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Topic: Greetings from a newbie (Read 840 times) |
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kyt
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Greetings from a newbie
« on: Oct 30th, 2005, 9:04am » |
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 So very happy to find this site. I am a very long term sufferer for so many years now I have lost count. This year is the worst I can remember since my on set. Mine are always the worst going from summer into fall until it freezes. I could be pf if I lived in Finland, but I don't. I get to the point where I open my bedroom window and want to sit on the roof until I roll to the ground and crack my noggin. I slump in the window allowing the cool night air to blanket me and it doesn't matter how cold it is either, no one should have to live with this. I guess I consider myself kinda lucky since my headaches always come on at night (2am but now since most of the U.S. has fallen back it is now 1 am but that means the attack will end an hour sooner) and I have always been somewhat of an insomniac so I have learned when to sleep because I really really hate it when my sleep is disrupted by that damn demon. So over the years I have adjusted. This past week for the first time in 4 years they have carried over past 6am. My boss tells me take an aspirin and get over it. What do you do then? You are no longer taking the Imitrex injection, chose lithium, have taken your maximum doseage of that, have exhasued the bottle of advil next to your bed, you guys know done everything to get the demon evicted..... what do you do where do you go? I have the extreme unfortunate opportunity to live in a po-dunk arse backwards, hick of a town where the chief of staff at the nearest hospital thinks migraines are a new unsolveable mystery.
I feel even more fortunate now that I have found this group.....
maybe it will freeze soon too.
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BobG
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Re: Greetings from a newbie
« Reply #1 on: Oct 30th, 2005, 9:33am » |
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Hello KathrynJo, Welcome to the board. Sorry to hear you're hurting. Also sorry to hear you're in po-dunk arse backwards, hick of a town. LOL! Sorry to laugh but that's funny.
Your treatment sounds like most everyone here. I don't know how many times I've paced the patio barefoot, in my skivvies in the middle of the night in the middle of the winter with an ice pack on my face.
Go over to the Medications, Treatments, Therapies section of this site and read the first 2 entries about Kudzu the scroll down to the topic ‘Updated Clusterbusters website’. And at the top of this section please read the topic ‘Letter to Employers & Colleagues”. You can print it and give it to your boss (and your family members and doctors that refuse to understand our condition).
Now you have 6 years of entries to read. Get busy. There will be a test.
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Stay stressed. Never relax. Never sleep. Ever.
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KMT
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Re: Greetings from a newbie
« Reply #2 on: Oct 30th, 2005, 9:35am » |
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Welcome kyt
Glad you found this place too. Sorry that you have a reason though. Wish you weren't hurting.
Tell us more about you and what you are taking at the present time for preventatives and abortives.
Do you have O2 10-15 L per minute Non rebreather mask? Very good abortive if you don't already use it.
Take care hope to hear more from you...PF vibes and wishes.
We're always here for you.....Kim
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aka...................................................... KimY
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Jonny
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Re: Greetings from a newbie
« Reply #3 on: Oct 30th, 2005, 12:19pm » |
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on Oct 30th, 2005, 9:04am, kyt wrote:| My boss tells me take an aspirin and get over it. What do you do then? |
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Email him/her this link, it might open his/her eyes a bit.
http://www.clusterbusters.com/chuckattack2.wmv
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Jasmyn
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Re: Greetings from a newbie
« Reply #4 on: Oct 30th, 2005, 12:51pm » |
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Welcome Kyt.
Here you will get the info and support you need to battle the demon everytime.
Do what Bob said and read, read, read and read more.
Talk to us anytime day or night, someone is always on. You don't have to be alone with this anymore. Like Kim said, we're always here for you.
Wishing you painfree days and nights.
Jas
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Jazz
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kyt
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Re: Greetings from a newbie
« Reply #5 on: Oct 30th, 2005, 8:26pm » |
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thank you all so much for your understanding...Gator was kind enough to send me oooodles of info, right now I have to get to sleep. The pain will come at 1am it was 2 but we had to fall back. I hope it freezes soon I know shsortly after the first freeze the demon goes away for awhile.....sometimes a week or 2 longer than others and it isn't alot of time by many's standards but as we all know a day without this pain is a GREAT DAY
I can now honestly answer the question, "When do you feel most afraid." it is always this time of night... I know the sleep hours will be few but it is better than nothing.
Good night and thank you so much for your support.
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E-Double
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Re: Greetings from a newbie
« Reply #6 on: Oct 30th, 2005, 8:45pm » |
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Try taking melatonin and see if it helps you take back your night
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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kyt
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Re: Greetings from a newbie
« Reply #7 on: Oct 31st, 2005, 10:39am » |
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I do 10 liters per min thru a rebreather. My dad is a severe asthmatic and is on oxy off and on and his doc hooked me up with the mask.
I will try the melatonin as far as i can tell it will not affect my lithium.
I have been woking on something to make thigs a bit more comfy during the time the demon decides to be a percussionist in my head.
You know those trasvel pillows shaped like a "U" well For someone of small frame which I am fortunate to be i can take the pillow out of it's case and replace it with bags of frozen veggies then i lay back and poke my face in the opening as the rest of face and temples are surrounded in sweet cold numbig a little relief. This does help take away some of the pain, but as with any hot and cold 20 min on 20 min off so during the off 20 i have those warm packs in there. Like I said it helps some but as we know something is better than nothing.
I am also happy to say where I live we had our first frost!!!! So even tho I was awakened during the night the pain was not as severe.
I know antihistamines don't do jack for these headaches but I have found in my experience that it reduces some of the sinus pressure.
Okey off to do some stuff like buy some melatonin
bright pain free blessings
Kyt
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