Hello

I spent a lot of time on this site at the beginning of this year and towards the end of last as my husband was sort of diagnosed with CH's.. Everyone was so friendly and so much help, when noone else understood what was going on.. So I wanted to say thank you!

My husband has now sort of been diagnosed with Chronic Paroxsymal Hermicrania, similar to CH but a lot shorter (thank god) .. so far they only really last up to 20 mins at most with this odd one going over.

He was getting them every day, and was on verap and indomethacin with a imitrex injection just incase...  After Christmas he weened him self off them as he was feeling better and the verap was giving too many side effects.. strangely although he takes no meds now but he still has his moments, but is generally OK!

So not sure exactly what's wrong with him as from discussions here I expected them to stay or go (either in remission or cycle??), not just linger half and half..

I think his trigger is stress (and dentists anaesthetic!!), so he has been learning to relax a little.. which really helps! but without fail, when the anaesthetic from a dentist wears off his pain comes..! Weird! Also he finally believes me that alcohol triggers it... as he had an awful experience when he went out on a bender with his brother! He also eats grapes every day.. which really do seem to help!

I suppose the reason I'm writing this is I want to know if anyone can tell me if they have had similar things happen with their loved ones, where the head thing kind of lingers.. but is not really there, but then not gone...! Should I be expecting worse? It's been like this for a good few months now.. where as it was awful before!

Thanks again!

Bex

My husband has a few twinges and slight pressure in response to triggers as his cycle is winding down. He tried a beer after 1 week painfree and got a couple twinges, waited another week and didn't get any twinges- just our experience!

B wrote on Oct 22^nd, 2010 at 7:49am:

I suppose the reason I'm writing this is I want to know if anyone can tell me if they have had similar things happen with their loved ones, where the head thing kind of lingers.. but is not really there, but then not gone...! Should I be expecting worse? It's been like this for a good few months now.. where as it was awful before! Thanks again! Bex

Dear Bex...

The lingering you're speaking about sounds like 'Shadows'... or as I say.. "I'm going to get you syndrome."  Where the headache isn't really there but feel like it's coming any minute - a teaser.

As to rather or not you should be expecting worse, I can't answer that... some of us shadow for days and even weeks without having a attack..

I get really concerned when I read statements like:
{my husband was sort of diagnosed with CH's}
{and My husband has now sort of been diag-  }
{nosed with Chronic Paroxysmal Hermicrania  }

If I had a doctor that tell me I "might have, could have, possibly have" something as serious as the things you mention above... I would be heading to a new doctor quick and fast.  If a doctor is 'kind of' and 'sort of' diagnosing a patient with something, how can he prescribe medication, and what is he prescribing it for????

I think your husband need to find a new doctor..

Peace & Blessings
& Pain Free Days for your hubby

Lady Luv

Hi!
Thanks for the replies..

All this kind of sort of diagnosis happened the end of last year as hubby never really fit any specific symptoms. He has had MRI's and other scans and nothing was seen.. verap and indomethacin worked sort of but the verap gave him low BP and made him dizzy and indo (which seemed to be the one working best) gave him an awful stomach.. even with the second pill prescribed to  protect his stomach..

He's happily on no meds at the moment.. his neuro who did the sort of diagnosing said it appeared he'd gone into remission.. around May this yr and we've moved house since then and not seen a local doc yet other than to register.

He is still getting the occasional hit (this is what I mean by lingering.. not shadows) The hits when he gets them are as bad as they ever were.. just he doesn't get many of them any more.. maybe once or twice every few weeks! (other then when dentists or alcohol are involved!) it just seems weird.. but good!

I know he's not an Atypical CH suffer... nor a PH one.. maybe this is just his version!? :D