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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> This is a great website !
        
(Message started by: Clustersince9 on Oct 13^th, 2006, 10:21pm)

Title: This is a great website !
Post by Clustersince9 on Oct 13^th, 2006, 10:21pm

I have suffered from these headaches since I was a kid . No Doctor knew what it was. I would go to ER and get everything, Inderal, Midrin, Caffergot, Demeral. Nothing worked !

Then at age 22 I saw a neurologist who was specializing in headaches, He told me I had cluster headaches and prescibed prednisone on a taper dose.

Finally the pain stopped ! No waiting weeks! Alas he was part of a HMO and left the Hospital, Back to Doctors who did not know what was wrong with me and begging for prednisone.

Fast forward 10 years and I find a new Neuro. ( Current Hero) Who know's all about clusters. He has treated me every since. When in a cycle I have used prednisone tapers, Lithuim, and oxygen. They have all worked Also use Imitrex shot. Down side prednisone gives me diabetes and have to take insulin. After doing this for so many years I was Diagnosed as diabetic. Which is well managed now.

I am currently in a very weird cycle. It started three weeks ago. I had was in the process of starting a new business and was finally taking a much needed vacation to Hawaii.

The headache started off as a nocturnal beggining cluster (not quite full blown or intense just threatning) Two hours into Sleep ,headache that was aborted by excedrin . Went to Neuro. He gave me Imitrex script. And Verapmil 180 mg 2 x a day. Kept it at bay while on vacation. On the the plan back I got it with one of the worst headaches ever ( mistakenly packed Imitrex in suitcase!)
Saw neuro he increased the Verapmil to 540 mg . And gave O2 script.

After reading on this sight I tried redbull it has aborted headache twice. But I am drinking 4 a day. I am ready for this to end and thinking of biting it and going on the prednisone.

Sorry for the long post.

Title: Re: This is a great website !
Post by Kevin_M on Oct 13^th, 2006, 11:00pm

on 10/13/06 at 22:21:11, Clustersince9 wrote:

Went to Neuro. He gave me Imitrex script.

Saw neuro he increased the Verapmil to 540 mg . And gave O2 script.

After reading on this sight I tried redbull it has aborted headache twice. But I am drinking 4 a day. I am ready for this to end and thinking of biting it and going on the prednisone.

Are what the doctor 'scribed not working this time? At 540 verap, are you getting any prevention? You've mentioned lithium, O2 and trex working in the past, the Red Bull helping also now. Some have used a lithium/verap combo as prevention.

Depending on prednisone over the years too much is not a good idea nor is it for prolonged use. Know the long term affects of prednisone.

Title: Re: This is a great website !
Post by AussieBrian on Oct 14^th, 2006, 4:06am

Many of us know well that you can work your butt off pain-free, but then just consider a vacation and WHAMMO!

Among other things, these have been called holiday headaches.

Title: Re: This is a great website !
Post by bothofus on Oct 14^th, 2006, 8:05am

Clustersince9, welcome to the boards.

Didn't know they had also been called holiday headaches, but I agree. Over 20 yrs ago I worked in the oilfields in Texas, all types of weather, dirty nasty work, very demanding physical work. But no CH, until after work, showered and relaxed, then BAM !!!!!!!!!!!!!!!!
Carl

Title: Re: This is a great website !
Post by Clustersince9 on Oct 14^th, 2006, 1:02pm

The Verapamil at 540 is not working, I am waiting on the insurance to give me my O2 machine. Red Bull did not work last night , I had to use the Imitrex.

I asked my neuro avout the Lithuim, He said prednisone and lithuim would be last resort ( especially the prednisone do no diabetes) I will see him on Monday and ask about the Lithuim/ Verapamil Combo. Also I was already taking 180 mg verapamil daily for my blood pressure, Could that be why it is not working that great?

I am ready for this cycle to go away now. I have got things to do! Thanks for listening !

Title: Re: This is a great website !
Post by Kevin_M on Oct 14^th, 2006, 6:53pm

on 10/14/06 at 13:02:16, Clustersince9 wrote:

The I am waiting on the insurance to give me my O2 machine.

Check the tabs over on the left about "oxygen info" because the set up should be, of course an oxygen tank, then a high flow regulator (12-15 Lpm) and with a non-rebreather mask. I am not sure of an O2 machine for clusters.