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        Cluster Headache Help and Support >> Cluster Headache Specific >> Cluster Moved Sides
        
(Message started by: Braindead on Sep 20^th, 2006, 4:37pm)

Title: Cluster Moved Sides
Post by Braindead on Sep 20^th, 2006, 4:37pm

Hi,
I may not be putting this in the appropriate place, so I apologize up front...

Anyways I have been suffering for 30 yrs or more way before anyone even knew about them. I have always had a cluster once a year for several days to 3 months and every once and a awhile I may skip a year. Always only at night when I would go to bed on the right side, tearing eye, neck, stuffed nose on one side. After many years finally got some help from a neurologist and got a steroid burst, worked great aborted my cluster. Next year got the burst had a mild seizure, burst did not work. never did those again. Next time I got Verapamill, worked for a year had some weird side effects then stopped working. Tried Ergotamine worked for a series then the next year stopped working. Tried EVERYTHING still nothing worked. FOUND OXYGEN worked AWESOME for 5 years, not real fast but stopped my head pain within 15 mins and if it came back that night it would always work, it still kind of works only very slow and not always. Ok so hears the kicker, the damn thing has CHANGED SIDES and acts completely different!!!! No more neck artery warning or tearing eye.

It starts in my upper back molar and plugs both nostril's and covers the whole front lobe of my head. It radiates over the top to the back of my head. SAME SCREAMING PAIN as the old school Cluster!!!! Doc gave me 9 pills of Imitrex, took one at onset, stopped the pain within 10 mins!!
Took all 9 pills every night at onset for 9 days, other than a little tired and nervous feelings I felt great. Went to get more and the Doc said no he would rather try me on Relpaks. Did the first Relpaks last night, worked within 5 mins and no obvious side affects so far.

ANYONE have these similar symptoms of the cluster moving and acting like this?

Title: Re: Cluster Moved Sides
Post by Richr8 on Sep 20^th, 2006, 5:27pm

Never had them switch sides, but I am a Relpax user and never had it work in 5 minutes. You are very lucky if that's the case for you. However, for the real head bangers, it is a guaranteed fix in about twenty minutes. My only cincern with Relpax, is that I never know if it worked, or if the HA had subsided on it's own.

Too bad it is so expensive and hard to get.

Title: Re: Cluster Moved Sides
Post by unsolved1 on Sep 20^th, 2006, 5:29pm

These 'headaches' can be unpredictable. I was right sided only for the first 12 years, then switched sides & became chronic. :-/

So yes, your situation is very familiar.

Also, many of us have had drugs that worked for awhile but then stopped working. :-/

Goodluck

UNsolved

Title: Re: Cluster Moved Sides
Post by Braindead on Sep 20^th, 2006, 5:41pm

Thank you very much for giving input right away. I have always been able to deal with my mess alone.. I am 48 now and getting VERY sick of this crap!!! I pray I dont go cronic- and I will pray for those that are...

Thanks again,

Denis

Title: Re: Cluster Moved Sides
Post by chopmyheadoff on Sep 21^st, 2006, 3:22am

im chronic - have been for 7 years although im getting relief from verapamuil right now.

your comment that verapamil stopped working worries me somewhat.

in answer to your question yes, im mainly right sided, but about 15-20% of them come on the left.
lefts always higher on the k scale and worringly enough, left ones usuaslly morph into right ones after 45 minutes or so.

strange eh ?

Title: Re: Cluster Moved Sides
Post by Sandy_C on Sep 21^st, 2006, 5:01pm

Hi Braindead (although I'm quite positive that your brain is still functioning very well).

I'm episodic, since 1999. All cycles have been right sided until my last one, last year (yes, I've been PF since end of July 2005). That cycle was completely different than any other I've experienced. From Feb to first of June, right side, like clockwork. Then had a lovely month of June with nothing. Beginning of July, start getting hit on the left, which lasted for about 3 weeks.

I can't say that the pain on the left side was any worse than the pain on the right, but I can say that, over the years, I've found the "positions" to place my ice packs, my fingers, to bang my head - it had become sort of automatic. When these puppies hit me on the left - It was totally out of my element and I had more difficulty in controlling my reactions to the hits. So, although I can't say they were more painful, I just wasn't able to control my reactions to the pain as well. Does that make sense?

Sandy

Title: Re: Cluster Moved Sides
Post by Edski_1 on Sep 21^st, 2006, 7:54pm

I was just looking at my notes, and the cycle after I had tried topamax was an "off-side" cycle. I'm usually right side, but I had a lof of lefts that cycle, and a couple that switched sides...

So far this cycle has been exclusively right sided. Maybe a few tinges of shadows on the left, but all the serious action has been on the right.

Title: Re: Cluster Moved Sides
Post by Kate in Oz on Sep 24^th, 2006, 7:20am

It truly is a strange beast.

I'm a righty and if I ever do get a lefty in the middle of a cycle, I usually take that as a sign that its finally coming to an end???

Kate

Title: Re: Cluster Moved Sides
Post by Carl_D on Sep 24^th, 2006, 9:03am

From '87 to '95 it was all right sided. Then, I started getting hits on the left and asked my neuro WTF was going on. He said that it happens in some people with CH. That neuro (Dr Weintraub at MHNI) was the one who turned me on to Verapamil and o2 back in the day when I lived in Michigan and they worked great until I went chronic in '98. Verapamil didn't do jackshit then.

Fast forward to 2005. Got diagnosed with high BP and put on Toprol XL. Though it had quit working in the past, I figured if I was gonna be on a BP med, I should try Verapamil again. Lo and behold... it WORKED! I had 5 1/2 months remission this year after 8 years chronic.

This is why, if something didn't work before and it has been awhile... try it again. Imitrex didn't work for me until I tried it again 3 years ago, thanks to a local CHead who encouraged me to try it again.

Since then though, I agree with most folks here that Trex can cause wicked, wicked rebounds. That is why since I went back into cycle I have been sticking with Frova tabs up until yesterday. Out of Frova, and DR appt got rescheduled for November, so I didn't get my usual stock of Frova samples. (My doc is cool and has given me lotsa Frova samples since he knows my insurance only covers 4 pills a month or 4 vials of Trex a month).

If the Verapamil stopped working, you may want to talk to your doc and see if they can put you on a higher dose.

I must say, I am amazed at how fast pills work for you. I have to chew them, let it sit under my tongue until I start getting relief, then wash the nastiness out of my mouth with some orange juice. Sometimes can take up to a half hour to kick in. I just wish Frova was available in shots.

Peace,
Carl

Title: Re: Cluster Moved Sides
Post by Chonas on Sep 24^th, 2006, 10:13am

on 09/24/06 at 07:20:47, Kate in Oz wrote:

I'm a righty and if I ever do get a lefty in the middle of a cycle, I usually take that as a sign that its finally coming to an end???

It commonly hits me on my right side, but when I get a lefty during a right sided cycle, it is a clear sign to me that the 'normal' cycle is close to an end, and a brand new one is about to start on my left side. Pain on my left side is more difficult to swallow, and it is always K*10**75. When the beast attacks this way it consists of more or less 8 weeks of pain on each side. [smiley=huh.gif]

Title: Re: Cluster Moved Sides
Post by chewy on Sep 24^th, 2006, 10:48am

Always been a left sider. Hoping it will move to the other side.

OF TOWN !

Title: Re: Cluster Moved Sides
Post by Charlotte on Sep 24^th, 2006, 12:23pm

Chewy, if you have to say something like that, say, "I hope it vacates the left and moves to the right."

I'm a rightie, and since 2002 have also had lefties.

Title: Re: Cluster Moved Sides
Post by clusterwife on Sep 27^th, 2006, 3:21pm

My hubby, Jay, started to have his change to the right. It's scary to see his shock, I try to have the ice and 02 ready. I pray they will subside, or eventually go away totally.

Title: Re: Cluster Moved Sides
Post by CHAIN on Sep 27^th, 2006, 4:49pm

8 years just one side and all over sudden they started switching sides and I got to tell you that it is not a break from the pain on one side. The right side which I get few attacks during the whole crisis is even worse. I guess I have already learned to live with them for 12 years but when they switch sides I really dont know how to handle them. Usually when it's the left side the attack lasts from 35 min up to an hour and 1/2, on the right side they last more than 3 hours!!! :-[ .
Anyway hope you feel better and hope you get more pain free days!. Stay Strong!!!
CIAO!

Title: Re: Cluster Moved Sides
Post by eyepopper on Sep 28^th, 2006, 5:57pm

I'm a lefty, but occassionally the beast will travel to the right for a cycle. Like others here, when that happens, the pain just seems so much worse.

It's as if my "good side" can't take it as much.

Deb

Title: Re: Cluster Moved Sides
Post by Braindead on Sep 28^th, 2006, 6:53pm

I want to thank everyone for sharing their experiances.
It's comforting knowing I am not alone. Not that I am happy all you folks suffer :o ;;D ya know what I mean!!
Weird stuff these clusters are, I have a doc appointment tomorrow morming, he wants to most likely run me through the scanner and makes sure I did not grow a head of lettuce or something in my brain. I think since they changed sides he just wants to be sure I am still ok..

The rebound deal from Trex is interesting,(and i am guessing Trex is imitrex) when does it rebound? the next night or right away after it kills the first cluster?

Thanks to all again,

Denis