I went to the Neurologist today to confirm my suspicions about my headaches. I stumbled on this site after watching a Dr. Oz special and as soon as he started describing CH's I instantly knew that's what I had. I was diagnosed not an hour ago with episodic CH's :-[

It's hard to explain to others the nature of the beast, and when I dance it's the most personal, embarrassing, and downright miserable times in my life.

But now I know that others suffer as well and I'm not alone with dealing with the beast. I get my Imetrex injections soon, and my Oxygen tank fairly soon as well and for the first time in 8 years I'm actually optimistic about my futre. I can't wait to abort the beast for the first time  :)

Started at age 12 diagnosed at age 20, if thats not bad doctors idk what is. But here my rant ends. I hope to rely on you guys in the future, as the only consolation upon finding out i have this persistant condition is the thought of support from others. This site is amazing. Thank you fellow clusterheads.  :)

Hi Apollo

It's good to hear that you've got a diagnosis and things are happening.

Has your doctor put you on a preventive? Something like verapamil, lithium or topomax that will cut down the number of CHs that you get?

For the oxygen make sure it's a high flow rate (15 litres per minute or higher (even better)) and you're using a non-rebreather mask. Read up about it using the link on the left.

Have you tried using energy drinks, like Red Bull, that have caffeine and taurine?

For night time hits people have been having sucess using melatonin (about 9mg).

Keep reading and asking questions and you'll get control over your CHs.

Mike's done a great job of giving you the basic run down. Congrats on finally getting a decent doc, from the sounds of your treatment regimen, he's more up to date then most. Keep reading, an educated CH'er hurts a lot less. Welcome home. ;)

Joe

Welcome! The more you learn the more control you will gain and the more productive your discussions with the doc.

Just to get you started:

1. Explore the buttons, left, stating with the OUCH site.
2. PDF file below.
3. and the rest.....
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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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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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And read the stuff here. You will begin to see yourself, you patterns, and the variety of approaches to treatment which defines this strange disorder.

Life will never be dull again!

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Thanks for the info. I've been looking over the links, and feel equipped for when the next time the beast shows up.

My doctor wants to see how effective to abortive methods are before starting me on a daily regiment of medications, but she did mention verapamil and how it can be helpful in reducing the quantity.

Welcome Apollo.  You've been through alot for only being 20 years old.  I'm glad you seem to have found a good doc and hopeful you will be able to prevent, rather than endure, soon.  Read all you can, post updates, and ask questions.  The people here are awesome and have so much knowledge you'll be amazed.  Do you have any supporters like parents, siblings, signif other?  If so, send them here too.  Knowledge is power and your support system is equally important.

I'm glad you're here.   :)

Apollo wrote on Jan 4^th, 2011 at 6:55pm:

My doctor wants to see how effective to abortive methods are before starting me on a daily regiment of medications, but she did mention verapamil and how it can be helpful in reducing the quantity.

Prevntives don't stop 100% of CHs, so you'll still be able to see how effective your abortives are. However I'd still want to be on a preventive.

Hey Apollo,

Sounds like you will really be turning a corner indeed now, and will likely have a much less severe experience with CH.

I see you're getting imitrex injections - If you haven't checked out the imitrex tip START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE yet, that will be some critical info for you.