I't seem that I have a hard time being comfortable outside of my home. Too many times I was caught outside my home and boy is it hard to go thru a CH. I don't hear anybody talk abouts this. Such stories I have being out and getting a CH. I do not go out alone . My first rule. Second, I always carry a bottle of Red Bull. This does seem to help calm down my CH. I have been out to dinner. Left real sick, just wade it out in the car. Not fun. been to a Magic game top bleachers, This was the hardest thing to get out of there and  finding the car. Sometimes I feel like why take the chance. I was once putting gas in my car. Left the pump, and sat in the car for about 15mins . Teh store attendant didn't know what to do. I begged him just let me run the course. I do have other proplems, I made it thru Breast Cancer, Mascetomey, This was easier than my CH's . Half way thru the treatment I started thease CH's . Nobdy believed me, For years. Then I beat cancer, but still had CH's. saw a nuri for 2 1/2 yrs. All he did was over dose me on Lithuim. Sop now I watch everything I do. Been waiting on the judge for Disability. 2005 started my CH's chronic!!!!!!!!!

I've never been on disability, so I can't help you with that, but I do have a question for you: You can get Red Bull in bottles?

Getting on disability is very hard for ch.  I had documented being chronic getting hit 8x/day everyday year round and responsive to nothing as a preventative.  and only imitrix and zomig really worked well for me.  I had two years of ch under my belt with tons of ER visits (8+/month) due to chronic migraines also.  I applied for disability based on ch, migraines and depression.  I am sure if you are chronic you understand what I am saying about being depressed.  It can consume your life.  I was suicidal and on an antidepressant.  I was awarded SSDI based on depression and it was a temporary awardment.  I had a review 6 months latter.  BY then I was diagnosed with schizophrenia and have had no problem keeping my ssdi.  But they were not about to give it to me for my headaches.  Good luck trying.  I would recomend you get a lawyer to help you.  I did my application on my own and was approved in 6 months but again not approved for ch.  Lawyer might be able to help you get it for that reason.      

I am currently on disability for CH and have been in the past.  I've had fights with the insurance companies but having a good doctor has helped a lot.  Normally I don't go until about a month into a cycle (4 attacks a day) but my employer has become inflexible and I went when I had my 1st attack (they didn't like me missing time sporadically).

So sorry to hear about your suffering Tamara. I started a new cycle a week ago, I typically for 25 + years have a cycle every year. 12/15 thru Jan// 6-8hits per day. The first 15 years or so I was undiagnosed and untreated. just helplessly let the beast have his way with me.
your words confirmed a long time opinion of mine that we suffer the worst disease of all. Whats worse? terminal cancer? Of course we don't die from ch but... well you very well know what we endure.
As for me, I find  when discussing this with ch brothers and sisters, I'm more comforted by honest venting, than anything else. Of course from time to time we must all think why me. but what I'm learning very quickly, from re discovering this wonderful group,is that I care deeply for everyone who touches me with their posts and replies/ instantly (unlike me generally) I now find myself caring about you. I wish for you (and me) some luck, some peace, some pf time. Hang in there my friend, I will try to do the same.
Re: disability, I suggest a lawyer specialist. They turn everyone down at first, the lawyer will greatly up your chances.
Saxman

Tkanks, for you comfort words, I do use Red Bull helps alot. What I can't believe how I go right to sleep after two consentrated red bulls. But I quess I just exhausted. I;m on verpermil, sometimes I think it works other time nothing works. As far as Disability I do have a lawyler. Since the CH's I was digonosised with Hep C. I have no Insurance. But for some reason I'm not affraid. Silent I guess, but deadly. I live and wake wit hthe only thing on my mine. Is CH. I try to be positive with my family and give them some relief of hearing about my pain last night. But I'm so tired. Wish god would let me go.!!!!!!!

Tamara wrote on Dec 20^th, 2009 at 3:59pm:

I't seem that I have a hard time being comfortable outside of my home. Too many times I was caught outside my home and boy is it hard to go thru a CH. I don't hear anybody talk abouts this. Such stories I have being out and getting a CH. I do not go out alone . My first rule. Second, I always carry a bottle of Red Bull. This does seem to help calm down my CH. I have been out to dinner. Left real sick, just wade it out in the car. Not fun. been to a Magic game top bleachers, This was the hardest thing to get out of there and  finding the car. Sometimes I feel like why take the chance. I was once putting gas in my car. Left the pump, and sat in the car for about 15mins . Teh store attendant didn't know what to do. I begged him just let me run the course. I do have other proplems, I made it thru Breast Cancer, Mascetomey, This was easier than my CH's . Half way thru the treatment I started thease CH's . Nobdy believed me, For years. Then I beat cancer, but still had CH's. saw a nuri for 2 1/2 yrs. All he did was over dose me on Lithuim. Sop now I watch everything I do. Been waiting on the judge for Disability. 2005 started my CH's chronic!!!!!!!!!

Sorry, but I refuse to let the beast win. Have you heard of high-flow oxygen therapy? Click on the oxygen info link to the left of your screen.

Lithium has worked wonders for me as a preventative. The most popular preventative is verapamil, which has also been a godsend (but which may not be an option for you if you have heart issues). You need to find a knowledgeable neurologist or headache specialist who will aggressively help you find a preventative that works for you. Or, try visiting clusterbusters.com.

If you continue to just ride them out, and this causes you to cocoon inside your home, the beast has won. Don't let it win.

:'(Thanks everybody for your feedback. I'm currently on verapamil. 320 mgs and nortriptlyn 50mgs. This combination seems to have lesson the amount of CH's a day, also the extreme of the CH's . I do have alot of shadows every night. I wake up almost every 2hrs. Afraid this is gonna be a big one. And then just like that gone in 3 mins. Now this 3 mins still seems like forever, but short lived. Sometimes its hard to go to sleep afraid that the big one is coming. I half to believe that it is not coming instead that it is. Alot of  this is also a game with your head. Believe in the better things then in the worst. NO MORE Head Games !!! I'm so sick of my F N Head. Their is so much more to life Please let me go CH"S.

I think you may need to re-arm yourself. red bull is OK but Oxygen,used correctly, has helped a lot of people. If that doesn't knock it back you could use Imitrex or Maxalt MLT. Sounds to me like you should read some of the testimonials on clusterbusters.com. You my be able to break the chronic cycle. Keep fighting. We're all with you. Peace, Hickory.

As far as being hit out in public, yes, I have many times.
Some of the darnest times were during a Crosby, Stills, Nash & Young concert and a Philadelphia Flyers game.
I just kind of meditated and faught it out.  At that time, I didn't know about about energy drinks or oxygen. 
Now, I only go to work while in cycle.  Luckily, my cycles have been a lot shorter than they were years ago.

My son Michael was able to get on Disability and Medicare for his CH but it requires both a lawyer specialized in disability and a Dr. or Dr.s willing to support your claims and provide extensive records of your care. It also takes about a year. Yes, you will most likely be turned down the 1st attempt. The lawyer's fees will be taken from your retroactive payment after you've been approved so it won't cost you anything out of pocket. It's worth it in the long run but you need to get started now. Good luck.

You should be granted disability of course.

Please don't think you've tried everything and your case of CH is hopeless though. Just ask 'ol Bonkers (Ron) who replied above. Last I heard his severely chronic son Michael was getting siginificant relief after many years where nothing worked. Besides this forum, they'll tell you all about it and how he's doing it at the clusterbusters.com forum that Hickory mentioned.

And have you tried the hi flow O2 therapy that Brew asked about? Lotsa people here getting great results with it for aborting attacks.

Male 55 years old Chronic since Nov 1999 before fall and spring only for 17 years. In Jan 2003 I was layed off from work due to a staff reduction (yeah right been in autoparts selling for over 20 years but only been at that parts store for 6 years). The autoparts company bought out another and moved people to my store that had alot more time than I did so I had the lest time at that place. I was full time but always was the first to go home early when work was slow because of my clusters. When they let me go they asked if I would like help because they knew I was going to try for SSD. I declined but used them as a reference when I applied. I collected unemployment and after 3 days it ended I was granted full SSD. It took over 10 months. I had every record of Dr appointments, ER visits, surgery done at Mayo Clinic (had trigeminal nerve cut in May 2002), medications tried that failed and the current ones I was on that wouldnt help me get a job because of the side effects and they were narcotics, and statements from co-workers and main office about my suffering while at work. That helped me the most was the folder with all that information I had collected. The people at SSD said they would interveiw me every 2 years but I havent had to do that in the over 7 years of being on SSD. Thats about all I can say about getting help with SSD. Terry