried imitrex tablets once: never again. Never vomited so much in my life.

Thanks. It feels good to be able to talk to someone who actually understands what a cluster headache is. My first PA thought I was just crazy or lying. I would describe my symptoms to him and he would tell me that it's impossible. My only real support was my wife.

Welcome…. I was In the Army NG during the first G.W. Orders where canceled because of it been declared over to early…. Anyways….

Welcome many here deal with the beast, so you will be at home and you will have someone to make a comment now and then for support.

Edwin(redo)

hello! ive been looking for a forum about cluster headache sufferers since i was diagnosed three weeks ago. this one seems to be the first active one i found. i started having cluster headaches when i was 17, didnt know what they were, just delt with it. they werent too severe and they werent too frequent for me to talk to anyone about it. (im a bit of an introvert) since i spent most of my time working and i was crafty enough to hide my fights with the beast it didnt really affect me too much. i never really saw it as something that could hinder me, more of a very painful occasional nuisance. anyway, fast forward in life to a couple years ago, im now an infantryman in the 82nd. two years ago i suffered from exertional rhabdomyolisis because i PTed to hard, and from then on its been a whole new ball game. i was able to hide my attacks pretty well, since they almost always woke me up from sleep and there was nobody to see me or hear me, but what i couldnt hide was the petechiae and the conjuntival hemoraghing. when i went to work after a particularly severe hit, my squad leader freaked and rushed me to the nearest medical facility. ive always been way too stubborn for my own good, but bleeding into my skin and eyes scared the crap out of me. i didnt even know it was physicaly possible to clench that hard from pain. two years and many many exams and doctors later a neurologist finaly diagnosed me with cluster headaches. i have found capsicum to be very helpful in stopping them, im also taking verapamil but it only seems to make them less intense. maybe i need to give it more time? ive only been on the prescription for three weeks… my cycles last about two to three weeks and then i get about a week of relief, then they start again. one to three per day, often skips days in a cycle. been that way for two years now.
anyway, i look forward to sharing my experiences and learning from others. feel free to ask me anything if i missed anything important.
-Bird

We're with you, Ryno. Hope ripping up the dirt helped a bit. I can see how it would. Just zone out and focus on keeping vertical at max speed. I really hope you're doing ok.


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Hang in there Ryno! It will eventually stop…keep thinking that. Get you an icepack, an energy drink, REALLY cold water, something to help. I use really cold drinks to help…if you can let it slide down the side of your throat and across the roof of your mouth…kinda like the same place that hurts from an ice cream headache. There's a nerve cluster right there that is attached somehow to the trigeminal neve…I am no biologist, nor do I know my anatomy…I call it the ice cream headache thingy. IT helps for a few seconds and gives you something to do while in pain. Just a suggestion. Stay strong and kick that beast in the ass!

april 26 2011 . woke up with a pain above the eye and knew its time for another sesion of headaches . wasnt un bearable and was able to side track myself from it for most of the day .
april 27 2011 woke up to the pain in my eye alot more intence now and impossable to ignore . i know its only goping to progress through the day . mo more t3's from last yeas episodes so i have nothin to take the edge off . ( today is the firs of a few crappy days ) i just hope i can stop it before supper . i know ill be down and out if i cant
im scared to go through this episode alone . i got no one to stay with me through these ones . its getting hard to cope and the other 500 stresses of everyday life only make things harder . ( trying to focus on typing only seems to let it get worse . im leaning my palm into my eye socket every few seconds now . starting to ger upset and a bit of angsyity now ( i got to calm down ) its soo hard to be strong and try to deal with this all by myself and i dont want to go through any more of this ,
im gonna load up the dirt bike and drive to my pits and try to side track myself and hope its enough to make the pain submit and stop . i dont know how you guys deal with this every day . my episodes only last anywhere from 4 days to 3 weeks and ther scare the shit out of me . i cantt immagine every day for evere . wow some of you are sooo strong . i cant take it now i have to go its in my forehead now and im rocking to cope with the pain . i dont think i wanna go anywhere now , it hurts soo much and im starting to tear up and getting short of breath . i realy got to go find a way to calm down . its soo hard … . . why me ?

Good luck with that, Redo. I didn't like it because it made me kind of "slower" thinking than usual. I didn't notice right away and it kind of crept up on me. At the end of the day, it also didn't work for me, but not much else has either that has worked for others.


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