I don't even know where to start so I guess I will start at the beginning. Be prepared for a lengthy first post.

My name is Corey and I am 32 years old. I am 7 weeks into my first experience with cluster headaches. Before last week I had never heard of a cluster headache, let alone had any information about them. So here goes my story...

My first headache woke me up around 23:45 on a Wednesday night. I wake up for work at 04:00 so I go to sleep pretty early in the evenings. The stabbing pain behind my right eye was nearly unbearable. I have a fairly high tolerance to pain but this headache had reduced me to tears on the floor next to my bed in minutes. This was unlike anything I had ever felt before. It lasted 45 minutes.

I have had sinus problems all my life and I usually get about 1 to 2 migraines a year. The first headache I chalked up to a really bad sinus headache or something I ate that didn't agree with me. In a matter of 45 minutes my outlook on pain jumped to a completely new level. I couldn't imagine being put through anything more severe... until 3 days later when the next one hit me. Since that first one, they have increased in intensity and frequency.

Now, I am a pretty stubborn person when it comes to doctors and hospital. I just don't like them because of the past experiences I have had involving them. It took me six weeks of dealing with these headaches before the most severe one I have had so far hit me last Thursday night. I was sure something was seriously wrong, I was sure that I was dying. It hit at 23:30, I went to the emergency room at 01:00. The whole time begging through my tears for my girlfriend to drive faster. When we got to the hospital, the triage nurse says, "Oh, so you have a headache." The tone was full of condescension. I felt ashamed that I let a headache bring me to this. The next nurse jokingly made a comment to me about having all these tattoos and coming in for a 'lil ol headache.' I almost screamed at her, "You don't know how this feels!" Again,  I felt ashamed that I let this pain cause a very uncharacteristic outburst.

The doctor came in and examined me. I tried my best to explain precisely what I was feeling, but it's hard when you've never felt like this before. I was sure something was wrong inside my head and with my limited medical knowledge, all that I could think of was a tumor. The doctor ordered a CT scan for me to look for tumors or hemorrhages. While I waited to be taken to the other area, the nurse puts an IV in me. I don't remember the name of the drugs, but the nurse mentioned giving me pain medicine, anti-nausea medicine(apparently the pain medicine makes you nauseous), and Benadryl through my IV.

After my CT scan, the doctor says everything is normal in my brain... I remember thinking this is not normal. He then referred me to a Neurologist. That attack lasted nearly 3 hours...

I started researching headaches through Google and found a site explaining the different types of headaches and causes. This was the first time that I would read about cluster headaches. When I read the symptoms, it was like I wrote them myself. Almost ver batum the things I had been describing to my girlfriend were right in front of me. The more I read, the more I became emotionally discouraged. There is an artist's depiction called "The Cluster Headache" on Wikipedia's article on them. I wish I had this drawing with me when the doctor asked me to describe what I was feeling...

I think the thing that stands out most to me in all the information that I have read in the last few days is 0.1% of the population are affected by these... Why do I have to be so damned special?

I can't think straight, my neck and shoulders are sore and stiff. The right side of my face feels like I've been punched repeatedly... I found this site today, it's nice to know I'm not alone with this

My appointment with the Neurologist is next Wednesday. I hope I can make it that long. I am currently on a 3 night streak of attacks. Maybe tonight I can sleep.

Welcome to the board Trance. Is your appointment with a headache specialist neurologist? There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. We've seen far too many GP's and even garden variety neuros who have no idea how to treat CH.

I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Guiseppi, thank you for your advice. I think that my appointment is with a general neurologist although I am unsure. I will be sure to find out. As far as the energy drinks, I have already jumped on that train. The do reduce the intensity some. The only drawback is when I take one or two of them at midnight, getting back to sleep is next to impossible. Every single one of my attacks have happened while I was sleeping and between 23:30 and 24:00.

norkAch, I will make sure to start keeping a log. Thanks for that advice. I have been practicing the 'walk it off' method since the beginning of them. I find that being stationary actually makes the pain more severe with me. I have read and learned more about CH in the last 72 hours than I thought possible lol.

Your ER experience is, sadly, virtually the norm for CH folks.

Keep your neuro appt but don't be shy about questioning him re. his training & experience with Clusrter. Studies have shown that docs received little education in headache and, even neuros, have amazingly limited training in this area. Reflects that Cluster is a "orphan" disorder--we are such a minority that medicine simply can't train docs in everything.

So, while you are waiting, learn.

Explore the buttons, left, starting with OUCH.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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Consider buy the second title:
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.
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See the PDF file, below. These are the kinds of treatments which you should expect to receive from your neuro.
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Since you know migraine, be patient about trying to balance treatments for two headache disorders. Patience is a survival tool. In part, this translates into not jumping from med to med in a search for relief. Several of the common meds take some time to adjust dosage and to allow time to see how your body responds.
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Down the road, when your pain is under control, at least read and reflect on this little article:

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