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Title: Off to do battle Post by misserin on Jul 1st, 2003, 12:46am :o wow, I'm still quite the newbie and my first post moved up to flaming file folder status, that's so great! I have been working my butt trying to read as many of these fantastic posts as I can. I try to respond to them too, but for those of you who share my miseries of a dial up connection, you know my other form of pain. I'm writing tonight because tomorrow am I am heading down to Salt Lake city to see a neurologist and I'm a bit, well, pensive and nervous. I believe my headaches are still in the "chronic paroxysmal hemicrania" realm, and I am bewildered and humbled by the pain that I can only imagine most of you experience. Lately, every so often during a passage of my headache pain, I have suddenly started being hit with a jab, like a sword straight down the top of my head, the pain is instantaneous and earth shattering, though gone and replaced again by the dull annoying ache that sometimes makes me dizzy or want to scream. I feel that maybe it is a sharp reminder, the devil making its point "I could hurt you a lot worse..." I know it could. I wonder about the differences of my experiences with a true CH'er. During an episode, my head hurts many many times a day, I'd say ten-fifteen times or more at the crux of an episode. But only for ten minutes on average. I do wake up frequently in the night, and always at dawn. It used to be 4:32am on the dot, but now that's changed. I suspected diet. Its weird, I notice pain after I eat. (sounds like anorexia right?) But this too has developed into its own torture, as every time I feel this pain I think its my fault. (well what did I eat today, did I read that label? man that was stupid...) I do notice the pain after I eat complex sugars, wheat products especially. I couldnt eat my stepdaughter's birthday cake tonight... (lie, I took a huge bite and dealt with the aftermath which only lasted a couple of minutes) am I becoming a diabetic?? ag I'm sitting up here tonight afraid of tomorrow, of what this doc will say, or maybe more likely, what she wont say. I want to be a pharmacist. I want to have something to offer. I want to know that I could get through the next four years of very intense study without these six to ? weeks of incapacitation. I'm afraid she'll have nothing to say about that. I want to tell her everything I've read here on this website these past several weeks. In researching her career on the web I read that she is studying the incidence of headache in tibet. (bet elevation has something to do with that one? maybe?) I'm afraid she'll have little to say about homeland security... I've been treated so poorly by other practitioners. Been made to feel that these are my fault. "Yeah, paroxysmal hemicrania" that means pain in the head, there's nothing wrong with you!!!" wow what a dick anyway I'm afraid of being labeled a seeker, I'm afraid of being put on drugs as the only answer for tx. I try to tell them "I dont want drugs, I want answers dammit, I've got questions..." pretty funny, my brother runs a radio shack (okay, maybe its getting past my bedtime) anyway if anyone could stand it long enough to reach the end of this letter, I appreciate you. its easy I suppose to loose heart late at night, at the darkest hour of anticipation. Waiting for all questions to never be answered. Its a trip. I'm sure I'll be through this, and hopefully mid-day tomorrow armed with a new set of hopeful possibilities, which will feel so good to share here. I dont feel like I'm fighting just for myself anymore. I dont feel alone in this. Thank you all for being here. The extra coats of armor I didnt realize I so needed in this war. Dawn draws near its break I'm off to war (or Salt Lake City-same thing ;D) good night, and love to everyone Erin |
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Title: Re: Off to do battle Post by BobG on Jul 1st, 2003, 12:51am Good luck Erin. Sure hope it's CPH and not clusters. Wish it were neither. |
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Title: Re: Off to do battle Post by oringkid on Jul 1st, 2003, 12:56am No need to fear or worry, until you have something to fear or worry about. I know, easier said than done! Don't let it incapacitate you. That is your part. Refuse. Don't give in. Become a pharmacist!!! and.... be kind to clusterheads when they come in begging and pleading to get their prescription filled NOW!! And the WHOLE prescription!!! LOL! You will be fine. Let us know how it goes. Sherry |
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Title: Re: Off to do battle Post by ZAIRA on Jul 1st, 2003, 4:21am Hello Erin :), nice too meet you…. Just wanted to tell you Good Luck for your examination, let us know how it has gone.... Zaira :-* |
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Title: Re: Off to do battle Post by taraann on Jul 1st, 2003, 5:14am BEST of luck to you Erin....you know what? I don't even know you but I will be thinking about you today and really truly hoping everything goes very well with the nuero. |
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Title: Re: Off to do battle Post by NotH20 on Jul 1st, 2003, 7:54am Erin - sending out good thoughts and vibes for your appoitment today - pleas come back and post to let us know what the doc said.... Mia |
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Title: Re: Off to do battle Post by Live4Fun on Jul 1st, 2003, 11:26am Erin, Hope your appointment goes well. Keep us posted! PFDANs to you, Bryan |
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Title: Re: Off to do battle Post by TerryS on Jul 1st, 2003, 12:29pm You have a good name Erin, my daughter is an Erin too.She makes her mother and me very proud. Next year she becomes a teacher. My thoughts and prayers go with. TerryS |
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Title: Re: Off to do battle Post by cootie on Jul 1st, 2003, 2:15pm Good luck with the nero....hope he has some answers for ya and a mix of things that may help your pain...good luck......keep us posted. Pam that's nero-free in Ohio |
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Title: Re: Off to do battle Post by Opus on Jul 1st, 2003, 5:09pm Erin, If anyone calls you a drug seeker tell them that you don't want narcotics , but any preventave, and abortive to make the pain go away. Narcotics don't work for most vascular pain anyway. I will be praying that you get the correct diagnoses. Opus/Paul |
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Title: Re: Off to do battle Post by cathy on Jul 1st, 2003, 5:35pm Erin...Good luck with the Neuro.... Cathy :) |
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