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        New Message Board Archives >> 2002 Posts >> Hi, I am new, scared and also frustrated
        
(Message started by: pimmony on Oct 29^th, 2002, 4:21pm)

Title: Hi, I am new, scared and also frustrated
Post by pimmony on Oct 29^th, 2002, 4:21pm

I truly need advice.

For the past several weeks I have been suffering from headaches and I tried to get an appointment with my doctor about three weeks ago only to find he could not fit me in for days, even after I described the headaches. I live in Britain and so I telephoned the NHS hotline, primarily because the headaches were so painful, plentiful and I had no idea what they were and I was plain scared.

They suggested it sounded like cluster headaches and to see my doctor withing thrity six hours. I first of all searched and found your site on Google and completed the tests you linked to, with one hundred percent success.

I have tried all that you suggested. It is only yesterday that I attended an appointment with my doctor and the worst possible thing happened - he totally dismissed the notion of my having cluster headaches, in fact he darn near blanked me on the basis that the affliction is rare and more often occurring in men( I am female). I had to fight to get attention, and then he prescribed Inderal.

I took it last night and tonight and all that happened is that on top of the headaches (three in a night) I now have bad side effects from a drug which I cannot see fits the bill (propranolol).

I know I do not have migraine

Before I went to the doctor I was in pain and scared, since then I am in pain, nauteous from the Inderal, scared and very distressed.

I genuinely do not know what to do, I honestly feel too worn down to fight and my poor partner is holding me a lot while I cry because it does not feel that the doctor, who I held out on visiting, will take this seriously. I thought I had told him about the pain and my need for help in terms that meant something.

I am sorry if I sound like a real sap but I do feel someone desperate, I cannot imagine this pain going on and on for lord knows how many weeks.

Title: Re: Hi, I am new, scared and also frustrated
Post by Bob P on Oct 29^th, 2002, 4:28pm

You may want to try this:

OUCH(UK) - Registered Office:

Norham House, Mountenoy Road, Moorgate, Rotherham, S60 2AJ , UK

24 Hour Infoline & Answerphone:

recording and messages only - 0161 2721702
[from overseas +44 161 2721702]

They can point you to a doctor who understands CH.

The Inderal is usually prescribed for meegraine although some clusterheads say it's helped them. there are other things which are much more effective though. I'm sure the OUCH UK bunch can help. Here's their web address:

http://www.clusterheadaches.org.uk/

Title: Re: Hi, I am new, scared and also frustrated
Post by SteveY on Oct 29^th, 2002, 5:23pm

Pimmony,

Follow the link Bob gave and read the research and how you can help thread.

You can mail me at sry2000@yahoo.co.uk

Fuck the GP, you do not need a referral from him to visit Proff Goadsby's team in London, you will get a diagnosis and a treatment plan from them.

They will contact your GP and tell him what to do.

I haven't heard of a GP yet who has questioned his diagnosis or treatment plan.

Mail me and I'll tell you more.

Believe me it's worth it.

Steve

Title: Re: Hi, I am new, scared and also frustrated
Post by Mark C on Oct 29^th, 2002, 5:45pm

Welcome pimmony,
Sorry you need to be here but glad you are.
Bob & Steve...........good job.
Mark

Title: Re: Hi, I am new, scared and also frustrated
Post by Linda T on Oct 29^th, 2002, 6:21pm

Hi Pimmony and welcome.

I, too, had a gp who didn't want to diagnose ch because I am female. However, I am a bonafide clusterhead and have been since 1984.

Sorry the inderal doesn't work. I have been taking it since April and it has worked well for me but I know I seem to be the exception rather than the rule.

Hope you get some relief soon.

Wishing you all PFDAN always, Linda T

Title: Re: Hi, I am new, scared and also frustrated
Post by 2late on Oct 29^th, 2002, 6:30pm

welcome to the board Pimmony, it's ok to be new & frustrated but not scared, if it is ch this is the place to be. good luck to ya & let us know your situation. .........2late

Title: Re: Hi, I am new, scared and also frustrated
Post by Charlie on Oct 29^th, 2002, 7:37pm

Welcome to our asylum.

First, your GP sounds like a jerk. Lots of women get CH.

Secondly, he prescribed Inderal which was the first and only drug my neurologist used for cluster headaches at the time. For me, it was most of the time, effective.

There are so many things to look into but you have the big guns there with Dr. Goadsby & company.

Bob and the others gave you great advice.

One thing you need not worry about: Cluster headaches are not fatal. They just hurt like hell.

Good luck and let us know how you're doing.

Charlie

Title: Re: Hi, I am new, scared and also frustrated
Post by Lori on Oct 30^th, 2002, 2:23am

Welcome Pimmony,
I couldn't give any better advice so I will just say to hang in there and keep fighting to get the help you need. Don't give up because there are treatments that help many. I'm sorry you must go through this. :'(

Good Luck to you..

Title: Re: Hi, I am new, scared and also frustrated
Post by Redeye on Oct 30^th, 2002, 2:46am

Hi Pimmony,

I also live in Britain and have been living with clusters for 19 years now. I only discovered this site a week ago after the pain switched sides and I panicked after suffering the worst cycle I've ever had.

My doctor treated me for sinus problems for 4 years before I finally switched doctors and was referred to a neurologist who diagnosed me as a typical sufferer immediately. If like me you are using the NHS the only option may be to switch doctors.

Title: Re: Hi, I am new, scared and also frustrated
Post by pimmony on Oct 30^th, 2002, 4:27am

Gosh thanks so much for all the responses. I am going to take a guess here and say that I bet you know exactly how much they mean to me (figure you have all been there).

I felt quite teary when I read them partly from relief and being genuinely touched that strangers extended the kindness you have shown - partly because I just had a horrible episode which lasted over an hour, with buckets of tears and nose-blowing.

I am just popping off a couple of mails to find out more about the ouch folk ! I have started reading the site and been through the personal profiles. you know, if my problem does turn out to be CH, I am incredibly lucky - reading the profiles of folk who had no access to the internet, with all its communication, support, advice and information.

Thank all the gods in all the heavens for all of you

Title: Re: Hi, I am new, scared and also frustrated
Post by Svenn on Oct 30^th, 2002, 4:44am

Guess that everything good has been said here but welcome to clusterville so here it comes

WELCOME TO CLUSTERVILLE

Its a lot of really good advice here so you have enough to start with my friend

Svenn

Title: Re: Hi, I am new, scared and also frustrated
Post by Drk^Angel on Oct 30^th, 2002, 11:19am

Doctors suck. I'm gonna start carryin' around a coil of barbed wire, and the next doc that says something stupid is gonna have it bashed into their temple, eye, face, wherever. Dumb damn doctors need a royal ass whoopin' to lower their arrogance level a bit.

PFDAN.............................. Drk^Angel