i have chronic cluster headaches. as in there is no remission or off period.  i'm 22 years old and only recently discovered they were cluster headaches.  my mom just always called them migraines so thats what i called them.  i've had them for probably 15 years.  ive never seen anyone have a head ache like i do.  they are the most horrible thing and have almost ruined my life.  i saw a doctor who finally found a medicine that worked 6 months ago, indomethacin. it helps with some i still get daily headaches but its a miracle drug compared to where i was at.  do other people have this kind of pain? i feel like i'm dying and it hurts so bad please just someone tell me you know what i'm talking about. no one understands how bad it hurts someone here has to.  these things caused me to drop out of college, i'm back in now and a junior majoring in biochemistry just for the purpose of finding a cure for these headaches, thats my mission.  but it hurts soooooooo bad i just wanna rip my eye out. doctors look at you like your just trying to get pain medicine. wish they could just have one of the headaches i have. the doctors i see now tho he's cool. he gets it.  just someone say you know what i mean, ive never talked to someone who has these kinds of headaches. 

Brandon welcome to the group. Certainly most, if not everyone here understands. So with your recent diagnosis comes a whole new opportunity for education about preventive medication and abortive medication. Please review the information about oxygen (see yellow button to the left) and also share with your doctor. You can abort a CH very quickly compared to what you have been suffering: WITH NO SIDE EFFECTS. Even at school, you could keep the O2 tank in your car and excuse yourself from class to go take care of it.

There is recently published research available on this site too that may help you in your mission to find out what causes this. Others will likely jump in behind me but I just wanted to welcome you and let you know we care.

Christy

This Topic was moved here from Supporter's Corner by Mrs Deej.

bran4on wrote on Sep 30^th, 2009 at 10:05pm:

i saw a doctor who finally found a medicine that worked 6 months ago, indomethacin. it helps with some i still get daily headaches but its a miracle drug compared to where i was at.

Quote:

ya'll are crazy narcotic pain relievers are the only ones that work well for me. i have chronic cluster headaches. given that doctor probably didn't choose the best medicines but don't knock opiates as a form of relief. it is the best relief i have taken. ive had mine for 15 years and only recently started opiates for relief but it has changed my life. i can actually function. don't knock it just because it wasn't for you

Quote:

doctors look at you like your just trying to get pain medicine.

Gosh, I might make the same mistake if I was a doctor.

I'm not quite sure I get where you're coming from re: meds.

Perhaps there is a misunderstanding about what Indomethacin is?

Marc

Bran4on    Glad you found this site... You will find help here from many who share your pain.  And Yes...we  pretty much hurt that much. But there is life with CH.

   I hope you go all the way with your schooling, and do find us all a CURE.   Who better than someone who has them.

Read all you can, and you will find the right combo of meds for you....print off some info and take to your doctor if it will help too.    Bless you....You have found the right place.   :)

those quotes someone put on here i guess for the reason of trying to make me look stupid were from a post where people were saying narcotic pain relievers don't work for cluster headaches.  they do work for me.  i take indomethacin as a preventive medication, but it doesn't stop all of the usual daily headaches.  i started takin a narcotic about the same time as the indomethacin.  before all this happened about 6 months ago, there was nothing that helped. i was taking 6-10 BC powders a day 2 at a time.  when i was 13 i had taken so much headache medicine i gave myself peptic ulsers. they busted a blood vessel over night and i almost died.  at that time i was taking aleve, which have naproxen in them, an NSAID. thats why i got my stomach ulsers because i was takin about 10-12 of those a day.  Now all i have to take is the indomethacin 3 times a day, its an NSAID too, gotta be careful, and about 1-3 painkillers a day.  1-3 painkillers is better than 10 BC's any day.  I was getting mad at those people talkin about pain medicine because it does work for CH's.  and trust me if you have had these all your life, everyday, no remission, you would be screaming at doctors for some kind of relief, all ive ever known is cluster headaches since i was  a kid.  i will take relief in whatever form i can find.

bran4on wrote on Oct 1^st, 2009 at 6:06pm:

those quotes someone put on here i guess for the reason of trying to make me look stupid were from a post where people were saying narcotic pain relievers don't work for cluster headaches.  they do work for me.  i take indomethacin as a preventive medication, but it doesn't stop all of the usual daily headaches.  i started takin a narcotic about the same time as the indomethacin.  before all this happened about 6 months ago, there was nothing that helped. i was taking 6-10 BC powders a day 2 at a time.  when i was 13 i had taken so much headache medicine i gave myself peptic ulsers. they busted a blood vessel over night and i almost died.  at that time i was taking aleve, which have naproxen in them, an NSAID. thats why i got my stomach ulsers because i was takin about 10-12 of those a day.  Now all i have to take is the indomethacin 3 times a day, its an NSAID too, gotta be careful, and about 1-3 painkillers a day.  1-3 painkillers is better than 10 BC's any day.  I was getting mad at those people talkin about pain medicine because it does work for CH's.  and trust me if you have had these all your life, everyday, no remission, you would be screaming at doctors for some kind of relief, all ive ever known is cluster headaches since i was  a kid.  i will take relief in whatever form i can find.

Nobody gives a shit if we make you mad as long as you get the right treatment.  Not one time do you mention oxygen,  It really does work.

               Potter

Brandon,

Please follow the link below to learn more about what a few of us have mentioned. While you may find narcotics effective in pain treatment, you also have already experienced side effects and you mentioned disruption in life. 

Oxygen can change that for you, and this information can be shared with your neuro.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hope it helps.

Hello Brandon and welcome...Have you looked at the cluster quiz and traits to the left hand side of your screen.These tools will give you a better understanding of cluster headaches and the symptoms.

Has your doc ever mentioned Chronic paroxysmal hemicrania to you. These are very similar to clusters and Indomethacin has had very positive results as a treatment for these headaches.

The vast majority of CH sufferers do not get any relief from NSAIDs as they take to long to work on the system an a Cluster attack can go from zero to head banging in 5 mins...

Best wishes


Lefty...!

there pure cluster headaches.  when i started that indomethacin, 3 times a day, it took 10 days before i could tell the difference, but after about a month the 4-8 headaches a day, went to like 1 or 2 on a average day, none on a good day, and sometimes there was a bad day but not very often.  I'm pretty sure there clusters. i dont take the indomethacin as an abortive medication, but daily to prevent them.  i know that its no pain to all the pain in the world in 5 minutes.  its just to prevent, and ive taken a laundry list of medicines and this one works. i am going to look into this O2 because it seems to have some back behind it.

QnHeartMM wrote on Oct 1^st, 2009 at 9:05am:

You can abort a CH very quickly compared to what you have been suffering: WITH NO SIDE EFFECTS. Even at school, you could keep the O2 tank in your car and excuse yourself from class to go take care of it.

What Christy said...You can't go wrong dude...!


Lefty...!

From the Medical Info link at the upper left:


Quote:

Indomethacin Chronic paroxysmal hemicrania is subgroup of the chronic form of cluster headache, is highly responsive to indomethacin.  It is characterized by 15 or more focal attacks of head pain daily, each lasting for about 15 minutes.  Mathew (1981) identified a transitional group of patients with the chronic form of cluster headache, who had attacks of headache of sudden onset, lasting 20 minutes, and occurring five times daily; four such patients were treated with indomethacin at 150 mg daily, with a crossover period to placebo, and clearly benefited.  Similarly, Kudrow et al (1987) described six indomethacin-responsive patients with a cyclic form of paroxysmal hemicrania.

There are a few folks on this board with PHC. Maybe they'll pipe up.

I found BC headache powders to be effective also.  They worked for about a year.  then they quit working.... I used to  "swoosh" it around in my mouth for a long time.  Aspirin also worked for about a year, then it quit working.  Ibuprofen worked for about a year, then it quit.
that's when i went to see the  doc....finally.  now 50mg of topomax and no caffeine is my ticket.  And i can feel the stupid beast want to play as of last night.....  but he aint coming out..   I f you read something that does NOT work for 10 people..... Screw it, it does not mean it wont work for you.