I am a newbie to this CH forum.. I have been suffering from cluster headaches for abt the last 15 yrs...Going 2 years sometimes between flare ups..They have started again abt 3 weeks ago and seem to be taking their toll on me physically and mentally more than they ever have..Im relieved and saddened by finding this website...Relieved cause i know people r out there that know exactly what i have been experiencing without me trying to explain it!..cause most people just look at me and say "oh yeah i know..I (or MY wife) has migraines all the time"...it upsets me and irritates me to no end!..I want to ask them "Have u ever tried to ram ur head thru a wall or plate glass window during a migraine!?"...or " are u petrified to sleep at night every night cause u KNOW a migraine will wake u at almost the same time!..along with the rest of the house cause of ur moaning or screaming and moving cause of the pain!?"...i want to say those things, but i dont..cause if u dont suffer from cluster headaches, or live with someone who does, there is almost no way to describe the pain or what goes on...the only way i can decribe it is the area from my right eye, temple, inner ear and upper neck is made up of the wires found n a toaster...and for some reason almost the same damn time everyday and night someone wants to torture me and walks by and presses the toaster button down!!..anyway, enough of my ramblings...i just want to introduce myself and say its nice to b here and i hope to find support and give support where i can...and also wondering if there is anyone else from the amarillo TX area that r on here. Thank you for reading!

At the end of this post is  a list of doctors other CHers have succesfully used. If you don't already have a knowledgeable doc, these would be a great place to start. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. I’ve had CH for 35years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post " 123 pain free days and I think I know why” It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH!

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can. I'll be in The Big Band National park area of Texas starting on Friday, doing a bicycle camping tour through your national park.  ;)

Joe....what follows are the Texas Doctors other sufferers have used and recommended:


Abilene:
Dr. Rexford K. Anderson
Austin:
Dr. Robert M. Cain
Associated Neurological Specialties
Dr. Craig DuBois
Austin Pain Associates
Dr. Rajat Gupta
Headache & Pain Center

Dr. Marci A. Roy
Austin Headache Clinic
Dr. Sheila Shung
Conroe:
Dr. M. Vestal Caperton (PCP)

Dr. Gary Sharpless (PCP)
Sadler Clinic
Dallas:
Dr. Stuart B. Black
Dallas Headache Clinic
Dr. Steven P. Herzog
Texas Neurology
Dr. John Claude Krusz
Anodyne Headache and PainCare

Dr. Maureen Wooten Watts
Dallas Headache Clinic
Fort Worth:
Dr. John A. Sklar
Gladewater:
Dr. Warren H Hunt
Hugman-Kent Clinic
Houston:
Dr. Howard S. Derman
Methodist Neurological Institute

Dr. Herbert P. Edmundson, Jr.
Memorial Neurological Association
Dr. Leonard Hershkowitz
Houston Neurology Associates
Dr. Ninan T. Mathew
Houston Headache Clinic
Lori Meadors, PA
Houston Headache Clinic
Longview:
Dr. Richard Hamer
Diagnostic Clinic of Longview
Pasadeana:
Dr. Philip S. Blum
Houston Neurological Institute
Richardson:
Dr. John Harney

Dallas Neurological Associates
Tyler:
Dr. Preston E. Harrison
East Texas Neurology

Welcome to the toasters are us fan site. Read up, there is a lot here to help you.

Welcome! I like your toaster analogy, it's as good as any I've heard or used. And you're right, it's useless to try and explain this to someone who doesn't have them. Most people mean well, it's just they can't know what they don't know. Know what I mean? Enough of that. You don't mention what you have used to try and prevent or abort the hits. Joe has given you the rundown of our current and collective wisdom. If you don't mind saying, who was your diagnosing dr and what were you given? blessings. lance

Before I became a Cluster Headache sufferer, I believed anyone with Migraine type headaches, were just mean people who brought on at least part of the problem. I know this is how most non headache people think.

When we try to describe our pain they think we are either dying or mental. Sad but true. We are telling the truth as best we can, they are understanding the best they can.

Over time for me, my family has learned that what I go thru is not mental. After 24 yrs of missing important functions, they know something is wrong. Point being we have no choice in the matter, and accepting that can be as hard as accepting CH will not go away.

Don

Welcome to our dysfunctional little family, you are amongst friends. Read learn and ask questions, best site on the net for us head cases. Wealth of information and support.

I'm still waiting for them to go away, been sayin' that for 20 years...  :D

If nothing else, I'm an optomist.... ;D