Hallo,
Live in England, have four older kids (tweens and teens) just been diagnosed as having a happy mix of severe migraine and ECH, so if I am not in cluster I can relax with a soothing migraine instead.

In my spare time from pain I am working on an Hons degree and a higher certificate because I object to being forced to totally give up living by stupid pain.

Presently working on reigning in my desire to throttle the next numpty person who dares tell they know what CH feels like because they have also had a headache.  

welcome, and keep up the good fight. Coach Bill

 Welcome Katie,  Sorry you have had to find us but you will be glad you did,  even if all you get here is knowing your not alone.
 If you could take the time to list your meds and treatments the doctor has strated you on we my have some suggestions to help optimize your treatment.  Like your abortives, O2 works best for most here but it needs to be used as soon as an attack begins.  I also get migraines and it makes it hard to get to the o2 before the ch attck is to far gone but it is a must try because there is very little side effects with pure oxygen.  I use Imitrex/Imigran most of the time but the side affects are almost as bad as ch without the pain.  There are tons of prevents like Verapamil and Lithium,  but everyone is different and it takes time to find the right combo for most.
 Hang in there sounds like you have the right attitude to beat this,

              Phil 8-)

I saw the Prof on Wednesday, he looked at the drugs I was on, grimaced, muttered about being on the wrong drugs and grossly under-dosing and GPs not following BASH as it was intended.

I was on sodium valporate, garbentin, prograne SR, nebilet and diclofenac. Wednesday I was told to stop using them and let the whole lot clear out for 2 weeks minimum 4 weeks if I can survive the migraines so soon after yet another super autumn cluster special and to then begin a new preventative regime. I was verbally told but it was only three days after the heads had stopped and I did not take much in after the oxygen and auto-injectors speech bit. He is sending a letter confirming the diaognosis and new regime to both myself and by GP [UK NHS system] and another appointment to see the specialist nurse who works for him to tweak the drugs  rather than leave the GP muddling about. At the first sign of the next cluster bout he wants to see me to sort out acute treatment himself. The annoying thing is knowing I can look forward to going back to 3-4 migraines a week with at least one of those being an uber migraine and I am not sure I have the energy to last two weeks let alone four. *moans-mutters-moans* but I have more faith in this doctor being able to find the right mix to get the pain more manageable than my GP esp when he was honest enough to admit he doubted it would ever be truly under control.

For the next two to four weeks I have Rizatripatin Melt, Solpadol [30mg soluable codine and 500mg soluable paracetomol] for when the migraine pain outlasts the rizatriptain and the diclofenac and get to play in the MRI.
I also have an open self referral to the specific headache clinic he heads and I can go to the A&E at the hospital it is based in if pain gets ugly or clusters kick off agian. It is blazed all over the front of my notes and my poor long suffering husband has offered to pour me into A&E.

I am not too sure if I should go *Yippee* because someone is taking this level of pain seriously or smash the crockery as it is not just me who thinks this pain is unbeleivable I have a consultant who gave me the three line whip about the next cluster attack being a medical emergency and to contact the neurology department ASAP and arrange to be seen as an emergency in A&E.
Woke to a grumpy migraine that has been lurking like a toad under a stone, managed to crawl into the course I was delivering today only to be told by everyone I looked ghastly and should I even be in. I thought I looked much better than I have for the previous eight weeks.
Right now all I want for Christmas is a spare head so I can leave this one to hurt all by itself and go off and get on with life.

Hi there Katie,

Sounds like a pretty heavy mix you've got going on there..

Must admit, my experience of A&E is on the whole pretty dismal (my local is Warwick). They either didn't seem to care or couldn't/ wouldn't do anything for me (not even a shot of Imigran), I gave up on A&E visits a long time ago...

Wishing you PF days,

Ade.

Hi Katie and welcome. Sorry you had to find us but there is a wealth of info here and a lot of nice folks that are more than willing to help another sufferer.

 Barry :)

:o WARWICK.....Ade, not surprised you found that a tad dismal.

Going to PM you the details of the service I pushed for; under the new NHS patient choice guidelines you can ask to be seen by the specialist and hospital or choice.  

I would also strongly recommend printing off the ' Letter to Employers & Colleagues' (top of this forum).

It puts into words what I never could (mainly due to the trauma of re-living past episodes as I try to describe what it's like) and I have already printed it off and stuck it on the noticeboard at work.

I have found it immediately stops any rumors circulating that you are forever 'pulling a sickie' just because you've got 'a bit of a headache'