I have CH and wondering if anyone has ever had these symptoms.  Just a quick history..I had an eposide of CH in 2007 and my headaches lasted over 3 years.  So many of the symptoms I will describe are attributed to them... I know that now.  The reason I konw is because my CH went into a remission period and I felt GREAT! for 2 and half years..(normal)   Since then I got hit 3 weeks ago and all the symptoms I had years ago are magically back.  I kinda also figured this out during my remission period when I had a slight headache come on.  Either way ... its been 3 weeks and my initial attack lasted almost 2 weeks..very very painful!  I am now feeling this daze kinda like a migraine in my forehead not on the left side of my head where I normally get my CH.  and I feel a little dazed like I am off balance or buzzed if that makes sense.  I also have
legs weakness and can barely stand up for more than 15 minutes.  I generally get very fatigued VERY easily.  My legs (lower) feel like they get swollen and my feet def get swollen.  It is a general sense of malaise that I cannot shake.  I had this same feeling for another 2 years after my last episode and I am terrified I will have to undergo this all over again.  I am generally weak and get tired very easily when I feel this slight pain in my head.  It is always there..it is def more like a headache because I feel it under my forehead on both sides.  wWhen I close my eyes it almost feels like I am being lifted away.  Not only that , I cant sleep!  THis last attack is really messing me up.  My dr just put me on verapamil and cafergot which is a caffenine pill or something but I have little faith this will work.  I am reaching out to see if anyone has any suggestions and or is gone thru what I am going thru.  My neck is sitll soar from the attack (didnt feel that with my previous episode years ago) but my neck seems like it is sore and just under my skull when I move around.  I am at my wits end and looking for some other folks that might have been feeling this same way.   Is this the residual pain?  Will Verapamil break this cycle?   I have started verapamil today ...does this take affect right away or does it take weeks before it is beneficial?  Hope someone can shed a little light.

Clearly you are being treated for head pain, but is the treatment suitable to the symptoms you describe? So many of what you list is not generally (at all?) attributable to CHs, and so many docs have so little knowledge whatsoever of head pain let alone CHs. You need a true headache specialist, one who can diagnose cluster like symptoms and distinguish them from cluster headaches. I suspect you have a complex condition that will not yield to cafergot. Just my opinion, though. blessings. lance

I got my first cycle of cluster headaches in Dec 2013. I had never had anything like that before. For about 2 weeks prior to my first headache I had severe neck and shoulder pain and some dizziness, almost lke vertigo. I was traveling at the time and had gone up to the top of the Empire state building so I just thought that I had a sinus infection that was made worse with the changes in elevation. I ended up having a cluster cycle that lasted about a week ( about 4 headaches a day). Doc put me on anti-inflammatory medicine which seemed to help. He referred me to the neurologist because I also had numbness and like an "icy hot" feeling in my face. Right before the actual headache (30 secs) my nose starts burning and running. Pretty much the only warning to the headache. After that week, I was alright for most of the month of December but then started having some of the strange symptoms you have. I get periods (seems to start late afternoon now) where I have the icy hot feeling in my face (constantly) and feel in a daze lke you said. I feel off balance almost like "medicine-head". The only way I explain it to my husband is, I just don't feel "right". What I found interesting about your symptoms is when you said that when you closed your eyes you felt like you were being lifted away. I have felt this before my first cycle of cluster headaches. I tried to explain it to my husband once wondering if it was normal. I told him it feels like I am floating with no sense of space when I close my eyes. I never even associated it with the headaches. You are the first person that I have come across that said the same thing, wondering now if there is a connection to the headaches. I have not had a severe headache since Dec but have the other symptoms daily now. I have had an MRI and spinal tap (to rule out MS) and still no answers. I can only assume that these symptoms are some part of a maybe milder cycle. I don't really have any advice for you because I am fairly new to all of this as well but just wanted to let you know that I also experience these symptoms.