I have chronic Ch's which started about a year and a half ago. At first they were 3 times a week, then a week off before they rolled around again.  The past several months they have been every night.  Altho the pain is freaking insane, what is driving me more mad is that during my waking hours I feel like I'm a walking zombie.  I have trouble functioning and focusing.  Almost a vertigo effect. I feel like I have bumblebees in my head.  Almost a drunk effect and I absolutely hate it and am very frightened by it.  I just want to FEEL NORMAL.  I thought for a while that maybe I was having anxiety attacks because I knew what the nighttime was going to bring.  But I can't be staying in a flux of anxiety all the time...or can I?  Does anyone else experience this sense of hopelessness and the 'not with it' feeling?  I've always been such an upbeat person and ever since clusters have entered my life, it's a living hell.  I want my life back.  Am waiting for a call from my neurologist regarding the oxygen.  Will try the melatonin as well as I do not want to get into the perscription drugs and the side-effects they bring.  BTW..has anyone tried accupuncture with any success?

so what you're saying is that I'm having side effects from the headaches themselves since I'm not taking any drugs to keep them at bay?  I guess what I'm asking is does anyone else feel this way after a cluster on a daily basis?  I'm trying to see if this abnormal feeling is normal for cluster sufferers?  Am I making any sense?  Sometimes I question even that...it's like I'm going crazy.

What Marc said.

   Potter

I certainly don't mean to scare you. It's just that you wouldn't want to let something treatable get past you long enough to become really bad.

Has your CH history ever given you symptoms like this before? Perhaps a simple conversation with the Neuro who has your image file would be a simple, easy place to start.

Marc

Sleep deprivation and the constant fighting off of the pain can be draining and always wipes me out.

Talk to your neuro about the O2 as an abortive and also discuss an appropriate preventative.

If I made a list of 1000 potential management treatments accupuncture would not be on it.

Grace-
I call what you are describing 'cluster brain.'  My sister and I speak often to one another about it.  We have been episodic for many years.  The further we are into our cycle, the worse it gets.  If you are chronic, which I know nothing about, I can only imagine how it would be.  The cluster brain is the worst for us.  That's what makes me miss activities, etc. because it is too embarrassing.  It is a very insecure, out of body experience that you feel like everyone can see.  It is certainly not medication related because I, too, take as little as possible.  I have never taken pain medication for my headaches, but that's what I feel and act like.  My sister is lucky because the Imitrex works so well for her that it has prevented her from ever getting into that feeling anymore.  She isn't afraid of the Imitrex and in my opinion takes too much sometimes, but it has prevented her from all the build up over time that we think causes that cluster brain feeling.  During a cluster, your head goes through an enormous amount of stress.  She doesn't have it anymore although she was left with permanent eyelid droop from the years prior to Imitrex.  I just finished (knock on wood) my 8 week cycle and have had some luck with low dose Zyprexa for that feeling.  I am taking 1.25mg which is half of the lowest dose (2.5) then will go to half of that.  I did this already a couple of weeks ago, but didn't taper well enough or still in shadows so I am doing it over again.  I hate medication, but I hate that cluster brain almost worst than the clusters.  The headaches are terrible, but they are over soon and usually late at night, but the cluster brain goes on and on.  I hear you!   
Joni

Just want to add a "ditto' to what Marc said and a big huge....save your money on the accupunture thing.

I've been chronic for 22 years now and have never had the after-symtoms you describe.   Tired and worn out, sore from banging my head, yes...but not the vertigo or bumblebee effect.

Hi Grace and I'm so sorry you have to deal with this horror. I too agree with Marc. Accupuncture is way down the list for serious treatment.

For me anyway, so is anything having to do with Chiropractors. I realize your experience was for something other than CH but I doubt it had anything to do with your developing CH either.

While I had only episodic CH, I understand your zombie feelings...at least until it was diagnosed. It did knock me around a bit but I had a lot of help from a neurologist and a lot of RNs and medical types in the family. They let me be and reminded me all the time that I wasn't about to explode or worse.

I'm also wondering if some of your drugs might have some other kind effect. Our reactions are not always what you find on line.

From what I now know, O2 has the best record here.

Good luck and stick around.

Charlie

Joni...all I can say is a big THANK YOU!  As I would not wish this on my worst enemy, but just the fact that someone else feels the same way is actually a relief!  I think it's a vicious cycle...the headaches, then the weirdness, then worrying about the weirdness only makes it worse, and on and on we go.  And yes...like you said, I do believe the cluster brain is worse than the headaches.  Not in form of pain, but if IT would go away and let me be normal, I could get thru the headache pain.  God Almighty this is crazy. 
Last night I tried 2 Kudzu pills and altho I had another CH, it never materialized into a full blown attack.  Don't know if it was the kudzu, or just coincidence.  Will check out the zyprexa.   
THANKS AGAIN EVERYONE

Hey Grace,

I get a real burnt out "fried brain" synapses not firing well kinda feeling after a CH.

I've used acupuncture with tremendous success for tendonitis, but not CH. People don't seem to respond to it for CH.

Understood you don't wanna use presc. drugs..have you noticed the great success some are having with Taurine (often along with the Kudzu and melatonin you are trying) for a preventative? Not to mention mother nature's own RC seeds.

I never ever take any kinda drug myself when out of cycle, but I'll sure take 'em to avoid CH attacks! I feel that use of imitrex is actually less damaging for me than letting a CH hit rip my brain up.

Marc123 wrote on Oct 6^th, 2009 at 2:55pm:

I'm exactly like this.  The worse is at work in the past without meds trying to fight out an attack.  I would just leave and sit in my car and ride it out.  At home, I just disappear to the bedroom and make space for the dance....that is until December when I get O2.
I'm in remission at the moment so i'm in the clear.

1)  It is great that we have discussed the "Cluster Brain" feeling.  I don't remember seeing it discussed before.   


2)  Does anyone know the safety and possible side effects of Kudzu?  Also, where do you get it?   

you can get it online. I used to get mine from iHerb. There are different forms and also formulas with kudzu in them. I used a liquid form concentrate in grain base alcohol and dropper for 14 months. Last time I checked they have a liquid version in glucose syrup, but both that and the tablets didn't work for me.

If you are diabetic and take meds, kudzu can make your medication work better, so you should monitor that if it's an issue.

It's great stuff.  It also completely cut out the migraines I used to have along with high cycles. I have not had a migraine since.

Charlotte

ps I'm chronic ch & also have some other shorter headaches.  Marc & Potter both mentioned watching out for changes. They can indicate something additional is happening, and sometimes your neuro can help you with it.

For me, the combo of headaches mess up my short term memories sometimes and is very distracting when they all occur during the same time frame.

No meds actually stop it for me, but they make it easier to bear.  The latest thing the neuro tried is botox and it kills the pain from the outside although the headaches still occur, and works in varrying degrees for 6 to 10 weeks and can be repeated as long as it still helps.

If you get O2, please take articles that stress high flow so your neuro understands it needs to be at least 10 & much higher. The older articles say 8 and that works for some of us but most need higher flow.