Hi,
I hope someone out there can offer some advice.

I have suffered from chronic CH now for 11 years. Undiagnosed until i found this site,2003, have been lucky- imigran andO2 from the start. Used psilycobin until i got to see a neuro in 2005, then various courses of lithium( horrible), until prednisilone( massive doses gradually reduced) in conjunction with verapamil finall got on top of things.

I now take 700 mg verapamil daily, i generally get one full blown headache a day, hour after going to sleep and shadows at regular times. I have a regular bad run every march and october ( when the clocks change), and am in that cycle now


Im hurting

Im now under care of Dr Matharu, he's been wonderful and am now taking melatonin.
It has sent my head wild.
Am now getting kip 7 + every 2-3 hrs day and night

6 days in .6 mg nightly.

Should it be like this?????

I know what you're going through; I am, too. As to the melatonin, just because it has worked for some, even many, doesn't mean it will work for you. If you're not sure, stop taking it. See what happens. And do get to see your dr soon. If you have spent any time on this site, then you probably have some idea of what you haven't tried yet that may be of help. Make a list of that and bring it with you to the drs. Good luck and God bless. lance

Thanks for the kind words.
Have just spent another long day on o2 trying to speak to a clinician.has promised to call me tomorrow.

Ive coped for a long time, trying to see dr matharu as i knew he was the person to see. Had accepted that havingCH was going to mean taking verapamil and having imigran as the means to give me more of a life than i'd have had before.

Guess am just down that the first new treatment ive tried for years seems to have made things worse!!!

When i saw dr matharu at clinic in february i was offered a GON injection, ive told his secretary that i would like it ASAP.

Sorry to go on, its worse than its been for years and me and my family are taking it quite badly

Dr. Matharu is one of the top CH Doctors in the world, he will help you. He was at the OUCH USA convention last year.

I got to talk to him personally and he is a wonderful and compassionate man and Doctor. I'm sure he will help you find something to help.

Are you getting on the O2 when you first feel the pain? This is important. The longer we wait the less likely it will work. Also hyperventilating the O2 will speed the abort.

Don

daveengland wrote on Apr 12^th, 2011 at 4:21am:

am now taking melatonin. 6 days in .6 mg nightly.

Melatonin generally comes in 3mg tablets, however, by accident I once bought .3mg tablets.  Being that you seem to be taking these kind, .6mg nightly, they would have little effect if any. 

With this little amount it would be hard to know if it is contributing to this bad part of your cycle, or if taking 9-12mg or so might help.

Hi,
.6 mg was a typing error,it should have read 6 mg, my mistake.
I had a quiet night, but the moment my eyes opened thus morning.......BANG kip 7+ and another injection.

Partner woke me at 9 a.m to say that the clinician from dr matharu was on the phone.
I am stopping the melatonin now, but have just returned from London where i have had a GON injection this afternoon at 3

So far so good. No tension from left side top of head to bottom of shoulder blade. No shadows,no hint of pressure on side of head. A very very unusual feeling, certainly cant remember the last time i felt this relaxed!!!!!

I feel your pain.  I am in a high cycle myself and am exhausted both physically and mentally. I have taken doses of melatonin in various levels from 3 to 20 and it has never helped me and I have suspected it may have harmed me in that it does make me sleep but I think for me the problem is I do get in a heavy sleep and when I get hit I stay asleep too long and the HA has kipped up to a 6-8 before I am awakened which makes it more difficult to abort with O2.  Normally a 3-4 hit will awaken me immediately so I can jump on the O2 and abort rather quickly.  This could be what is happening to you the melatonin has you more sound asleep and the HA has kipped up to the 6-7 before you wake up.  I don't think the melatonin is causing the HAs as you said you were getting them day and night so it should not be affecting your daytime hits.

Good luck and hopefully the new treatment will work to get you some relief.

Wishbone

Wow!!!!!!!!!!
GON injection 3pm yesterday, have had 29 hrs of nothing!!!
Longest ivr been PF for ages.
No shadows, good night sleep and no CH.

Clinic called this morning to check i was ok. They want me to take no preventative other than verapamil for next two weeks, if/ when the beast returns proposing i try GABAPENTIN ( lyrica?)

From what ive read on here its not particularly effective ?

Wish i could have steroids every day, but every hour since that injection is bliss!

1-0 to the headache group in this battle with the beast!!!!

Happy thoughts to all!