Hey there, new guy here.

So, I'm pretty new to the whole concept of cluster headaches, with my physician just diagnosing me with them. I was prescribed sumatriptan which I have yet to be able to test my personal efficacy to. Personally, I'm hoping her diagnosis is wrong, headaches being as subjective as they are. I'm hoping someone here can relate to my story and help me find the right name for what I'm going through (Which is probably CH). Up until this weekend my  only experience with them had been the research done on the them with Psilocybin and LSD for one of my classes at University.

I've had headaches my whole life that I knew were different from "normal" headaches. It didn't take long for me to realize that they weren't migraines either, as I had nearly none of the tell-tale symptoms. Still, whenever I needed to tell someone I had a headache I called them migraines just so they would believe it was severe. Normally these headaches are felt right behind either one of my eyesockets and is a wedging, prying type.

When I left for college two years ago, they seemed to fade away. However, because I thought I had outgrown them I tended not to look for a pattern. Looking back, I remember at least a few times where cigarettes or coffee would give me a headache and some research has shown at least anecdotal evidence that they trigger attacks.

This brings me to the other night, where it was back with a vengeance. It was perhaps the worst one of my life(I can only remember one other one that could be as bad). It was about 2.5 hours of excruciating agony, rolling back and forth for the slight semblance of relief it allowed. The next day I went to my University's urgent care [Words of a friend: Visit a doctor any time you've had the worst headache of your life] and after about five minutes of asking me about my headaches she started telling me about cluster headaches.

I'm pretty much terrified of this next one coming. Because I had one this bad after such a long time of remission I have no idea if they'll be like that again. And it's the waiting game that's killing me. I keep feeling phantom headaches, which are probably just psychosomatic and a response to the shear amount of thought I'm devoting to them. But I can't stop, it's just a dark spot in the back of my mind. I don't know when it'll come, I don't know how bad it will be and I don't think I have anyone who knows what I'm going through.

Wecome Cal,

You will find a wealth of information on this forum. Take heed to the information on the left of this page, a lot of very helpful information is contained there.

Proper diagnosis is critical and it appears you are well on your way. The Beast ... as he is affectionately (NOT) referred is different with each cycle. We do all share some similarities.

Most likely you are experiencing "shadows" as we refer to them , not quite full blown headaches, just letting you know they are there. Yes, they are difficult to deal with , with some lasting a short time and some much longer.

Knowledge is your greatest weapon. Read... read... read.... ask questions and repeat. Don't be afraid to discuss option with your Neurologist , finding one with experience in Cluster Headaches can be a chore, but well worth the search.

I have found High flow Oxygen with a demand valve to be my go to abortive. Subcutaneous injection of Imitrex works well, but since Oxygen, I've not used it in years.

I'm sure many members will be along directly with various links etc. but you can glean a great deal of info. by just looking around the site in the mean time.

Welcome to our dysfunctional little family, relax and sit a spell. Great forum, great experience and even greater members. You have come to the right place.

All the best ,

Baer

First, what does a proper diagnosis entail?
--I have a piece of paper from my doctor that says "You have been diagnosed with the following: Cluster Headaches"
--But, this is after my first visit to my school's clinic, and my first time seeing this doctor.
--We were able to rule out secondary headaches because of my personal time table
--She confirmed that my experiences were not tension headaches
--Like I said, I've long known these weren't migraines.
--This all took under 15 minutes, but Sherlock Holmes would tell me they are Cluster Headaches

My next question isn't so much a question, as an observation. I don't really remember the prevalence of the attacks my teenage year, but I don't seem to get them with the frequency most commonly reported. Since the one a few nights ago (Kip 9) it's been nothing but shadows. I don't know what to make of this.

I was prescribed some imitrex pills, but it's hard to find much research on the efficacy. Do you know of any?

I guess any scientific research would be welcome as well. I'm studying at UC Berkeley (Cognitive Science of all things, maybe I can tackle this thing) and searching through our online database is rather barren.

I'll post some more questions as I think of them

Custer headaches are a clinical diagnosis based on a confluence of symptoms and no contraindications which are ruled out through various tests, like MRI scans, etc. If your symptoms match up, and nothing else arises indicating a similar but different condition, then you are given the Dx of CHs. The pill form of sumatriptan you describe tends to be ineffective. It is too slow. Subcutaneous injections of imitrex (2-6mg) seems to be the most effective. For "scientific" documentation, search Bob Johnson's posts. He lists a variety of studies on various aspects of the disease. In the meantime, read about the O2 abort, coupled with energy drinks, which many of us find to be the most effective means of dismissing the beast. Blessings. lance

YOu should have no problem finding a headache specialist in your community. Notwithstanding the costs, your long history, and age, would make it a good lifetime investment to get a solid diagnosis and treatment plan. Too many folks drift around for years trying to patch together a fix bu this is too complex area of medicine to try and do the job without skill/experience in your camp.
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Knowledge is second only to patience in coping with Cluster, so to begin---




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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A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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See the PDF file, below. This is a listing of the most commonly used meds for Cluster. Print it out and use as a discussion tool when you see any doc.
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Explore the buttons, left, starting with the OUCH site and its many internal links.

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Hi my friend,
I would recommend you get your hands on some O2. If this works for you as well as it does for most of us, it will go a long way to easing your mind... then you will be able to relax and educate yourself properly. The only time I truly fear CH is when I am out of oxygen.