Hello to all on the site.
First of my name is Paul from the uk, and have been suffering with ch for about 8 years now and always had this sence that i was all alone going through this 3 or 4 times a day ritual of going thru hell and although no way glad others go thru what i go thru am slightly comforted by knowledge that there are people who can relate to my problem.
  After about a year of remission there again back with a vengence with the last fortnight sleep disturbed twice a night with this beast and one in the early evening.
Im totally at a real low ebb right now especially reading stories of 20-40 year sufferers.
Im not to sure what i expect to happen thru posting this but i guess i just needed to tell someone who will understand, thanks for reading

Hey Paul,

Keep reading, and I think you may be encouraged - a good number of us long time sufferers have found ways  to quash most (and for some of us luckier ones, pretty much all) of our CH attacks.

It sounds like you may be suffering un-relieved attacks and of course that is the ultimate nightmare. Starting a new topic in the Getting to Know ya forum, and posting more of your CH treatment details would be a good next step.

I predict that armed with a lot of research here, along with asking any questions, you will join the ranks of the successful beast fighters. 

Hi everyone!
I had been suffering from cluster headaches, (not knowing that the headaches were actually called cluster headaches,) for 10 years before I finally got a diagnosis and a miracle treatment.

This could be one of the worst pain that any individual could ever suffer and I truly sympathize with all cluster sufferers as I would not wish this pain on even the worst of my enemies.

I truly hope that each and every one of you finds relief from your brain pain and I am here to answer any questions hat any of you may have.

mister.

Hi to everyone! I am actually an oldy, but a newbie once again. I wasnt on the site for many years because, well its a long story. I  have had cluster headaches since 2004. Been on many many medications. I have had other diagnosis that go  along with the clusters. Right now i am here to look for any new ch medications or tricks since they are back in full force. There were many years I had them under control with lithium and lamictal and long acting opiods. I am looking for new information before I go to my new neuro next week. I live outside the atlanta, ga area. anyone feel free to pm me on any good docs.The one im going to i dont know much about.I have seen many other neuros who were supposed to be at the top of their
game, they helped some but in the end he wanted us to go our seperate ways.Any positive feedback is always welcomed!

Thanks Joe. I started a prednisone pack yesterday and this morning I woke up feeling 90% better. The constant shadows and stabbing pain has already started to diminish. I have used o2 in the past. It may be time to get another tank. I will be reading through the site for any new tips.

The pred pack helped through the week then they came back a few days after it ended. I went to a new neuro mainly for having a seizure with no known cause and was going to see if he would work with my pain management dr for some preventative meds. I told him that in the past I had seen this neuro that specializes in headache treatment. His name is Dr. leslie kelman. After a year with him and little help Dr Kelman told me to go to a psych doc. So when i told the new neuro that I use to see him he said "if Dr. Kelman couldn't help you neither can I" . Sucks, but I did find a neuropsychiatrist who also treats chronic pain. He started me back on Lithium, Lamictal, Cymbalta, Sumavel (is that right its the new imitrex with naproxen injections) and the duragesic patch.
Joe- aren't you on Lithium? and how much works for you. I have been up to 900mgs in the past.

Thanks! I will look into that.

Hi clusterhead sufferers and carers,  I am a 46yr old UK sufferer and have had this since the mid 90's but only diagnosed last year (didnt know of 'cluster headaches') My very first attack , after enduring a lumbar puncture, was mis-diagnosed as a viral infection mimicking meningitus so later attacks i'd just try as hard as it was just to 'put-up' with the pain and take painkillers with little if no effect and wait for them to disappear. Another cycle is on its way and i'm starting to feel the 'phantom-menace' as its that time of year that i start to suffer. I now take injections which eleviates the pain but i wish there were a cure.. Not looking forward to the next 6-7 weeks of pure torture. I cant believe that there are some of us that suffer this chronically how do you cope?!!!

Welcome to the board, yeah, oxygen will become your new best friend. It has all but eliminated my dependence on the imtrex shots.

Also, look into preventative medications, a med you take daily while in cycle, to reduce the number and intensity of your attacks. I use lithium, verapamil and topomax are also popular prevents.

Glad you found us, you have much reading to do to get yourself educated on how to beat the beast. We haven't found a cure yet, but with  a little effort, it's manageable.

Joe

You guys have a Doctor Matharu, in London, who is one of the trailblazers in treating CH. He spoke at our conference in Atlanta this year, a great man!

Check out   OUCH UK     Will help you a little with specifics for getting 02 etc. on your side of the pond!

Joe

Welcome to the board! 2 suggestions. First, and most important, read the oxygen info tab on the left. Used correctly most can quickly abort CH with no other meds. Has almost eliminated imitrex injections for me. Do read the link as if you don't use it correctly it's worthless!

The second is to look into some of the prevent meds we've been seeing success with on the board. This is a med you take daily to reduce the number and intensity of your hits. I use Lithgium at 1200 mg a day, blocks 60-70% of my hits. Verapamil is a very common prevent as is topomax.

Thanks for doing the leg work for your partner, we're damned fond of our supporters around here!

Joe

Ok well it has finally come to this,hanging out on a website with other poor bastards who feel like me!(just kidding)So here"s my story and questions...
I am a 47 year old male who has been suffering from these mind killers off and on since i was 23.In my twenty's they lasted about 3 years(about 2 times a week) then around age 37 they returned(almost everyday) for about 9 months.Now they have returned about 2 months ago,they are far more painful(starts in right eye then temple,jaw,head and then into the base of my neck) and last longer and happen more then ever some times 2 a day and lasting from 1/2 an hour to 5 hours.I am currently on Midrin which doesn't help,when they happen i will take one every hour and 5 to 7 extra strength Tylenol,although no relief i guess it is better then just wishing for death and freaking the hell out of my 11 year old son.In the past i have tried oxygen(a little relief),cafergot(no relief),water therapy(no relief),stadol(some relief).*Question #1* What helps you?
When these were happening in my 30's i was also going through some bad back problems because of a bad car wreck(since then,5 spacers and a 7 inch cage)has for the most part solved the back problems).I was on 6 10mg percocets(breakthrough pain) and 2 40mg oxycontin,i would never take any extra meds when the headaches happened,mainly because i needed them for day to day relief from the back pain.*Question #2*Has anybody gotten relief from narcotics? I ask this because with a little complaining i could easily get them again because of the past back problems.There was one time(after suffering 3 hours into a ch)after probably 10 tylenol and 4 sniffs of stadol i figured i had nothing to lose.I had 3 percocets and 1 oxycotin left till the next day when i could get them refilled.Knowing i would be alright the next day with 1 percocet left,i chewed up the rest,i remember getting a little relief and falling to sleep for an hour when i awoke the pain lasted for another 2 hours!Last but not least,i don't drink alcohol(any more)little to no caffeine,i do wear glasses to read and eat the normal type of food most people eat*Question #3*anybody here ever try the diet that is modeled to your blood type(i here it could help with ch)?
Here is the weird thing,i do smoke cigarettes and i have noticed a increased desire to smoke when under attack,i can't because i am to busy holding on for dear life till the mind killer has stopped.Anybody else who smokes ever experience this feeling?

Any and all help will be greatly appreciated!
-Mark