Hi everyone,  I just found this site by accident. I say where were you when I needed you because my CH started when I was 16. That was many years ago...I'm 50 now.

I suffered for so many years and no doctor could help me.  I had teeth pulled....cortizone shots for years in my nose....allergy shots weekly.....many different drugs that doctors put me on....I almost killed myself by overdosing on one of those drugs. That was not on purpose but because I just thought taking more of it would make the pain go away.

I would beg God to take me nightly when they would come.  I would get them mostly in the summer and fall.  They would last for about a month...every day and night and then suddenly would disappear for months at a time.  

I was 30 years old and one day I was reading a newspaper and they had a doctors column. This doctor from New York was talking about Cluster Headaches and I realized that all the symptoms were mine.  It said that 90 percent of the cases were men who were smokers.  The article talked about some medication that you put under your tongue (can't remember the name) and also talked about oxygen.  

I brought the article to my doctor and he didn't believe that was what I had.  At the time I was having CHs daily and was wishing I would have one right in his office...but of course that wouldn't happen. I begged him to let me just try the drug which at the time was new from what he said.  It didn't work.  

I went back to him for the oxygen perscription. He didn't want to do it and I sat there and just cried and cried....he gave in.  I used it for 2 weeks faithfully.  I had a tank by my bed and a portable one that I took with me to work.  By the end of the two weeks the CHs were gone.

I am happy to say that from age 30 until now I have not had a single CH.  What happened?  It was a miracle I'm sure.

 The reason I'm writing right now is because something happened recently that scared me.  The other night I awoke with the pain in the temple starting. I knew that pain so well from the past.  I jumped out of bed and put some Ben Gay on my temple and under my eye (that seemed to relieve some of the pain many years ago). My nose started to unblock and my eyes watered and the pain went away.  Are they starting again?  God I hope not.  

The one thing I know though is I will not be alone. Thank God for computers and places like this website where information is abundant.  I understand completely what everyone on here is going through.  You are the strongest people I know to keep going daily and never giving up.  Thank you

Welcome to the nuthouse. 20years without a hit. That is fantastic. I hope that your cycle is not starting back after all these years. If it does, come straight here and tell us about it and we will see if we can help.

I am 60 and mine started at the age of 21. I have been pf however since 2000.

Hi there, and welcome.   :)

Great to hear you've been pain free for so long.  I'm a long-term episodic myself--started at the age of 13.  I'm 55 now.  Currently, I'm just over 3 years pain free.  It's a beautiful thing.  

I've wondered as well what it might have been like to have met the folks here, way back when.  How difficult it must have been for those who struggled with these for so many years--alone.  The condition's nothing new, but the power of this community has changed things for the better for thousands.  Maybe the things you've learned in your own fight with this madness will make all the difference to someone here one day.  It happens every day.  

Welcome home.   ;)

Best wishes,

George

Welcome to Clusterville,

Now you ARE NOT alone... this is one community that UNDERSTANDS CH.

In the last 10 years or so there's been a lot posted on this board and a lot of changes to our treatments. (O2 is one of the things we're doing a little different these days thanks to the research that's been done). Hopefully you won't come into full cycle, but if you do - this is the place to be...

Hugs BD :-*

Glad you found us, and I really hope you don't need us!  Isn't it amazing how after 20 yrs just the twinges can recall the agony from so long ago?  I know that I don't remember the pain from accidents or surgeries from that long ago, but CH is indelibly stamped in our consciousnesses.

Hoping you remain PF.

Jerry

When you were most in need, the internet didn't exist.

Great new invention, the internet. Eh?

The punch line is 2nd from end--no predicting! That being the case, it would be wise to get up to date on current treatments rather than wait until something does develop.
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.