Hello to my new family. I can't believe a place like this exists. Its like having a rare disease and finding a discussion board on it much less all of the great information contained on this site. I upgraded from those pesky migraines to clusters in February of '06. How I long for the days of migraines. I feel like I could run a marathon during one of those compared to my life now. I haven't had a ch for a few days of this new bout and still cried like a baby tonight when I found this site. Reading stories of others when you feel like your the only one in the world was overwhelming. I was so glad to know someone can relate and so sad to know how many others go through what I do. That includes the family members and friends of ch sufferers. I have to show this to my Mom and husband. They are so pissed off to be helpless when it happens. They could use this site as much as me. Thank you to everyone here for coming forward and being a part of something so important to me and every other ch person who has found this place!

So glad you found us!!!

Welcome home...yeah....bawling like a baby is a suprisingly common response to finding your long lost family!

Okay enough of the nicey-nicey crap! What are you using for a preventative medication? Do you have a decent abortive routine? Do you have oxygen yet? When you get a second, let us know your routine, what has and hasn't worked for you in the past. Maybe you'll drop a new pearl on us, maybe we can make some suggestions you can take back to your doc to tweak your regimen and hurt a little less. The strength of this board is the real life experiences of its family.

Damned glad you found us, hope we can help you!

joe

Thank you so much to everyone who responded and welcomed me. You guys really do feel like family and I don't even know you. My name is Roberta, I am 28 and I live in Michigan. I am lucky enough to live 45 min away from MHNI (Michigan Head Pain and Neurological Institute). My mom found them for me while trying to use google to diagnois me. We thought I was going to have a real live brain explosion and die right on the living room floor as I'm sure you can relate when they hit the first time and you don't know what the hell is going on. Let me express that anyone able to get to this place that doesn't already have a specialist for themselves would benefit immensely. They are so damned knowledgable and caring its unreal. They have hundreds of techniques, drugs and procedures and never give up on you. Anyhow, I have been officially diagnosed. My clusters come once a year and last two weeks to two months with a bout of "tolerable" ones on and off all day most days and the devil himself once or twice a week approx. two hours after bedtime. Going to MHNI is expensive as I have no insurance. About $175 per visit. So I mostly go at myself with no meds. A hot wash cloth over the right temple and eye that feels like its falling out and lots of rocking and stomping and crying with the fan on high. When I do involve the specialist, Prednisone clears me up within about a week after the last tapered dose. I can't express how much oxygen helps. I sprang for it with an rx in '06 and haven't been able to afford the visit for the rx since. My biggest question for everyone is am I able to get o2 without a rx?

Good suggestion. Thank you. Realized after I posted and re-read it myself that I should at least call the Institute and request a rx be sent to a local pharmacy or supply company. The docs there know how much it helps and since I'm not asking for "drugs", they may do it for me. Helps to get stuff off my chest here. It brings new ideas to me just like having a conversation with someone on the couch. Gets the creative juices flowing. Also went to the 02 link and read up on it. The amount of info on this site is amazing!!

Hi Roberta
Great idea...just call and ask about a prescription!    But remember to word it exactly like it says on the O2 page...

I can't imagine trying to get through a cycle without oxygen!!  Good luck
CC

Hello and welcome,

Get 02... Get 02... Get 02... Get 02. Get 02... Get 02... Get 02...


Oh, by the way did i metion Oxygen treatment for Cluster Headaches.   

                 Welcome again,
                                           Coach Bill

Have we mentioned the energy drink route with you yet? Monster, Rock Star, any containing the combination of Caffeine and Taurine....many can abort an attack or at least really back it down by chugging one of these at the first sign of an attack. Some even keep one or two cans in their fridge...opened so they lose their fizz and are easier to chug. The trick is to chug not sip!!! Might be worth a shot while you wait for the appointment.

Joe

I carry  generic Red Bull in my purse! ( Aldi carries Red Thunder, it's much cheaper!)

Welcome home Roberta! Glad you are here but sorry you have to be!   Stick around after your cycle ends.  We could always use some extra hands to help row this boat!

Jeannie

Thank you to Jeannie and Jrcox for the welcomes and the good advice. I had been having "mild" attacks during the day and being able to sleep at night for the most part until last night. Every damn time you start to believe in a pattern during your cycle your mocked by doing so. Not pretty last night. Just had to vent for a minute. I woke my husband up who insists on being there for me when he knows whats happening. I feel so guilty because he has to be up early and I am unemployed right now. Which is my other problem. I am almost positive I will be getting this new job I applied for and need my cycle to end before it costs me a job I haven't even started yet. Enough ranting. Thanks for listening. I plan to continue coming here even after the cycle just to lend an ear to everyone. I am lucky enough to be episodic and want to continue my support to those having a cycle or those unfortunate souls that are chronic. Now that I have found you guys, good luck gettin rid of me!