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Cluster Headache Help and Support >> Cluster Headache Specific >> Crawling Feeling

Message started by SillyLili on Mar 14th, 2019 at 10:08am

Title: Crawling Feeling
Post by SillyLili on Mar 14th, 2019 at 10:08am
I have been dealing with CH for almost 4 months now and there is one sensation I have that I have yet to see shared in common by others that experience CH. I get a feeling of something crawling in my scalp. No, itís not lice. I donít know how to describe it I guess it feels like when you put one of those wire scalp massagers in your hair and move it around. But I only ever feel it on my right side which is my side affected by CH. Iíve never felt it on the left side of my head and it is a little unsettling because it just feels so odd. I donít get it every day. I suppose maybe once a week sometimes, once every 2-3 days? It really varies. Does anyone else get these? Or have an explanation?

Title: Re: Crawling Feeling
Post by Batch on Mar 14th, 2019 at 2:47pm
Hey Lili,

You're not silly and welcome to  You've come to the right place...† That crawling sensation in your scalp is called paresthesia.† It's one of the less common symptoms of the cluster and migraine headache syndromes.† It's likely the result of chemical insults to sensory nerves in the scalp and face by the neuroactive peptides released during the pain phase of cluster and migraine headache like calcitonin gene-related peptide (CGRP).

Paresthesia is also a close relative to one of the more common sensations among CHers having frequent high-Kip pain level CH called cutaneous allodynia - pain at the slightest touch around the face and scalp on the same side of the head as the CH.

Both paresthesia and cutaneous allodynia go away as the frequency of CH drops or episodic cycles end.

Take care and please keep us posted.

V/R, Batch

Title: Re: Crawling Feeling
Post by Mike NZ on Mar 14th, 2019 at 2:54pm
Hi and welcome

Batch has written a great answer to your question.

I know exactly what you mean as I get similar sensations and sensitive hair when I've got a migraine, but never with a CH. It is hard to describe exactly what it feels like, but it is a perfectly "normal" symptom.

Tell us more about how you are doing with your CH. Do you have a preventive to cut down how many CHs you get? Have you read up about how many of us have used vitamin D3 very effectively? Have you got CH abortives? Any other CH questions?

Title: Re: Crawling Feeling
Post by AussieBrian on Mar 14th, 2019 at 5:15pm
I know only too well what you mean,† Lili,† and I hated it!

For me it was only after a big hit and it was a worm inching its way ever so slowly,† as worms do,† under my scalp around my temple and ear.† It wasn't until years later when I saw a facial map of the nerves affected by this dread disease that I was able to identify the exact culprit and it wasn't a worm at all.

There's a few other symptoms rarely felt or discussed and one is the appearance of a thin red line across the bridge of the nose which may occur in or out of cycle and that had me tossed for a while, too.

Ahh,  what a wonderful malady we share.

Title: Re: Crawling Feeling
Post by maz on Mar 20th, 2019 at 2:47pm
I get it too, but unlike the others mine is usually before a CH, and it's across my cheekbone and top lip, not my scalp.  Like a spider crawling. :(

Title: Re: Crawling Feeling
Post by John2 on Mar 23rd, 2019 at 11:49pm
Same here, I get it too. In my case it's a preliminary thing either when going into an attack, or when shadowing and no attack eventuates. My hair also hurts. I know this will sound ridiculous, as the hair has no nerves in it, but it sure feels like it. One touch of the hair on the CH side when it's a comin' on and I go through the roof.

Title: Re: Crawling Feeling
Post by Anthony A on Apr 3rd, 2019 at 3:25pm
I've felt that sensation quite frequently during a cycle but never knew the what it was called. Thanks, Batch.

As others have mentioned, sensitivity/painful hair also occurs during a bad attack. This is actually my first time talking about that because of how ridiculous it sounds! Because you can't hurt, right?! Fun stuff.

Hang in there, SillyLilli!

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