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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> howdy ya'll
        
(Message started by: debs on Jan 29^th, 2005, 5:08pm)

Title: howdy ya'll
Post by debs on Jan 29^th, 2005, 5:08pm

Dear Everyone,

I have been poking around the MB for the last week or so, and finally decided to say hello and to thank you thank you thank you! And btw, this is my 1st post ever to a MB! :)

You are a really great group of people -compassionate, intelligent and well educated about this bizarre disease (disorder???) we have. You all have helped me out more than I can express. It is very comforting to know I'm not alone any longer, there are folks who understand.

After nearly an 18 year remission, I am having headaches again... just over 3 weeks now. Woke up at 3 am in blinding pain, and thought uh oh, a migraine... Went to the doc the next morning, got some samples of Zomig tabs and all was well until they kept coming back... and back... and back, and the tabs weren't working nearly fast enough.

I started having ha's when I was 15 or 16, not sure exactly, I think I may have had 3 or 4 cycles before this one, hard to remember exactly. I was finally diagnosed with cluster in 1986 when I was 25, near the end of a 5-6 month cycle. Had some treatments (more on that another time) that I thought cured me, and I grew out of it, and cluster was something I used to have. In fact, I had forgotten the word cluster... I would tell people I used to have migraines. But the episode in '86 was one of the worst times of my life, pure and utter hell. I was completely non-functional.

I went to the headache clinic here in Houston about 1.5 weeks into my cycle. At this point I had done a lot of research, remembered the word cluster, and when I talked to the doc, I told him I did not want to hear the word cluster... that didn't help, he told me anyway, and I already knew in my heart it was true. Couldn't stop crying thru the 4 hour clinic visit...

I got on a bunch of meds (prednisone, verapamil, cafergot for prevents and Zomig nasal for abortive), all the standard stuff. They are working fairly well, went 3 whole days w no ha last week, aborted 2-3 in their tracks and have had several lower intensity ha's --this down from 2-3 10's/day before I got on the meds.

Just a couple of thoughts --things have changed so much since 1986:

The internet is a godsend --for research, for allowing me to find you.
Triptans are the miracle drug (Miracle Drug by U2, new favorite song!).
Navigating the health insurance maze to get the triptans I need will be just one challenge -I have 12 whole Zomig sprays, so there is some time for this one.

It's just been a week now that I was re-diagnosed, and I am slowly adjusting to the idea that yeah, I got that, and spending less time in a poor me state. I understand that effective drug therapy will be trial and error to find the balance bt tolerable pain and tolerable side effects... and even to find something that works.

Again, thanks for all that all of you have done to take make this website what it is. I will probably be asking a lot of questions in the coming weeks. I think you all have a lot of good advice for the issues we face --medical and social. I have read a bazillion things on the net in the last couple of weeks, and it is kind of all a blur... now where did I see what or did I dream that?

I do realize how incredibly fortunate I have been to go for so long with no headaches.

Looking forward to chatting with you all.

Debbie

Title: Re: howdy ya'll
Post by E-Double on Jan 29^th, 2005, 5:17pm

Nice to meet you and sorry you are "back"....

One thing really hit me in your post..the use of cafergot and zomig......

To my knowledge this can be very dangerous

Quote:

If you are also taking triptans for the treatment of migraine you should leave a gap of at least 6 hours before and after treatment with Cafergot. In addition, triptans should be avoided for at least 24 hours after the last Cafergot dose. These products include: almotriptan, sumatriptan or rizatriptan.

......anyway please check the contraindications of meds if you are going down this route again.

Best,
Eric

Title: Re: howdy ya'll
Post by debs on Jan 29^th, 2005, 6:31pm

Eric -good to meet you too,

Thanks for the heads up on the triptan-cafergot thing. I do remember reading about that, but it has kind of gotten lost in the info overload. I remember thinking that must be yet another off label use of these meds. And hey, these docs are the experts right? But, I've never been the type of person to blindly follow docs orders. I firmly believe we all have to take an active role in our healthcare. If I don't who will?

I am compiling a list of questions for my follow up appt on Mon, and will be sure to add this question. I will post to the medications area with some of my questions soon, see what ya'll think.

Hoping I don't keel over from over vasoconstriction before then...
Best,
Debbie

Title: Re: howdy ya'll
Post by Kris_in_SJ on Jan 29^th, 2005, 7:51pm

Welcome Debbie,

Glad you found us and that the board has been able to help in some way.

Keep posting and letting us know how things are coming along for you.

I am one of those who has fairly long periods of remission. Usually 3-5 years between and didn't start getting them until I was around 40. Just came off my third cycle this past summer. Quite a "wake-up" call! After 4 years, it's easy to forget. I can't imagine going as long as you!

Thanks to the family I've found on this board, I won't be forgetting again. Welcome.

Kris

Title: Re: howdy ya'll
Post by debs on Jan 30^th, 2005, 7:10pm

Hola Kris,

thanks for the welcome, i appreciate it. yes, I won't ever forget either, now that I know what this cluster thing is all about. I only hope I can give back a bit of what I have gotten so far someday.

When I first found you all, I was amazed to learn that so many others have gone thru this too, and for so long, and to understand in some way what that is like... I used to know it quite well and am learning all over again. I resisted --that can't be what I have! No way! Adjustment and acceptance of sorts will come, i know, in time. it is still all a bit overwhelming.

I have been doing pretty well, only a 5-6 ha yesterday am, had what I used to call twinges all last night, 7-8 hours --guess that is what you mean by shadows. It finally came, but managed it very well with the zomig nasal spray. So far today, only shadows.

Hope you are well,

Debbie

Title: Re: howdy ya'll
Post by RichardN on Jan 31^st, 2005, 1:12pm

Do get a script for OXYGEN - 15lpm regulator w/non-rebreather mask. Can abort within minutes if used early-on in the ha. I can deal if I don't have to "dance"

Be safe,

Richard

Title: Re: howdy ya'll
Post by guesst on Jan 31^st, 2005, 1:18pm

on 01/31/05 at 13:12:55, RichardN wrote:

Do get a script for OXYGEN - 15lpm regulator w/non-rebreather mask. Can abort within minutes if used early-on in the ha. I can deal if I don't have to "dance"

Be safe,

Richard

I second this post. Also you might want to try melatonin at night, it can help with the night-time hits.

Title: Re: howdy ya'll
Post by lionsound on Feb 1^st, 2005, 10:11am

on 01/29/05 at 18:31:48, debs wrote:

But, I've never been the type of person to blindly follow docs orders. I firmly believe we all have to take an active role in our healthcare. If I don't who will?

Exactly! I feel the same way. :)

Quote:

I am compiling a list of questions for my follow up appt on Mon, and will be sure to add this question. I will post to the medications area with some of my questions soon, see what ya'll think.

Great idea! We look forward to hearing form you.

Please stay safe with that med combo.
Be well,
lionsound

Title: Re: howdy ya'll
Post by sandie99 on Feb 1^st, 2005, 1:57pm

Welcome, Debbie... :)

So sorry that your CH is back. :(
I am very glad that you found us!

And do ask everything! Your CH family will do their best in replying. :)
One thing I have learned as a journalism student is that there is NO stupid questions.. ;)

I am happy for you that you've found meds which work with your head. Good luck with your fight with the beast!

Best wishes & PFdays,
Sandie

Title: Re: howdy ya'll
Post by debs on Feb 2^nd, 2005, 1:59am

thanks all for your kind words and advice.

Did get some O2 today, but not the correct regulator. After I try the 8L/m, I think I can call the doc and he will authorize the change if it doesn't work at that flow rate.

Unfortunately, the zomig nasal quit working 2 days ago, only 9 days that it worked. I will try the imitrex injection for the next HA (24.5 hrs now, no headace!)

As for my med combo, I did ask the doc ---more on this later in the meds thread, but the short answer is "we do this all the time" maybe not so comforting, but there it is.

Still lots of questions racing around my poor head, but one thing at a time.
baby steps here for now. Trying to get a handle on managing this is nearly a ful time job, so my real full time job is suffering terribly. Luckily my Company has been very understanding. So far.

Be well,
Debbie