Hi, my name is Chet and I suffer CH.  First diagnosed in 1978(at 32) after thinking I had the worst sinus HA known to man.  Remember having a date for a swim party in 1978 and spending 40 min in the bathroom holding my head moaning and blowing my nose til I ran out of tissue.  Finding out what I had saved tissue but ruined my life, I thought.

For the next 13 years I tried every hot med they could come up with which I sure you all have been through.  Nothing worked untill 1990 or 91 when I found Imitrex.  I went with 20mg nasal because I couldn't make myself do the shot in the leg etc and the cost was high.  A year later I got on O2 and was able for the next few years fight the demon with 02.  My experience was a cluster each spring and fall but most overlaped.  It seemed with every big pressure change/front they came back.  One beer and I was in trouble (haven't had a drink since then).  Around 1995 I began to have remisions that lasted 1 to 1 1/2 years but the clusters always reappeared.

Then in 2000 (at 54 yrs old) I started to notice they were somewhat less painful with 4 or 5 real ass kickers during the cluster.  Again 1 year off, maybe 2 years and when they came back they were less and less painful and only one or two real butt busters.  I'm now 66 and HA free for the last two years.  I hate putting that down in writing as it always seems to bring them back if I think about their absence.  My doctor clames that similar to migranes clusters seem to lessen and go away at 60.  Well I'm 66 so he was wrong about 60 but I believe they eventualy die. 

That's not much good to 30 year old but I can guarantee that being able to look forward to that day is a good thing.  I was on this board 10 or 12 years ago and left because I felt talking and reading about them was doing me know good and made it too big a part of my life.  Came back today to see what had changed.  Not much has, same types of drugs being discused with mostly the same results.  I know what most of you are going through and could tell you storiies of road side meetings with the police as I paced up and down in the shade of a building they thought I was caseing for a robbery.  I sat on the side of of the expressway in Atlanta in 1991  my head spliting open my wife trying to console me and watching the trucks come by my door, trying to time my exit from the truck so I would endure the least pain when the truck hit me. 

They are a bitch but I truely believe they will at some point leave you.  So get a good doc, some O2. some Imitrex and hang in there.  Better days are coming.   

You didn't mention use of a preventive med.

Take a look at the PDF file, below.

---

Not many I didn't try.  Verapamil gave no relief but did give me joint pain, tried ergots, belladona(sp) and all the seizure drugs did no good and the side effects scared me also.  I tried cocaine, luds, pot and no help but did enjoy the luds and pot some. ;)  Back when I first came here there was a doctor from England with some link to Glaxo Welcome that was doing research on the link between the hypothlamus and CH, did anything come of that?

And one that I found very helpful Prednizone,  when mine got to the point that I was having 3 to 4 a night and getting no sleep for weeks the prednizone would stop them in their tracks, but as I withdrew from it they would start again at about the 40mg level.  Start with 60mg for 5 days then 50mg for 5days etc.  But it gave me the sleep I needed for a few days.  And I have to admit that I abused it by staying at the 60mg level for up to 2 or 3 weeks when there was some thing important I had going (hunting, fishing trip or dead line at work).

Have a look at using vitamin D3 - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

This is working well as a preventive for many with a 75%+ success rate.

That would be Doc Goadsby.  He's at San Francisco now.

Peter Goadsby and his team (author of following being one of them) discovered a revolutionary perspective on the origin of Cluster.
==========
Headache:lessons learned from functional imaging
British Medical Bulletin 2003; 65: 223-234

Arne May
Department of Neurology, University of Regensburg, Regensburg, Germany

Using PET in a larger patient series, significant activations ascribable to the acute cluster headache were observed in the ipsilateral hypothalamic grey matter when compared to the headache-free state44. This highly significant activation was not seen in cluster headache patients out of the bout when compared to the patients experiencing an acute cluster headache attack45. In contrast to migraine25, no brainstem activation was found during the acute attack compared to the resting state. This is remarkable, as migraine and cluster headache are often discussed as related disorders and identical specific compounds, such as ergotamine and sumatriptan, are currently used in the acute treatment of both types of headache46. These data suggest that while primary headaches such as migraine and cluster headache may share a common pain pathway, the trigeminovascular innervation, the underlying pathogenesis differs significantly as might be inferred from the different patterns of presentation and responses to preventative agents46.
Just as it is striking that no brainstem activation occurs in contrast to acute migraine, no hypothalamic activation was seen in experimental pain induced by capsaicin injection into the forehead47. This is important because injection of the forehead would activate first (ophthalmic) division afferents which are the trigeminal division predominantly responsible for pain activation in cluster headache. Thus two other types of first division of trigeminal nerve pain, while sharing neuro-anatomical pathways with cluster headache, do not give rise to


VASCULAR HEADACHE: ARE BLOOD VESSELS INVOLVED?

Taking these observations on acute cluster headache together with what has been observed in experimental head-pain and migraine, the data establish that migraine and CLUSTER HEADACHE, FAR FROM BEING PRIMARILY VASCULAR DISORDERS, ARE CONDITIONS WHOSE GENESIS IS TO BE FOUND IN THE CENTRAL NERVOUS SYSTEM IN PACEMAKER OR CIRCADIAN REGIONS SPECIFIC TO THE SYNDROME. If further studies confirm these findings, a better understanding will be gained of where and how acute and preventative therapy can be targeted.
===========
===========
In the years you have been away from us, a new perspective has been gaining interest. Increasingly, finding headache situations which are NOT primary headache disorders, i.e., disorders which mimic Cluster.

One of the hallmarks is that the usual Cluster meds work for a brief time, then stop being effective OR don't work at all. If you wish to discuss this potential with your doc, print out this message:

Link to: cluster-LIKE headache.
Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Thanks, by the way the archives are a neat feature, found some posts from 1999 when I was first here, remember some of the other posters after reading some.  thanks

Ugh....I hate hearing about you having CH in your 60's. May I ask how the intensity of them peaked out on you? I'm 37 and I'm hoping that it has peaked and will begin to "mellow out".....if you want to call it that. This last cycle (which was my longest) was the most painful yet. I can't imagine having another 20 years of these. They started for me about 15 years ago and got their most intense in the last 5.

My cycles are usually in 2 year intervals, but we know how unpredictable these are. Up until this point, I haven't used any preventatives, abortatives, or treatments. This past cycle has shown me that I can't do another cycle without seeing a specialist. I plan on getting O2, D3 regimine, and whatever else that will work for me. I have read so much here and am confident that I will be able to find a combination that will bring me somewhat comfort.

I just know that being beaten by these and my age.....I can't do another cycle "all natural". I feel confident enough from what I have read here to bring my case to a specialist knowing what to ask for to help me find relief. I'm scared to get on the pred so will try my luck with the D3. One thing I don't recall seeing, is when to start taking them. Should I just terminally start a regimine or just in my cycles. I'm sure somewhere in the archives it is explained, but these are lengthy reads that are hard to stay commited to when you are in pain.

I'm having remisions lasting 1 1/2 to 2 years, currently free for over 2 years.  When they come now they are relatively easy to handle.  Only seem to have one in the 6-7 range during the cycle.  I hate to even say the words but I believe they are almost gone.  I know that waiting till your 60s is not much to hold on to but hopefuly there will be a breakthrough soon.  Over the years there were seizure drugs, mushroons, red peper, water etc and many more that folks said was the answer but as you can see from the number of folks on the board they don't seem to be the answer, aleast for most folks.  What we need is for some big timers kid to get them so we get some juice behind the research.  I don't know the correct number but think it's in the tenth of a percent that have the curse, not enough to get the scientific communities attention. >:( 

Quote:

Ugh....I hate hearing about you having CH in your 60's.

Me too, Tim.  No, wait. I'm 65 and just passed the magic 1 year chronic date. These things suck!