Post by texashale on Dec 7th, 2007, 7:57pm
My name is Mike and I am pretty sure I have been having cluster and Migraine headaches most of my life, but CH almost every day for the last year. I just had my first neuro appt. the other day, (I have been trying to get the VA to help me with headaches for over 17 years, so I finally took matters into my own hands...) I told him that "according to my research" I was having cluster headaches. He said to me "there are different kinds of headaches now?" I was not impressed. Anyhow I described my symptoms; comes on really fast, feels like an ice pick, eye tears, sinus closes up, photophobia, phonophobia, etc... He said he thought it was a migraine. I know migraines, I have them too, I told him that too, but what ever. Does anyone have any advice on how to educate a doctor on CH? I want to be nice about it (which is rare for me, but I am trying to turn a new leaf... ;;D ) Also, how effective will treatment for migraine be on CH? Thanks in advance, and thanks for being here! Mike
Title: Re: Hi
Post by Rosybabe on Dec 7th, 2007, 8:11pm
have you done the cluster quiz to the left? it might help to figure out if it is cluster what you have.
I do have both CH and migraines but they are very different, no just the intensity of the pain but also the patterns and triggers and I can tell really easy when I am having one or the other.
It will also help if you have a headache diary. You can find one to download at :
there is a lot of information there about CH.
Wishing you lots of pain free time!!
Title: Re: Hi
Post by lorac on Dec 7th, 2007, 9:09pm
You might have to go through a few neuro's..
grab all the info you can from this web site, and go armed next time... If they are not open to it, then find another, and move on...
By all means do not take a bunch of drugs that they may or may-not subscribe to you.
Oxygen is the best for most.... so ask for it right away.!
Good luck.. It can only get better lorac
Title: Re: Hi
Post by Bob_Johnson on Dec 7th, 2007, 9:35pm
On the OUCH site (left) you will find a chart to compare the several major types of headache. Other articles there could be used to educate the doc. Best approach is to use material from medical sources vs. popular press stuff. Might consider investing in one of these books.
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.
Print these and use as a tool to discuss your options. They will carry more weight than our recommendations.
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen)
Treatment guidelines from Europe
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
European Journal of Neurology. 2006; 13: 1066–1077.
Download free full text:
(Thanks to "cluster" for link.)
Title: Re: Hi
Post by texashale on Dec 8th, 2007, 6:56pm
Yeah, I took the cluster survey, and it said I had CH completely. I thought about printing out sufficient documentation to prove my case, but didn't because 1) I didn't want to sound like a hypocondriac and 2) I am sure he is extremely busy and I am not sure if he would even have the time to look it over. neuro's seem to be in very short supply down here, and good ones even shorter. So trying different neuro's really isn't much of an option (El Paso, TX is the biggest back water po-dunk town on the planet.) Thank you all for you information. Mike
Title: Re: Hi
Post by tessistired on Dec 9th, 2007, 4:09pm
I am sorry you are suffering but very glad that you found this site and all of us within it! We are all family here and we help eachother out as much as possible...which now includes YOU!...I am still a newbie myself even tho it doesnt feel like it at all. I have learned so much and made such great friends.
This place has been sanity for me and I pray that we can be as helpful to you as everyone has been to me!
Wishing you Pain Free Days and Nights Always!
Title: Re: Hi
Post by Charlie on Dec 9th, 2007, 8:56pm
Glad to meet you but sorry it has to be because of this horror.
It sounds to me like CH and you need a different neurolgist. They can be a weird lot. Specialists. ::)
Anyway, you'll find a lot of good ideas and ways to deal with the thing. Here is one that made my day most of the time:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Title: Re: Hi
Post by BarbaraD on Dec 15th, 2007, 8:39am
Welcome to Clusterville....
And welcome to the world of confusion where doctors are concerned. Yep, we've mostly all been thru a BUNCH of them before we hit on one who actually would listen to us and do some good.
O2 - First line of defense (15 liters per minute with a non-rebreatable mask) caution - 15 minutes max - if it hasn't worked by then - it's not going to. Works for most of us.
Red Bull Energy drink - chug-a-lug a can at the first sign of CH - will usually abort one. Works for a LOT of us.
Coffee (strong) at the first sign of a shadow.
Melatonin at night before bed (will get you thru the REM sleep and kill the night hits - for a lot of us) NOTE: takes a couple of weeks to get in your system so don't give up if it don't work the first time you take it. 9-15mg.
Ice packs/frozen peas or heat (your choice - whatever works) to the affected side - helps some.
You'll notice I'm not saying "helps all" cause nothing works on everyone. These are things to try until you can get to a doc who'll help you with meds that "might" work for you. And don't get upset if the first thing he/she prescribes doesn't do the trick. Most of us have been thru a lot of stuff before we found our "magic bullet".
Our most "choice" aborts are Imitrex (injections or spray) or ergotomine (cafergot)
Choice prevents: are, of course O2; lithium, verap, and topamax.
A lot of us have migraines also (and some other types of HA thrown in for "fun") and yes, CH is by far different from the others and much worse.
There's a lot of information on the left side of this board. READ READ READ. Copy what you need and take it to your neuro for HIS/HER education. Most of us have found over the years that WE must be agressive in OUR treatment to get anything done. Find a GP you can work with as well as a neuro.
Good luck and let us know what happens.
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