hi, havent a clue what Im doing never been on anything like this before. Its now time I stop crying and get to know other people who are putting up with same things, and have a laugh along the way.

Just wanted to give this message a good healthy BUMP and welcome the newcomers.

Use the links, print out the various pieces of information, educate your physician if you have to, and most of all, know that you don't have to suffer this agony alone anymore.

Welcome. Although I'm sorry that ANY of us have reason to be here, I'm glad that you've found the single most informative place in the world on this hell known as cluster headaches.

My best to you, and wishes for days full of life and laughter, and nights of serene, peaceful rest.

-Frank

Hi Kalach...welcome. You have found the place with a lot of info on meds and treatments. Look around the boards here and gather as much info as you can. Oxygen (see oxygen info link at left) is a very effective abortive treatment for many of us. There are preventative meds we use as well. Print out any info you find helpful and take it to your next dr visit. Pain free wishes, nani

Has anyone tried Botox injections for relief of CH.  My wife had relief from Migraines.
Kalach

Looks like last post was ten days ago....Well, I'm new here, have been in remission for almost five years and last week the shadows began showing up.  I've had cluster since the age of 20 and am now 57.  In the mid-seventies I wanted to set up a support group in New York but none of the neurologists I talked with would ever identify to me, or share the identity of, or even act as a middleman for, any of their other patients who had cluster, in an effort to get us communicating.  There was no way to connect with anyone who had this condition.  I am glad to see that the internet and some perservering individuals have finally made this a reality, it has been needed for so long.  The misunderstanding from non-sufferers that goes with cluster is perhaps second only to the mindless pain generation in its demoralizing effect upon the sufferer.  I don't take any medications.  I use ice packs and pacing during the strongest attacks.  I used to include coffee but I stopped caffeine years ago for other reasons.  I know this regimen sounds impossible but it has worked for me for many years in shortening the duration of each attack.  Once had a Johns Hopkins man tell me the headaches wouldnt kill me but the medications would.  I've seen literally dozens of neurologists over the years but I could not overcome my revulsion to drugs to try any of the therapies they offered.  However this past week I have been saddened to see that most medical discussions on the internet are still citing the same medications which were being used ten and fifteen years ago.  There really is a lack of awareness and funding regarding this terrible affliction.  Guess it just isn't widespread enough or glamorous enough or politically useful enough for big bucks to get behind it.  I still get the "deal with it" spiel from my wife of 20 years, who herself is a diabetic.  Ironically, I have attended many seminars on her illness so that I would be more in tune with her needs and what was going on with her illness, and have noted how much improved she is mentally about it because she gets so much support and acknowledgment from her doctor and all who are around her.  Diabetes gets so much publicity, imagine what that kind of clout would do for cluster?  I think the word among specialists is that there will be a cure for diabetes in a few years.  Fantastic what sustained effort and funding can do.  Not trying to feel sorry for myself---but in my fifty-seven years I have never met a single soul, male or female, who suffered from cluster.  So forgive me if I am initially skeptical about this website.... Hope to hear from some of you soon....

Thank you, Helen, for your welcome.  I hope it's okay to address you by name here.  It does make a difference to know you can talk to others who know firsthand what we go through.  For many years I kept daily diaries and full descriptions of every attack, in the hopes of determining some pattern at work.  While there were some patterns, they didn't add up to much. 

Actually I did try 02 for awhile.  While I was still living in New York.   Probably not for long enough though, because I did not notice any difference in the attacks before vs. after.  I am glad you found something that helps you.  And I too  am sorry to have to meet anyone under these kinds of circumstances.

It's interesting to note that New York and the state where I now reside (and have for 20 years) both have the highest number of CH members.  Now what does that mean??      

i wish i could determine how to use this site.  i picked you because you were under "wellcome".  i have been jumping around the site and have picked up a few tips.  i have been a clusterhead since around 1997.  i have had four cycles of 4 to 6 weeks each, 2 to 6 clusters a day.  i consider myself lucky to be able to go 2 to 3 years with pain free.  i am also lucky that i get relief from oxygen.  i suffered through the first cycle without getting a dx from several doctors.  my optometrist saw the horner's syndrome and lead to the dx.  i learned of oxygen on the internet.  my aches last for one hour so   it is difficult to determine if oral medication help.  does this demon ever stop returning?!!

so this is home.  so be it!!  i consider the rath of the Demon a curse,for myself!! a 15yr marraige GONE!! The ability to function without  retribution from a Demon ,bent on getting me to live only in my house. GONE!! Who`s only sole purpose is to make sure that He arrises everytime i find a new Female friend, only to chase her off. And who can blame her/them, No Women  will knowingly allow herself to be the rearguard or a bystander as She watches Me, Hop and Pop with the Demon himself.
Believe it or not I`m not angry, i just see it as a form of Anti-Terrorism, to take the Beast ON,HEAD ON. For he is the Terrorist and i am the Operator,  Never Quitting,Never letting him win,ever again.
I have my Gear, my Daily pills, my OxY, and my Thermo-Nuclear Device (Imitrix-injectable) and i have 8yrs Combat Experience.
My Deadliest Weapon , MY MIND and WILL !!
But most importently, I WILL NOT FAIL !!
I will bring Democracy back to my head, and The
Terrorist, WILL FALL !!

This is the needed attitude of the suffer. I spent 3yrs in my house never leaveing, NEVER AGAIN !! Yes things are rough most of the time,I`m diagnost  as a Chronic Suffer, and by the lack of releif  i`ve gott`n , i`d say the Nurologist got that one, Right ON.
But this is my attitude ,as taught to me by a Special Friend. I`ve Won the Battles and I will WIN the WAR !!

And i sincerely Hope anyone that reads this, See`s the Humor i`m using, but also GETS THE MESSAGE.

DO NOT QUIT !! It is a Terrorist,  and YOU will Prevail !

good day everyone I hope. I have just found this wonderful site. See I am a sufferer also. I am episodic and currently waiting for my little friend to arrive. It`s been a little over a year now. I know I should be grateful for this time off but I also know what is coming.I am truly grateful for finding you all here. I like to think I will never get them again but I know the truth,the beast will return. So to all of us suffering now I say a prayer and to all those waiting like me try not to dwell to much on the beast for he will return. Try to just live ONE DAY AT A TIME.                                                                      
                                               Iggy

I feel I should say hi to the welcome wagon.
I asked a few questions about Prednisone and got lots of answers and advise, the best I found is:

1. Find a neurologist you can rely on.
2. Formulate and employ a preventive strategy.
3. Formulate and employ an abortive strategy.
4. Use what you have learned to help others. 

I would like to thank E-Double and Gator for their  links and comments, also the great DJ for creating this site.

I have a Dr. appointment this Monday and because of this site I'll be going with loads of information.

If your new to this site, in my opinion this is the best place to be if you suffer from CH, better than the Dr. office.

Great to be ruff'n it out with all of you.

I'm another newbie to the group.
I was headache free all my life - until my 39th birthday and that night I woke up with a pain that felt like someone had driven a red-hot spike into my left temple - I'm now 61 and that spike has gone from red-hot to white-hot and the longest I've gone without suffering from a cluster has been 1 week.  I should say the longest I had ever gone before was 1 week - I've now gone almost 2 weeks without a cluster (a new record for me!!!!!)  I've been scanned, doplered, wired with monitors, injected, probed, tried every medication in the books, monitored my diet, even went for the golden-needles, and my check-book emptied by the medical profession all with negative results.

Most of the clusters hit during the night but that's not always the rule - they can hit at any time and without warning.  There ain't nothing like being in rush hour traffic and having the cluster suddenly hit - find the shoulder of the road, squeeze your head and wait.

Now for the real reason I'm posting - not to whine or repeat the symptoms that everyone is experiencing but to offer up what MIGHT be a preventative -  This is the longest i've gone in 22 years without a cluster and so I'm hopeful that I've found something that just might work - and that is folic acid.  A friend recommended it and I got a daily multi-vitamin that contains folic acid - I know, it sounds too simple - but so far, so good.

To everyone, I'd like to say thanks for being here - support  and knowing we're not alone is wonderful.

Adonaset

another day without the cluster - so something is working.

no clusters and no pregancy so far lol  - thank you for the welcome.

adonaset

Sorry you're having such a hard time orso. I'm surprised that narcotics stop the pain for you. Have you been diagnosed with CH? If so and you can't find relief with CH drugs, try this...

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Read through all the threads even though some are long. Many of us have found kudzu helpful. Pay special attention to possible drug interactions.
Good luck and pain free wishes to you, nani