Hi I am Stephanie, I am 21 years old and have suffered with cluster headaches since I was around 14.Since they first began I have been misdiagnosed time and time again. My GP is an absolute idiot who thinks the square route of 9 is a motorway! I am at my wits end and struggling to get the right treatments (if there is any! nothing seems to work) My boss thinks I over exagerate and my doctors thinks the normality of me when I have attended appointments conflicts against the description of my headaches. I am having a really hard time dealing with this and am hoping this website relieves some of the frustration and worry.
I tend to have the headaches on thr right side of my head and it always seems to be unbearably intense behind my eye. I usually wake up round the same time in the middle of night with them. Due to this I often avoid going to sleep and force myself to stay awake until I cant keep my eyes open. I am currently on 3 different types of medication and feel patronised by work colleagues who are convinced that cluster headaches are over exagerated twinges which can be resloved with standard painkillers !!!! I have gone over my allocated sick days and now am having my wage docked for each day I am absent and this includes for appointments. I have just been granted a referal only to be told my appointment will be in no less that 7 months time. This came after having a couple of random faints , the last one quite severe after coming round and having a loss of control of my bladder. GP thinks it is just "one of those things" Just swings and round abouts at the minute!

Any advice or suggestions welcome in the meantime lol To know what you are suffering with and the rest of the world deny all knowledge of it is pretty annoying.

When I am having a bad day "I scream and shout and cry in the hope that I will exhaust myself and be able to fall asleep or that it will go away! My mum says I play "Dracula" as I hide myself away in the dark and pretty much scream the house down!"

When I am having a "Good Day" I am spontaneous, Random, Funny and really out going I do not take any thing too seriously. I love the outdoors and anything mischeavous :)

Looking forward to hearing from fellow sufferers x

Stephanie you came to the right place.

There are definitely things we know about here for treating CH that IDIOT, bordering on crimminaly ignorant, and unfortunately fairly typical doctors like yours don't have a clue about and don't want to learn.

You must stick around, research, ask questions, etc. That's what I and many others have done, and through doing this many of us have found significant relief.

So for starters, what meds are you currently on?

As far as the ingoramus types you are surrounded with, that is a tuff call, and something lots of us have had to deal with. There's an employer letter somewhere on this site you might want to check out. You could forward links to neurological sites or print outs where this is described as the the worst head pain known to mankind, "suicide headache" etc., but be prepared for those who read that to tell you that "their wife gets migraines too" or some such BS.

I'd recommend looking at a bunch of other people's posts here in the Getting To Know Ya forum right away - the responses there should give a good first indicator of what the CH vets around here have found to be most effective for killin' (or at least severely wounding!) the beast.

Strongly suggest you contact your excellent support group:    START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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What follows is bit confused but consistents of elements of several messages for your area--gives some leads.

Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
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City of London Migraine Clinic [and other types]  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hi Stephanie,

Welcome and sorry that you have had to join the family. As Bob said, ask your GP to refer you to see Manjit Matharu, although he has a very long waiting list, (unless you go privately!!), I'm still waiting on an appointment.

I was diagnosed over 20 years ago and have always been on Verapamil until recently, which worked well for me, but unfortunately I have a heart condition and they have taken me off it now. But I went to see my GP and asked for 02, which is fantastic and kills the beast very quickly.

Take care

Caron x

Quote:

My GP is an absolute idiot who thinks the square route of 9 is a motorway!

Now THAT is funny!!!!!  A lot of us here totally understand your frustration with your Dr.  I'm sorry, but he is a moron and you need to find someone else.

There is help right here as well as OUCH UK like Bob Johnson directed you to.  Never give up Stephanie.  Never.  and come back here to vent, ask questions and let us know how it goes.

    HUMOR...is one of the things that keep us all sane around here as you will see if you read for any length of time.  I've always said this condition won't kill us...but some of us might just kill our Doctors.

They pretty much refused to put me on medication and said it was probably just a hormonal defect that they "would look into". Eventually they put me on standard Migraine Tablets Pizotifen along with Sumaptripan which more than anything make me worse. My uncle works in connection with Neurology in some way ? and suggested Verapamil, unfortunately they is no 2 ways of going about getting this I Just have to wait. Since my last appointment with the Moron I have stopped taking everything and am just "gritting my teeth and bearing it"
More than anything it is the worry and since I was about 15 I have kept a log of everything I do, eat or drink in a day just because it keeps me sane and I am reluctant to believe that this is just a "phase" I did go and see a counsellor as my social interacting skill have pretty much dissapeared, I dont really go out anymore becuase of moods swings and I am always too tired or frightened I will have an episode! They put this down to anxiety.
After reading through the site and checking out the links (Thanks Bob) I can see I am at the start of a fairly long process.
Thanks for the advice guys much appreciated. It so weird how isolated this thing can make you feel. xx

Your not alone. I feel isolated to. So it is nice to vent hear. Get some Red Bull concentrated, right before a attack drink up, helps me, maybe you too. I do carry with me at all time. I've been out alone pumping gas and a attack comes, The pump in the car, I sit for 15-20min to go thru a headache, after that I pretty much don't go out alone.

I suppose the Sumatriptan they put you on was pill form. If so, that would be clueless of them, but unfortunately a very common error. Injectable, or for some people even nasal inhaler sumatriptan (imigran/imitrex) can abort CH attacks very effectively.

Sounds like you're being treated for migraines. Well this is a good place to vent about doctors being A-HOLES!!  :D

Yeah actually it was in m Pill form, it literally doesnt do anything just makes me a bit woozy and slightly less co-ordinated!! I knew they were treating me for migraines and have objected for the past 12 months as Sumaptriptan does sod all !!!! It is only in the past week or so they have decided to even consider CH and have refered me to someone else!! Doctors really are ignorant assholes!!!

Well let the record show then that we are in complete agreement about doctors.   ;D

Need to respond to this Steph.
I certainly know what you go through with the ignorance of our health service.
It really is dependent whether your GP has read anything or experienced CH.
There is plenty of info on this site to help as i've found.
You want to give me a pm i'm here and by the way only about 40 miles away as the crow flies
Colin..

no way!! where abouts I live about 10 minutes north of manchester! I am thinking about changin my GP however I just wonder if it will be added stress and added delays on something that has already been a several year rollercoaster!
Suprisingly having an ok day today fingers crossed! Its still early!

Look at the NHS Choose & book system on-line daily you might be able to get a cancellation, BUT do check what the cancellation if for , it might say neurology but it could be a different part of the neurology department than you want , I got an appointment in two weeks but ended up in an M.E. clinic (who were very apologetic and booked me in for a MRI scan) but it was all a bit of a wast of a day.

All the best
Nigel