I'm Angela, as you probably guessed.
I first experienced this nightmare last year and was mis-diagnosed with migraines and tension headaches. I started to worry I really was the hypochondriac the doctors made me out to be. Medications didn't work, blood test showed nothing so they started me on Sumatriptan. By the time I'd been prescribed this, about two months they originally started, they stopped.
Unfortunately, they have re-appeared again this week - a whole year later.
I'm due to go to the doctors again tomorrow.
I looked it up on wikipedia and found this site and after reading other sufferers comments on the first page, I actually cried. I'm so relieved that I'm not alone in this, as horrible as it is for other people to suffer this too.
So we're that special 0.1% it talks of?!
Thank you all for being here and to whoever set this up. It may not be a cure but it really does help to know I'm not making this up or going insane for nothing!

Welcome to the board, so glad you found us. yes it's rare, yes it's currently incurable, but the good news is by educating yourself, it's very very manageable.

It's now your job to educate yourself, form a partnership with your doctor, and plan a treatment program. The good news is you don't have to do it alone. Welcome to your new second home!

Joe

Thanks for the reply.
My main problem is convincing the doctor what is wrong with me, they usually don't take too kindly to self-diagnosis!
They finally agreed last year that the problem was CHs, so hopefully they will understand tomorrow.
Will a GP sign you off work with this, I'm self-cert for the first five days but unsure what will happen after this? My last bout lasted around two months  :-/

Hi Angela,

Welcome.   You may want to find a doctor that specializes in headaches.  There are doctors that know about CH.  And, there are also doctors that are willing to learn.  The trick is finding one.

Joe is right.... You can live with CH.  Read all you can here.  The more you know the better   prepared you'll be to help your doctor find the right treatment for you.

Jeannie

Thanks for the advice.
It doesn't seem like it's that recognised here in the UK, so it could be difficult, but I'm going to push for all the info I can get tomorrow. Went through hell with it last year and was pretty much made to feel like it was "all in my head".
I won't be taking no for an answer tomorrow, I just hope one comes on while I'm there!! That might make them understand!!
;D

Hi Angela & Welcome to the nut hut.

The others have given you good advice & I'm sure Lelimey will be along soon & being a Britt she will set you right on where to look over there, if she cant sort things out then the whole world is stuffed.

Cheers
Barry

Thanks!
Might have to pop off for a bit soon, mine usually start up around this time ready to plague me into the night!

Some find that drinking an energy drink at the onset of a HA helps to stop the attack.  Red Bull or anything with caffeine and taurine should do the trick.   Drink it as fast as you can at the very first sign of a hit.   It has helped me in the past.

Jeannie

That might be worth a try, although both give me bad stomach cramps, I think the pain of those would be worth it to lessen this! I'll get stocked up for tomorrow!

might try a coffee flavored energy drink, less carbonation and funky taste.
they go down smoother and faster there by give a little faster relief.
just a thought.
its what i found to be most helpful.
examples in the US are monster
mean bean, locha mocha, russian varieties

Ooh thank you, I haven't sen those over here but I probably haven't been looking. I'll see what I can find!

Been to the doctors today, they've given me Sumatriptan but said that if it doesn't help they will try Verapamil. Next step after that is oxygen.

They were realy helpful and actually admitted not knowing that much about it, but looked it up and really listened to what I had to say. Hopefully these will help but if not, they will sign me off work while they look into it.

Have you only got a diagnosis from your GP Angela?
They don't have the capacity to diagnose this. You need to see a HA specialist neurologist as with this kind of pain, nothing can or should be ruled out. You NEED an MRI. If nothing else, the wrong meds can kill. As a for instance, there is a specific type of migraine called Basilar Arterial Migraine in which the pain is awful but triptans can kill.

CH is definitely recognised within the UK, there is OUCH UK for one thing which is the organisation for the understanding of cluster headaches. If you google CH they will show up.

I'm only in Notts, if you want to chat or need any more help please feel free to give me a shout!

Helen

wrote on Feb 12^th, 2009 at 9:56am:

Have you only got a diagnosis from your GP Angela? They don't have the capacity to diagnose this.

Not necessarily, Helen. I was first dignosed by my GP. He was the first to order an MRI, and he was also the one who IMMEDIATELY prescribed as much high-flow O2 as I needed. It is, in fact, his prescription that is still on file with Apria to this day.

There are a few really good GP's out there.

Brew, here in the UK a GP can't order an MRI. That would have to be done by a neuro (or any other specialist that wants one)

Yes, only went to see the GP this morning. Haven't been advised about seeing anyone else but I assume I'll be back on Monday so I will speak to them then about an MRI scan. They did suggest it last year but after weeks of taking different tablets and having blood tests, by the time they decided to do one, it had stopped happening.

I've looked at Ouch UK and a few others and mentioned it to the doctor. Although she was familiar with the condition, she was keen to look into it in more detail before going any further, which assured me!

That's great!   It sounds as if you have a doctor that is willing to learn.  You can work together to get your HAs under control.

Jeannie

I really hope so.  :)

There are over 600 types of headache many with cross over symptoms.

In your first post you said doctors don't like self diagnosis so from that I am deducing you went to them and asked them if that was what you had based on symptoms you'd read on the internet.

There is a very real danger with that. It is very easy to only relay certain symptoms or to predetermine that is what you have. THAT is why it is essential you see a headache specialist neurologist and have an MRI.

GP's spend approximately a day learning about headache in the course of their training. CH is not a common headache so it doesn't take much to work out that most of that one day is taken up with more common headache types.

I have a wonderful set of GP's at my surgery. They are all amazing and all agree with each other in saying their job is to treat the regular stuff and refer the stuff on that's outside their expertise.

I cannot stress highly enough the dangers of some of the meds we use on "wrong" conditions. Getting an MRI isn't an option, it's necessary. It is the only diagnostic "tool" as such for CH and is only really useful in that it shows up what isn't there. If nothing is there then it's more likely to be CH however as the BNF itself says, with pain of this morbidity, an MRI is necessary to rule out other conditions or tumours.

It's absolutely not a chance I would recommend you take.

Helen

Angela,

Helen does bring up some good points.   CH has been a part of my life for a very long time.  I guess I have to say that if I suddenly one day got hit with this kind of pain, I would want to make sure that there was nothing more serious going on.  If your doctor is  willing to help you, then I would guess that she wouldn't be opposed to referring you to a specialist.   It is better to be safe than sorry.

Jeannie