Hey there,

Been looking for a couple of days and decided to join up as I need someone to relate to. somewhere to vent I think.

I live in the UK, hertfordshire to be more exact. I have had CH since i was 19, had the the 1st time before and over my 20th birthday  :-[

I get them in the spring for about 4 months starts in Feb and ends about April/May. with the worst 6-8 weeks in the middle. Get them 4 times a day at 2am, 8am, 2 pm and 8pm. 2-3 hours each.

Was diagnosed by a nice GP quite soon after my first episode 3 years ago (now i am almost 23) but not after a long run of blood tests and useless NSAIDS. The 1st GP I went to sent me off for wide bloods tests because I would also have nosebleeds before some attacks. I would get a sharp stabbing pain above my eye, nosebleed then an hour later I would have an attack.  GP advised that wouldnt prescribe nasal spray due to the nosebleeds so gave Imigran(sumatriptan) tabs on which i have tried to survive the past 2 years. Now I have moved house and registered with another doctor who I got to refer me to a neuro @ hospital because my current uni advised to get a neuro report to cover myself in cases of absence or impact on grades. My last uni refused to accept CH as a valid medical condition and would not take into account my 4 months of inability to do my uni work for 2 years. So my heart set career choice ended there. Now I am doing a degree in radiography as that is all I can afford to do (the government funds this course).

I have been struggling for a couple of years not knowing what treatment options are available. seems daft because I am an medical student and I have working in a pharmacy since I was 16 and I dont really know what treatments are available but reading the BNF (british national formulary) it doesnt give that many options for treatments.

Anyway as I am beginning to bore everyone, got my neurology appt tomorrow, just wondered if anyone had any advice on what to push for or ask about?

Thanks for reading, friends and family dont really understand, girlfriend tries but she feels so helpless about it all. I have never let her see an attack it would be too upsetting for her.

Thanks

Stuart  :P

Hi Stuart welcome to our family.
I would suggest you read the oxygen info on the right tab as a start.
The OUCH tab as well as there is much info you can print to bring to your appt.
There are many people more qualified here than myself as I am a relative newbie.
Ask questions and read as muck as possible.
All the best and good luck. To PFDS  Iddy  

Hi Stuart,

I am in the UK and *lol* have an appointment with the neurology clinic today too.

Have a look at the UK's OUCH website for treatment options in the UK.

Give the neuro' as much info as possible so they can help you esp if your due hits again soon.

Have a read of the UK BASH guidleines as that is the advice your neuro should be following.

Hope the neuro clinic can help.

You can get auto-injectors and oxygen [HOOF] on the NHS but I warn you; get a years pre-payement certificate for the drugs you get to play with it saves a fortune.

I am also studying but my Uni classed CH with chronic migraine as a disability and allow me to use the 'chronic pain/fatique' route for support. Your right a formal letter from a consultant neuro opens doors  esp. with exams.

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