I was at the Science Museum in London on Friday with my son. In the hands on section there was a thermal imaging camara that projected onto a large video wall.

Several people were stood in front of the camara and I was noting their results, mostly dark skull shapes with white highpoints and intermediate shades inbetween.

The guy in front of me turned round and looked at me, then at the screen, then at me again. I thought that he was just enjoying the camara but then I saw my face on the screen - it was all white!

I was radiating heat from all over my head with the only dark patches being my eyes and mouth. I hung around the display to see other people's results but no one else achieved the same degree of heat radiation as me, including kids who were running around and being far more active than me.

Now I know that we can be guilty of ascribing unassociated symptoms to MC, but after reading up on malignant hyperthermia I was wondering if our muscles did in fact generate more bodyheat than was normal?

That's really interesting...many chiropractors in the US use thermography to pinpoint areas of inflammation even before you can feel the pain (I think it's detecting the constant firing of the muscles that are guarding a damaged area).

As far as your head, I have gone in twice for EEGs to check brain waves (I had seizures for a couple of years after getting West Nile Virus) and they could never get an accurate reading because they said the myotonia present in my scalp muscle caused artifacts that interfered with the testing.

So I guess even though we don't necessarily feel it, the muscles in our scalp, face, forehead, etc to have enough myotonia present to show up on thermography or electrical testing like EMGs and EEGs.

Jan

Thanks - that is very interesting! Most of my life, I have had what I was told (very judgmentally) were "tics", and admonished by my family and friends (especially my mother) to "stop doing it", and that I could control it.

The fact is that I guess, in a manner of speaking, I COULD control the twitching, but then again, I couldn't. My muscles would almost force me to stretch them - whether my neck or facial muscles, my arm muscles, my legs, whatever... the most obvious were my facial "tics" - once I began working a muscle, I couldn't stop, and it would last for days or weeks.

I guess I can see where we might be perceived as hot heads!! LOL - Lois

Jan:

I had an EEG once and the room was too cold for me. Because of the myotonia I can't really chatter my teeth and my jaw muscles just get really tight, sometimes to the point of provoking TMJ related lock jaw. I was laying there as still and quiet as could be when suddenly the technician looked at the feed and said "Boy, your jaw muscles are really tight!"

Possibly you had a fever, or the blood vessels at the surface of your skin were just dilated for one of a variety of reasons.

I get strange sensations in my scalp all the time, as well as facial twitches. My neck muscles also stiffen up and if I don’t do something to relax them I suffer really bad headaches. I’ve no doubt that the myotonia is present and probably responsible.

As to the fever I have considered this but I actually felt fine, in fact I was pretty active and on the go for 9 hours. My wife is training to be a nurse and she assured me that if a fever was responsible for my strange thermal image, which she witnessed, then I would have had other symptoms as well, but my general health has been pretty good of late. I didn’t even fall asleep on the train home!

I’m glad people found this episode interesting because I certainly did.

Type of Myotonia: Becker's

Country: England

Pete - My scalp has itched my entire life, for no apparent reason. I wonder if my little scalp muscles are having a twitching party up there?
I also know what you mean about the lock jaw/TMJ symptoms. Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

The worse thing about the sensations is that it occasionally feels as if something is crawling over my scalp or if someone has just touched me; the latter is pretty scary when I'm on my own and it's dark!

In fact the first one is too!

Type of Myotonia: Becker's

Country: England

FOR SURE!! I am so glad to know I'm not alone in this crazy feeling - Some day, all these bizarre little symptoms may all be acknowledged. For now, I think a lot of us still think we are the "only ones". (I even saw a dermatologist, because I thought maybe I had an atypical type of psoriasis or seborrhea or something - but I was fine. Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

This really makes me wonder now..I have suffered from
from what I call migraines, some neuro's say not so cause "migraines" will not show up on a EEG and I do not ever have a normal EEG, but anyone can tell well where my head hurts by feeling my head till they find the HOT spot. The area of the migraine will always be hot so that i will put ice packs on it..Have yet to find anything to control or manage these headaches, currently taking topamax, which has worked better than anything else they have ever tried..

Type of Myotonia: Thomsens MC

Country: USA

Karen - How interesting!! I had migraines from the time I was 11, until I had my hysterectomy at almost 52. (My parents never paid attention to my complaints, so I never knew what they were, besides horrendous, scary and miserable, until after I became an RN, and it dawned on me that the things I suffered were pretty classic migraines. However, I never had a formal diagnosis by any doctor - they just took my word for it. And I wasn't diagnosed with MC until I was 54 years old, 2 years later. It would be very interesting if this were yet another little oddity of this condition!!

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA