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        New Message Board Archives >> 2006 General Board Posts >> Unusual changes
        
(Message started by: Dragnlance on Apr 3^rd, 2006, 8:08pm)

Title: Unusual changes
Post by Dragnlance on Apr 3^rd, 2006, 8:08pm

Hey all,
I am hurting as I write this, so if it doesnt make sense, I apolgize.
I am having changes in my hits. Not sure if it is because of the kudzu, or what. Normally I get hit at 1,5, 8 am , 2, 5, and 7, and 10 pm.
The last couple weeks I am getting hits that vary from 12:30 to 2:45 am, skip to 9am (although that can vary by 45 min, now) big hit now at 3pm, and at 7 pm. The odd part is today, I got hit at 2am, then not again until 2pm, it went away at 3:30, only to show up again at 4:40, and is still here. WTF?
Anyone see changes like this. I am confused, because some things just dont change, the monster being the main one. Now it has???

Any ideas? [smiley=huh.gif] Because I just don't get it..

Lance

Title: Re: Unusual changes
Post by Jonny on Apr 3^rd, 2006, 8:26pm

on 04/03/06 at 20:08:03, Dragnlance wrote:

Anyone see changes like this. I am confused, because some things just dont change, the monster being the main one. Now it has???

Would going from chronic for 30 years to PF for over a year constitute a change?

The beast plays by his own rules no matter how long you have been in a set pattern.

Wishing you the best, Bro!!!!

Title: Re: Unusual changes
Post by Lizzie2 on Apr 3^rd, 2006, 8:40pm

Before I was officially diagnosed with clusters and my verapamil was increased to a much higher dose, I used to get them at 5pm, 7pm, 9pm, 11pm, 2am, and 4am without fail. Then I was admitted to the hospital for headache and my verap dose was tripled. After that, I never had a predictable pattern again...except for the 4am hit. And sometimes I'd wake up at 4am with shadows, eye tearing, nose stuffy, etc - but no bad hit....it's just a given for me.

In some ways, it was better when it was predictable...cuz then I started having them at all kinds of odd hours - and before I could plan to be at home all night long. But adjusting med doses was helpful in that it lessened the amount of hits I got in a day overall...even if they weren't at normal times. And now I've learned that if I'm going to work or what have you, I need to take Amerge or Frova before going because on the days I forget, the hit will invariably come when I'm in the middle of retaping an ET tube to a baby or doing some other thing that I canNOT stop doing or waiver concentration from.

If the Kudzu lessens the number you get overall, then maybe try focusing on that instead of how unpredictable the times now are. I know it's hard - been there, done that. You'll adjust, though! You have to everything else so far!! And we're here for you. :)

Stay strong,
Carrie :)

Title: Re: Unusual changes
Post by alienspacebabe on Apr 3^rd, 2006, 8:54pm

I had a pretty set cycle, not in times of hits per day, but in length of cycle. After using psilocybin for one stretch of time (several/many doses), my cycle is completely unpredictible. This is a good thing for me because my cycles were quite long with short breaks inbetween them.

If it's lowered the number of hits, or the severity of some hits, it's a success so keep it up!

Title: Re: Unusual changes
Post by TxBasslady on Apr 3^rd, 2006, 8:57pm

Lance,

Anytime I make a change either with meds or my sleeping habits, the same thing happens to me.

When I first started on the Kudzu, I got hit every night, and not many short of a Kip 10. After a couple weeks, everything settled down and I would go a week or so with no hits. I got 02 in December, so I tapered off the Kudzu. The first few times on the 02, I would get a second hit a couple hours later. This too settled down, and things went back to normal (whatever that is [smiley=huh.gif]).

I hope the Kudzu works as well for you as it did for me. The CH would break thru the Kudzu sometimes...I took Excedrin Migraine when it did....and I also took the EM for any shadows I had.

Good luck....and stay with the Zu....it make take longer for you to get adjusted. All the better if you have less hits...

Jean

Title: Re: Unusual changes
Post by Neekwa on Apr 3^rd, 2006, 10:16pm

I can't attest to what the medication may be doing. But I know in my case I can't even pin down when to expect an attack until a few minutes prior. Unless of course I plan on drinking a few beers.

Title: Re: Unusual changes
Post by vig on Apr 3^rd, 2006, 10:37pm

there seem to be SOOOOO many variables in this.
Food, Weather, Seasons, REM, Stress, Scents, etc.
and SOOOOO hard to control the variables.

keep going, keep learning
You CAN get to a better place.

Title: Re: Unusual changes
Post by Opus on Apr 3^rd, 2006, 10:54pm

Lance,

When I was episodic having random hard hits always signaled the end of a cycle.

Opus/Paul

Title: Re: Unusual changes
Post by Jasmyn on Apr 4^th, 2006, 12:52am

The beast... confusing, yes... unpredictable, yes... you stay strong Lance [smiley=hug.gif]

Title: Re: Unusual changes
Post by BMoneeTheMoneeMan on Apr 4^th, 2006, 5:38am

Hey, man, like Jonny said, the beast plays by its own rules and does whatever it wants.
I noticed the same thing last fall when i did an alternative treatment. I noticed a small switch in the side, noticed getting hit at weird times. Someone described it to me as "the death rattle" of the beast.
Sounds to me like maybe your head is taking in that kudzu and trying to rid itself of the beast.
Keep on the same track and let us know what happens. I may try kudzu soon too!
PF wishes, bro
BMonee

Title: Re: Unusual changes
Post by Dragnlance on Apr 4^th, 2006, 7:41am

Hey Everyone,
Thanks for responding. Time change also messed some of the times, but does not explain this. Today I got a hit 10 minutes ago, (6:20 AM) What is this crap???
Luckily this is a minor hit and I can deal with it.
Last night was ugly. While nothing major, (nothing above k7) but it went on and on. Started at 2 PM and was still fighting it at 11. It quit abruptly at 11:10. (just too wierd)

I hope what you all are stating is true, about the possiblity of the end of cycle for a while. (I am not sure how to handle this, as I have never had an end of cycle, so Jonny, expect some emails if that is what happens to me :o)
Yesterday was nerve wracking for me because I thought I was going to have a major hit here at work. I asked my boss to let me go an hour early, which he did, Thank God. I saw the look on his face, so I know I wasn't looking too good, which I suspect is why he let me go.
My doc gave me a sample Stat Pen for Trex, along with a couple of sample vials. I used one last week for major hit. I brought it along today, and am going to show my boss and a couple of friends how to use it, just in case I get a truely major hit. (I am over-due for one of those)

Anyway, I guess I am antsey due to the clawing going on behind my eye, and am rambling.
Thank you for your imput

Lance

Title: Re: Unusual changes
Post by thomas on Apr 4^th, 2006, 9:24am

on 04/03/06 at 20:26:55, Jonny wrote:

The beast plays by his own rules no matter how long you have been in a set pattern.

I can attest to that this month.