My present cluster has been limited by Verapamil to about one headache a week, and that one is quickly put to death with O2.  Recently I've noticed that the stabbing pain in my right eye occassionaly occurs at random points in my body like, for example, a toe or elbow.  It's like getting a random series of electric shocks, most of which are in the eye.  Anyone else experience this?

I also get stabbing in my eye sometimes. I dont think cluster headaches are limited to just the head. I also get a knot in my deltoid . How much verapamil are u on?
Hope all is well
Anthony

Haven't heard of that one yet. Great to hear Verap and 02 are holding the beast at bay.

Joe

40mg twice a day.  Started taking it late in my last cluster and it halted that cluster.  Didn't take it all winter and then started again in May when I felt the first of a new cluster come on.  Have only had about 10 CHs this summer compared to about 100 last summer without Verapamil.

Good for u! Thats a really low dose of verap I am glad it heps u my friend
keep up the good work
A

In my 31 years of CH, I've never had it anywhere than above the shoulders. 

Glad that you're cycle is much better this time.

Mia

Keep in mind, your nervous system crosses from one side of the body to the other at the brain stem. So, if you are a "right-headed" cluster sufferer, any symptoms directly related would be on the left side of the body, relatively below the neck. As I was waiting to get diagnosed for years, they thought I had MS due to the left side body symptoms (I am "right headed", so to speak). The headaches would get so bad, the pain would be in my left arm and leg, and often, post-HA, would leave weakness in both. Again, not sure if it's directly-related to CH, but I also don't seem to just have CH, as the HA specialist has said (I've had 3 concussions and also suffer now from some migraines). Point is, there is a connection, though I assume it's not common, based on what I've heard regarding CH being limited to head and face pain only.

Can't say I've had any experience CH related, other than stiff neck and ringing of the ears and occasional toothache type pain, while in cycle...

Not to say it can't go elsewhere, just have not heard of it or experienced it, ask you Neuro his or her opinion.

I've never heard of pain other than in the area of the head and neck. Could be some other cause, so I'd have it looked into.
All the best,

Baer

NotH20 wrote on Sep 1^st, 2011 at 3:37pm:

In my 31 years of CH, I've never had it anywhere than above the shoulders.  Glad that you're cycle is much better this time. Mia

Same.  Head, jaw, neck... that is it.
The jaw & neck stiffness manifests itself before the actual pain.  It is how I can tell the difference between a pending hit and an annoying bad shadow.  Jaw and neck stiffness... right to the o2 or Imitrex. 

I suspect the CH pain is phantom and generated by the nervous system, much like the tinnitus ringing is phantom in that it cannot be "heard" even by sensitive devices.  Moreover, it is statistically unlikely that there would be something wrong with my eye, jaw, ear, neck and the side of my nose simultaneously.  Because I believe this phantom phenomena to be taking place, I'm not surpised that the electric shock type lighting bolts that strike my eye during a CH occassionaly strike my elbow or toe.

I was chronic for 24 years.  Never had what you are describing.

I am on 480mg of Verapamil, and 800 mg of Carbamazapine and recently experienced a bad breakthrough that sent me to the emergency room. What was weird (and new for me) was the intense neck pain. I was unable to  move my head without incredible pain (made head banging a little difficult to say the least).

This time there was no eye pain...just neck on the same side and the back of my head. This was not an normal attack for me, and I am still suffering from the neck pain and stiffness. Anyone else with the severe neck pain/stiffness?

Neck pain/stiffness is probably the one thing I don't have. Only issue I have is two degenerative discs in my cervical spine and 2 herniated discs in my lumbar, so any pain I do get is from that. Damn, I'm a hot mess!!

I def get neck pain especially on right side (cluster side) and also a ganglion knot in my right deltoid

Neck and deltoid: absolutely! Thought it was because you contract about every muscle when an attack hits......