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        Cluster Headache Help and Support >> Cluster Headache Specific >> Getting Really Upset
        
(Message started by: MarkHW on Mar 1^st, 2006, 10:36am)

Title: Getting Really Upset
Post by MarkHW on Mar 1^st, 2006, 10:36am

I am about to blow a gasket and needed to vent.

I have bounced back and forth between chronic and episodic cluster for the past 20 years. Right now with lots & lots of drugs I seem to be episodic. About every 4 months I go 2 to 3 weeks with no cluster and then start again.

I have been using Imitrex injections for 20 years. They work very well. My insurance has decided that I can't have any more for 2 months because it's too soon.

Went to my neuro. Had a cluster. He injected me with migranal and it blew out the headache. He prescribed Migrinal nasal spray for 3 days - 2x/day to break the cycle and then one as needed. Did the 3 days and it did break my cycle. Then Sunday I had an attack. Tried the Migrinal spray - didn't work. Ended up at the ER.

I called Monday - Neuro out of office. So, I took migrinal as a preventative. Called Tuesday - Neuro out of office (even though he was supposed to be back). So, I took more migrinal as a preventative. Called today - get the secretaries vm. I am now out of migrinal and have NO preventative measures. O2 only works once in a while for me.

I am in the middle of the worst cycle I have had in a couple years and the Neuro's office is useless.

I'm calling back in a little bit. If I don't get help I am going to ask if I can come in! If not, I will be finding a new Neuro. The worst part is that I like my Neuro and he has been helpful - I think it's his staff.

Ok... done ranting.
Mark

Title: Re: Getting Really Upset
Post by marlinsfan on Mar 1^st, 2006, 10:58am

How are you using O2? Do you have a non-rebreather mask and a hi-flow regulator?

What I've done in the past is drive to the neuro's office without an appt. The medical assistance should check you out and either give you a refill, or give you some samples.

Title: Re: Getting Really Upset
Post by Karla on Mar 1^st, 2006, 11:43am

Ask to see the neuro on call. There should be one on staff. You may have to repeat your case history to him but at least you can then get a script. Explain the situation to the dr nurse and you urgent need to see the dr now. They should be able to work you in to see him. Good luck!!!

Title: Re: Getting Really Upset
Post by nani on Mar 1^st, 2006, 1:43pm

Migranal should not be used as a prevent. It's meant to be used only as an abortive (for migraines). I know you bought some kudzu, hopefully that will help.
You need a regimen of prevents in your arsenal, as well as effective abortives. If you haven't already...try oxygen.

Title: Re: Getting Really Upset
Post by Dragnlance on Mar 1^st, 2006, 3:07pm

Quote:

I'm calling back in a little bit. If I don't get help I am going to ask if I can come in!

Dont ask! just show up and make noise until the doc sees you. If the waiting room gets to see a full blown CH attack, they will whisk you in to see the doc as it will scare the other patients.

Done it.

Lance

Title: Re: Getting Really Upset
Post by BarbaraD on Mar 1^st, 2006, 4:06pm

I'm with Lance -- don't call - just go in. They don't like to see a hit in the waiting room.... Scares people... You'll see a doc and quick -- trust me on this one...

Hugs BD

Title: Re: Getting Really Upset
Post by kcopelin on Mar 1^st, 2006, 10:13pm

That's three votes for getting hit at the docs office. They will see you. Fast. Also you really need a preventative. Isn't Migranal a triptan? don't think that should be a preventative. What about Verapamil, Lithium, Melatonin?
kathy

Title: Re: Getting Really Upset
Post by nani on Mar 1^st, 2006, 10:18pm

on 03/01/06 at 22:13:59, kcopelin wrote:

Isn't Migranal a triptan?

It's an ergot. DHE

Title: Re: Getting Really Upset
Post by sandie99 on Mar 3^rd, 2006, 10:42am

All I have to add is: I wish you lots of PF time as soon as possible... [smiley=hug.gif]

Best wishes,
Sanna