Hi - i have had CH since the age of 15years old but have only been officially diagnosed for the past couple of years.

For my CH i use O2/Melatonin 12mg/Kudz/Magnesium/Taurine & Imigran injections - !!!

It as been trial and error like everyone with CH but on the whole its "better" than it was this time last year. I have just finished (well think so) a 8wk cycle that ended with kip8

My attacks are always on the left - my left eye is permanently droopy now but i can live with that.

For the last 3months i have been having vibrations feeling in my head - mainly on the left to the back of my head/through my head to my eye and down the left side of my face - just  occasionally the sensation spreads across the whole front of my face. This happens every single night now - not one night passes without this.

Sometimes the vibration is a low feeling - it does vary from low intensity to very high......
The only way i can describe  - have you been to a funfair - there they usually have one of those "fun" machine inside one of the arcades - you sit in a seat/put your money in/grab the handle bars and hold on whilst the handles vibrate...starting at a low vibration all the way to extremely high  - most people cant hold on very long.....well thats what it feels like.

I went to see my neuro - who as been great with treating my CH - with knowledge and understanding and letting me decide how i would like to be treated, including the non medication way.

She explained to me that this "vibration" i now have in my head is because of the the attacks of CH that i have had for so many years - that it as "frayed my nerve endings" that it was nothing to worry about - nothing could be done for it  and in time i would get "used to the sensation" It may or may not get better????

Mmmmmm lovely ......its doesnt hurt as such (well as you know ch pain is so severe - nothing - NOTHING compares) but when the vibration is really high - its sooooooo urrghhhh....drives me mad to sleep (sleep is diff at the best of times)

I wondered as ANYONE had similar AT ALL!!!!!!!

One last thing to add is that after all these years the gp decided to get me allergy tested and it turns out that i am severely allergic to,

Tree pollen
Grass pollen
Birch trees
Bird feathers
Cats
Dogs
House mould

But thankfully not household dust LOL!!!

I now am on antihistamines fexofenadine, 1 tablet everyday....does other CH'ers find they have allergies too - is this a common streak?

Thanks everyone - wishing you PFD and nights   ::)

So your neurologist has diagnosed you with "frayed nerve endings?" Is that the official diagnosis or just her way of explaining what you are experiencing? Anyway, I'm not sure if what I experience is the same as you, but I do experience these very constant and annoying attacks, and while I call them buzzing, they probably are what we generally mean as shadows. Perhaps that is what you're having, too; if it continues you might want to consult another Dr. As for allergies, I have them, but not the same as yours. And while I had high hopes that bringing them under control would help the CHs, it wasn't all that successful. I did enjoy being sneeze free though. Anything helps! Blessings. lance

Hi Lance - thank you for your reply :)

Yes that was the neuros way of explaining the "vibrations" stating it was not un-normal with patients with CH. she didnt give any medical term.

I have tried searching on the net and have found it to be very common believe it or not - with all walks of life...male/female/young/old ......most have been unable to get any sort of answer from the medical profession so i guess its something again i will just have to put with and be grateful (and i am) that it isnt what i would describe as pain

This is like my 2958028935th post to older posts that nobody may be reading anymore, but it's all so interesting and I must share...

So. Yeah, I get that vibrating in my head. I've had it get so intense suddenly it dropped me to the ground. The last time was the first really hot day we had this spring. I was fine til i went outside in the heat for all of 2 minutes. I had just been all through an air conditioned grocery store and then went back out, trekked across the lot to the car, and the buzz took over my head and I started to feel myself "float", basically ended up draped over the hood of the car.

Once I completely 'lost my body' when it really took over. The buzzing just started and got very intense, and then woosh....could not sense my body one bit.  No change in consciousness, just couldn't see, hear, and had no sense of my body, I was suddenly a ghost in space. But I knew what was happening and where I was....very odd. I didn't lose time or feel like I had been unconscious or asleep or anything. Just lost myself completely except for my thoughts.
Vision and hearing and feeling in my body was back in under a minute and here I was laying in a giant palm tree planter that I'd apparently toppled over into, with people staring at me lol Got up and walked away like nothing had happened, meaning, felt just like I had right before it hit. (which was fairly good, that day). This was on vacation in Hawaii. 2nd day there. I had been waiting outside while my friend ran into a really crowded store I decided to avoid. She missed the whole thing and hardly believed it, it was all that quick.

1st few days on every vacation/trip I've EVER taken to a warmer climate, headaches hit soon as I'm off the plane and into the heat. That's interesting to me. And most of these hit in sudden heat - hot room, heat waves, etc. Interestingly, so do most of my headaches.

They usually feel like they start in the back 'chunk' of my head or back half I guess, and then spread to take over my whole head sometimes. Sometimes if it tries to take my body out I feel it sorta 'trickle' down my spine and get the buzz feeling extra 'vibraty' in the base of my skull, but usually it subsides before I actually start to lose my body, or after a split second of feeling like I shrunk an inch or two. The vast majority of the time, it's a few seconds of the buzzing and nothing else happens. Rarely is it happening right alongside headaches but before or after. Mostly after, like next day, after Ive felt normal for a little while.

I don't get it at night really, unlike you.  It HAS happened and it is disturbing to sleep, and when it does finally happen at night it seems to be every night for a few in a row, but that's very rare for me.
I've had severe headaches which resemble, and have not been officially diagnosed as cluster headaches, since I was 7, so if my nerves got "frayed" I guess they had plenty of time to get that way, but it sounds like a pretty shoddy description of what is going on. Anyway if anyone learns anything more about this I would be fascinated to hear more.  [smiley=gocrazy.gif]


EDIT: I just wanted to clarify (if it didn't seem apparent) that I don't get the buzzing IN my body. Always just the buzz in my head. But that sometimes it suddenly leads to me losing all sense of my entire body if it's particularly intense. But most of the time I just get what you described. And also, if anyone else finds their buzzing sometimes causes this, I am curious to hear about it.

Hi - thank you for replying to my thread  :)

It was back in April this year i put that on here and didnt get much response so maybe its not as common as my Neuro said. It as improved since then (thankfully) i still get it regularly but less intense and not every night now.
I started a new regime at the end of april.....maybe it was this that as helped??? Who knows????
My CH as improved since then i have had SEVEN WEEKS with out out any CH pain (after 30months of being chronic)  ::)  ::)  ::)


Below is what i am now using to treat my CH, my new regime

1.10,000 iu vitamin D3
2 .2000mg omega
3.500mg calcium
4.250mg magnesium
5.25mg zinc
6. 3000 mg of Calcium Citrate
Taken in the morning with fruit juice ( the citric accid in the juice helps it all work)

7. Melatonin 9mg - taken 30mins before bed (my worst attacks kip 10's are always 1am so the Melatonin for me as been a great aid
8. o2 - 15lpm with non rebreather mask
9. Sumatripan injections - using the extended method

Though the last 2wks i have been have low shadows again??? I always hang on to "hope"........was certain i had found the right combination for me ..........i will just take each day as it comes and "hope" all stays well.....

The fear always stays with you.....pushed to the back of your mind when pain free......low kips/shadows then in a blink of a eye "ITS" back with you - fear of kip 10's.....i try so hard to not let "IT" bother me...stop me from living my life the way i want to

Anyway i'l stop blabbing on ....thank you again for replying to me - i will keep my fingers crossed for you that the vibrations in your head improve as well and you get the help you  need for your headaches

Wishing you PF days and nights

Steph  :)

I haven't noticed vibrations, but I've had popping in my head, like driving tru the mountains and your ears pop, the last 2 weeks. My clusters seemed to be going away during that time (it had been 8 weeks and that's my ususal duration) but was up every 90 min with short clusters last night. I've had migraines during the day too. It is totally changing on me.