Cluster Headache Diagnosis?

[HeatherTee]

After being diagnosed w/miagraine headaches, I began researching. I do not fit the typical mold for
miagraines, but have every classic symptom of cluster headaches....the severity of pain concentrated on
the right side of my face (eye and brow area). Runny nose on the right side during an episode and the
headaches come w/no warning around the same time (usually between 11:00 pm - 3:30 am). I experience
no sensitivity to light or sound and am not nauseated. I am SO frustrated w/my Doctor who claims that
cluster headaches are the same thing as miagraines - "they just call it cluster headaches in men instead
of miagraines". Is there anyone anywhere w/capabilities of giving a proper diagnosis? These headaches are
excruciating and I've spent the entire time thinking that I was simply a whimp w/miagraines! I am somewhat
relieved to see that it could be something else and am trying to figure out where to go from here...?

[DrNoopurMD]

Hi,

Thanks for writing in.
From your post it does seem that you have symptoms typical of cluster headache and not migraine. The degree of pain in cluster headache is much more severe than even migraines. It is a boring pain which is also present behind the eyes and associated with eye redness and runny nose. These are also known as alarm clock headaches as they have a cyclical time for occurrence.
I would suggest you to seek a second opinion. Meanwhile ice, hot showers, breathing cold air, caffeine and drinking large amounts of water helps in the early stages of attack.
Take care!

[ChappyCH]

Hello,

I've suffered from cluster headaches since May 2000.  Dr. Noopur is right: your symptoms fit, and his recommendations for abortive treatments are good home remedies.  I have both basilar migraines and Clusters, and I can tell you that you're not a wimp - once you've had a cluster headache, migraines are for panzies.

Abortive treatments have to be taken at the first sign of an attack to be most effective, and the most common is sucking down an energy drink with caffeine and high taurine (Red bull, monster, and Rock Star).  I don't know if you want to do that if you usually go back to sleep after, but if they're unbearable then leaving a Red Bull by your bed can stop it dead in its tracks.  Hopefully a good doc can help you find a preventative that works, as well as prescribe some abortives (start getting used to the idea of oxygen tanks).

Quote: I am SO frustrated w/my Doctor who claims that
cluster headaches are the same thing as miagraines - "they just call it cluster headaches in men instead
of miagraines".

That is, literally, the most ignorant statement I've ever heard about cluster headaches, and I've heard quote a few.  I'm guessing your M.D. went to med school more than 30 years ago, and hasn't read much of anything about headaches since. The least he could do is open a damn book and look it up when you mentioned it.  It's true that clusters were previously called "Cluster Migraines" but the etiology of neither is well understood, but it is widely understood by headache specialists that cluster headaches originate in the hypothalmus, and migraines originate in one of two other areas of the brain (they're not sure which yet).  It was once believed that women don't get cluster headaches, but studies show that 20% of sufferers are women.  Women tend to get them later in life, near perimenopause or after menipause, but I know plenty of women of all ages who have them.  

Within the cluster headache community, there is alot of negativity about the typical M.D.'s, and even most neurologist's level of knowledge about the condition.  My diagnosis took nearly 8 years, 20 M.D.s including 2 neuros, a worthless sinus surgery, and 43 medications.  

The average neuro won't see their first cluster patient until after 10 years of practice, and the average cluster sufferer waits 6 years from onset of the condition to be properly diagnosed.  You need to find and visit a neurologist who is a headache specialist, and nothing else.  If you're in a smaller city, you may need to travel, but it will be worth it.  I finally had to go to Mayo in Phoenix to see one of the leading headache specialists in the country (Dr. Dodick).  Choosing a true headache expert is important for two reasons: 1) There are several primary conditions that can cause secondary cluster headaches, some of which are life-threatening, and these must be ruled out.  2) Treatment of cluster headaches is as much art as science.  Drug companies don't develop drugs for us, because we're too small a group.  So they've thrown every drug developed for seizures, migraines, and pretty much anything that might affect vasodilation or neuronal activity at us.  The list of "best treatments" changes constantly, so a headache specialist who isn't fully engrossed in the field won't be of much help.

One resource for finding a good neuro is the list of patient-recommended doctors at OUCH dot org.  You could also post your location on clusterheadaches dot c0m (I can't believe they won't let anyone post links here), join, and post a message asking for recommendations on a good neuro near you.

You could also look through lists of neuros covered by your health plan (if you have one) and phone book, call and ask if they are headache specialists (many will claim they are when they're not), and then google them.  Your best bet is to see a headache specialist who has published papers on migraines, clusters, and headaches in peer-reviewed journals, or maybe you can see one of their Fellows.

If you want, send me your email address in a private message, and I'll send you some links that every clusterhead (or possible clusterhead) should read (even before seeing a specialist).