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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> A Diagnosis!?!
        
(Message started by: rubberplant on Sep 6^th, 2004, 7:35am)

Title: A Diagnosis!?!
Post by rubberplant on Sep 6^th, 2004, 7:35am

Finally! I have been suffering from what I had thought were atmospheric pressure migraines for some five years. On the second of September I went for a routine neuro appt. for my Temporal Lobe Epilesy and we began talking about my “Migraines”.

Within minutes the Registrar was diagnosing me with something that sounded as though I should be having a mildly painful headache. “Cluster Headaches?!” To describe my pain as a headache seemed ludicrous. Having suffered from Temporal Lobe Epilepsy for years before being diagnosed and just thinking that either I was Mad or that everybody felt the same! I thought with these headaches lasting for upto 6 weeks, twice a year and 2-4 headaches a day was just another thing in my brain that was screwed up and that no-one else was going through this.

My neurologist (bless his cotton socks!) was fantastic and pointed me toward this and the OUCH website for info and support. Wow! I have been laughing and crying and regaling your stories to everyone I meet at the moment. Laughing, because when you read someone elses experience and realise that you are going through the same experience, hysteria is a natural reaction to the understanding that you are not mad and most importantly, NOT ALONE!!!

I am currently in remission at the moment, as my last cluster appeared at the same time as my wife and myself were waiting for our first child, Jacob, to arrive. (had 2 during the labour!) that was 2 months ago and I am becoming scared that every little headache is the shadow of something stronger. The knowledge that I can come to a place like this and meet people like me is uplifting to say the least.

My neuro is writing to my doctor about O2 and subcutaneous Sumatriptan. Both of these sound laughable (you’ve got to, haven’t you?) I know that something has to help when they hit.

How do other peoples’ partners, wives, husbands deal with the cluster? My wife can end up crying as much as I do (through my left eye) through these bouts. What support can they be offered?

Thanks for reading .

Best Wishes all, especially those in the grip at the moment.

James

(down to 2 cigarettes a day!)

Title: Re: A Diagnosis!?!
Post by BobG on Sep 6^th, 2004, 8:27am

Welcome to the board James Rubberplant. Sorry you had to come looking for this site. Read, read, read.

Imitrex and O2 are the most popular abortives. Did you ask about preventives?

Bless your wife. We love her already. There is another part of this board for supporters and has some wonderful people there. Maybe she would like to look in there and join us here.

And, way to go on the cutting down on the smokes.

Title: Re: A Diagnosis!?!
Post by rubberplant on Sep 6^th, 2004, 9:57am

Hi BobG,

I am unsure as to what my options are regarding preventatives as I already take Gabapentin and Tegretol Retard for my Epilepsy. He did mention something beginning with V? Can't remember now. Was slightly reeling from the diagnosis.

Of course reading medical pages about drugs and side effects doesn't help that much as I find them quite confusing. Will phone a friend who is a vet. He has done drug research for me in the past.

Best Wishes

James

Title: Re: A Diagnosis!?!
Post by BobG on Sep 6^th, 2004, 10:24am

V?....verapamil is the med of choice as a preventative.

Title: Re: A Diagnosis!?!
Post by Woobie on Sep 6^th, 2004, 10:27am

Welcome Rubber.......

Nice to meet ya

get the wife on the supporters board... lots of stories over there i bet she can relate to - and stuff... just for us supporters.

peace out........
tina

;;D

Title: Re: A Diagnosis!?!
Post by rubberplant on Sep 6^th, 2004, 10:28am

Great!

That apparently doesn't mix well with Carbamazepine.

I find myself struggling at the moment with dread about dealing with next cluster and new drugs.

It may just be the lack of nicotine!

cheers Bobg

Jam

Title: Re: A Diagnosis!?!
Post by rubberplant on Sep 6^th, 2004, 10:31am

Thanks Tina,

the last message got out of place!

I hope I learn how to use these boards before the next one.

Til then I'll just have to laugh at myself.

I will get wifey to have a look at the boards. It's only fair that she doesn't think she has married a nut and produced a miniature with him!

Best Wishes

J

Title: Re: A Diagnosis!?!
Post by miapet on Sep 6^th, 2004, 11:05am

James, welcome! Sorry you have to be here though.
As for the 'marrying a nut and producing a miniature' hahhahaha . . .I don't know about the nut part, but, if it's any consolation, none of D's kids have CH . . .he has 2 boys and 1 girl, and *knock on wood* none of them show any signs of CH.

Anyway, BobG and Woobie are right, lots of supporters on the supporter board, and, I'm sure, lots of stories your wife can relate to. When I first came here, the supporter stories were like reading my life story . . .and they were more than generous in listening to me, and letting me know that not only was I not alone, but that they understood everything I was feeling.

May you stay in remission forever.

*positive light and energy*
miapet (supporter)

Title: Re: A Diagnosis!?!
Post by synergy on Sep 6^th, 2004, 11:56am

Welcome James! ;;D

Im a surporter to my chronic partner marc and i strongly recommend that you try the o2 therapy. It works for about 80% of sufferers and has saved marc.

We have a 7 month baby as well so i know how hard it is for your wife - she sounds like a wonderful surporter and im sure she will feel very relieved to speak to other supporters.

The other good thing with oxygen therapy is that it wont interact with any of your other medication!

MAke sure you get it prescribed properly - you need to get a high flow regulator, non-rebreathable mask and AF cylinders. If you join up OUCH uk then you can get these on trial loan as the regulator is not prescribed on the NHS and costs a lot.

Send me a private message if you want to know more about the o2 - click on the link to the left to go to OUCH uk!!

Hope to see you over there - luv sarah xx

Title: Re: A Diagnosis!?!
Post by pubgirl on Sep 6^th, 2004, 7:46pm

Hi Mr Rubberplant!

Just to add my welcome (there's quite a few of us Brits here, God Help them)

In addition to the O2 information from Sarah :D, you can get an oxygen cylinder on prescription with a built in 15l/minute regulator to try out to see if 02 works for you (it does for 80% of us)
It is the CD cylinder from BOC Medispeed, and as long as your GP writes the right prescription you can get it from Boots. It is only a portable so won't last long, but it is the easiest way of finding out if it is worth getting the larger cylinder and regulator

Go to
http://www.clusterheadaches.org.uk/home/index.cfm?address=../treatments/txt_drug_oxygen_regs_cd.cfm&added=11/08/03&code=CD

for details of the CD cylinder

If you want to chat with another sufferer about how best to use the 02 or any other questions or just for a talk to someone else, give the OUCh Uk Helpline a call (all the Helpline volunteers are sufferers who are 02 users and most are Verapimil users as well)

Maybe see you 'over the pond' at OUCH UK

Wendy