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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Input please this is starting to scare me.
        
(Message started by: Redd715 on Feb 20^th, 2005, 11:44am)

Title: Input please this is starting to scare me.
Post by Redd715 on Feb 20^th, 2005, 11:44am

I've been a CH lefty for as long as I can remember. I've had the rare switch hit from time to time, but the tell tale *twitch* has always been below the left eye only. Well for two days now, though there have been no hits on the right side, between hits I am getting the *twitch* under the right eye now too. I can be shadowing on the left and the right eye will be twitching away like crazy..

WTF is going on?

Title: Re: Input please this is starting to scare me.
Post by purpleydog on Feb 20^th, 2005, 12:42pm

Mine switch sides when I'm in different "cycles". One time on the left... for a few weeks, a couple days break, then they start up on the right. A couple months ago, I had been getting hit on the right for that particular "cycle", when I noticed I was starting to feel it on the left, I was having a shadow on the right, but I started to get hit on the left, hard. I tried to tell myself it couldn't be CH, because I had been getting hit on the right lately.

I WAS getting hit on the left, and very hard. It was way worse than the hits I was experiencing on the right. I finally got some trex, and it went away after awhile, I think it took longer, because I waited too long.

That started a short period of time of getting hit on the other side. The hits were harder and longer. K 10's every time. And they would last 3 hours. The right side hits stopped for about a week, while I was getting hit on the left, then went back to the right. It sucked. I've never had that before, and it's happened again a few times. The opposite side hits were worse and longer.

Hopefully, it's just a temporary thing. I know we get used to one side, and if anything changes, we're asking WTF? Who knows, it's probably the beast throwing a little variety in our lives. Fucker.

Title: Re: Input please this is starting to scare me.
Post by Sean_C on Feb 20^th, 2005, 12:48pm

Have you recently changed meds?

Title: Re: Input please this is starting to scare me.
Post by Redd715 on Feb 20^th, 2005, 12:59pm

on 02/20/05 at 12:48:37, Sean_C wrote:

Have you recently changed meds?

Recently been going off meds.

No verapamil at all for 6 days now.

Title: Re: Input please this is starting to scare me.
Post by Sean_C on Feb 20^th, 2005, 1:02pm

I haven't taken Verap but lots have here.

Anybody out there ever have this happen before because of this?

Sean............................

Title: Re: Input please this is starting to scare me.
Post by BikerBob on Feb 20^th, 2005, 1:11pm

on 02/20/05 at 12:59:09, Redd715 wrote:

Recently been going off meds.

No verapamil at all for 6 days now.

How's your blood pressure? Going off verap can cause a sudden spike in BP that can trigger lots of screwy stuff.

Bob

Title: Re: Input please this is starting to scare me.
Post by Redd715 on Feb 20^th, 2005, 1:14pm

I can say this with certainty...the verap does...if nothing else...tame the beast to a degree...I haven't had hits in nearly a year that went into my teeth, but since off the verap even the shadows make my upper left molars ache...

what a strange beast this is huh?

Title: Re: Input please this is starting to scare me.
Post by Redd715 on Feb 20^th, 2005, 1:17pm

on 02/20/05 at 13:11:55, BikerBob wrote:

How's your blood pressure? Going off verap can cause a sudden spike in BP that can trigger lots of screwy stuff.

Bob

went off it very slowly Bob, as to not let it drop to death levels. I have very low BP to begin with two weeks ago it droped very very low and I couldn't move without feeling I was going to pass out. Fridays trip for a BP check had me right at 102/64 better than the 80's/50's of past.

Title: Re: Input please this is starting to scare me.
Post by Sean_C on Feb 20^th, 2005, 1:23pm

I usually feel it in my upper ~~left~~ right gum area during a hit. I once was certain my headaches were caused by my teeth. I actually sat down in the dentist chair in the middle of a hit and demanded he pull them all. ;;D Definately a wierd disorder for sure.

Sean.............................

Title: Re: Input please this is starting to scare me.
Post by Redd715 on Feb 20^th, 2005, 1:39pm

on 02/20/05 at 13:23:55, Sean_C wrote:

Many many a night before I was Dx, I'd wake up to the beast and bounce around in the bathroom mirror with dental floss and a pair of needle nose pliars trying to pull them out myself...

Warning to others ...DO NOT TRY THIS...you never get the teeth out and only break and chip the shit out them.

:-/

Title: Re: Input please this is starting to scare me.
Post by Sean_C on Feb 20^th, 2005, 1:52pm

I can't remember how many times I would start to brush my teeth trying to make the pain go away, we do wierd shit when getting hit don't we ;;D Where all fuckin nuts thats what it is ;)

Sean............................. ;;D

Title: Re: Input please this is starting to scare me.
Post by Kris_in_SJ on Feb 20^th, 2005, 8:34pm

Hi Redd,

After my last cycle, I decided to wean off the Verapamil totally until next time 'round. Took me a full 5 months. Each time I decreased the dose, those twinges would start and would last for about a week. A couple times I wimped out and upped the dose again for awhile.

However ... I never had twinges on my "non-cluster" side. Maybe you're not quite ready to go cold turkey? Could you start taking it again in small doses and see if those twinges and shadows go away? If so, maybe you need to wean down like I did.

Just a thought ...

Kris

Title: Re: Input please this is starting to scare me.
Post by Redd715 on Feb 20^th, 2005, 8:55pm

on 02/20/05 at 20:34:36, Kris_in_SJ wrote:

I'm trying to get off all the drugs I've been on for the last year Kris. Looking into other means to treat this beast. Officially chronic now and seeing no end in sight with traditional meds that could harm me in the long run, I'm opting for a different avenue.

Title: Re: Input please this is starting to scare me.
Post by sandie99 on Feb 21^st, 2005, 4:31pm

on 02/20/05 at 13:52:00, Sean_C wrote:

we do wierd shit when getting hit don't we ;;D Where all fuckin nuts thats what it is ;)

I bet we do... :P

Title: Re: Input please this is starting to scare me.
Post by E-Double on Feb 21^st, 2005, 5:24pm

Hiya Redd,

My hits will sometimes switch sides as well....
Within this long cycle they have been predominantly right sided but the ones that come on the left are hell.....
I also have other party favors going on that are quite annoying and painful that tend to switch.

It's a real biatch....let your doc know and do whaever you have to do.......

For some detoxing I'm sure is not worth it.
I was trying to do so before the wedding and on honeymoon they started coming again and since are starting to roar.....

I am currently contemplating either......totally detoxing and going a "different route" or upping again and adding......Hard decisions us crazies have to make!

Hang in there!!!

Eric