Hello,

I am about to start treatment for cluster headaches soon, I hope. I have an MRI at 2:15 in the morning- yes, 2:15 am in the morning (first available- normal time is sometime in  3 weeks), and if that comes back fine I will finally start treatment. I am so nervous and excited...... is that sick?!? Nervous because I am afraid after all this time my doctors have it wrong AGAIN, and excited that if they don't I can maybe get relief. Right now my husband is watching the Bruins and he is yelling at the tv in the other room and I want to scream, beat him and bang my head against a wall.... This is after 10mg of prescribed percocet. (2) 5mg pills, again prescribed- I am not taking them for recreation. This all started years ago but I will fill you in on the past 6 weeks. I thought I had major allergies with crazy head/eye pain followed by a sinus infection. My right eye seemed to weep or get wet, the upper eyelid swelled or actually drooped a bit and I was told under my eye looked "filled" with fluid. The pain is awful. The first indicator to me is I feel almost like a warmth take over my right eye area, followed by what can be best described as a tightening of my right eye area. Then comes pain, pressure and what I describe is a feeling like I am stung by a bunch of bees. Not just because of pain, but because it feels like it is so swollen, but it is not that swollen compared to the feeling. My upper cheekbone just under my eye feels so painful during an episode, I feel like my bone is broken at times, it clearly is NOT. They last about 2.5-3.5 hours in total followed by pure exhaustion and then it starts again with only a 30-45 minute reprieve of no pain. I want to rip my shirt off like the hulk and just pace because of the pain- is this normal? Mine seem to be mostly during the day- starting 2-3 hours after I get up. I am so exhausted when I am not in pain, or on the days where I don't have headaches. I am miserable, grouchy and the littlest thing can make me flip, especially during an episode! I have been considered as possibly having Lupus so I don't know if this has to do with that. My coworkers and husband think I am nuts. It is always something with me. I was working out, doing pilates and loving life; and now I am so tired, in pain and my balance is completely off. Like I said if my MRI tonight comes back fine, I will be starting treatment and preventative maintenance for cluster headaches, but I wonder, am I nuts? I feel like people think I am crazy. Like I said it is always something with me. But I swear I was doing stuff I enjoy and BOOM- pain, headache, severe fatigue and miserable grouchy person appears out of nowhere. I even tried to continue with a pilates class because I thought it was sinuses or allergies and maybe exercise would help. I really don't think I am someone looking for attention or anything, but I do feel like I always have something happening every few months. These headaches are bad though. My ear even hurts inside deep. My primary saw no signs of allergy, ear or sinus issues. The neurologist thinks it is cluster headaches, but checking with an MRI to make sure there are no other issues before treating cluster headaches. Does anyone else get ear pain too? The ear pain is nothing like the eye pain, but it seems to be there even when I don't have a headache. I actually went and got glasses during all this because I noticed eye pain in my right eye, not as severe as now but it was there. Does anyone else feel crazy? I understand narcotics are not the correct treatment for CH- but until they can diagnose me with it, all I have are these, and they don't work that great. I am allergic to Imitrex so this could be interesting. Any thoughts on whether these are normal feelings or not would be great. Anyone else have a hard time getting diagnosed? Thank you!

Some on the board have gone 5,10 years, even longer to get diagnosed. First they get teeth pulled, nasal surgery, eye work, before stumbling on an accurate diagnosis. That's why Lance's advice is so critical. A headache specialist neurologist. GP's call everything a migrain, your garden variety neuro's are not much better. Your best bet at an accurate diagnosis and most importantly, an effective treatment regimen, is a Headache Specialist Neurologist. A couple of links for you:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

This is the oxygen info link. Read, print out and discuss with your doc. I'm a 33 year episodic sufferer, 51 year old male, I went from 90-120 minute butt kickers, to 6-8 minute aborts using oxygen. It's as close to magic as you can get!

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

This is our sister site, the clusterbusters web site. They use RC seeds, psilocybin mushrooms, stuff outside of mainstream medicine. I have personal friends on the board, my age, who were getting creamed by the beast. Noting was working for them and they are now pain free using the busting approach. Certainly worth a look see.

Keep reading like crazy, we find an educated CH'er hurts a whole lot less. Welcome home.

Joe

And we're glad to have ya! Check out the info on the Nashville OUCH convention coming up in July. Meeting a bunch of clusterheads in person is an experience you'll never forget. Once you've been to one get together, you'll be an addict.

Joe

O.K. I have to ask the same question.   Where are you?  A 2am MRI is a real stretch for my mind to wrap around.   Are you in the U.S.A.? That's just crazy unless you are brought in on a stretcher from an accident or something. 

The reason we all ask where are you...is because If for instance you lived in western Kentucky..I'd be trying to help you with 02 suppliers, a doctor who knows something about CH in our area etc.  it's NOT because we're nosey.

Linda