So after another beautiful night with the beast (total sarcasm), I am left with a question. There are tons of posts here so I may have overlooked some but I don't see any mention of tingly sensations or numbness. Does anyone else experience their face, arms, hands or legs getting tingly or somewhat numb during an attack? I mentioned to the specialist that I was taking advil before knowing what I was up against or being diagnosed. He told me that if you take something not "good" enough to battle the pain, your body can push it into an arm or leg and that it wasn't uncommon with ch sufferers. So I obviously know not to do that anymore but even with no meds much less rx's prescribed as I cannot afford the visit or the scripts, I still as of last night like I always do get really tingly in my arm, especially my hand im using to hold the washcloth. It also gets really tingly in the bottom of my face, like half way down my nose down to my chin? Can anyone relate to this?

Hi RL, Have that little tingle at the moment. Right side of my face, my hit side. Below the nose to just above my chin. I don't worry about it. That's just me

All the best  :)

Thanks for the confirmation. CH people often wonder if they are just crazy or if someone elso goes through the same thing.

It's a bizarre affliction and no two people are alike.

The journey to find the appropriate means to battle the Beast begins with you. There is nobody on this earth that knows you as well as you know yourself.

Wishing you PFDS

Yes, I get numb, especially on the affected side of my face!  I feel as if I am surely having a stroke.  I have reported this to my doctor many times.  It always goes away. 

This is kind of interesting. I have a severe calcium deficiency and one of the symptoms of that is tingly fingers and toes etc (when mild - it turns to total cramp as the deficiency gets more pronounced)

One of the front line preventatives in this condition is verapamil which is a calcium channel blocker.. I wonder if you're on verap at all?

Either way - I definitely don't think it's anything to worry about. I would assume it's something to do wih vaso dilation and constriction due to the onset and aborting of your hit.

Just my thoughts - I'm no doctor!

Helen

Thank you Helen for weighing in on this. I don't think I have a calcium defiency problem but your description did get me thinking. The last couple of attacks left my face and fingers tingly as usual but when I tried to reposition my washcloth, I found that the hand was completely numb and wouldn't budge or open. Kinda freaked me out as in four years now, these are the first "side effects" of this kind. I have an appt. with the specialist on Monday and would normally keep it to myself but you've convinced me to at least mention it and see his reaction. Thank you. And no, I've never tried verapimil. Prednisone and o2 are the only meds on my list of things tried so far.

It could just be the vaso-dilation and constriction but I have long since thought there may be a connectionwith bloods being out of whack as funnily enough, whenever I'm seriously calcium and potassium deficient (to the point of hospitalisation and IV infusions, blood transfusions etc) - I'm absolutely hit free. It's just a shame it has to take something life threatening to make a non life threatening but bloody life ruining condition go away!

I'm looking forward to seeing how you get on with your neuro!