Hi ya'll, I'm 24 and a recently halfway-diagnosed CH sufferer. By halfway I mean my pcp agrees with me that this is way closer to the right diagnosis than migraines, but my appt with the headache specialist/neuro isn't til next month. Fingers crossed that this guy is good. I have been told I have migraines since I was 17 but they were never typical and I never quite believed that was what was wrong with me. Still, they were pretty seasonal and halfway managable with menstrual-suppression therapy and migraine drugs when necessary. Now I've found myself in a whole new world of hurt. I have had multiple "headaches" almost every day since September 2008...I had a brief respite in December where I didn't hurt for almost a month. I almost wish it hadn't happened because it's harder to live with this pain when you know that life without it actually exists. I've taken the cluster quizzes and all signs point to the fact that this is what is wrong with me. I get the shadow headaches before the big ones hit and sometimes, if I'm lucky, I can chase the big guys away. But most of the time I know it's only a matter of minutes-hours before I get slammed. I try to explain to people what it feels like but I don't think they believe me. My right eye tears, my right nostril stuffs up, and I feel like someone is trying to insert a pick-axe directly into the top of my skull and down into my sinus cavity. Eventually it starts radiating across the whole front of my head (mostly my forehead) and then runs down the right side of my neck and into my jaw and shoulder. It usually happens at least once a day, sometimes 3 or more times, and almost always in the late afternoons/early evenings. Right now I'm taking Inderal, Depakote (which is making my hair fall out), bc pills to stop my periods daily, and Valium, Soma, Phenergan, Fioricet, Lortab, Amerge, Imitrex, Frova, Midrin, and several other things prn. I've seen a few posts on here about what works for people and I guess I'm not like anyone thus far. Triptans do jack-you-know-what for me. Fioricet will take the edge off long enough for me to get home and melt down. Valium or Soma helps with the neck/shoulder/jaw muscle pain but not the headaches. The Midrin is worthless. The Inderal has made a little bit of a difference but I think that's just because it keeps my bp at about 100/60. I just started the Depakote 8 days ago so it's hard to say how it's affecting me. Honestly, and I know I'll probably get beat up for this, the only thing that even halfway takes the edge off is a Phenergan and half a Lortab. I'm not sure how it works but my dr explained that those two together have a synergistic effect and can be great at relieving pain with minimal rebound potential because there is very little acetaminophen and opiods. The worst part of all this? I'm in nursing school. I am dedicating my life to caring for and relieving the suffering of others...but I can't figure out how to save myself. I'm also getting married in May...at 7pm...great planning on my part...and all I can think is "what if I'm having one of my headaches?" I'm bawling writing all this because I don't think I ever really admitted out loud how bad it was before. I don't know anyone who has CHs and I feel so alone sometimes, like the girl who cried headache so to speak. I wonder if people believe me or if they think I'm making it up for attention. I'm tired of getting treated like a drug seeker by docs. I just want to yell "I'm 24, I'm in school to be a nurse, I'm getting married and starting a family...I would give ANYTHING not to have these stupid headaches or take these stupid pills anymore!!!" I'm sorry for rambling/venting...if anyone made it through that then thanks for listening and thanks for letting me know I'm not alone.

Welcome,

    Sounds like your load is heavy, But dont worry these people here know how you feel. I had these clusters since my early 20s, every couple of years, and they dont get any better. Take a deep breath and know that they wont kill ya.
      You can again have a normal life, even with clusters!! So keep reading and always keep looking for the " magic bullet ".


                    Back to normal.. Coach Bill 

Ouch!! We're planning my daughters wedding now.......what a rotten thing to have to worry about on your wedding day.

Do read everything on the board, knowledge is everything with this condition. Talk to your doctor about a prednisone taper. I can get 100% relief using prednisone. It's harsh on your body for long term useage, it's typically used only as a transitional treatment while you're waiting for a preventative medication to kick in. When I have a big event, a big vacation, a wedding!!!...something I simply can't have ruined by an attack, I'll to a 2 week prednisone taper. Other people on the board will do short pred tapers when they hit the exhausted just need sleep point.

Glad you found the board, hope we can point you in a direction to get you some relief.

Joe

hi
welcome to the board!
I am also new but i learned many things from this site during this short time, one intersting thing is that everyone here knows and understand your pain!
have a look at the useful tips it will help you.
farzad

Hi Scarlett,

While I can honestly say I've never even heard of the meds you've been trying (or half of what everyone else here might use for that matter) but 02 seems to work for a lot of people. It's my savior! Welcome aboard. I know your going to find go info here and lots of support.