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elpo

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  1. Ive been here for a few years, i think my last username was elpo. Anyway, like all of you i've been down a long hard road. I'm female so that means that everything including ingrown toenails have been blamed on my menstrual cycle. I've had cluster headaches for 16 years but just diagnosed 9 years ago after the ER doc witnessed the lacrimation and dilated pupil during an attack that i went to the ER for. I only go when i can't stand it anymore, like the rest of you - near the end after i'm limp from pain and brainless and can't take care of myself anymore. They give me nerve blocks and opiods and oxygen, but nothing stops it, the pain continues, it bears down. Before that, i was sent for a number of mri(s) but just didn't hear back. I guess my brain looked normal, no guinea pig here, no case to study to publish. After 11 years, I was on a govt pension and completely a mess. I should note that i have wonderful parents, they saw my pain but felt helpless. My neuro put me on a host of meds, they either re-started my cycle or brought on a new one. Eventually, i decided that no meds worked, and in fact, they made it worse. This was after 12 years of agony, by myself. I've had boyfriends, etc., but lets face it, the majority of us do this all by ourselves. Now that i've been busting, i've gotten off the pension, i've got a great job - one i've re-trained for during my illness - and one that i've maintained for almost 2 years now. they are accommodating, they are wonderful . it is my dream job, i'm doing everything i can to show them that i am a hard worker. I bust every week, more or less depending on what i feel i can handle. But i knew the day would come that it wouldn't matter. It would get me. And now it's here. i'm sitting in front of the air conditioner at 1255pm and the next night at 955pm. the pain has returned, after many months i knew it would find me. i sit alone. my eye cries, i am in unbearable pain. I am 35 with no children, no little ones to love me. I am trying to be strong. but still I sit here, i sit here, i sit, rocking in agony, thinking of the life that i deserve. Trying my hardest not to think of those children, that life i should have. Trying to think of nothing, because thinking of something makes the pain so much worse. I won't give up because i have people who love me. but still, I'm alone, i'm so lonely with this disease. I'm 35 but i feel like i'm 100 year old. And i may as well be.
  2. Thanks CHfather! I don't find that shooting a red bull before the attack helps, although it helps wonders for the lingering dull face ache after the attack and will sometimes prevent the next one (within hours, during cycle). I've probably been given injectable tryptans but cannot confirm 100%. In Canada, the standard order is toradol (NSAID) injected or through IV. It doesn't help of course. I've been to the emerg dept more times than I could count and was only given oxygen once. It was years ago and all i can remember is the concern for my skyrocketing blood pressure and the staff trying to hold me down to give me the oxygen. I pretty much threw the mask away because they were trying to keep me still and in a laying down position...which is horrible for me. I absolutely cannot lie down. I refuse to even go to the hospital now, besides, I'm sure the word lunatic is in my chart somewhere Anywho, yes! Vitamin M has worked absolute miracles for me so far! I still get achy and sometimes will wake up with a K2 or 3 in the wee hours of the morning, but when that happens, I take a healthy amount of VM and am usually good for about 2 - 3 weeks. Also, my neuro put me on elavil for a short time last year (before I tried VitM). It was absolutely horrible - the cycle I was trying to break started anew and was the worst ever. I feel like a freaking guinea pig up here....
  3. I've had cluster headache for 13 years. Episodic in the beginning, chronic for the last 6 years. I tend to obsess and have always had difficulty falling asleep due to running thoughts. I don't know if I'm a perfectionist, but I have always tried to complete tasks as fully and efficiently as I'm able. I also have pretty bad allergies and get ringing in the ears (tinnitus). One other interesting thing: although I was always suffering from colds and flu before getting cluster headaches, I NEVER get 'regular' sick anymore. Ie. I have taken care of people with bad colds and terrible flu many times while never getting sick myself.
  4. Wow - this has happened to me many times. Unfortunately the neurologists in Halifax NS (where I live) have no idea what to do with clusterheads and tend to treat me like I have migraines...ie. 3 tylenol, 2 ibuprofen and lots of water, or morphine, indomethacin, etc. I've never been offered oxygen. Tryptans take too long to work so they haven't really helped me at work. Since I work in an office, I've scouted-out a few hiding places around the building. These places are safe for me in that I know no one will bother me, there aren't a lot of distracting noises, and they are cool in temperature. One hiding spot has a wall clock and the ticking soothes me while i rock. After an hour, I'm pretty much through the worst part, sometimes less, and then I head back to my desk. When returning, it's pretty clear that I've had an attack and my boss is kind and doesn't question me. On a side note, I work very hard when I'm feeling well in order to stay ahead of schedule and show my bosses that I will get everything done. This means staying late too. When I'm in the worst of a cycle and the hits are coming 3 - 4 times a day, I must call in sick. Given this, I also hoard sick days knowing I'll need them desperately when the time comes.
  5. I've been diagnosed with cluster headaches and am a definite sufferer. It's been 13 years now, diagnosis 6 years ago. Psilocybin has worked wonders, and I'm a huge proponent. During a cycle I cannot have alcohol near me - even the smell of it will send me into a spiral. This said, there are times when the shadow is lessened by a few drinks. Have any of you felt relief from a few drinks when you are not in a cycle but just feeling bad shadows?
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