Does anybody else get CH on both sides (at once)?

[zizka]

Sorry in advance for the wall of text, I want to be thorough.

Hey all, I've been doing quite a lot of reading on CH. I've seen from almost every source that CH appear ONLY on one side of the face, but mine have always been symmetrical.

I'll start by saying that I've been diagnosed by a few MDs with CH. A few members of my family suffer from classic migraines, but my attacks are much different from what they've described. I have been suffering from attacks since my early teens, I am now 25.

Most of my attacks occur very early in the morning, typically around 4am, and wake me from a dead sleep. I am unable to fall back to sleep during these attacks. I am usually able to stay in bed, but toss and turn, often squeezing my head between my hands in some desperate attempt to relieve the pain. The attacks usually last 30min-3hours.

The pain starts just below and behind my eyes, and radiates back wards, as if someone were drilling up into my brain. The pain is so bad I can't possibly describe it. I also experience severe pressure in my sinuses, normally on the left side, along with a runny nose.

Sometimes during a cycle, I develop what I can only call a sixth sense warning me of a coming attack. There is no tingling, or blindness I've heard described by the migraine sufferers in my family, just this sort of knowing it's coming, a calm before the storm. Using this I can sometimes prevent an attack. If I am unable to do so, the attack can flare up without warning into a full CH. The attacks also disappear as quickly and with no warning.

A final note about the pain, is that while experiencing an attack while moving, I sometimes get very brief bursts of pain on one side of my head that is several times more painful than the static pain.

I have not tried O2 or any psychedelic treatments. I have found that shotgunning a cold energy drink followed by a shower alternating very hot and cold on my face can bust the attack, though sometimes nothing seems to work. During the times that I "feel" an attack coming, I will usually take 200~mg caffeine with an non-recommended dosage of anti-inflammatories, supplemented with 25mg of ephedrine.

There is so much more to say about these attacks, but I think I've been descriptive enough. Now, my question is: Why do I experience them on both sides, and does anybody else?

edit: wanted to note that alcohol and prescription painkillers (esp. Tramadol) seem to trigger attacks.

[MoxieGirl]

Hi Zizka

Knowing the unpredictability and variance of CH as I do, I'm not at all surprised by your description.

Attacks occurring on one side of the head is a diagnostic criteria for clusters, but I would also say that for 98% of sufferers, alcohol is a trigger. But it's not for me.

The only consistent rule for clusters that I've found is that they are unique for each person, and just as soon as you figure yours out, or find something that works, they change.

I sometimes get bursts of pain on both sides of my head, or in the very centre during an attack. Sometimes an attack will start in my right temple, and very quickly move to my left, or my left eye. Sometimes they start in the back of my head, or the top of my head, and move to my forehead, eye, temple, etc.

And yet, a "by-the-book" cluster attack is on the inside of the eye, and always one sided.

Many people comment that their attacks are always on the same side, while just as many, myself included, flip flop.

My guess is that clusters being one sided is a good diagnostic guideline, but also shouldn't (on its own) be something to rule out clusters.

I would also guess the one-sided argument comes from the fact clusters hit the trigeminal nerve, which extends down each side of the face. But not across the face, so it tends to trigger on one side or the other. Perhaps triggering both sets of nerves, on both sides of the face at the same time is just very rare.

The odd sense you get of an impending attack is what I call a shadow, although I think they are different for other people. My shadows don't involve any pain, just a presence of a darkness in my mind, a reminder that the demon is there. Sometimes it is a prelude to an attack, but not always.

hope that helps.

MG

[zizka]

It's definitely good just to know there are people out there that understand what exactly how bad an attack can be. "Shadows" is a really good term to describe those feelings. Sometimes they are painless, other times it's like an echo of the real thing. Is it common for CH sufferers's to have a high pain threshold? I've always felt that I've had an unusually high pain tolerance, just assumed that it was because even the second worse pain I've experienced was a minor fraction of an attack. Maybe I'm just looking for a silver lining.

[CHfather]

I have not tried O2 or any psychedelic treatments

  There's a lot to be said for both of these, but O2 is essential.  GET IT, please.  It's ridiculous, even tragic, that you've been dealing with CH without it for so long.  To read more, go to the MENU tab on the left side of this page.

It sounds like you're not taking any meds, or least not any abortive meds like imitrex.  A great opportunity for you to seriously consider busting.  Start here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865