Here's my story:
For the past two years (I'm 32) I've had periodic outbursts of really bad headaches and feeling tired/groggy/confused all the time. I haven't really tracked them, but I would guess the episodes come every 4-6 months and last about a month-6 weeks.

Last time (October 2007) I finally went to see a primary doctor (not much of a doctor guy in general). He told me it was probably some kind of infection and it would go away. It did.

Until 3 weeks ago. So I went back to a different doctor. He took me more seriously. Did blood work and an MRI... MRI showed something (I don't remember the words he used) that he thought indicated migraines.

He referred me to a neurologist and a sleep specialist (he things apnea). In the meantime he gave me a sample of Imitrex and it really seemed to help. As weird as it may sound, I was relieved to be on the track of figuring out what is wrong.

The sleep specialist appointment isn't for a couple weeks, but had the neurologist appointment today.
He asked me a bunch of questions... then said my headaches had some of the characteristics of migraines but not all... and some of the characteristics of cluster but not all. I felt pretty lost again.

He diagnosed a five-day round of a steroid to clear it up and to call him back in a couple weeks if they remain.

Here's the thing: he asked me about whether the headaches hit the same time each day and I hadn't thought about it. I guess I need to track that. As I read here and as he described, I think my headaches fit the cluster variety well except for the severity. Mine are pretty mild. On the Kip scale, I'd put the worst at a 7 and that's pretty rare.

So my question is: can cluster headaches be relatively "mild"?
Should I try to find another neuro? Should I start trying to track time of day better?
Thanks in advance for your help

yes, keep track of time, and intensity, and where the different sensations occur - back front side behind eye, etc.  Occurring at the same time each day is a ch trait.

They can be mild, especially at the beginning of a cycle, every one differs.  Mine go in mini cycles as I'm chronic, mild, then increasing intensity, to slam city.

Also, note how long each occurrence lasts.  if it is 8 minutes or less, it could be paroxysmal hemicrania and indomethacin works for that, at least 50 mg several times a day. If it is off and on all day with no pain free time, it could be hemicrania continua - indomethacin is also helpful.  If it 15 minutes long up to 3 hours, it is more likely ch.  

Also, occipital neuralgia is similar but milder than ch, starting in the back of the head and going around the side to behind the eyebrow, can occur on both side or just one side - shorter time period also.  It can wear you down too.

See why the log is so important!  

I would stick with the neuro if he/she communicates and listens.  It takes time to develope a relationship and it looks like you are off to a good start.  Neuro is asking the right kind of questions.

Good luck.

Charlotte

Your on the right track.  Others may have better advice on if there should be a next move for you.  I will tell you that after being diagnosed with CH, I thought back and realized these started in high school.  And they did start out pretty mild.  Just a small amount of pain around the eye.  And they CAN happen the same time every day but that is not always the case.

Yes, try to track your headaches for a pattern.  Try to pay attention to all the areas of pain.  Usually, for me its the eye, temple, and back of the head.  Track how long they last. Are they on one side of the head only?  If you vomit or have an aura, its probably not CH.

Also, try to slam a energy drink down (redbull, rock star).  These help.  Also print out some info on the tabs on the left.  Reanup on Oxygen for aborting an attack.  Ask more questions here.  there are lots of knowledgeable people here

I highly recommend keeping a headache diary. Track when you get them, how long they last and how intense the pain is. You should also track possible triggers.
CH hits do tend to come at the same time each day, but not always. For most of my cycles my hits come two hours after I fall asleep. I had one cycle where I was hit at 9pm like clockwork and another that hit me at 5pm. Of course, there are always the random unexpected hits.
I didn't have any "mild" hits til after I was diagnosed and on a preventative - with my O2 on the ready. Prior to that, I was hit pretty hard every cycle.
Have you taken the cluster quiz?
It sounds like your neuro is familiar with CH - that can be half the battle.

~Kris

Seth, I think the thing that told me I had CHs was the fact that I couldn't "lie down in a dark room" to make it feel better.  My daughter had migraines and she HAD to "lie down in a dark room".  Plus her headaches sometimes lasted for days.

I have to say I never kept a diary but it wasn't long before I knew the times I was most likely to get them.  But the beast always throws some curve balls to keep you guessing.

Good luck, and, I don't mean to be glib, but if the CH meds work for you, then it's probably CH, but the name of what you have won't really matter.  What matters is that you find relief!

Wishing you all the best,

Brett

Seth,

Here is a link to the headache diary lots of people use.  You can make it larger and then print it off.

 START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


Linda

Hi Seth-

Yes, CH attacks can vary in intensity.  Pain is relative as well.  A big indicator for CH is timing.  Average episodic cycles last ~6-8 weeks and they are quite regular (although not allways) in the time of day the come on.  

A five day round of steroids sounds to be on the short side.  A taper is important for steroids (prednisone)  Usually you start out high (60 mg) and take it each MORNING and every thrid day reduce the dose by 10mg.  

-P.