HI there my name is Brenda and I am new here but, like most people here I am not new to the horrors of cluster headaches. I have been fighting off these vicious monsters for nearly 13 years. I have done research of my own and often think I am more aware of my treatment needs then most Docs’ I’ve seen. I find myself becoming more and more frustrated. My biggest frustration is having a nurse/doctor refer to my headache as a migraine or form of. Personally I would much prefer to have such a headache. I live in a small city on the east coast of Canada. (New Brunswick) where finding “good” health care is becoming more and more difficult and the waiting list are at incredible lengths. When I was first diagnosed with CH’s I did see a Neuro and was made to feel that my CH where of my own fault as I am a coffee drinker and smoked. IT was at that moment I felt truly alone in my losing battle  against  Cluster Headaches.
I am an Episodic Sufferer and currently on Prednisone. I have also found massage therapy to help while going through a “cluster cycle”. Typically I am a spring/fall suffer but for some reason perhaps the colder spring my CH cycle has decided to hit me now.

Hello Brenda,

Sorry you have to be here but glad you found this place.  There is so much knowledge here, it is incredible.  Don't be afraid to ask questions because you will be amazed at the quality of answers you will get.

I am just out of cycle myself.  It was a rather short one because Verapamil worked like a charm for me this time.  Are you taking only Prednisone?  Nothing to abort a hit like O2 or Imitrex?  Anyway, I wish you a very short cycle and lots of pain free days just ahead.

I will be visiting New Brunswick for the first time next week (Cap Pelé).  Can't wait to hit the beach and endanger the lobster specy... ;)

Take care!

miCHel

Welcome!  I'm a supporter, but know the ins and outs of this beast intimately.

Read all you can here and ask as many questions as you need.  Someone much more knowledgeable than me will come along and answer them.

I'm glad you found us.  Welcome Home.

fuzzy wrote on Jun 29^th, 2009 at 11:33am:

My biggest frustration is having a nurse/doctor refer to my headache as a migraine or form of.

Don't take it personally. Many times doctors have to refer to it this way (proper diagnosis coding) in order to get insurance companies to pay for treatment.

Thank you all!  I have spent lots of time here today just reading, it really is informative.

Michel: Yes, the only meds' i've been given has been Prednisone although I have done a lot of reading on the O2 which I am now looking into. Verapamil has been added to my research list. Again I feel I need to tell the Doc's around here what I need as they seem very unfamiliar to the CH hell.
I do hope you enjoy Cap Pele, its a very nice spot (about 2.5 hours from me) Be sure you get hard shell lobster!  :)

Welcome to what will slowly become your home away from and at home. Definitely check into the o2, as it is THE best way to combat Clusters.

Peace,
Carl D

Hi Brenda and welcome aboard. I just wish it wasn't because of this horror and the frustrations surrounding its diagnosis.

The best thing to do is stick around, read away and maybe download some information for your doctors. Here is one thing that helped me and the price is right:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
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. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. 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. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

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.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head 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.
I hope this technique is helpful and I wish you the best of luck

Charlie      

Welcome aboard!  

If you have trouble getting Verapamil you might check out Kudzu.  I switched over from Verap to Kudzu a couple of years ago, and find I get about the same relief without the side effects.  Do a search for it on the Meds and Treatments page.  

I also strongly suggest O2.  It works quite well for most here.

At the first sign of an attack slamming an energy drink with Taurene in it can help abort an attack or at least knock it back quite a bit for many of us as well.  If caffeine keeps you awake you might not want to use it for the night time hits, but it doesn't bother me any more.  BTW, your Neuro is neurotic if he thinks coffee causes clusters!  I use strong black coffee to help abort, and even as a preventative if I drink enough of it through the day.  It doesn't kill all of them, but it does make a difference.

Please keep reading.  DON'T hesitate to ask questions!  Most here will give you a good answer.  There are some very knowledgeable people on this board.  The rest of us ride on their backs! :P  You will find more knowledge here than in most Drs. offices.

Jerry

Warm welcome to your clusterfamily, Brenda! :)

Wishing you PF time,
Sanna