Hey, I'm new around here, but you all seem like family to me already!  I'm in my 1st cycle (since march 1st) and have been diagnosed by a neuro. as having CH and overlapping migraines(although I'm not sure about the migraines-I think my symptoms fit perfectly w/ CH and not w/ migraines).  My question is this;  my HA's have been milder w/ verapimil and no longer have any perdictability which I think from reading here is normal but last night I had a HA that was pretty strong-but on the wrong side!!!  Is that really possible?  I'm back to HA on the right side again this morning.

Don't be concerned; a common experience especially when you're first starting to have CH. Has no clinical meaning.

Not uncommon to find the sites, degree, quality of pain wanders about your head. It took me 3-4 years before I had highly stable attacks.

Hi Lisa. Welcome!

My CH has been quite unpredictable for the last several years, with every 5th to 6th hit on the right instead of the normal left. Switching sides isn't exactly common, but it's not abnormal and *does* happen.

Always on my left. Always. I have had a few, what i would call migraines form on the right side but it was no cluster!!. So my question is was it a HA or a cluster HA? anyone who has had anything near a kip 8 or up knows the difference and will automatically be able to reconize that old familair pain. thanks and hope you feel better, Coach bill

I've had mine switch sides many times...

I've never had them switch sides during a cycle... but have had a couple of cycles on the other side (my left is most common)

According to some of my favorite, and most knowledgable friends. Yes as a matter of fact they do change sides. Nothing to concern yourself with.
  Unless you get hit with lightning at the same time. Now, that would suck. Me I'm going to worry about ASB running me over on my Tricycle with her Motorcycle.
[smiley=smokin.gif]

Wanna hear something crazy???????????  I have actually wished that, during a kip 9-10, it would switch sides.  Almost as if the pain just giving me a break on the right would make it better.  Never changes though......... always right.

Jeannie

I have experienced side-switching and bilateral attacks too. Not nice  >:(

Apparently up to 14% of sufferers may experience side switching during a cluster bout, whereas 18% may have side shifts from one bout to the next*.

The tendency to develop CH on the opposite side is 200 times more likely than for an individual to develop the disease at all**.  Interestingly, not only does this indicate an increased vulnerability amongst existing sufferers but also suggests that a structure with anatomic connections over the midline is involved.

-Lee

* Sjaastad O, et al; Bilaterality of cluster headache: an hypothesis 1985.
** Bahra A, et al; Cluster Headache: a prospective clinical study with diagnostic implications 2002.

This has been interesting reading!

I have had left sided hits for about 18 months but a few weeks ago I had the feelings that one was going to start on the right.  This feeling lasted most of the weekend and then bang I had my first right sided hit, get lots of feelings (shadows?) that its going to happen again but only actually has about 3/4 times.

Its strange because I get a droopy eye on the right side (not seen this on the left!) along with a stuffy nose but it doesn't run like my left side does.  Also the pupil on the right side gets smaller than my left but again this doesn't happen on the left side?

I take it from reading the above that this is all normal?

Lisa
xx

lisa1973 wrote on Jun 26^th, 2008 at 1:17pm:

Its strange because I get a droopy eye on the right side (not seen this on the left!) along with a stuffy nose but it doesn't run like my left side does.  Also the pupil on the right side gets smaller than my left but again this doesn't happen on the left side? I take it from reading the above that this is all normal?

Hi Lisa

Over the years, one of the most important things that I have learned about this bloody disease is that nothing appears normal.  I don't think that there are two CH sufferers completely alike (in terms of CH pattern etc.) in the world.  Plenty are similar in terms of nuttiness though.  Even if two people's patterns are completely alike during one particular bout, then it will invariably change next time round.  It is the old nature/nurture argument; if you like that sort of thing.

It can be reassuring to know that nothing is normal in CH though.  It means that when something abnormal happens then it probably is normal.

All the best with it.

-Lee

Thanks Lee x

You're welcome Lisa, but go steady with those kisses ;)

Folks may also find this interesting, but not necessarily reassuring:


Quote:

Cephalalgia. 2008 Jul;28 Suppl 1:8-11. Epidemiology of fixed unilateral headaches. Leone M, Cecchini AP, Mea E, Tullo V, Bussone G. Istituto Neurologico Carlo Besta, Milano, Italy. A fixed location unilateral headache suggests involvement of a precise nervous structure, and neuroimaging investigations are essential to seek to identify it. Nevertheless, side-locked primary headaches also occur, although they are rare. Side-locked primary headaches are more frequently found in the group of the short-lasting (</= 4 hours) headaches but long-lasting headache forms may also present with the pain always on the same side, including migraine, tension-type headache, new daily persistent headache and cervicogenic headache. Future studies should address the issue whether patients with side-locked headache form differ from those with non-side-locked form both in terms of natural history and biological markers. Among 63 consecutive chronic cluster headache patients seen by us from 1999 to 2007, 32 (51%) had side shift. We also found that the duration of the chronic condition was significantly longer in those with side shift than those without. The high frequency of side shift in chronic cluster headache should be considered when proposing surgical treatment for severe intractable forms of the disease.

The Italians certainly aren't normal though ;) ;D

-Lee

Hi Lisa!

Welcome to the nut house family!

I have been a sufferer for almost 30 years.  The one very obvious fact that I have learned is that the beast is a real SOB ... Just when you think you have it understood, and predictable, the beast shows his colors and changes!  My headaches are NOTHING like they were when I first started.

And, YES, they can switch sides.  I am chronic, meaning I have them every day, no breaks.  I never know which side they are going to hit me on, although, my left side is my predominant side.  I have had hits where I get nailed on one side, and then it switches over to the other side, and nails me there.  Then back and forth for a while.  As soon as one side is done, the other side fires up.  Those REALLY suck!

But the real cake topper is when you get hit with a KIP 8/9 on BOTH sides AT ONCE!  That is real hell!

Many have said that the hits on their abnormal side are much worse than the ones on their normal side.  Maybe it is just that you are somewhat used to the one side, and when you get hit on the other side, it is such a shock, and unusual pain that it feels worse.  I don't know.  In my own experiences, they both suck, and I can't say one side is worse than the other ...  YMMV (Your Mileage May Vary ... meaning you may have a different experience)

Anyhow, you are doing the right thing: ASK questions!  Most of us know more about this affliction than even the doctors do, so feel free to bombard us with your questions.

Chuck

Oh yes, the beast does switch sides... I'm a leftie, but I've had some action (so far, just shadowing) on the right side. I recall very well how odd it was to get familiar symptioms on the "wrong" side, though.

Sanna

Lisa,

    YES ----  For me, my bouts usually start on the left and although excruciating no where near what the right side does to me and about a week or two into the bout, BANG, the beast hits full bore on the right side with no mercy.  Oh and Welcome to the forum, the people here are life savers to say the least!

Dave  

Everything everybody else said. And more.

Have had these dastards for, hmm... 25 years? Mebbe, mebbe more. Resolutely right sided.

Had a four year break, thought I was done, then this current cycle started May 7th, right side per usual. After about 3 weeks, one fine day in May, the old fella decided to up and go left on me... just kinda for a treat one weekend.

Imagine my surprise.

And then back to the right, where he's remained.

I think I hate this.

David