Hi Everyone,

I thought to post initially on the welcome forum, but there doesn't seem to be any activity on it.  I was officially diagnosed with CHs yesterday by my neurologist.  He thinks my symptoms are textbook.  Had my first cluster 4 years ago, at the time it was thought to be sinus related (a misdiagnosis I'm sure a lot of you are familiar with).

Despite the nature of the condition, I am happy that I am finally getting an idea of what I am really experiencing (no more sudafed or allegra!).

One of my first questions is opinion related: my symptoms seem to line up with CHs to a T except for the excruciating pain part (thank god).  During the worst part of my cluster, my headaches do wake me up, but I wouldn't call the pain "suicidal" level.

I'm not sure if I have a high tolerance for pain (doesn't sound like me) or maybe I'm just blessed thus far with 4s and 5s, but at their worst I am irritable and exhausted from the experience and lack of sleep.  The pain is annoying and at times VERY uncomfortable (just want it to subside).  Can CHs vary in intensity from sufferer to sufferer?

Last question: the doc gave me something to try (haven't filled it yet and can't read his writing) to help me with what he calls my "post cluster period" which I am experiencing now.  I characterize it but recurring achy on my attack side (right) and occasional sinus tightness (same side), but the attacks don't come.  Anyone else experience a post period? 

So happy to have found you all...and PS: the water method published on this site seemed to have helped me kick out of the end of my cycle!

Sincerely,
Noah
 

Newly emerging Cluster is often marked by changes in pain intensity, pain location, etc. which may continue for weeks, even up to years, before settling into a stable pattern.

This also true (mucho frustration!) of the meds which you use, i.e., may be effective for long periods and then stop. Not common but points to one survival quality for us: need to be patient, tolerant, and not go nuts which such changes hit.

Post attack med??? Likely thinking about some residual pain. Not a universal experience but not to worry if you do experience it.

The pain intensity does vary between individuals. A few cases of painless Cluster have been reported in the literature!

Appears you have an open, receptive doc. Much in your favor for this is not a disorder for many docs who lack education and adaptive capacities.

Become a regular comsumer here: just reading the messages will give knowledge and comfort.

What Bob said! For the first few years of my ch, in my late teens, I never went above a four or five. Hoping you never do. But do continue to read these boards, knowledge is always your best tool against the beast. Glad you found us, welcome.

Joe

Thanks Bob and Guiseppi.  I hope they don't get worse either!  My only other official cluster was 4 years ago (when I was 24).  Since then I've felt a little achy when the season change (always thought they were allergies).

My neuro says he got them 2 twice in his life and hasn't had them since.  Fingers crossed!  I he wrote me an Rx for topamax for this post period.  Hoping it does the trick.

My brother is an ER doc and he's going to look into some studies and work with me to determine a course of treatment.  I'm also working with a nutritionist.  I'll keep everyone posted on my findings.

Glad I found y'all too.

Thanks,
-Noah

PDR file, below, for you and your brother to share.
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He will find the first title of merit.

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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For you :




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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