Hi there,

I'm Rachel from Bolton in the UK, I've suffered from cluster headaches for around 7 years, originally diagnosed as trigeminal  neuralgia, I've had a hard time getting any kind of help from the GPs at my surgery and was laughed at by the neurologist I waited for months to see. (She said it was all down to having a 'clicky jaw') 
My CH is pretty much chronic now, with the odd few pain free days and I have had to give up my teaching job as I found I was babbling nonsense to mask the crucifying pain. (awkward in front of a class of 17 year olds)
I take 40mgs of Amytripteline a night and inject Sumatriptan when it gets really bad, but I avoid this as it's expensive and doesn't really seem to do anything anymore.
I've joined today because I have developed Bell's palsy a couple of days ago, I was initially quite upbeat because my CHs disappeared!  (I think this was down to the Prednisolone I was prescribed) However, they came back with a vengeance last night and I'm hitting a new low.

It's just a help to know there's somewhere I can go for support, I think I'm going to do some digging to help me find some more options,

Thanks for being here, Rachel

G'day Rachel,  welcome,  and it's awful you're getting such a rough trot from the people who say they are dedicated to helping others. 

Laughed at by a neuro who then diagnosed a clicky jaw?  Surely that's unconscionable conduct!

Regarding the prednisolone,  it's a fast-acting but short-lived preventive which is usually offered alongside one of the long-term preventives which take a while to actually start working.  Were you offered another treatment to complement the Pred or was it given as purely a one-off? 

The sumatripan injectables can be terrific,  and happily we can suggest ways to get far better value from them,  but there are many other avenues to be explored as well.

Inhaling pure oxygen at the first sign of a hit is considered by many to be the first line of defence.  To the left of your screen is a button for  Oxygen Info  and while it might look a bit scary at first glance it's well worth a read.

Starting a headache diary listing all the details of each hit  -  time, duration, what you were doing, what you'd been eating  -  can be a great help to competent doctors and might even give a hint as to individual triggers. 

Our good friend MDR mentioned the vitamin D3 regimen which was devised right here and is offering sensational results for so many who must live this nightmare.  It's all just natural stuff and it's not even expensive.

Hitting a new low is easy when you must fight this beast,  Rachel,  but happily there is a way to fight back and win.

Please let us know how you're getting on because we care.

All headaches are horrible,

Brian down under.

 

Hi
go here and read up on the vitamin D regiment.

( Medications,  Treatments,  Therapies )

Thanks Mark Roberts
p.s stay away from alcohol.