I haven't posted anything here for a while but last Thursday I got hit with a bad attack that lasted about 45 min.  First one I have had in 3 weeks...I was hoping maybe they had gone into remission... anyways my attack comes in waves of intensity and at one point inbetween my whole face started tingling and went numb.  That is the first time this has happened to my WHOLE face... has anybody else experienced this?  Also, this week I have been getting sharp stabbing pains that only last maybe 5 seconds throughout the day in the top of my head.... Definately not typical of my usual...:/

Hi Greeneyes87,
I've only had facial numbness/tingling on the side of my CH (usually my left side), and it has only happened when it's a REALLY bad one.  On occasion, I've had the sharp stabbing pains run through my head.  They only last a few seconds, and I've just attributed them to part of my CH.  Honestly, I haven't worried about the stabbing pains too much because I have two MRI's under my belt with no abnormal findings.  I've also had my top lip swell on my CH side--totally freaked me out!  Thank goodness my lip didn't stay that way! 

From what I've read on here and from my own observation, CH can morph and change and you can experience new and seemingly random issues.  Maybe someone else on here has had the same experience and can chime in.  Hope you're PF and doing much better today!

Best Wishes,
Payg

I have had numbness on the pain side (left side) and as I’m a chronic sufferer, the jabbing pain bouncing off the top of my skull are a regular thing.

These are both symptoms of the CH travelling along the Trigeminal nerve.

They are not something you need to worry about. Its true to say that CH can morph. It’s also true that it differs from sufferer to sufferer.

Unfortunately, there’s no “one size fits all” with CH.

Peter.

Peter510 wrote on Jan 17^th, 2018 at 3:28pm:

I have had numbness on the pain side (left side) and as I’m a chronic sufferer, the jabbing pain bouncing off the top of my skull are a regular thing. These are both symptoms of the CH travelling along the Trigeminal nerve.

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This diagram shows the branches of the trigeminal nerve which is affected during a CH and it covers most of the face, so no great surprise that numbness of the face can happen.

Oh I am aware how they morph and change as I have seen my fair share of that.  I know there isn't a box to fit in and that everyone is different.  I deal with the day to day jabs...not worried just has been become part of life.  I have had tingling before on mh CH side but this one just really freaked me out being my whole face.  That is the first time that has ever happened and then I got hit really hard.

No numbness with the attack I had yesterday but this one lasted an hour and a half...while at work.  I laid on the floor in the back room crumbled up crying on the floor :'(  I think this may have been the longest attack I have ever had...but I would have to look back at my headache journal to be sure.  Guess it may be time to go back to the nuerologist and say ok I don't think this is working because they are coming back strong...  he thinks it is SUNA while my doctor had thought it was Clusters originally.  I have been taking Lamotrigine and have titrated up to 200mg now.  While I type this I think I feel another one may be coming on.  Crap!

Make sure you get something to abort your headaches. No matter what it is, 90 minutes of severe pain is something you don't want to ever have.

Assuming that it is CH, ask about oxygen and imitrex (injections / nasal spray).

You posted a while ago that you  were trying vitamin D3. How did that go?

Have you tried verapamil as a preventive? Ask about that.

Hoping that you get some relief soon.

Yes well because my nuero said I wasn't a typical clusterhead...as in my headaches don't come in clusters...which didn't even make sense to me I was not given the typical preventatives.  The previous nuero was a quack and I had asked about nasal or injections but he gave me pills instead which of course take too long to work and made me feel awful.  I was at work too and all of my things were at home.  I typically get them in the evenings and I had been doing somewhat better I thought.  I had tried the D3 and it helped some but I was not PF.  I got off of everything before I saw the 2nd neuro to give myself a clean slate for whatever medicine he was going to try me on so I would know if it worked or not just in case it wasn't clusters and also to see if they would come back full strength or not...sounds crazy I know.  I have not started the full regimen back up.  I am taking multis, fish oil, tumeric, and 10k D3 pretty much daily...  I tried verapamil with the first nuero but the dosage was waaaay to low to make any kind of dent and he only gave it to me when I asked about it because he wanted me to try Topamax and I told him no.

Not my whole face, but often on the pain side around my jaw, cheekbone and upper lip.  It's not complete numbness but feels like the last hour of a dental aneasthetic before it wears off.  But mine is often between attacks - and even when I'm not in cycle.  It serves to remind me that the beast is still around.