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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Thanks all.
        
(Message started by: Jeff2 on Feb 8^th, 2007, 10:54pm)

Title: Thanks all.
Post by Jeff2 on Feb 8^th, 2007, 10:54pm

I am so glad to have found you all. I'm 41 years old and am just experiencing my first cluster. Wow! Bracing to say the least. (Who named these things headaches, anyway? It's about as descriptive as calling a tsunami a wave.) This is my third week of dreading the coming of night. I seem to get them between 8 and 10 p.m.. If I'm asleep, I wake straight up. Just finished this nights visit. The coffee helped keep it to 1/2 hour or so, but now I'm wide awake. Sleep deprivation isn't all it's cracked up to be.

After reading your posts I think I am actually more fortunate than most CH sufferers. The pain is somewhere between a 7 and an 8. Could be worse. And I was fortunate to be diagnosed on my first visit to the walk-in clinic. I have an appointment with my GP next Wednesday and I will be pushing for a referral to a neurologist.

Thanks again. I don't feel so alone and my wife isn't as frightened as she was. She's still scared (me, too), but understanding the problem helps.

Title: Re: Thanks all.
Post by georgej on Feb 9^th, 2007, 12:07am

Welcome, Jeff.

Sorry to hear that you're just starting with these. Best advice I can give you here is.....read, read, read. There are thousands of person/years of experience with CH here.

Feel free to ask any questions or talk about any concerns you might have. Please keep us informed how you're doing, and let us know how your visit with the neuro goes. You're taking all the right steps.

And try not to worry--this stuff doesn't kill you, although it feels like it ought to.

Welcome home.

Best wishes,

George

Title: Re: Thanks all.
Post by Barry_T_Coles on Feb 9^th, 2007, 1:16am

on 02/08/07 at 22:54:55, Jeff2 wrote:

understanding the problem helps.

Hi Jeff
Great attitude, you’re off to a good start & welcome aboard.
Understanding the problem helps immensely in coming to terms with, & treating our condition; once you accept the fact that you have got it & you stop asking why me you can get on with dealing with it.

Cheers
Barry

Title: Re: Thanks all.
Post by BB on Feb 9^th, 2007, 2:56am

Welcome to the family, sorry that you are here with us because of pain but we are glad we can offer you a family with real understanding.

There are heaps of very good information on the Board, just spend some time reading up on all of the threads. Brew some nice strong coffee and make yourself comfortable in the chair and read on.

Regarding medication to control CH, a few things are a must to try, as they work so well for many.

1- Oxygen : cheap and fairly safe, and can abort an attack in mins.
2- Triptans: such as Imitrex, Zomig, Maxalt etc, also can abort the whole thing in mins.
3- Prednisone taper: for bad or stubborn cycles, can take up to 75 mg per day, tapering off over 5 to 7 days to break the patterns.
4- Verapamil : doses may vary from 480 mg per day up to 1000 mg, needs to be monitored but can work very well in blocking most of the attacks.
5- For night attacks, try Melatonin from 3mg to 15 mg per night.
6- For day shadows and little ones, try Red Bull , oxygen, strong coffee etc.
7- During an attack, feel around the neck to see if you have a cluster lump, a hot tender swollen ganglion under the skin which is tender to touch, can be on back or side of neck, if you have one, apply ice there, it will help a lot with the pain. It may be inside your mouth, back of tongue on the roof of the mouth too, if its there sucking on ice helps.
8- Come here and share with us your life in cycle, whinge, moan, celebrate .... whatever, we will be happy to listen and give you any emotional/mental support that you may need.
9- If you like to try new things, look at Kudzu, Taurine, Shrooms etc also.
10- Other goodies to be discovered at a later date

Take care and wishing you many PFDAN ahead.

Annette

Title: Re: Thanks all.
Post by LeLimey on Feb 9^th, 2007, 5:11am

Your wife is welcome here too Jeff, we'll do all we can to help and support her too I promise.
There is also the OUCH US Family Services Team http://www.ouch-us.org/familysvs/familysvs1.shtml
who are fantastic, I cannot tell you the esteem I hold these people in. They can help with everything from meds advice to coping strategies to finding a CH friendly neuro in your area. I'd highly recommend you getting in contact with them
We'll do all we can to help, I promise
Helen

Title: Re: Thanks all.
Post by TonyG1 on Feb 9^th, 2007, 5:38am

Hey Jeff ! Sorry you have to be here but very glad you found this place. I can't really add a lot more to what others have said other than to say educating yourself about the condition is one of the best things you can do to help your doctor help you. Lke you, I'm a night hit person and I know that dread that comes along with sleep.... best advice on that front is to sleep when you can.... [smiley=sleep.gif]

Melatonin helps some folks with night hits and sleep issues that go along with them ; I've personally not had much luck with it but others have. That is one of the things ... since everyone is different what works for one person doesn't necessarily work for another. Additionally, for some, some medications might work for one cycle but not another ... [smiley=ohjez.gif] You kinda have to figure out the medications, etc. that work for you... Initially it seems trial and error but you get better at it over time ... we're the same age and I've had these things for 20+ years...

If you have questions -- this is the place to ask

Best Regards,

T.

Title: Re: Thanks all.
Post by artonio7 on Feb 9^th, 2007, 6:50am

Hi Jeff,

Nice to meet you. As atrocious as this affliction is and at times unbearable, I think everyone in the group would agree that it has blessed us with the opportunity to meet each other. Welcome to the fold Jeff. If you're like me you'll be astonished by the healing properties this loving group radiates.
The clusters may not go away but the damage it inflicts on your soul and psyche is mended and repaired by this dynamic group of angels and saints... I've found that the folks here represent the true meaning of family and are a sterling example of humanity.

Come back often to share your concerns, pain and support, you are home.

with warm regards,
Tony

Title: Re: Thanks all.
Post by Mattrf on Feb 9^th, 2007, 12:58pm

Welcome to the funny farm Jeff, you have found the best place to be for what you have.
Come often as you can and ask questions or vent we all understand and will always listen no matter how bad of a rant you go off on. Be sure to take as much information from here with you to the neurologist to make sure he knows enough to treat you and give you what you need to fight the beast and as most will say here get O2 if you can it seems to be the best abo0rtive for most.

Sorry you had to find us but glad you did.

Matt

Title: Re: Thanks all.
Post by Jeff2 on Feb 10^th, 2007, 10:14am

Yesterday was good and bad. I had my first daytime attacks. Three in one day. The first one made me leave work. While the pain wasn't as bad for this attack as my nighttime ones, I was more depressed because of it. I'm in the midst of an important project, and the word "debilitating" kept running through my head. Monday, I'm going back to work, but this time I'll be carrying two energy drinks, Relpax, and Imitrex.

I moved my appointment with my GP to yesterday afternoon. He spent 45 minutes with me and my wife. He gave me scrips for Relpax and Imitrex. The nice part is my mom, who lives 4 mile from our southern border, is going to get them filled someplace much cheaper.

My second attack of the day was the worst CH of any yet. The coffee helped, but not much. Is there a relation between severity of attacks and lack of sleep? (The third I aborted with an energy drink.)

On a positive note, my day did have a happy ending. I slept uninterrupted for 9 glorious hours. [smiley=sleep.gif]

Title: Re: Thanks all.
Post by Wilbur on Feb 10^th, 2007, 10:51am

Did you talk with your GP about a prescription for oxygen through a non-rebreather mask at a rate of 10-15 litres per minute as needed?

Title: Re: Thanks all.
Post by Jeff2 on Feb 10^th, 2007, 11:45am

Yea,

I asked about O2, but he said that there wasn't clinical evidence to justify it. I'm assuming his info is out of date. We left him with a stack of new info. Whether he reads it or not, who knows? I've got a buddy that welds and am going to get in touch with him today. Where's the best place to get a non-rebreather mask from?

And thanks for the rate info, Wilbur.

Title: Re: Thanks all.
Post by Wilbur on Feb 10^th, 2007, 2:47pm

Here's a link that will get you started on O2 information:

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

At the bottom of the page are e-mail addresses of several fellow clusterheads that can get you started on welder's O2. I'd start with Jonny.

Title: Re: Thanks all.
Post by Linda_Howell on Feb 10^th, 2007, 4:32pm

Jeff, if you will PM me your address I will be happy to send you a non-rebreather mask.

Linda