Hi all.  This is probably going to be hard to understand but here we go.  I have been diagnosed for a year now.  I have noticed these symptoms for about 6 years, possibly longer.  I have had 2 EEGs, 1 Cat Scan, and 1 MRI.  My major problem with these headaches is the symptoms that I experience.  My headaches are severe but I can deal with them.  When a cycle starts for me the major symptom is being off balance.  The only way I know to describe it is having a drunk body but a sober mind.  This lasts the entire cycle.  My doctor said he had never heard of this and just kinda dodged the problem.  This effects my blood sugar of all things.  Other doctors thought i was Hypoglycemic and I tried for years to just up my sugar intake.  My vision also takes a hit.  My eyesight is not great to begin with but during the cycle it becomes worse.  I have also noticed an issue with my speech.  I stumble on my words alot and have to concentrate when speaking. I struggle with daily tasks that are as simple as walking I have to put much more effort into everything I do because I just can't focus long enough on what needs to be done. These cycles affect every bit of my life. I have mood swings and it just seems like my IQ drops down 20 points during every one of these cycles. After keeping logs I now understand that this is all linked to the headaches.  I average 2 cycles per year and they last 6 to 10 weeks.  My last cycle started in March.  I had a two week period of no headaches then another cycle kicked off.  FUN.  I feel great when my cycle ends and have no problems with my blood sugar or any other symptoms.  I feel like a 27 year old should.

So, is anyone else having the same problems?  I could live with the headaches just fine if I could get rid of the other symptoms.  My doctor prescribed .25mg of Xanex for 6 months.  He said this would take care of everything.  I guess we have all heard that before.  No help with the meds. I can get rid of a headache with Advil and caffeine so I don't feel that I need to be on other meds for the headaches.  Any help is appreciated.

Jory

Looking at the whole complex of symptoms it would be misleading, perhaps serious, to treat the headaches as if they were the core problem.

It might be possible to effectively eliminate the headache pain but it may be at the cost of misleading you and your doc from seeing the whole picture.

Appears that you need a doc who is more skilled at doing a comprehensive diagnostic work-up. There is simply too much going on for you to seriously/safely use any headache treatment advice you can find here.

Simply, treat all these symptoms as a single package, which need to be understood as a whole.

Hmmm, doesn't sound like cluster. It very well still could be, but cluster headaches don't typically have the neurological disturbances you are talking about. They can, however, be paired with migraines that can produce these effects.

You'll probably need a really knowledgeable headache specialist to get to the bottom of this.

Have you tried prochlorperazine? Trade names include Compazine, Stemzine, Buccastem, Stemetil, Phenotil.

While its primary use if for nausea/vomiting it is also used for treatment of vertigo/ dizziness so I am wondering if it would be of benefit for your feeling of being off balance.

It also has some benefit in relieving pain in headaches (I think mainly migraine). Not sure if this effect will work for CH as well. Prochlorperazine is now a first line drug for treatment of  headache in my local ambulance service.

Maybe it could be of benefit, maybe not. But could be worth a try if you haven't already given it a go.