Hello, 
We are also new my husband has been suffering since Sept 17 with ch.  The last episode being two years ago but not diagnosed.  We are exhausted and we freely admit we need other people who understand.  It has taken  a horrible toll on our marriage and on our finances.  As, he has been unable to work since Sept 17 and I have had to major surgeries in July and August.  We are at out wits end.  He is now on Depakote 2000 mg daily,folic acid and B12 injections daily.  How do you all work?  How do you keep it together.  I want to help but I have exhausted every avenue I know.  Thank God we found you all!  Thanks.  We would appreciate any advice that you can give.  When will people ever learn that people need people.

The way I work is as such: I always have O2 with me to abort. I start on one of the combination of two preventatives that make up the cocktail that eliminates 90-95% of my hits - lithium. If and when they start breaking through that, I start on the other - verapamil. I don't like taking this one as it makes me tired and drains me of energy, and the sexual side-effects suck. But it's a trade off.

The only time I've missed work due to CH in 20 years is two times I was hospitalized for three days each time - IV DHE-45 treatments.

Trucker, I understand your feelings of hopelessness, but hopefully as you and your hubby read through the information on this site you will see that people Do and CAN live with CH. It's all about getting the mix of treatment - both preventative and abortive - that work for him. Lithium and Verapmil are common preventatives, taken at appropriate dosages.  Then the Oxygen therapy, and imitrex if necessary to get through any hits that break through. These are the things you should discuss with his Neuro.

Good luck.

catlover wrote on Nov 23^rd, 2009 at 8:30pm:


ummm, migrains and clusters are seperate. just for your info.

if you're diagnosed with clusters, I would get the 02 and meds ASAP. don't wait till they come back; get prepared for WHEN they come back. 02 is safe to use, so theres no harm in arming yourself with it.

Episodes can get worse, get better, dissappear, go into remissions for years.
some episodic sufferers turn chronic, and go with little or no releif from the headaches. some chronic sufferers go episodic.
you'll have to wait and see for yourself. best of luck!

Hi exmed1!

Thank you for your reply!
It is reassuring!

We're now not sure if he's actually got clusters or not..

A few weeks ago I could not wake him in the morning, he had an attack the night before and the morning after its usually quite difficult to wake him but this was much worse.. he'd part open his eyes and let out a groan and that was it. He remembers none of it, but seemed none the worse for it when he eventually came back to life!
I couldn't get a GP appointment for him (bloody NHS), so out of desperation called the hospital to try get hold of his neuro.. but only got an answer machine.. so left a message.. eventually the neuro called!

Since then things are moving along and currently my husband is bouncing between the GP and neuro each week.. the neuro is not sure exactly what he's got as the pain usually only lasts 5/10 mins (the most its ever been is 25mins) and he was going practically unconscious after an attack, and sometimes just before as well.. only for 30 secs a min.. which noone on here reported..
One attack takes him out for the whole day, so he's signed off work at th mo.

The poor thing is on 460mg of verapimil now, which has lowered his BP and now he's falling over alot.. and on 6 tablets a day of an anti inflammatory..

Neuro thinks he may have Trigeminal Neuralgia (apparently anti inflammatory may help that), but his symptoms don't really match that either..!
None of the tablets appear to be doing anything.. except making him tired and have an acidy stomach, and he seems to be having more hits rather than less, but I don't think they are as painful, and he's not quite so out of it after..

But MRI shows nothing.. so we're at a loss..! 

(if any of this rings any bells to anyone please let me know!)

Sorry to ramble there.. but I haven't posted for a while..!

Again thanks for all the replies I am getting!

Bex

Has anyone considered BAM or basilar arterial migraine? I have been thinking of this since I posted a minute or so ago and just wanted to mention it. I know it's "considered" to be largely women who get it but, what do you know?! CH is primarily middle aged men and me (female) and my primary school age son can testifiy against that!

Basilar Arterial Migraine involves a disturbance of the basilar artery in the brainstem. Symptoms can include severe headache, vertigo, double vision, slurred speech, and poor muscle coordination amongst other things and one thing that is important to know about them is triptans are dangerous in this headache type.

I am NOT a doctor - I don't want you to think my opinion holds any "weight" for a minute, it was just something that seemed to ring a bell with some of the things in your post.

Well if cluster meds and meds for Trigeminal Neuralgia aren't working - it may not be either! Indo will also rule out Paroxysmal Hemicrania and Sunct which are TAC group with CH, (Trigeminal Autonomic Cephalalgia's )

Migraine is a severe and debilitating condition. Some varieties and attacks may not be as severe as others but some are damn awful. BAM is a very intense pain from what I know of it.

The fact he has difficulty in recovering fro an attack would make me think it's possibly not a headache condition at all merely a condition with headache as a secondary factor. I'm very glad he's had an mri, that rules out a lot of more ugly stuff at least. A CAT scan might be a useful diagnostic tool too as they show different things to MRIS.

If he get's offered one, definitely take it! Has he had any blood work done?

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