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...

Welcome tsellers!!!

Your pain does sound like CH.  Your best bet is to never go that doctor again and find a new headache "pain specialist" or neurologist specializing in headaches.  Get the EEG and MRI done to rule out the worst case.  Once you're officially diagnosed, your doctor should set you up with good preventative and abortive drugs.  You'll see many different kinds on here. 

Any doctor that thinks you whine is just lousy.

Read as much as possible on here and check out OUCH's website to find a doctor near you.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Best of luck!

Cheers,
Chad

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

Very glad you are finding some relief with that Topomax.

Hopefully 'ol Bob Johnson will be on here with some input about the symptom where the attacks are more continuous...I believe he has shared some info on that subject before, but I forget what it was.

A-hole doctors causing their patients to unnecessarily suffer is just par for the course with CH I'm afraid. I don't think a day goes by here without someone reporting a lousy doctor experience.


tsellers wrote on Feb 8^th, 2010 at 9:50am:

(I'm a woman and I know they are more prevalent in men, but they also have a tendency to run in families)

There have been an awful lot of females with CH on this message board lately, and it makes me wonder if it really is THAT much more prevalent in men, or if that is more some kind of self fulfilling prophecy where the medical types proclaim it to be so, along with all their other BS about CH, then they refuse to diagnose females as having cluster, leaving many dangling out there not knowing they have CH.....

Hey a very good back up for you to have on hand (that many here swear by) would be oxygen...please read about it here, it might really complete the picture for you as an abortive, while you still use Topomax for a preventative.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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.
=======

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.  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. 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.

Boy, sure sounds like CH to me. I hope the Topomax continues to work for you. One of the problems with CH is meds that work for a while can stop working for you. For that reason, continue your search for a competent neuro given the tools above. You DO NOT want to be in the middle of getting slammed every 2 hours while trying to locate a good doctor! ;)

Stick around here, research like crazy, and get to a decent neuro armed with some information. If he confirmes the CH diagnosis, don't leave without a prescription for oxygen. 31 years of CH and it's still my fastest and most effective abortive, pain free in less then 10 minutes.

Let us know how the doctor search works out but please, do work on getting a decent neuro now while you're pain free and thinking straight!

Joe

And don't tell any of the girls here CH only happens to men...a couple of them get real cranky! ;D

Now Joe,  You know wimminz don't get CH! :D  (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

Thanks, everyone, for your input. I've been on the Topamax for almost two years now and haven't really thought much about the headaches until recently. I've been contemplating going off of the Topamax only because I am one of those people who hate taking drugs, but I thought I would try and understand my headaches better before I did that. I would much rather continue taking the drugs until the day I die than go back to the pain that I endured for 10+ years with those headaches.

I never got an MRI or any sort of scan for my headaches. By the time I sought out medical assistance for them, I figured if it was some sort of brain tumor or other such unsavory disease, I would have been dead long before I made my appointment with the doc. I suffered with them for so long because when I was a kid, my dad had the same exact types of headaches, and I had remembered that all the doctors ever did was give him more painkillers and shoot him full of demoral (sp?) so many times he's immune to it now. I just figured the doctors couldn't do anything for me.

Then, when my nurse prac. sent me to that stupid 'headache specialist' who dismissed me as a whiny woman, I felt my suspicions about the medical community were confirmed. My nurse prac. convinced me to try the Topamax thinking I was having migraines, but at least she acknowledged I was in some serious pain. But whenever I talked to migraine sufferers, I never really felt these headaches were the same, you know?

In the 10 years before I sought medical assistance, I tried physical therapy, massage, eliminating caffeine, different types of supplements, changing my pillow (at least 20 times), getting a $500 bite guard from the dentist, getting my wisdom teeth removed (my dentist felt that was the cause of my headaches), regular exercise, changes to my diet, various OTC pain medications (excedrin was my drug of choice, which I think was causing some rebound headaches in addition to the demon headaches), using alternating hot and cold compresses (usually consisting of the hottest shower I could stand on my head, followed by ice directly applied to the most painful spot on my head), beating my head on a wall, tearing my hair out (or at least trying to), and crying uncontrollably until the pain went away.

I will look into the information you all gave me. Thanks again for giving me the most important thing: validation. Especially the part about 'not only men get these'. I find that EVERYWHERE I look regarding these headaches, and I think that does tend to stop doctors from even considering them in women.  :o

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

Wellllll, I've been on topamax for over 10 years and ONE time I decided to go off it.... WRONG MOVE -- my neuro now has a written consent from me to HIT ME OVER THE HEAD WITH A BASEBALL BAT if I ever have that brilliant idea again!  It's been my miracle drug and I take it every night whether I think I need it or not and have no intention of going off it again. I can still remember how BAD it was when the CH came back full force like BEFORE the topamax and I don't want to go thru that ever again.

Get you a GOOD neuro and have the MRI - you may have to go thru a few docs before you find the RIGHT one, but get one who will listen to you and work with you (and yes, most of us have been thru several before we hit on THE one - some are still looking).

And us wimmenz DO get CH (even if Bob P disagrees and says we gets meegranes ::)). If we keep getting the "proper" diagnosis we'll probably outnumber the macho men before long (that ought to start something!).

Hang in there and stick to this MB. We're here to help. But start looking around for a doc NOW. That's really a BIG step.

Hugs BD :-*

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

I never got an MRI or any sort of scan for my headaches. By the time I sought out medical assistance for them, I figured if it was some sort of brain tumor or other such unsavory disease, I would have been dead long before I made my appointment with the doc............my wisdom teeth removed.......

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.  :D

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.  :D

bejeeber wrote on Feb 9^th, 2010 at 1:11pm:

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.  :D

And to think I finally got my MRI after 17 years of sufferering, LOL!  If I had a tumor, it should be the size of a basketball by now, but I still went through with it since insurance covered all of it.  My new neuro ordered it along with the EEG.

Not all tumors are the growing kind.

Brew wrote on Feb 9^th, 2010 at 1:41pm:

Not all tumors are the growing kind.

Shows my knowledge on the matter  ::)

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.  :D

tsellers wrote on Feb 10^th, 2010 at 11:31am:

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.  :D

An MRI is standard procedure when diagnosing CH since the symptoms can closely mimic brain tumor. I imagine it is for just about every other type of headache that's not a run of the mill tension headache as well. Any doctor worth his or her salt will automatically want to rule out anything more nefarious.

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.

Read what I said again - Not all tumors are the growing kind. It is possible to have a stable tumor that causes many of the same symptoms as CH.

It's your head - do what you feel is best.

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.

I have to agree with getting an MRI.  I was diagnosised about 5 yrs ago, only had a CT scan and since switching to a new neuro practice am having my 1st MRI Thursday- and as others said here it is being done to rule anything else out.  My new Neuro did mention to me that some CH sufferers show abnormalities in the pituitary gland so he wants to make sure I don't have a tumor or anything like that. 
I am in a bad cycle right now and this dr is trying to end it or at least make me comfortable if there is such a thing.  changing my dosage of prevenative meds from 500 to 1000 mg of Depakote, I was on topamax but I lost to much weight on it and had to be switched off of it, Verapamil- I can't take due to low bp, so  Depakote is what i have to take.  It was working as a preventative but doesn't seem so now. 
What people say is true- what works one time for years may just stop working all together after a while.  But Depakote works great for my migraines- I get both and haven't had a migraine in about a yr. Topamax gave me migraines at least 2 times a month. it's a wait and see game every time you try something new.