Hi All!

I was here last year when my Husband was diagnosed with CH (or paroximal hermicrania) ..  everything settled down and we though all was going to be fine.
He was taken off all meds had the odd attack say one every 2/3 weeks but other than that was ok.

Then in January it all came back!

Since the last diagnosis we've moved house .. By new doc he has been taken off verap because of nasty side effects and told he can't use imitrex and been put on Topomax and is still taking indomethacin!

He hasn't been able to work since Jan cos he's no ATypical CH/PH sufferer.. he has short frequent attacks.. but feels dizzy/disorientated when not having attacks (that been since before topomax)... so can't drive!

He's had 2 MRI's and a CT and waiting for the result of the second MRi.. and now we've been told he can't get an appt with the Neuro til Aug!

Even though his pain lasts only 10/15 mins at a time (although has a few bouts in succession) they are usually 8-10s and I can't help him - there's nothing I can do!!! He shouts be be killed as he can't handle the pain!

What am I meant to do? HELP! :'(
We can't go on like this..!

Oh B that just sounds awful. So they abort quickly, that's good, but how frequently? Verapamil isn't for everyone. My husband takes lithium in cycle and it's been pretty effective for him. No neuro until August? Is there another neuro/headaches specialist you can call? Will his last doctor agree to try a different med (even though you've moved away)? 

Something's gotta give!

Don't just accept what the doctor is telling you, question them, ask others, change GP. Make sure you do what needs to be done to get your husband the treatment he needs.

Has your husband tried using oxygen to abort his CHs? That will at least replace the imitrex (he might even prefer it).

I'm also confused by the diagnosis of CH OR paroximal hermicrania. These are two different conditions. Were they diagnosed by a neurologist specialized in headaches or by a GP or a "standard" neurologist? Getting the diagnosis correct could be the key here to the correct treatment.

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"CPH is almost always relieved by indomethacin (Indocin). If indomethacin does not help, the diagnosis of CPH is in doubt (although it still could be CPH)...."

"The triptans do not appear to be particularly effective for CPH."

"Cognitive side effects, such as fatigue, lightheadedness, and mood swings, may be a problem with indomethacin. "

I'm not a dr. nut I think that You may want another opinion.
If he's nonresponsive to the indomethacin it's likely that he either has not reached a therapeutic level (btw what is his dosage?) or he has another headache type.

Good luck
E

Thanks for all your replies!
Sorry for lack of replies! Internet been down! :(

The headaches seem to be subsiding after the uppage of topomax doses! Thank God!! but he's still dizzy and wobbly all the time! He's got a doctors appointment tomorrow.. hopefully something will come of that!

His "vague" diagnosis came because he's not getting standard symptoms for either illness! Luckily his second MRI is clear though!

Sorry when I posted it had been a particularly bad day and I was losing it and didn't know where to turn!

Hundreds of headache types will present with negative MRI's it doesn't mean that we don't have them.

I understand the vaguery but what I'm suggesting is based on the research not my opinion. That is why I suggested further investigation

good luck

Hi B!
Very glad you managed to turn your mouse in this direction!
How are you two doing?
As my good friends have already said, you two need to get as much input as you can from varying sources...don't accept one or two opinions, keep trying until you can get the right mix of treatments!
CH unfortunately, cannot be labelled easily, it so difficult to get the right balance!
Patience, Education (here) and determination can and will
bring back quality of life again to you both!

Keep us posted B

Best Wishes

Gary

has your husband been seen by a neuro!!!

think that is your next step, just make sure the neuro specialises in headache conditions though!!

all the best

Sandra x