I know this sounds silly, but I think that all the years I struggled with these horrible headaches, I was having cluster headaches and not 'tension headaches' like the idiot headache specialist told me I had, or migraines like my nurse pract. thought I had. The headache specialist wanted to hook me up to a biofeedback machine and teach me to 'deal with the pain' (are you kidding me?), and my nurse pract. put me on Topamax, which thank goodness has worked for me. Except for the occasional 'tinge', I've been headache free for almost two years.

I am trying to better understand the headaches I suffered with for about 10 years, however. The reason I think they were cluster headaches were because:

-My dad had the same exact type of headaches (I'm a woman and I know they are more prevalent in men, but they also have a tendency to run in families)
-When I would get the headaches, they would hurt on one side of the head, but I would have piercing pain centered around my eye to the point that I would want to practically tear into my head and pull the pain out. The headaches weren't always on the same side of the head.
-Whichever side of my head the pain was on, that nostril would plug up, or that eye would water, or both. When the headache would finally end, that eye would stop watering and/or the nostril would unplug.
-These headaches would last for a week at a time, day and night, so I would be quite tired, but regardless of how tired I was, I could not sleep or relax. I was restless, cranky, and unable to sit still. Even though it hurt to move, it hurt worse to be still, I guess.

The only thing that didn't quite fit what I've read is that once the headache started, the pain would wax and wan, but be ever present day and night for a week straight. I'm wondering if I was having a cycle of cluster headaches with shadows in between.

So I guess I'm wondering if it's possible that I was having cluster headaches and if anyone here has an opinion. I know you can't give medical advice, but as I stated before I am only looking for information as I have found a medication that works to keep the worst pain I have ever felt in my life at bay. You can't give me any worse advice than that stupid 'headache specialist' did. He acted as though I was a whiny brat who just drank too much coffee. He actually told me that Topamax wouldn't work and I shouldn't take it (or any drugs). I have a pretty high tolerance for pain, and all I know is that I told people that I was to a point where if a doctor told me he/she could take the headaches away, but would have to amputate one of my arms, I would have seriously considered it.

Thanks for your help in advance...

Did you ever get a MRI to rule out anything else?  I do the topomax also.  Doc ALSO told me i drank too much caffeine.  Did you quit the caffeine???    I quit caffeine pretty much.    So far it has worked for me, no major clusters.   some shadows.  about 7/ 8 months for me

Finding a good doc to get an accurate diagnosis is essential. There are dozens of types of headaches and dozens of disorders which appear to be cluster but are not cluster. Sorting thru is essential.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box.  Call 1-800-643-5552; 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.

Now Joe,  You know wimminz don't get CH!   (I'm running for the hills! LOL)

it sounds like CH to me.  I'm with the others though.  Get it thoroughly checked out w/MRI, etc to be sure, then get Oxygen to use as a back up for when the Topomax quits working quite so well.

Jerry

When I was first diagnosed in the early 80's, CH only affected men, taller then average, with "lionesque" features...WTF????...rugged outdoors type with orange peel skin! Needless to say we've made some strides in our education efforts...but as you discovered we've still got a ways to go.

Eliminating caffeine, dental work, sinus surgery......sad how many people have gone down these roads trying to find an answer. If you decide to go off the topomax I'd sure want oxygen at the ready just in case!

Joe

tsellers wrote on Feb 9^th, 2010 at 11:18am:


Yeah I've never had an MRI either - the last appointment I had with a neuro, she assumed I'd had one at one point, but when finding out that wasn't the case, didn't worry about it since the fact that I've had these for 30 years made a brain tumor an unlikely cause. 

Sooo many of us, including myself, went and got wisdom teeth pulled, mistakenly thinking that had something to do with it. Soooo typical, you're part of a very large club there. 

Not all tumors are the growing kind.

I can understand foregoing the MRI, especially in the US. Insurance here sucks, and it's hard enough half the time to find a GP that doesn't tell you it's 'all in your head', much less sign off on the added expense of having an MRI done for something that is 'all in your head'.

Then I have to wonder how my doctor would react to me wanting an MRI on my head even though I am pretty much 'headache free' with the Topamax. I would have to think that wouldn't go over too well. 

I was talking about in cases like mine, where I had already been suffering with these headaches for 10+ years when I came to see my nurse prac. She mentioned an MRI, but I had stated that felt that since I had been having them for so long, if it were a tumor, I would probably be dead already. She put me on the Topamax, the headaches stopped, and I didn't think about it until I started considering going off of the Topamax.

If anything, I would have thought that the 'headache specialist' would have wanted an MRI, but he never even mentioned one.

Dear Tsellers,

It does sound as though you may be dealing with CH, although I suggest that you go through a thorough process of elimination first in order to exclude any other causes, which includes a MRI not only necessarily to exclude a tumor but also other neurological issues, chronic sinus issues or your eyes before you conclude that CH is the root cause of your pain.

Be absolutely clear with what you are dealing with before you start tackling it, although your symptoms appear quite typical.

As you will establish quickly when reading through these pages CH is no clear-cut illness that has a standard treatment recipe. Everyone responds (or doesnt) to different treatments, dosages and approaches.

It isnt helped by the fact that most "headache specialists" or neurologists have little understanding of the illness. Your personal experience makes this very clear. Most have only been trained on mainstream neurological treatments and consequently tend to respond to cluster (if they know it at all) with the regular migraine arsenal.

Over time you will realise that you will have to become your "own neurologist". I am by no means suggesting that you self-medicate outside proper consultation by a medical professional but am trying to say that you will have to find your own way of establishing what works best for you in which dosage at any given moment in time.

Regrettably, regardless whether you are episodic or chronic this changes all the time and calibrating the right prophylactic treatments again and again can be an unnerving process.

You will have read about hundreds of different methods to either prevent or abort episodes or attacks on this site or elsewhere. These may include only eating potatoes for 4 weeks or thinking about your last beach holiday until the pain goes away. Although I believe that these may work for certain individuals, the sample size is simply not big enough to support a plausible application on a larger scale. The most common and proven treatments appear to be the following:

Abortive:
O2 (weapon of choice)
Triptanes

Preventive:
Verapamil
Topamax
Lithium

Prednisone (Steroids) are often used at the onset of an episode for a limited time (7-14 days) and gradually tapered off in order to abort the episode until the preventive medication takes effect.

There are several more but above are the "classics", which seem to help most of us more or less.

You will find many knowledgeable people on this site that will help you in your quest to understand this illness better.

Good luck with taming the beast and take good care.