Hi, I'm Molly, 16.
Right, so I first started to have CHs in December 2010 (right as I was sitting Mock GCSEs) and naturally, being very psychosomatic, I assumed it was something terrible. My GP said "It sounds like CH..." as did 3 other doctors.
Research tells me that people who suffer from CH are usually male and/or smokers. Seeing as I am neither of those, I'm slightly very pee'd off with the whole thing.

The CHs trailed on right into February. They were never very bad compared to some people's experiences I've read about, but it was painful nonetheless. (Thankfully they did manage to skip real GCSE exams in Jan/Feb)

I was prescribed Pizotifen which helped a lot and the headaches simply became sort of a numbness. After a short while the Pizotifen was making me feel extremely tired and forced me to go to bed at around 6pm every evening. After explaining this to my GP she put me on a nasal spray instead, which actually brought on the headaches again (WHAT?!).

After many weeks of switching between Pizotifen and the nasal spray, my CHs started to die down. They are still there, but it's the numbness I felt before. Sometimes the pain is more sharp than other times, but it's durable.

I am now confident that I will be able to sit my final GCSE exams in the summer without fear of CH reoffending and at least I know what to expect come November/December time!

It's nice to know that this website is here for sufferers. I think it's a great idea!

Hi Molly,
You'll find on our message board that there's a significant number of female sufferers so you're not so alone as you might think.

I started getting my clusters when I was 17. I hope I don't scare you when I say that I'm still getting them and I'm now in my 50's.  Keep in mind though, there is a chance you might NOT get them next November/December; I get mine, on average, every four years or so and compared to some postings I've seen I feel very lucky for that small favor.  There are others who also have a number of years between episodes.

I'd also suggest to read as much as you can about the various treatments available to you other than the Pizotifen (I'm not familiar with that one except what I've just read on Wikipedia!).  This most recent cycle I found a lot of help from utilizing the high flow Oxygen and the vitamin D3 supplement regimen found under the posting "123 days pain free and I think I know why" in the Medications, Treatments and Therapies section.  A tapering dose of Prednisone was a HUGH help while a preventative of Verapamil took effect.

Other members will weigh in on their experiences and give you even more invaluable advice and most importantly encouragement and hope!

Best of luck on your upcoming GCSE exams and hope you have a permanent remission from that nasty beast (as we call it)!
-Gary

Welcome, Molly. So sorry to hear you are being introduced to CHs, but as Gary has said, there is reason to be optimistic. It does sound as if you are cycling down and that will come as a relief. Nothing says you have to have another cycle, either, but just in case you would do well to research this site for preventatives and abortives that we have found helpful. I'm glad you found relief with pizotifen. It isn't a front line preventative for CHs and if you find you cannot tolerate it, or it becomes less than helpful, there are other meds to try. And if you come back into cycle, do read up on Oxygen as an abortive, clicking on the link to the left, because it is across the board the most effective abortive with the least amount of side effects (none). In the meantime, enjoy life and be prepared. Good luck and God bless. lance

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While you are "enjoying" your interlude it's a good time to learn about CH/treatment.

We strongly suggest an experienced doc since this is an area of medicine far more complex than the OTC medicine ads would lead you to appreciate.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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As you have time, explore the buttons (left) starting with the OUCH site. Then:




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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See PDF file, below.
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Reading here routinely will be a teaching tool even as some of the issues are not of immediate impact for you.

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