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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Makes me cry
        
(Message started by: welshdan on Apr 20^th, 2004, 9:12am)

Title: Makes me cry
Post by welshdan on Apr 20^th, 2004, 9:12am

Its 2 hrs since the last hit and have been exploring this site while waiting to see if the beast comes back. Its so good to know that there is this much support and love out there. I'm down and emotional at the moment but the stories of pain and suffering have had me in tears for each and everyone of you and myself.
I'm 31 and I've had the beast since my late teenage years but consider myself lucky in that i go PF for 18mo to 2yrs (sometimes 3) and my bouts last 2 - 3weeks. I get up to 3 attacks of 7-9 on the scale a day and frequent shadows. Alarm clocks are my speciality for a good 9 to start the day. A walk in the park compared to some of you, especially you poor chronics<hug>, but enough to drive me to despair.
I'm in the 3rd week of a bad bout and am losing it. I've moved around a lot and have never really found a good doctor. For the first time ever today, I managed to time a doctors visit and an attack and presented myself sobbing, shaking and utterly defeated in front of my GP. The look of horror and complete panic on his face told me he had nothing to offer me shortly before he told me himself. He asked why I hadn't gone to a hospital before telling me that he'd refer me ASAP and then started to try and get me out of his door. Through my sobs, I said I couldnt possibly go out onto the street and needed a private room to ride out the pain. He let me use a spare room at the surgery and that was it. After 1 hour of muffled sobs due to the pain and hopelessness of it, I left.
I have 10mg Maxalts to abort the pain but seem to take them too late. I have so many shadows, I couldn't possibly take one every time and by the time I know the real beast is coming, it seems to be too late.
In the depths of despair these bastards hold me, all I want to do is have a drink and forget the pain thats waiting, forget the job that is slowly slipping from my grasp, forget the mounting debts as I sit at home. This needs to end soon. I know it will, but I need it to soon.
Thanks for listening.
D

Title: Re: Makes me cry
Post by UN_SOLVED on Apr 20^th, 2004, 9:49am

Damn D, sorry you're in so much pain. If the Maxalt is taking so long, have you tried Imitrex ? Alot of us here use the injections. Hang in there ... you're not alone. And oh yea, Welcome Home !

Unsolved

Title: Re: Makes me cry
Post by welshdan on Apr 20^th, 2004, 1:15pm

Thanks unsolved. It does feel nice to find a place where so many would know what i'm on about. :-)
For some reason, my referral letter won't be available until friday, but as soon as that happens, i'm going to be banging down the door of my local hospital to get an appointment ! O2 and imitrex will have to be the way forward.
This website has already helped me. Thx all.
Dan

Title: Re: Makes me cry
Post by pubgirl on Apr 20^th, 2004, 5:37pm

Hi WelshDan!

Wendy the Brit here. Welcome to clusterland. Sorry you are having such an evil time of it, but help is available for you whenever you need it.

Do you know about OUCH UK? We are the support and expert patient group for UK sufferers based at www.clusterheadaches.org.uk.
You will find a lot of very friendly people there, we have a Helpline where you can talk to other sufferers, and we are pretty good at helping people get what they need within the NHS system.

We also have meetings and get togethers, the next one is in London on 27th June, and the CH guru Prof Goadsby is the speaker, so it should be worth going to.

Would be good to talk to you there. We have a newly set up, slightly experimental board for new sufferers where someone with in depth knowledge will answer any questions, and a busy members board for OUCH Uk members too. Or you can always ring us on the Helpline for a chat and we can send you loads of good info.

Hope to see you there and here

Wendy

Title: Re: Makes me cry
Post by Robert the....... on Apr 20^th, 2004, 6:33pm

Hello Welshdan,

Welcome to the Board! and Sorry that you are Virtually Med Free and in Pain I don't wish that on anyone!

Hope you get what you need ASAP after your referal!
Keep your head up!

I may well see you on the OUCH UK board

Keep posting
Scott

Title: Re: Makes me cry
Post by Filbert on Apr 20^th, 2004, 8:16pm

Hi Welshdan and a warm welcome from me too! Sorry you have CH! At least you have found a place where people will understand your suffering. Took me 18 years to realise I wasn't on my own. Keep posting!!

Filbert

Title: Re: Makes me cry
Post by TxBasslady on Apr 20^th, 2004, 11:44pm

It is truly sad to think that the patient has to educate the damn docs.

Welcome to the board D....

You might try a Prednisone taper....it broke my cycle. It doesn't work for everyone. But it's cheap and can't hurt to try. My hits always came at night. Always hour and 1/2 after going to sleep. I started sleeping in a reclined position, and that helped tremendously. I also take melatonin at night. What few breakthroughs I had, the melatonin got rid of.

Hope you can find a doc that can help. Stay with us and let us know how things are going for you.

PF vibes,'

Jean

Title: Re: Makes me cry
Post by welshdan on Apr 21^st, 2004, 7:33am

Thanks for the warm welcome everyone. I'm feeling a lot more positive today. A small one at 1 am and a little baby at 9.30. I think (fingers crossed) that this bout may be ending. ...Or its playing with me ;-)

Wendy, sounds like we'll get on (pubgirl) ...I can't wait for a drink at the end of this :-) The meeting sounds great (I live in Clapham J at the mo) and to listen to Prof. Goadsby would be very interesting. I'll certainly use the helpline. I found out recently that my cousin is a neurology SPR and we had a good chat last night. He mentioned Prof Goadsby.

How long will it take to get to see a neuro in the uk on the nhs ? My cousin said the wait list in Wales was up to 18 months and England 6 - 9 !!!! I may be in the next bout of attacks by then. Eeeek.

I get the impression that the awareness of CH, although terrible, is much better now than a few years ago. Is it better medecine and diagnosis or is there more CH around ? Has any research been done into the growth of CH ?

Thanks again for the warm welcome. Big hug to all.
Dan

Title: Re: Makes me cry
Post by pubgirl on Apr 21^st, 2004, 12:53pm

Dan

The wait depends on where you are, I had a guy who managed by slightly dubious means to get seen in the same week, but some wait 3 months. You are wonderfully placed to go to Queens Square itself, why muck about with the amateurs, go there and see the best! Your GP can refer you to them or you could volunteer for one of their trials (currently 02 and Zomig nasal trials running) then you will be seen by Goadsby's team or him himself if you are particularly interesting or difficult!

I used to live in Bolingbroke Grove years ago and know South London very well indeed (lived also in Clapham South, Tooting and used to work in Brixton)

Get yourse;f down for the London meet quick via the OUCH website if you want to go as places are limited.

Talk to you soon (or on the Helpline as I am on there sometimes)

Wendy

Title: Re: Makes me cry
Post by welshdan on Apr 22^nd, 2004, 6:12am

Cool. Thanks Wendy. I've emailed ouch uk about the meeting and membership :-)
I'll phone Queens Sq in a bit an explain my situ and see where we can go. I assume that this referral letter from my doctor (soon to be ex-doctor) will be to a particular neuro in London but I'll see what I can do to go there.
Thanks for your advice. I'll look forward to meeting you in June !
Dan