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        New Message Board Archives >> 2003 Posts >> Finally saw a neuro
        
(Message started by: Kenzie60 on Apr 17^th, 2003, 12:10pm)

Title: Finally saw a neuro
Post by Kenzie60 on Apr 17^th, 2003, 12:10pm

:D :D :D :D :D

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. :o :o

Roseanne

Title: Re: Finally saw a neuro
Post by echo on Apr 17^th, 2003, 12:14pm

Glad to read you were able to get in and see a neuro Roseanne. I hope the O2 works wonders for you.

Title: Re: Finally saw a neuro
Post by boos2 on Apr 17^th, 2003, 12:20pm

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

Title: Re: Finally saw a neuro
Post by Frank on Apr 17^th, 2003, 1:47pm

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.

Title: Re: Finally saw a neuro
Post by BruceD on Apr 17^th, 2003, 2:31pm

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

Title: Re: Finally saw a neuro
Post by jonny on Apr 17^th, 2003, 3:12pm

on 04/17/03 at 13:47:34, Frank wrote:

If you get the wrong mask delivered(everybody does)

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

Title: Re: Finally saw a neuro
Post by Kenzie60 on Apr 17^th, 2003, 4:41pm

:D :D : :D :D :D
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

Title: Re: Finally saw a neuro
Post by jonny on Apr 17^th, 2003, 5:20pm

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

Title: Re: Finally saw a neuro
Post by catlind on Apr 17^th, 2003, 7:47pm

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

Title: Re: Finally saw a neuro
Post by don on Apr 17^th, 2003, 7:55pm

Quote:

. Doc has got me on Imitrex, Verapamil, and Prednisone

That is my magic cocktail.

Title: Re: Finally saw a neuro
Post by sailpappy on Apr 19^th, 2003, 10:47am

;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
http://www.gifs.net/animate/sungulls.gif
http://www.gifs.net/animate/sailboat.gif

Title: Re: Finally saw a neuro
Post by cathy on Apr 19^th, 2003, 11:23am

Kenzie really pleased for you hope the O2 works......!

Cathy :)

Title: Re: Finally saw a neuro
Post by jonny on Apr 19^th, 2003, 12:21pm

Indo worked for me, thats until they stopped making it in the form I was taking it.

....................................jonny