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Topic: Finally saw a neuro (Read 338 times) |
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Kenzie60
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I finally got to see the neuro this morning. She put me on O2 for the attacks and Indonethacin until Monday. I have to go back on Monday. She said I suffer from clusters but a different form of them. Atypical clusters, more prevelant in women. Another weird thing she noticed, my pupil gets bigger and not smaller as is typical of cluster traits. Pretty interesting ??? ??? ??? Now I am trying to get the O2 approved by the insurance company and setting up delivery. They said they could probably deliver it tomorrow. Heres to hoping. 
Roseanne
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echo
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Re: Finally saw a neuro
« Reply #1 on: Apr 17th, 2003, 12:14pm » |
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Glad to read you were able to get in and see a neuro Roseanne. I hope the O2 works wonders for you.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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boos2
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I hope everything works out for you. I had to fight with insurance and still no O2. Doc has got me on Imitrex, Verapamil, and Prednisone (for the time being). Went that route instead of O2. But that's OK because it seems to be working.
Anyway, wishing you the best of luck, PFDAN.
Mike
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Frank
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I'm glad you got to see the neurologist, and O2 is on the way. If you get the wrong mask delivered(everybody does)... ask the EMTs at your neighborhood firestation if they have an extra non-rebreather mask.
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BruceD
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Re: Finally saw a neuro
« Reply #4 on: Apr 17th, 2003, 2:31pm » |
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Kenzie,
Good to hear you got through to the neuro. I also really hope the O2 works for you as well as it did for me. I'll pass on the advice I got from this board when I first got the O2. When you first feel the beast ... Hit it quick ... hit it hard ... and keep it on an extra 5 minutes after the pain is relieved. I've found that once I feel the HA starting to break, I can slowly turn down the regulator and taper off the flow down to about 8-10 lpm by the end of the attack.
Take care
BruceD
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Childhood is short, maturity is forever. (The Indispensable Calvin and Hobbes)
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jonny
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on Apr 17th, 2003, 1:47pm, Frank wrote:| If you get the wrong mask delivered(everybody does) |
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LOL, the bastards love to give us "Partial non-rebreathers"....just tape the holes shut on the side with no round bladder or do like Frank says.
You could always ask here if anyone has an extra if you cant find one, lots of people posted or e-mailed me they have an extra and just need an address to send it to.
..............................jonny
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Kenzie60
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They actually sent the correct mask. They just delivered the O2. I saw the neuro this morning and I got the O2 this afternoon. I am in a very good mood today. Hopefully this will work.
Roseanne
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jonny
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Remember to get on that 02 as soon as you feel the beast coming....This is KEY!!! to aborting with 02.
Good luck, Roseanne
.............................jonny
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catlind
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Re: Finally saw a neuro
« Reply #8 on: Apr 17th, 2003, 7:47pm » |
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Good luck with the O2 Roseanne. Knowing the correct way to use it is definitely key. The SECOND you feel the beast, don't wait to see if it's a shadow, get on the O2.
Your comment about the pupils interests me though. I was always under the impression that was normal. That the pupil on the affected side dilates. I'm going to have to go back to searching the net to see where I read that one.
I will also check in Dr. Goadsby's book.
Very interesting..
Cat
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If yer gonna be stupid, ya gotta be tough
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don
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Quote:| . Doc has got me on Imitrex, Verapamil, and Prednisone |
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That is my magic cocktail.
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sailpappy
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Re: Finally saw a neuro
« Reply #10 on: Apr 19th, 2003, 10:47am » |
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;D ;D Hello Roseanne,
I can't believe none of the older board members didn't pick up on this, Indonethacin is the Medicine of choice for CPH----http://mhni.com/faqs_other_headaches.html#CPH
so if this medication helps your attacks you might want to check out this link, Secondly, I understand the pupils of different diameter indicates something else, usually a clot or a tumor or a brain defect, I would think the Neurologist would order an MRI as the first line of Dianostics.
My 10year old Brother Died in 1973 because the Doctor misdiagnosed his headache as a problem from a tooth, he had an anurysm inside his brain and by time they found it 3 weeks later, it was too late, his first symptom was Headache and one enlarged pupil!
Not trying to scare you, but I would bring this issue to bear with your Neuro pretty quick! Pappy
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| « Last Edit: Apr 19th, 2003, 10:49am by sailpappy » |
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cathy
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Re: Finally saw a neuro
« Reply #11 on: Apr 19th, 2003, 11:23am » |
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Kenzie really pleased for you hope the O2 works......!
Cathy 
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| « Last Edit: Apr 19th, 2003, 11:24am by cathy » |
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jonny
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Re: Finally saw a neuro
« Reply #12 on: Apr 19th, 2003, 12:21pm » |
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Indo worked for me, thats until they stopped making it in the form I was taking it.
....................................jonny
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