I went to the link that Bob gave me and read the information. Funny, I never really considered it a "Disease". I always thought it was a "Disorder", just a dysfunction of some sort in the nerve or hypothalamus. Please don't quote the dictionary I did go read the definitions.

Anyway after reading all of the info, I suddenly remembered that when I was 16 years old I had Bells Palsy just in the facial region and that was the day after getting my wisdom tooth pulled, same side the CH occur on. That occurs in the 7th cranial nerve too. I remember they did MRI and Scans then found nothing, administered a round of steroid treatment and that was that.

When I was 21 in the first trimester of my pregnancy is when I got my first CH. Then during each pregnancy they would be at the beginning or the end. I thought maybe it was hormones that set them off then. It said in the report that hormones did not set CH off. I ended having episodes that happended when I was not pregnant too.

Could it be a trauma to the 7th cranial nerve that is the underlying cause of CH, and not have anything to do with the hypothalamus?

The only reason I say this is because my daughter the one that has had the ventricular shunt has a very rare condition called Rhombemcephalosynapsis. All that big word simply means is that the Cerebellum is fused together and there is no vermis. She has an irregular shaped cerrebellum but has no issues. Her spinal fluid does not drain, but there are many hydro kids that have what the call the normal cerrebellum. The condition Rhombemcephalosynapsis is very very rare.

I do not know what the heck my hypathalmus looks like but even if it were not the norm, maybe its the 7th cranial nerve that has been damaged and has become dysfunctional and/or sensitive. Maybe the dysfunction throws the hypathalmus off.

I found this interesting from the article

"Abnormal blood levels of prolactin, testosterone, thyroid stimulating hormone (TSH), and cortisol may be linked to perturbations in the activity of the hypothalamic-pituitary-adrenal axis."

How many of you are anxious type people, hyperactive? Thyroid problems? Hypoglycemic?

Maybe it is a total hormonal imbalance.

Maybe I am just totally denying the inevitable, that it is going to return eventually.  :-[

Maybe I am just totally denying the inevitable, that it is going to return eventually.    Maybe!!! ;)

But don't let that stop you in your searching and questioning. that's how we discovered oxygen,lithium, verapamil, shrooms, because people keep questioning and searching. You've already gone way over my head.......Monty and Bob are 2 of the more learned, research types who will probably chime in on some of your theories.

That being said, remember our creed. Live your life between the hits, but ALWAYS be ready to do battle.

Cassie, we will love you for knowing how to use the computer and paragraphs!! <bg>

Your question raises a recurrenting point of confusion. When is CH not CH.

CH as a primary headache disorder arises (current thinking) from or associated with the hypothalamus.

But CH symptoms can arise from a separate disorder so that a good diagnostic work-up is essential to locate the real cause. Normally, extensive testing isn't done unless one's history suggests an underlying source of the "CH-like" (term often used in the literature)
headache.

Clearly, an issue you need to throw at your headache doc.

And, if you are not working with a headache specialist, suggest you consider finding one. Our collective experience, plus some studies, indicate that neurologists receive remarkable little education/training in headache disorders. Studies have show that many folks take from 2 to 6-yrs to get a good Dx because of this situation.
-------
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.  Call 1-800-643-5552; 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.
======

Re. role of anxiety. If you are serious about this issue I can post a couple of longish articles on the question but they are not very conclusive. Overall, yes, anxiety & depression can intensify both the perception of pain and contribute to disability of numerous underlying disorders. There is some evidence that certain personality types are more reactive to their body's "signals"/sensations, etc. so that they may experience a kind of hyper-reactivity.

But one issue at a time. Too much, especially of these outlying potentials, makes it difficult to get on top of the basic CH issue.

cassie wrote on Apr 4^th, 2009 at 1:13am:

I went to the link that Bob gave me and read the information. Funny, I never really considered it a "Disease". I always thought it was a "Disorder", just a dysfunction of some sort in the nerve or hypothalamus. Please don't quote the dictionary I did go read the definitions. Anyway after reading all of the info, I suddenly remembered that when I was 16 years old I had Bells Palsy just in the facial region and that was the day after getting my wisdom tooth pulled, same side the CH occur on. That occurs in the 7th cranial nerve too. I remember they did MRI and Scans then found nothing, administered a round of steroid treatment and that was that. When I was 21 in the first trimester of my pregnancy is when I got my first CH. Then during each pregnancy they would be at the beginning or the end. I thought maybe it was hormones that set them off then. It said in the report that hormones did not set CH off. I ended having episodes that happended when I was not pregnant too. Could it be a trauma to the 7th cranial nerve that is the underlying cause of CH, and not have anything to do with the hypothalamus? The only reason I say this is because my daughter the one that has had the ventricular shunt has a very rare condition called Rhombemcephalosynapsis. All that big word simply means is that the Cerebellum is fused together and there is no vermis. She has an irregular shaped cerrebellum but has no issues. Her spinal fluid does not drain, but there are many hydro kids that have what the call the normal cerrebellum. The condition Rhombemcephalosynapsis is very very rare. I do not know what the heck my hypathalmus looks like but even if it were not the norm, maybe its the 7th cranial nerve that has been damaged and has become dysfunctional and/or sensitive. Maybe the dysfunction throws the hypathalmus off. I found this interesting from the article "Abnormal blood levels of prolactin, testosterone, thyroid stimulating hormone (TSH), and cortisol may be linked to perturbations in the activity of the hypothalamic-pituitary-adrenal axis." How many of you are anxious type people, hyperactive? Thyroid problems? Hypoglycemic? Maybe it is a total hormonal imbalance. Maybe I am just totally denying the inevitable, that it is going to return eventually.  :-[

Some people HAVE found relief by getting hormone levels checked, and treating certain imbalances. You might want to look at 'WHY don't we pay attention to this?!"

It's specifically about Testosterone. Some women do not get hits while they're pregnant. The person who started that thread hasn't had any since a hystorectomy, if I recall correctly...

It's the same with thyroid imbalances, too. Some people find relief by correcting that.  Along with other things. Hopefully, the beast will stay gone for you!

PFDAN
Mystina

Here's the link to "WHY don't we pay attention to this"
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I think there is something to this.  During the time I was going from Dr to Dr to try and figure out what the pain was in my head, it was discovered that my thyroid was messed up and the right half had to go.  Coincidence?  I don't know.  Conventional meds didn't work out so well for me and alternative meds do work.  If I ever get to the place I was before with my ch, I will look into it further.

Beth

midwestbeth wrote on Apr 4^th, 2009 at 9:54pm:

Here's the link to "WHY don't we pay attention to this" START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE I think there is something to this.  During the time I was going from Dr to Dr to try and figure out what the pain was in my head, it was discovered that my thyroid was messed up and the right half had to go.  Coincidence?  I don't know.  Conventional meds didn't work out so well for me and alternative meds do work.  If I ever get to the place I was before with my ch, I will look into it further. Beth

Beth,

I am getting nowhere with that link it takes me to the home page, or is that where I am suppose to go. If so where to from there I could not find that topic.

What alternative meds are you using?

Are your CH episodic?

Thanks
Cassie

I can't get it to link...must be doing something wrong.  It's on the meds board, scroll down on the on the first page.  

I use 02 to abort and rc seeds as a prevent.  For info go to clusterbusters.com

It's not a treatment for everyone.  I had tried many other Rx meds without success and this is worked for me.  YMMV

I've been chronic from the start.  It's not so bad not, maybe one or two hits a week with occasional minor shadows.  02 takes care of it.  :)

Beth

Here be the link....
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE