HAVE YOU EXPERIENCED...


Posted by grace anne , Apr 06,2001,06:50   Archive
I'm wondering if anyone out there has experienced this: When I wake up, my tongue is pressed so hard to the roof of my mouth and it takes some effort to "unglue" it. (I hope I don't end up feeling totally stupid that I posted this. I just never have heard of anyone coming close to this.)

graceanne in port orchard




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Re: HAVE YOU EXPERIENCED...

Re : HAVE YOU EXPERIENCED... --- grace anne
Posted by June in Toronto (June Floyd,June in Toronto), Apr 06,2001,07:54 Top of Thread Archive
I haven't experienced this Grace Anne - but we both know that `nothing' is stupid with this disease! Perhaps it has something to do with the meige - if you have that condition as well? I know my upper lip presses down a lot on my lower lip and I just attribute all the movements in my face to meige. Somebody else have better answers for you.

June in Toronto where it is raining this morning but is to be sunny and warm this afternoon




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Re: HAVE YOU EXPERIENCED...

Re : Re: HAVE YOU EXPERIENCED... --- June in Toronto
Posted by grace anne , Apr 06,2001,11:23 Top of Thread Archive
Thanks June. I don't know that I have Meige, but I've wondered if there is a name for this. I wonder if it isn't the start of Oromandibular dystonia. Whatever it is, it sure is aggravating.

graceanne in port orchard where rain or showers (either one is wet) is in the forecast




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Re: HAVE YOU EXPERIENCED...

Re : Re: HAVE YOU EXPERIENCED... --- grace anne
Posted by Carol in Tucson (Carol Thoma,Carol in Tucson), Apr 06,2001,12:06 Top of Thread Archive
Graceanne, When I first started developing torticollis (which I have along with BEB but it's under control now from Artane), I had the opposite experience. I woke up and found that my mouth had watered so much that there was a wet spot on the pillow! I felt like I had somehow become senile at the age of forty! And possibly as a result of that less than pleasant experience, my mouth was very dry. It wasn't a side effect of meds, because I wasn't taking any yet. So I think all this is tied together--somebody said something about the seventh facial nerve, as well as the neurons in the basal ganglia. In my case I think the face as well as the eyes and neck is involved simply because they're all connected and even though I haven't been diagnosed as having meige, I do see changes in my facial expression, especially my mouth, that can't be explained by anything except some connection to dystonia. So, no, I haven't had exactly that experience, but I've had an equally embarrassing related one. I think we all have.

Cheers!
Carol

P.S. Pardon my using all caps for this, but IT'S RAINING IN TUCSON!




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Re: HAVE YOU EXPERIENCED...

Re : HAVE YOU EXPERIENCED... --- grace anne
Posted by Mindy , Apr 06,2001,18:16 Top of Thread Archive
Graceanne,
I don't know if you are on any medication. But if you are, it may be causing dry mouth. Either way, try drinking more water, it can't hurt.
This is a movement disorder, so any movement might be part of it.
And No question or feelings are stupid.
hugs,
Mindy



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Re: HAVE YOU EXPERIENCED...

Re : Re: HAVE YOU EXPERIENCED... --- Mindy
Posted by Virginia , Apr 06,2001,21:13 Top of Thread Archive
Drinking more water may help, but don't just sip it constantly. It washes the saliva out of your mouth and that makes it feel drier. You need to do things to stimulate your own saliva, like chewing sugarless gum or sucking on sugarless candy.

You might want to try some of the Biotene products especially made for people with dry mouth. There is a new non-prescription chewable tablet coming out soon to treat dry mouth (stimulate saliva production), called Natrol Dry Mouth Relief.

I'm not trying to sell anything. Just thought I'd let you know.




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Re Dry mouth, good information

Re : Re: HAVE YOU EXPERIENCED... --- Virginia
Posted by Mindy , Apr 06,2001,23:04 Top of Thread Archive
Thanks Virginia,
This is very good information.
Where are the Biotene products sold?
Mindy in NY



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Re: Re Dry mouth, good information

Re : Re Dry mouth, good information --- Mindy
Posted by Virginia , Apr 06,2001,23:51 Top of Thread Archive
I get mine at CVS. I think the Laclede web site lists retail outlets.



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Re: HAVE YOU EXPERIENCED...

Re : Re: HAVE YOU EXPERIENCED... --- Mindy
Posted by grace anne , Apr 06,2001,23:04 Top of Thread Archive
I'm not on any medication for BEB. I've been on heart medication for many years though. I've always had dry eye and dry mouth and I do drink a lot.

graceanne in port orchard




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Re: HAVE YOU EXPERIENCED...

Re : Re: HAVE YOU EXPERIENCED... --- grace anne
Posted by Delaine Inman , Apr 08,2001,14:21 Top of Thread Archive
Many heart medications do cause dry mouth and mouth breathing may be aggravating the problem. Virginia's ideas are good ones. Do you sleep on a special cervical neck pillow on your side? Do you have history of mouth breathing, apnea or snoring? If you are developing some meige with the tongue thrusting, the dry mouth from meds and mouth breathing may be causing the tongue to stick to the roof of your mouth. If you have lost weight, or are overweight or just the aging process and excess skin hanging down can be blocking your airway some. Sleeping on side, propped up a bit(even if it is the entire head of bed up on blocks) often is helpful in keeping your airway open. Good luck and keep investigating the cause.
Delaine in TN where it is a beautiful day.



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