I have been experiencing CH for about two years now. I used to get minor episode at the beginning. Back in October 2010, i started a CH episode everyday and night! Back in October I didn't even know that CH existed!
in November I had such a bad episode that I could not cope and went to A &E that's when I found out about CH. Today and after 100 days suffering everyday and night of CH, I have been seen by several doctors and still no medication! I just take self prescribed pain killers every 4 hours for the past 3.25 months!

I am desperate and tired. I have read some of the posts in this site and I feel identified. My quality of life is zero, I'm exhausted and my family is also suffering the consequence too.

I feel like I am alone against this battle and no Doctor is willing to help.

Is CH chronic? Will it ever go?

Thx for being there

Michael

  Kind of give us a rundown on how you were diagnosed and what meds you have prescribed yourself.

            Potter

Hi

Diagnosed by Doctor based on my description of symptoms against the NHS website!

Today I have been seen by the 'Top Guy' at the eye dept (hospital) and he confirmed my eyes are OK and therefore thinks I should go back to my GP to obtain treatment for cluster headaches! This has taken over three months! Until then I have been trying to get used to the pain with the help of panadol advance! this mild pain killer has been able to give me 1 hour breaks between episodes!

Therefore, now I have to wait until this Doctor I have seen today writes and sends a letter to my GP and then arrange for an appointment to see him!

If you must, get a referral to a NEUROLOGIST.  If you don't need a referral, let us know approximately where you are and I'm sure someone here can find a neuro for you.  This is a hypothalmic disorder, not an eye disorder, or a sinus problem, or TMJ.

You need OXYGEN to begin with.  There are many more here who will get you off on the right foot.  In the meantime, buy some energy drinks like Red Bull that you can stand and slam one at the first sign of an attack.  It might just stave off an attack long enough for you to do more reading here on preventatives and what help can be found.

Best of luck.

Panadol is nothing more than aspirin, which dpoesn't even come close to relieving this kind of pain and will tear up your stomache in the process.

Educate yourself by reading all you can around this site.  You will rapidly come to the conclusion that you will need a good preventative, like Verapamil  or Lithium as well as an abortive like pure oxygen.

Happy reading. Start with the links to the left of here.

Panadol is the GSK trade name for the pharmaceutical paracetamol (also called acetaminophen). It is something different from Aspirin, although they are both over the counter analgesics that are practically useless against CH. Paracetamol is a bit kinder to the stomach than Aspirin.

See:
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