...and even more information. When I have a CH and through the episode I develop a bump on the back of my neck. Someone in one of the forums called it a ganglion cyst. It looks and feels just like it is described and lasts until that cycle is over.

I suppose this is common also? Considering the overall experience it is pretty minor, but certainly interest.

A competent headache specialist, no. A pain management specialist I would guess about 20 years ago. What was I given as in a treatment plan? Zero. Until I found this sight I had never heard of anyone else with CH, let alone any form of treatment or prevention.

When they hit I focus on stopping them or slowing them down. I know the next three days are going to be tough no matter what, but I can do a lot to effect things.

For example. I just finished a cycle and made it through pain free (for the most part). "Shadows' and my face on one side feels like it is out of place (not sure if that makes sense). Congestion in that eye also and my shoulder and neck on that side are jacked, but I was able to hold off the actual CH. I should be able to stretch out my shoulder by tomorrow.

I usually have little warning, though I can see the signs from earlier in the day looking back. The way I manage them now is first, anything work related or which adds to stress I eliminate. I even avoid my desk chair or sitting for long periods of time. Why? The best pain escalation management I have found is focus and relaxation. I also start stretching my lower back, flexors, neck and shoulders.

Once they start I can not stop them, but in many cases I can prevent them and I can certainly control them until they hit a certain point through relaxation, focus, stretching and avoiding anything which adds to the stress. Once they get past about a level 5 (just learning this very cool scale) it is tough to do anything other than hold on until it is over. The higher it goes the less capable I am of addressing the pain.

I have studied pain management for many years for this and for one of my passions, Martial Arts. I can not attribute much help to MA, but it certainly added to my understanding. Tension triggers pain which triggers tension. Controlling this cycle as much as possible has been an amazing help to me. I would like to say I do not end up in the fetal position rocking and crying, but it happens seldom now and used to happen every time.

One concern is they appear to becoming more frequent the last few years. Where i would have 1 or 2 3x3 cycles a year now I may have 5. Not a good trend. I am hoping my recent move and new environment will help. We will see.

Lance, nothing would thrill me more than to find out they are not CHs. Possibly I describe something incorrectly. Please clarify which part does not sound like CH? I would love to challenge this diagnose and if it is wrong, find a solution.

They were much more sever for years. They have increased in frequency the last few years, but have become less intense the last year. From what I have read this may be a result of lifestyle change. I now live 100% Organic / local farm, down to raw eggs and milk.

Hoppy, you not butting in at all. This could not be more serious and I appreciate everyone's answers. Nothing would thrill me more than to be misdiagnosed and have a magic fix.

Though I had a previous diagnosis for CH, I am going to another specialist in a few weeks for another. I want to know for certain what is causing these headaches.

The quiz was one of the first things I did. Here are my responses:

#1) Do your headaches normally last LESS THAN 15 minutes?

Never

#2) Do your headaches normally last MORE THAN 4 hours?

I would say no, but they have. To be honest, I have never timed them, but my wife is going to start with the next cycle.

#3) Do your headaches normally switch sides from day to day or during a headache?

No

#4) When you have a headache, do you normally seek a quiet, dark place?

No, but I do separate myself from the family and I can not say I want bright lights or loud music.

#5) When you have a headache, do you normally want to be around other people?

Never

#6) When you have a headache, can you normally lay down and be motionless?

Not a chance.

#7) When you have a headache, can you normally go to sleep to make it go away?

Not a chance during the headache. Sleep is not an option.  However, if I see the signs I can sometime rest and avert one.

#8) When you have a headache, do you normally experience nausea?

No

#9) Are your headaches always on the same side of your head?

They have always been on the right side until this last cycle. I had one the left for the first time.

#10) Do your headaches normally wake you up from a sound sleep?

No. They would if they were during my sleep. They almost always come at about 6:00pm.

#11) Do your headaches normally occur at the same time of the year and same times each day?

Same time each day and the cycles currently come about 3 months apart and last for 3 days for 3 weeks a week apart. In other words, 3 days on and 4 off for 3 weeks.

#12) Do you normally experience a stuffy nostril on the same side of the face as the pain?

My face swells and I have congestion in my eye. I will have to watch next time for congestion in my nose.

#13) Do you normally experience a "droopy" eyelid on the same side of the face as the pain?

More like the whole side of my face.

#14) Do you normally go from totally pain free to totally debilitated in 5-10 minutes?

As far as the headache, yes.  However, I can feel it coming in my back and my shoulder of the side it is coming on.

#15) Do you normally go from totally debilitated to totally pain free in 5-10 minutes?

Again, for the headache, yes. However, my whole body suffers through the whole cycle and for a day or two after.

#16) When you have a headache, do you walk, pace, bash your head, thrash, scream?

yes, yes, yes, yes and yes.

I do not expect a diagnose here, but all comments from those who also suffer or have specific understanding (a spouse for example) are welcome.

Thank you for listening. It has been a lonely journey thus far.

Michael

Our collective experience with pain centers has been quite poor--with Cluster. Majority of neurologists have meager training treating complex disorders. Formal research has shown many Cluster folks wandering from doc to doc for years before finding the knowledge/skill needed to help them.

All boils down to, use a HEADACHE specialist, if at all possible.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.

Lance, you replied, which either means you are terribly bored in life or actually care. I suspect the later. I am trying to solve a problem which has effected my life for over 30 years. All information is good information. I can not deny that the doubts of others produces a certain angst because of the severity of this condition, but what if they are right? What if there is something truly life threatening which I ignore out of ignorance, arrogance and/or fear? Lance, I welcome your thoughts and comments.

The 15 years of Combat Jujitsu training / teaching has a benefit. I was trained in deep relaxation, focus and energy flow specifically to address intense pain, as in bones and joints being crushed. Tension is the fuel of all forms of pain.

This only works to abort an attack if I catch it in time. This is not to say I am pain free, but it does often prevent it from reaching extreme levels. Granted, extreme to one may be easy to another. If I do have an attach, it helps me to stop the 'pain - tension - escalation' cycle.

If it is confirmed confirmed that what I have is CH and that my MA training effectively helps me, it is both good and bad. It is not likely something which someone can learn from a book, therefor the information is of limited help to others. However, I am thankful for the help it has given me.

I am emailing with the 'pain management' Doctor. I will watch the dialog closely. What I do like about her is her specialty is Integrated Medicine, so she will be looking at this holistically rather than symptomatically. In my dialog today I will suggest to her that I need a headache specialist specifically. We will see what she has to say. In my experience with her if she believes she is the wrong person she will get me to the right one.

Thanks Lance, Hoppy and Bob for your continued dialog. This has been very helpful and encouraging.

Michael