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Topic: Hi (Read 222 times) |
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myfreaknhead
New Board Newbie
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Posts: 15
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New here <waving hi>
I'm simply blown away...after all these years, I chance to discover there are actually other living, breathing human beings that know my pain. I can't tell you what that does for me. I felt so crazy, fragile, self-distructive--so misunderstood. What a lonely place...
So here I am at last, a clusterhead. Oh how I can't wait to tell the Doctors <grin>
Anyway, I have a few questions:
I'd be interested to hear if any of you have any symptoms just prior to (within 5-10 minutes) the onset of the excruciating pain? I get a 5 minute warning in the form a "flicking" sensation in my upper back teeth. Strange?
I hear this is a predominately male affliction...any other Moms here? Would you agree that the pain of unmedicated childbirth is a cakewalk compared to this? I had a breech twin pulled from my womb by his feet without so much as a tear or a Tylenol...And God, during my attacks I feel like such a big baby, curled up in a ball on my cold kitchen floor, rocking like a nutcase, pulling the hair from my head...squeezing, banging, screaming, scaring the crap outta my kids...
And finally, any advice for me on how to break the news to my Doctors that I've been grossly misdiagnosed for the past 9 years? How do I convince them that I'm NOT crazy, this is NOT migraine, TMJ, impacted wisdom teeth, or a drug addiction, and that NARCOTICS ARE NOT HELPING MEEEEEEEE! Duh! What kind of Dr. should I seek for the best treatment?
Thanks for any input. What a relief to find this place. {{{Gentle hugs}}} I am so sorry for all of us.
~T
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EmpressJMB
New Board Veteran
No Brain, No Headache
Posts: 114
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Re: Hi
« Reply #1 on: Oct 16th, 2004, 7:45am » |
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Hi T! Sorry your here but glad you found us.  It DOES help to know there are others who understand what your going through. There are alot of women here. I am the mother of 2 boys, 9 & 10. Many of us were misdiagnosed. Sinus, stress, anxiety...whatever. Yes, I agree, these headaches are worse than childbirth. Thank goodness they don't last as long. The first thing you need to do is make an appt for a neurologist. You want one who has experience with headaches, specifically, cluster headaches. Ask when you call. Then, arm yourself with as much information as you can stand to read. The buttons to your left is a great place to start. I usually have about 5 or 10 minute warning that I'll get hit. Twinging behind my right eye, tickling sensation in the roof of my mouth. My sinuses get stuffed up and my eyelid droops. Hope I have answered some of your questions. Let us know how it goes and remember, YOUR NOT ALONE! PFDAN to you! Janet
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...sometimes at night I think I understand. Brother to brother, man to man, face to face, hand to hand, the shadow dance that never ends. Shadow boxing the silent war within...yet again. Weir/Barlow
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yikes-another-one
New Board Old Timer
 
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Posts: 384
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Re: Hi
« Reply #2 on: Oct 16th, 2004, 9:15am » |
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I'm not a mom, yet.... but I am the family babysitter
and considering there are 14 to watch over....I am always with the kiddos....  .
I have had these for the past 6 years,
and just found this sight in august. 
I also got diagnosed with migraines....
and my mother still tries to get me to see
and eyedoctor more frequently. 
(She once said her head hurt when she went off
caffine for a week.....and I had to try not to laugh,
and pat her on the shoulder... 
i've had a caffene headache, and it didn't go pass
a kip scale of a 2....  .)
The Ouch link to the left of this page is terriffic
Go there and print off what you find helpful.
Show it to doc, and if she/he doens't listen 
well, fire her/him....and go find a one who will.
Good luck and keep posting!!!!!
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Psalm 23 - Goodness and mercy shall follow US all the days of our lives and WE will dwell in the house of LOVE forever.
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myfreaknhead
New Board Newbie
Gender:
Posts: 15
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Re: Hi
« Reply #3 on: Oct 16th, 2004, 10:54am » |
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Hope I have answered some of your questions. Let us know how it goes and remember, YOUR NOT ALONE! PFDAN to you! Janet [/quote]
Hi Janet
(Bear with me. New to this message board format--tried to quote part of your post, no idea if it will work)
Thanks for your reply. It's interesting to hear you get the "warning". Sounds a bit like my own.
It really is a relief to find others in my situation. Especially other moms, as there are so many other issues that ride along with a condition like this--trying to care for a family when you feel half-dead or dying much of the time. I'm sure you can relate...
Thanks for your advice. I have been in contact with a neurologist via an ER referral, however they have yet to agree to see me due to primary care/ medical records bull-ogna. But I'm on it. Your suggestions will be helpful.
It's been one week today since my last full-blown attack. I don't seem to have any clear patterns, but my kids and I continue to pray that the episode has passed...for now, anyway...
Take care
~T
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myfreaknhead
New Board Newbie
Gender:
Posts: 15
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Re: Hi
« Reply #4 on: Oct 16th, 2004, 10:58am » |
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P.S. What does PFDAN mean? Thanks
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EmpressJMB
New Board Veteran
No Brain, No Headache
Posts: 114
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Re: Hi
« Reply #5 on: Oct 16th, 2004, 12:04pm » |
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Sorry! It means "pain free days and nights" to you. You'll see it alot here. J
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...sometimes at night I think I understand. Brother to brother, man to man, face to face, hand to hand, the shadow dance that never ends. Shadow boxing the silent war within...yet again. Weir/Barlow
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LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
Gender:
Posts: 11720
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Re: Hi
« Reply #6 on: Oct 16th, 2004, 1:39pm » |
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I know what you mean about you'd sooner be in labour!! So would I.. exept for the gazillion kids hanging around my feet and the nappies.. nope we won't think about nappies!
It is hard, especially when you have kids wanting you do do things with them and you can't even think of anything but the pain. As has already been said, reading this site and printing off info for your doctor is a great place to start.
Hope you feel better soon
Helen
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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