I am 23 years old and have suffered from episodic cluster headaches since I was seventeen. Until I was eighteen, I didn't realize that these attacks were a serious problem that I should have me consulting with a professional. My cycles start around August or September and last until May or June. If I'm lucky, I have a remission period of one or two months. Up until the last cycle, I consulted with my primary care physician and there was/is no cure for my attacks but there was a certain level we reached that kept me from being in the E.R. constantly from dehydration from throwing up and my mom wanting to do anything to get me out of the bathroom floor. My symptoms (some, not all): severe pain in left eye/sometimes temple, waking up in the middle of the night several times with attacks, several attacks during the day, vomiting, one-sided runny/stuffy nose, any attempt of pain displacement, loss of vision in affected eye, droopy/shut eye, etc. Last cycle I finally decided to see a neurologist and she told me that there was no way I had a cluster headache because only men in their 40s or 50s suffered from this condition and the fact that I was healthy in every other way did not support this diagnosis either. Any suggestions? I'm run ragged from missing work (which I'll use the letter from the forum), being called a pill popper, people thinking I'm exaggerating, and it affecting my attempts at a love life since every guy has run off scared when I end up in the bathtub writhing and jamming the palm of my hand in my eye. I'll do anything to help it and usually end up in a bath with the hottest temperature of water and my hand shoved in my eye socket. help help help :-/

Quote:

Last cycle I finally decided to see a neurologist and she told me that there was no way I had a cluster headache because only men in their 40s or 50s suffered from this condition and the fact that I was healthy in every other way did not support this diagnosis either. Any suggestions?

Hello Sara, and welcome aboard. Sorry you need to be here, but since you asked the above: yup, get a new neurologist. One who truly understands CHs. To dismiss your symptoms for the reasons you stated...that's so wrong in so many ways I can't even begin to count them. No only do we have several women on this board, we have male and female teens, we have old codgers like me, as well as the stereotypical bald men in their 40's. Just because your neuro has a degree and training in neurology does not mean he/she has any clue whatsoever about this condition. It is rare; it is covered very little, if at all, in med school, and most have never even met one of us. So...whew...my diatribe is done. Go to the OUCH website and look for physicians in your area. If you tell us where you're from, we might already know of some good ones in your area. There is help available, even if there is no cure. Let's hear more from you, OK? God bless. lance

Your story is all too common: Many docs, even neuros, have dismal education/knowledge of complex headache disorders.

First, a doc:
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.
===
Start learning: education is your best protection against anxiety and despair and knowledge will give you tools with which to discuss treatment with your doc.
---
Explore buttons, left, starting with the OUCH site.

---



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]
----

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
------

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
---
And read the messages here, as you have time. Keep us informed as specific issues/questions develop.
----
The PDF file, below, will give you the latest evaluations on the kinds of treatments you may expect from a good doc.

---

Welcome to this board. Your neuro is stupid, get another one. Thie one knows NOTHING about CH. As acourtesy to the rest of the world, send them a link to this board on the miniscule chance they might care enough to become educated.

The bad news, there is no cure. the good news, there are numerous treatments available to make your life easier. Prevent meds you take daily while in cycle to reduce the number and intensity of your hits, Verapamil is the typical first line prevent, lithium and topomax help many.

Abortive treatments, oxygen is proving a mirale abortive for the vast majority who try it. Imagine you feel that familiar tension stinging knot in your neck and the pain starts building. You huff pure 02, 6-8 minutes later you're pain free.

Imitrex injectables and nasal sprays work as fast or faster then 02 for many. For now go buy a four pack of sugar free red bull. Chug one down at the first sign of an attack. Many can abort or really reduce an attack this way.

Follow Bob's link and get referred to a headache specialist neuro. The clown you saw will leave you in a lot of pain.

Joe

Thank y'all SO SO much! Yesterday I had another attack and my mom came and took me to my doctor who was starting to believe that neurologist (since he is a general prac.) and definitely changed his mind when he saw me looking like the Exorcist on his table. I believe coming to y'all was a huge turning point and y'all have helped a lot since I got back from the E.R. I had 6 liters of oxygen getting shoved up my nose thanks to a man in the E.R. who said he went through this himself but "grew out of them". Have y'all heard of this before? He said it's also possible to get migraines on top of cluster headaches. But, all in all, just like y'all he referred me to a headache specialist in Houston! I plan on using the resources and info y'all gave me as well because it seems like no one understands us? Thank y'all again! I wish I had known (and my family had known) about this site years ago.

Quote:

Last cycle I finally decided to see a neurologist and she told me that there was no way I had a cluster headache because only men in their 40s or 50s suffered from this condition and the fact that I was healthy in every other way did not support this diagnosis either. Any suggestions?

Uh, yeah. Like Guiseppi said, fire this a$$hat, posthaste.

Yes it's possible to grow out of them. Many members and ex members of this board have.

Yes it's possible to have multi headache types. Migrains and clusters, etc. This makes it even more critical to both work with a headache specialist, and if you're not already doing so, keep a headache diary. Make it as detailed as you can. When the attack starts, how fast the pain builds, how high it builds, how long it stays at peak, how fast it goes away, any side effects like droopy eye, runny nose, the type of pain, throbbing vs. stabbing, any sensitivities to lights, sound, any auras before during and after. The more detailed the better, it's an excellent diagnostic tool.

Joe

Sara wrote on Nov 5^th, 2011 at 8:32am:

He said it's also possible to get migraines on top of cluster headaches.

It's certainly possible, I get CHs and migraines.

Quote:

I had 6 liters of oxygen getting shoved up my nose

Sara, it sounds like you were given low flow O2 through a nasal canula. It's better than no O2, but not by much. A more effective way is described in the O2 link at the left. Please read that before your Houston visit, bring the notes with you, and ask for a prescription for high flow O2 (15-25+lpm) and a nonrebreather mask. You'll find this is a much faster way to abort the pain. God bless. lance