Wow, where do I begin? My name is Ben and I’m a married 33 year old father of 2 boys (5 and 2) living in southern New Jersey. My first contact with this beast came in 2002 where I awoke from an afternoon nap with the most excruciating pain I had ever felt in my left behind my left eye and I was promptly transported to my local ER thinking the worst. By the time I left, the pain had subsided and I was told it was just a sinus headache and that was it. Just the one occurrence, so I figured, wow, worst sinus headache ever.

WRONG. A year passes, and then the first real cycle begins. Still not knowing anything about cluster headaches, I make an appointment for a neurologist thinking the worst. After a battery of tests (MRI, EEG, EKG, etc.), she thinks trigeminal neuralgia. I am prescribed Neurontin and a tapered dose of Prednisone. Looking back now, this actually works to stop my cycle, but at the time, I had no idea that it why it worked. I just knew the pain stopped.

Two years pass, BOOM, pain strikes in the middle of the night. I knew this pain, but had no idea why it was back. Go back to neurologist, discuss further, make discovery of cluster headache diagnosis. Get the same prescriptions as before and it breaks the cycle. Life is good for now. Apparently I was on a 2 year remission cycle. Having read some of the stories on this message board, I consider myself quite lucky compared to many of the sufferers here . I don’t seem to get them as often and I’m not sure why that is. However, I feel like my cycle is changing. Especially the one I’m in now.

I’ve have never used abortive medicines until this cycle. I have always suffered through them as I was uneducated and unaware of their existence. I only found this website only recently as my depression regarding this headaches gets worse. For this cycle, I am taking 150mg Topamax nightly. I was trying Maxalt as needed for attacks with little or no effect. I am now using Imitrex injections for really really bad attacks when needed since they are really hard to come by. They are wonderful, but I know I have to limit their use due to rebound HAs. I have yet to try the O2. Why is this so hard to come by? Makes no sense.

I do have some questions that I hope you long time sufferers and more educated clusterheads can help me with. I understand that Redbull can help abort an attack, however, I also suffer from anxiety attacks and these types of energy drinks bring on anxiety and heart palpitations. Is there anything else similar that could help without that effect?
Also, if anyone has suffered the unfortunate transition from episodic to chronic clusters, what was the difference you noticed? I only ask because as I mentioned, this cycle I am in now is different than anything I’ve experienced before and while I understand the cycles can change, I’m quite paranoid about them switching to chronic.

Many thanks in advance for your help and understanding and listening to my story.

As an aside, because of the medication I have taken for clusters, the steroids have caused avascular necrosis on both of my hips and the Topamax caused kidney stones. Wonderful.

Your last para first: You were on Pred much too long. We use it for about 10-days to instantly stop active attacks and, at the same time, begin a long term preventive med which you use for the duration of the cycle.

Many of us strongly recommend working with a headache specialist, if at all possilble, because many docs receive such poor education in complex headache disorders and, often, poor experience.

Essential that you start to learn about CH so that you know as much as possible. Your best protection from poor/inadequate treatment.
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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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Good information in the buttons, left. Start with OUCH. But coherent/cohesive reading is your best way to start.
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This outfit offers a number of titles, each covering a separate medical condition.  Good, Written in non-technical language. Broad coverage of CH--causes, treatments, etc. Worth exploring the sample pages.
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Suggest the first title; not technical, easy to digest but covers the important stuff.
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A real depth of experience here but it takes some time to organize and comprehend what you read--until you have sufficient knowledge to be able to digest many of comments you will read.

You will find this site worth our explorations:

A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

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Print the PDF file, below and use as a tool to discuss options with any doc you see.

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What Bob said! A headache specialist neuro is really your best shot at a long term effective regimen.

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Read this, print out the appropriate material and demand 02. It has almost completely eliminated my use of imitrex. Last cycle went 8 months...(like you I started sweating going chronic, as others will warn you, it's not worth worrying, it either happens or it don't!)....in 8 months, I doubt I did 5 imitrex jabs. The 02 works almost as fast as the trex, no side effects, and a boat load cheaper. My aborts run 6-8 minutes.

Welcome to the board, as Bob mentioned, educate yourself as much as you can, become your own best advocate. An educated CH'er hurts a lot less! ;)

Joe

Thanks for the replies guys. I will definitely follow up on the 02 and luckily, following Bob's advice, I found a headache specialist within 10 miles from house. So, I will setup a consultation and see what I can do with that person.

As far as moving from episodic to chronic...and I'm a chronic...you don't have to! So don't! Nah...what I really mean is you won't know, and it is not inevitable, if that's the path the beast will take with you. It isn't worth worrying about cuz in cycle, or chronic, you're going to deal with the hits the same way. Add melatonin to the list of things to discuss with your neuro, along with the symptoms you describe with Red Bull/energy drinks. Could be they're not related, but probably you'll just be told, well then don't drink them. The O2, even without Red Bull, is amazing. Let us know how you make out. Blessings. lance