Hi all, Mike from Tampa here. I am 40 yo and have been headache free all my life up to last thurs where i think i was bitten by the CH bug. I returned from a 2 wk vacation (sleep schedule totally shifted) and have experienced an excruciating, debilitating headache every evening like clockwork for the past 6 nights at the same time ofnight. Ibuprofin did absolutely nothing! I was going out of my mind and feared a tumor (due to the severity of the pain never experienced before as well as the suddenness of it all). I saw my doctor today who immediately rendered CH as the culprit. He gave me Prednisone and Imitrex (nasal) and wants to see me in a week (for eval and bloodwork). So, is it pretty much a given that it's CH? Out of the blue at 40 yo? ...wow. Are there folks on here that get it once a year or so or only had it once and never again? Is there any hope this wont be a cyclical nightmare for me?

I had never had a ha in my life until I was 32 years old.  I got hit with several intense and painful 10's one night and could set my clock by them.  I had an mri done to rule out a tumor and then was diagnosed with having ch eventually after everything else was ruled out (eyes, teeth, chiropractor, allergies etc.).  I was diagnosed chronic after getting 8 hits a day for 1 year straight with no relief.  It sucked.  Sounds like you have a knowlegable dr who gave you imitrix and predesone.  I don't know if you are like me or not but I couldn't take enough imitrix to cover all my attacks.  You may want to check into oxygen.  There is a link to the left of the screen that details exactly what and how much you need and it is a cheaper and more natural way to go.  You can take it for ea of your attacks.  Predisone is good to stop the cycle but you can't take it forever.  You may want to ask your dr for lithium 900mg or verapamil up to 960mg or a combo of both drugs.  These seem to be the most effective preventatives around.  Good luck and let us know how you are getting along.

Mikeyy wrote on Jun 3^rd, 2008 at 6:24pm:

Is there any hope this wont be a cyclical nightmare for me?

There is always hope, even if you have CH.....Its called pain manegment!

Read the line below this in black!

Hi Mike,

Yes... MANY  of us started in our 30's or 40's.  You are lucky to get a dianosis in such a short time frame.  SOoooo many here waited and suffered for years w/o a proper diagnosis.


I hate to burst the bubble Mike, but no one gets just one Cluster headache.  If you read here, and especially all the links to the left of where you are reading my post...you will be prepared to fight the episode.  Notice I said episode.  It is not a death sentence.  You can and will get through this.

After you feel you have a pretty good understanding of CH...please join O.U.C.H.  (Organization for understanding Cluster headaches) Go here and read too.  It is free to join and is our most promising hope for help, research, support  and information.

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

I am chair of family services there and if you ever need to talk to someone or need more info...please contact me.  O.K.?   Linda

calientev8@sbcglobal.net

Welcome Mike but I'm sorry it has to be because of this horror. It sounds like CH from here. It can hit at just about any age and no one seems to know why. I was 29 when it began and 45 when they disappeared....yes...I know how lucky I am. Nevertheless, I had the thing for about 23 years. They were episodic and hit almost like clockwork in October and again in March or April. They lasted about 4 to 5 weeks. Like most of us it woke me up several times a night. Anyway:

You'll find some good ideas on this board. Here is one that worked for me:

                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      

i started my first ever cycle this past january 30th, (on vaca in the Keys the day after snorkeling!)and i am 50.....................stopped my meds 4 days ago, but i  seem to be feeling a "creeping up of the ------ beast".......................trying not to focus on it, and just live................................................................................................................i pray he will not be returning, tho if he does, i will be prepared..............................

Mike,

Sorry to see you here, but Welcome to Clusterville. These things can hit at any time. My "brain tumor" hit me "late" in life after a total headache free life.... Docs had a little trouble explaining CH to me (I'm not a good patient and have NO patience with illness of any kind).

But here I am years later and chronic and I now have a great empathy for anyone with CH (before CH I just thought people were "putting on" when they had a "headache" - woe is me!)

Here in Clusterville, you'll find people who understand what you're going thru and people who are going thru the same thing. Pull up a chair and talk to us. We're here 24/7 and we're here to help.

Wishing you a short cycle and a long PF time in between.

Hugs BD

Welcome, Mike! :)

I'm so sorry that you have ch, but I am glad that you found your way here - this is the best place for us clusterheads! Lots of information, lots of support and other clusterheads and supporters are here at all times.

Wishing you PF time,
Sanna

For some of us that have had a long boxing career against the "beast" it is easy to forget the first trickles of knowledge about Cluster Headache. I was "lucky" because my Dad had them, and I quickly recognized what I was experiencing, and sadly knew that once it occurred I'd get the opportunity of future bouts.

Mine didn't hit till late twenties. At 45 now, I've got more experience than I like to have.

You can live a completely normal life in between cycles, and for many of us who put a lot of effort into giving up as little to the beast as possible, a reasonably normal life when in cycle. Yes the fears are there. Some anxiety in certain situations. But, you get good at it and you, as Jonny said, manage the pain and your life in between headaches.

I do remember the sadness of contemplating a life with these things when I realized I'd gotten them however and my heart goes out to you. There are still times when I get sad about it, but then you go on.

Scott

Mikeyy wrote on Jun 3^rd, 2008 at 6:24pm:

Are there folks on here that get it once a year or so or only had it once and never again? Is there any hope this wont be a cyclical nightmare for me?

Hi Mike

As a new diagnosee (I think I may have just made that word up) you may be one of the fortunate 26% or so of assumed sufferers who only get a single bout of CH, if this report is anything to go by:


Quote:

Cephalalgia. 2000 Sep;20(7):653-7. A follow-up study of 60 patients after an assumed first period of cluster headache. Sjöstrand C, Waldenlind E, Ekbom K. Department of Neurology, Huddinge University Hospital, Sweden. During 1981-96 a series of 60 consecutive out-patients was examined in relation to an assumed first period of cluster headache (CH). On follow up in 1998 we found that six were deceased at a mean age of 56.5 years (range 45-74 years), of whom one had a definitive CH diagnosis and five had one documented headache period only. Six patients were lost to follow up because they could not be reached. In the final group for evaluation (n = 49) it was found that 13 (26.5%) patients had had one cluster period only during a mean observation time of 8.9 years. Out of 36 patients with a definitive CH diagnosis according to International Headache Society (IHS) criteria, 31 patients had episodic CH, four patients had primary chronic CH and one patient had secondary chronic CH. Of the patients with a definitive CH diagnosis, 83% on follow up had had a recurrence of a second period of CH within 3 years or continuous attacks (chronic/semichronic CH) from the onset. Evidently some patients may suffer from one cluster period only. In our patient material only 17% had a second cluster period after 3 years.

All the best with it and keep us posted.

-Lee