Hi from another previous member who may be back again.

I've been PF for nearly 4 years and have probably been avoiding this place out of paranoia about inviting the beast back into my life.

My first episode started in Nov of 2004 and lasted until about March of 2005. Took about 2 months to get a definitive dx and another 2 months to finally get O2 - which i only ended up using a couple of times as the episode was nearly over by then and i was mostly getting shadows.  I was on Verapamil and Lithium as preventative for most of that time.

Last Monday around 3am - i woke up screaming with the old familiar pain - although it was on the right side - and my previous HAs were usually on the left. Did the dance for about 40 minutes, pouring sweat then threw up about 15 minutes after the pain stopped - another thing that didn't happen last time.  I had to get ready for work at that point, so cleaned up, showered and got dressed. I was a little out of it at work,  but managed.

I dug out my old meds - to see what i still had and i do have a fair amount of both the lithium and the verapamil left, but it expired in 2006.

I took melatonin, feverfew and advil at bedtime along with an antacid. Slept through the night.

Last time around, i started out by getting hits exactly every 3 nights - always between 2 and 3 am.  After a couple of weeks, I was getting them during waking hours as well, usually triggered by bright or flashing lights, or moving from extreme cold into relative warmth.

So far, it's only been one hit, and i am continuing the bedtime cocktail.

I am not sure whether to contact Drs yet. My previous GP retired, and my previous Nuero does not take my current insurance. So if i do need a doc, i will be starting over from scratch.

I guess i'm waiting for hit #2 to convince myself. I'm hoping it was an isolated hit, but fearful that it is not.

Waving hello to anyone who remembers me - and everyone who doesn't too!

Anne

Hi there.  Sorry you're back here too.

Here's my experience.  My primary is probably the 6th one since I was diagnosed in '85.  I've had him for at least 10 years.  The previous primary wasn't comfortable with the neuro Rx, so I had to see my neuro again to refill all my meds.  The current one has no problem filling the CH Rx, so every year he renewed my CH meds at the annual, whether I filled them or not.  He and my neuro are in the same medical group, so all my record is handy.

My suggestion is to ask your new GP if he/she could just take over the CH Rx, if the previous combo worked well for you.  Get all your previous neuro record transferred to the new GP or a new neuro.  Neurologists who are familiar with CH is usually pretty good about squeezing us in, as they know we need both preventives and abortives ASAP.  Receptionists usually have no clue, so just emphasize on CH and insist on giving the message to a neurologist to make an appointment ASAP.  Your best bet just may be finding a new neuro.  It takes at least a month for me to see my GP, but my neuro who normally has 6-10 week waiting lets me in within two days.

I once even went to Urgent Care in panic to get my Rx refilled until I could see my GP or neuro.  The Dr. was reluctant, but he Rx'ed Verapamil and Imitrex just enough to last until I see my neuro.

With the possibility of job/insurance changes and etc., you don't want to take a chance of your Rx expiring.  Pharmacies won't refill if your previous Rx is over a year old.  I stocked up my meds while I was in remission, and I started this episode with expired Verapamil and Imitrex too.

Good luck to you.  It's really depressing to deal with this after a long period of remission.  At least in my experience, the frequency and intensity of HAs only progress---my previous episodes were a month in, a month peak, then a month to get out.  And the pattern of the HAs and my body's response to the meds DO change, so don't under-estimate......  Hang in there.

Thanks everyone.

Mrs T - that's an excellent idea to talk to the GP about taking over the Rxs. I am changing GPs too, but the woman who is talking over for the guy who retired may be amenable. The cluster DX and previous rxs ar in my file there.

I guess the lithium/verapamil worked, although once i got started on them the frequency increased, but the intensity was much less. I only got them from sleep before starting the meds, after a few weeks on meds, they came during the day as well, just not nearly as bad.

I never got a chance to really see if the O2 worked or not. I would always wake up with a full blown K-8 or higher and nothing helped much. The O2 seems to work better for me if i can start it before the HA is full blast.