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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New and currently with a sleeping beast
        
(Message started by: Kudzu on Apr 13^th, 2006, 12:35pm)

Title: New and currently with a sleeping beast
Post by Kudzu on Apr 13^th, 2006, 12:35pm

I just wanted to thank everyone who's posted on this site. I found it just the other day while searching for migraine information. I have an appt with a neurologist so he can tell me what I already know. One site led to another and another and finally a site described my "migraines" as a cluster and voila.

The stories posted on the home page and the posts here are what solidified, at least in my mind, that what I have are cluster headaches. I thought I was alone in this. I thought I was unique in that my "migraines" did not have an aura and were only 1 sided and that I could tell you what time it was based on when I would awaken the beast.

I had gone to the doctor and he gave me a shot of Toradol and prescribed 800mg Motrin. The shot didnn't do much because I wasn't going thru an attack. I took the motrin like candy and it did very little.

I found this site and realized the reason I was now hitting K8's & 9's was because of rebound. I quit the motrin, increased the water, water, water.....the beast hit me right on schedule at 3pm but only lasted 30 minutes. Then I got hit again but in between I drank about 3 liters of more water...another 60 minutes of pacing but not 2-3 ours. Little sleep because of shadows.

Read on Kudzu. Went and bought that with some magnesium, feverfew & melatonin. Took the kudzu before bed. Awoke after 2 hours with a K6-7...took 2 Kudzu waited a bit and went to sleep. I was actually able to sleep. I was terrified everytime I woke up because I was expecting the beast to be there.

Was at K2....borderline 3's this morning. Took a kudzu within an hour or so dropped to 1. Same K2-3's an hour ago, took a kudzu dropped to 0-1.

It's bitter-sweet. I'm hoping I found it because this beast is bs. I already lost my previous job 3 years ago because "noone misses that much work because of a few headaches". My sick leave dropped to 20 hours because of having to stay home and recover from K7-10's two - four times a day.

Just wanted to come out of lurking and say "Hi & Thanks!" I'm excited and terrified at the same time. The biggest thing is I'm not alone and imagining the extra strength tylenol wasn't working. ::)

Title: Re: New and currently with a sleeping beast
Post by nani on Apr 13^th, 2006, 1:53pm

Hi kudzu. Welcome. While you're waiting to see the neuro, start keeping a headache diary. Go back a bit, just in case the kudzu helps so much you have nothing to report. As you already know, Toradol and OTC meds won't help. Look over on the left at the oxygen info link. Print it out and take it to your appointment. It's an effective abortive for many of us, as long as we have the proper setup. Read, read and read some more. The OUCH site (link on left) is also full of great info. You've found the best place there is for CH info.
pain free wishes, nani

Title: Re: New and currently with a sleeping beast
Post by Garys_Girl on Apr 13^th, 2006, 3:47pm

Kudzu, hubby was just the same. Misdiagnosed - until we found this site. Described his symptoms to a tee.

Don't know if you already saw my post about this (I think it's in the Cluster headache specific forum), but this pain tracker scale developed over at www.clusterbusters.com is REALLY helpful in keeping track of what is working and what isn't working. Here's the link:

http://www.clusterbusters.com/tracker.htm

And, as Nani pointed out, if you can, keep track of everything you put in your body and when you do it. It may help you find triggers you didn't know were there.

And DEFINITELY read up on the 02! If done correctly it's a very effective abortive most of the time for many, many clusterheads (we'd stumbled upon 02 as an abortive, but didn't have the right equipment and didn't know it. You HAVE to have a NON-rebreather mask, and the O2 has to be delivered at a very high rate: anywhere from 10 litres per minute to 15 lpm, and that requires a different flow regulator than they will normally give you).

And next time you go see your Neuro, go armed with information!

Imitrex seems to be an effective abortive for many clusterheads.

And a prednisone taper and verapimil seem to be an effective preventative for many.

You may want to consider adding Taurine to the regimen: http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Taurine

There was a thread in here somewhere where when one person was having shadows, the Taurine knocked them out. Hubby's been on Kudzu a full week as of this afternoon. Got set-back the past two days because of sinus meds, but while the Kudzu seemed to lower the frequency, intensity and length of attacks, it's left him with shadows ranging from K1 - K3s all day. We started him on Taurine today - hoping that'll help too.

Anyway, good luck. I'm sure you'll find this place to be as helpful as I am!!!

Wishing you pain free days and nights,

Laurie

Title: Re: New and currently with a sleeping beast
Post by Icey on Apr 13^th, 2006, 3:59pm

:-/ Oh my .. did I just read it right , that you shouldn't drink red bull if you take verapamil ? Oh dear , I've been mixing the two

Title: Re: New and currently with a sleeping beast
Post by Garys_Girl on Apr 13^th, 2006, 4:06pm

Icey, my understanding is there are no studies per se. But yes, according to the med-owl site page on Taurine:

"CAUTIONS

Taurine should not be taken if you are currently on a prescription for Verapamil or any other calcium channel blocker. Until more is learned, it is wise to assume that Taurine may increase the action of Verapamil, which could slow the heart excessively, causing irregular heart beats and possibly a heart attack. It is also not clear if Taurine would interact with other medicines like Sodium Valproate or Lithium."

On the other hand, maybe what it means is that you'll need less verapamil?

The problem is they just don't know. So either monitor yourself closely, or take the info on Taurine with you to the Doc to discuss. Or consider drinking Mountain Dew or Coffee instead of Red Bull. They've got the caffeine but don't have the Taurine.

Title: Re: New and currently with a sleeping beast
Post by LeLimey on Apr 13^th, 2006, 4:16pm

I don't know anything about mixing taurine with verap and I'm unsure how much you would need for it to be a problem.. but I'm sure Flo will know!
Debbie, did you know you can't have grapefruit juice with verapamil as it heightens the effect of it? If like me, you love the stuff thats going to be a hardship! No grapefruit whole either.. you'll just have to have chocolate instead! ;)

Title: Re: New and currently with a sleeping beast
Post by Kudzu on Apr 13^th, 2006, 4:31pm

Thanks for the info. [smiley=laugh.gif]
I'll look into the taurine. The shadows are pretty mild. Right now it feels as though the beast was surreal. Just Tuesday I had a whopper, well a whopper while driving totalling 30 points. I turned up the heat in the car and that distracted from some of the pain. Luckily there was no traffic. I was terrified that I would hit a K8 or K9 and end up then hitting a truck or something.

With the pain tracker I'll use it to see what's what. I've kept a log in the past and proved nothing. I used a point system as well. With the pain tracker I figure I will at least know when the cycle is over.

Back to reading & searching.........