Just trying to see if anyone else is finding this. I requested that this group be setup at RareShare and it took about 3 months.

Bill, I have this problem, although I do not know of other family members with it. My father's side of the family are not around so no way to see if it is hereditary I have had this since childhood and am now 57. When it starts I have tried everything I can to stop it. Seems it just has to run its course before it will stop. One thing I have tried that helps me keep it from starting. If interested I'll post that info.

Yes, I would be interested in hearing about your strategy for getting the trembling to start. I can't consciously control it. Also, i saw a neurologist (for an unrelated issue) and he never heard of Geniospasm before, but took an interest. I'll see him again next week.

I got a prescription for Provigil (Modafinil). It is for sleep disorders and keeps you alert, but if I take a 100mg dose in the morning and I can control my chin it all day. This works for me. I only take it when I know I will be in a situation where I don't want to appear nervous. It is expensive, and insurance wont cover it because it is not for this condition. I would like to know if it help others.

I meet with my neurologist Thursday, for something else. Maybe, I'll mention to him, but he just found out about geniospasm from me.

Hi,

I took part in a similar site called "experience project", but it has closed. I enjoyed reading all of the peoples' posts who shared their experiences of geniospasm. I see that this geniopspasm community site is quite inactive. Is there a more active site? The condition is rare, but still lots of people worldwide who shared theuir experience on experience project, both negative (sadly many negative) but, like me, also positive. Mainly from the States, but some from Europe too.

I would be intersted in sharing my experience along with many members of my family who also have it, including my nana, mum, aunties and my daughter.

Look forward to hearing from any of you

Cheers

Dol

 

 

 

Hi there, i was an early poster on experience project. I do not have Geniospasm however my Husband (he was adopted so unsure of his family history) and two of my sons do. It became a problem when my first son (now 9) developed teeth and started biting his tongue at night, he eventually grew out of it. My youngest son (19 months) has recently started to wake up crying with a bloody tongue, i have lost count this night how many times i have been woken and tried to comfort my little man, such an awful thing as it is so painful for him! not to mention my lack of sleep which is affecting the whole family too! it can happen every twenty minutes or so then he might get a few hrs sleep before doing it again. Has anyone had this problem and found anything to help? a couple of medical articles linking Geniosppasm and nocturnal tongue biting suggest the tranquilizer Clonazepam. with a looooong list of possible side effects including depression etc i hesitate to suggest it to the Dr and wonder if this is my only option for him. Any suggestions/experiences? 

Look forward to hearing from you.  As for the chin tremors, they dont seem to bother my boys or husband at all really, it is just a unique part of them which i love. My nine yr old calls it his party trick.  Hopefully this side of things remains a non-issue for them through teen years.

Cheers,

nelly