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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Newbie!
        
(Message started by: Bustavein on Mar 22^nd, 2007, 12:28pm)

Title: Newbie!
Post by Bustavein on Mar 22^nd, 2007, 12:28pm

Hi everybody! I'm bustavein (that's as clever as I could get under the circumstances).I hate to start off like this but I just began another cycle after a remission period of over a year (which has been bliss!) It was brought on by stress and I'm at work on my break suffering, with my left eye about to pop out of it's socket and tearing all over the place as I write this. It started up again a few days ago and I was able to control it up until last night when I was startled out of my sleep with a very horrible one. It was so bad that it kept me up all night and it really never subsided after I took a pain reliever with codeine, it just numbed me enough to make it to work.
I've been suffering from these headaches for over 15 years and have learned to take the pain in silence. This was because I was barely out of high school when I it started and when I lived at home, I used to make my parents mad when I woke them up in the middle of the night with my moaning and crying. My parents didn't really understand it and it took me years to explain it to them (they're from the old country and don't understand these things). Now, I'm married. I'm afraid to wake up my husband as well. Nobody has been really supportive and I've had to deal with this on my own for a long time. I guess that you learn how to deal with it, but I'm glad to know that theres a place where I can vent about this. I really appreciate this website. I don't feel so alone anymore. Thanks so much to the creators of this site!

Title: Re: Newbie!
Post by ClusterChuck on Mar 22^nd, 2007, 12:37pm

Have you ever been diagnosed, by a doctor? The reason I ask, is that a few points don't sound like clusters. Maybe you have another type headache, that would be easier to treat.

What sort of tests have you had done?

What preventatives have you tried? Abortives?

I truly hope you DON'T have them, but if you do, welcome aboard!!! This is the best place to be.

Read, read, read. And don't be afraid to take some of the information to your doctor.

And ask questions. We will do our best to answer them!

Chuck

Title: Re: Newbie!
Post by Rosybabe on Mar 22^nd, 2007, 1:22pm

sorry to hear you are in pain!
we all know what feels like..

chuck is right, you need to go and see a doctor so he can prescribe the right medication for you...codeine will not help, will make it worst..please talk to your Dr.

and welcome aboard, we are here to help and support!!!

Title: Re: Newbie!
Post by Guiseppi on Mar 22^nd, 2007, 1:56pm

What they said as far as a diagnosis!!!! That's definitely your first step! Then read like a mad woman and learn how to manage these things! My regimen, I'm episodic like you with breaks lasting as long as two years. When my cycle starts:

10 day prednisone taper, starting at 80mg a day, while I start taking my lithium working up to 1200 mg a day.

I stay on the lithium for an initial 8 weeks, then after 4 weeks of pain free time I start tapering back off of it and see if I get bit!

For the headaches I breathe pure oxygen from a demand regulator, most use a non rebreather or "cluster" mask at up to 15 lpm flow rate. I also use oral cafergot with my oxygen cuz they come back in about 15 minutes of stopping the 02, others don't have that problem.

When all else fails I use the imitrex injecors, but they're expensive!

That's what works for me to "manage" these damn things. You will see almost as many management systems as there are people on the boards and it takes a lot of trial and error. No cure yet but you can certainly keep the beast in check. If you can, PLEASE try and get the oxygen prescribed, it's a miracle worker for many of us.

Like Chuck said, I hope you're wrong and it's not CH. personally, I think it is! So pull up a seat, welcome to your new second home and get busy reading!

Guiseppi

Title: Re: Newbie!
Post by thebbz on Mar 22^nd, 2007, 8:34pm

Cant say what you have, however being islolated with CH aint no party. Quit it. Get to the neuro and get diagnosed. OUCH.com check out family services about the family situation. Take the cluster quiz on the left. Tell us,,how did you do?
Hope you get to doing better
jb

Title: Re: Newbie!
Post by pieface_49 on Mar 26^th, 2007, 10:41pm

Hello from another newbie :) I wrote it in another post, but will write it again. My episodes began in 1993 for about a month and disappeared for another 10 years. It sticks around for 6-8 weeks and goes away for a while and will reappear. It is cyclic and once it starts my big hitters will normally appear within an hour of when the last one hit. I still do not know if I have Sphenopalatine Neuralgia or CH. The symptoms are very close, perhaps identical. The book "Trigeminal Neuralgia, Fighting Back" led me here. The book is written for us non-doctor people. From the book I could see four possibilities. I am now down to the two maladies listed above and am leaning towards CH. Document what is happening with you, let nothing slide and see a good Neurologist. I say "good" because mine keeps wanting to clump me back as general Trigeminal Neuralgia (TN-1, possibly Chronic TN-2).

Like said earlier, take the "cluster quiz".

Welcome and I hope to never hear from you again because you have found a solution to your illness.

Title: Re: Newbie!
Post by LeLimey on Mar 27^th, 2007, 2:13am

on 03/26/07 at 22:41:20, pieface_49 wrote:

I am now down to the two maladies listed above and am leaning towards CH. Document what is happening with you, let nothing slide and see a good Neurologist. I say "good" because mine keeps wanting to clump me back as general Trigeminal Neuralgia (TN-1, possibly Chronic TN-2).

Sounds like you should take your own advice and see a headache specialist neuro. Getting treatment for the wrong condition can kill.