Teeth and Bulbar ALSPosted by marianne-opilla on January 8, 2022 at 11:39 am
I’ve had ALS since 2018. My mouth has completely “shifted”. My dentist made me a mouth guard for sleeping because of clenching and grinding, which i never had prior to ALS.
My teeth inadvertently bite my lips, tongue,and inside of cheeks. Especially when i try to eat. It is too painful and a nuisance when i trying to eat and keep weight stable.
does anyone else have this? And maybe some tips.
I seem be always be one step up and two steps back.
MemberJanuary 8, 2022 at 12:01 pm
Marianne, I too wear a mouth guard at night. About 4 yrs. ago I began grinding my teeth at night which affected not only my husband’s sleep – – but was wearing down a few of my teeth (ack!). So, the dentist made me one, and I’ve worn it ever since. The grinding continues, but safely now.
I don’t grind during the day though. And found that focusing on keeping my face and jaw relaxed helps a lot. Haven’t had the problem with eating.
Are you able to drink liquids via a straw? That might be a way to keep up your calorie count.
MemberJanuary 8, 2022 at 12:09 pm
Thank you Dagmar,
guard is very helpful for sleep. I cannot use a straw anymore. My lips won’t seal and I don’t have suck anymore..
MemberApril 30, 2022 at 6:52 pm
Yes I also have the same issues. I also have Sojourns syndrome which causes dry mouth and cavities. I use Biotene products for dry mouth. It seems to help the cheek biting, creates some comfort. Blessings, Pauline kaza
MemberJanuary 9, 2022 at 11:47 am
Marianne, I also bite my lips, togune and cheeks. I just try to be more carefull and eat things that is more soft, no more steaks. Mine has slowed down last couple years but still does happen. Wish you the very best.
One thing I use every night is breath right stips. Have helped me allot.
MemberJanuary 11, 2022 at 10:37 pm
I, too, have difficulty with biting my cheeks in the rear. It seems worse when I eat salad, which requires more chewing but is happening more with other foods. I find my front tooth sometimes catching my lip as it has continued. As you know, once you bite your cheek, you are prone to doing it again and again. Frustrating and painful it is! It waxes and wanes, but I haven’t found a cause/cure; I believe it somehow has to do with weakening the cheek muscles. I do also have more difficulty moving food around in my mouth. If I take a taste of something too hot it burns my mouth because I can’t do anything but hold it in.
Another strange thing is I have had severe problems with sneezing violently. Not that they are violent but extremely forceful, and my jaws come together with sheering force. On one occasion, I sneezed; it sheered off my two front lower teeth and loosened four on the upper front. I had to get a three-tooth bridge, but thankfully the other teeth stabilized over time. I have adapted my sneezing, trying to control the force, keep my mouth open somewhat, and not worrying what comes out. Tricky when one has a mouthful of food! Six months later, I walked with my walker, had to sneeze, and sheered off the bridge. My kind dentist replaced it without charge. I spent about 8 hours with my dentist for two sneezes!
My ALS team had never heard of it happening to any other patients. I did not have any problems with sneezing or biting my cheeks before I had ALS symptoms. I even have to watch out now when I yawn because they are becoming more forceful and my mouth contorts and jaws come together hard.
MemberJanuary 12, 2022 at 12:45 am
I received my diagnosis one year ago January 2021 and biting my cheeks is a daily occurrence. You know how painful that is and a sore can develop. I went to CVS and bought something for cancer sores. I try to dry that part of my cheek or lower lip and put that on; I try not to get that area wet right away, yes it burns/stings. Let it dry and it seems to numb that area… it works for me. The next day it is all healed.
In one year I have lost my ability to talk, chew and now swallowing is even a problem. Everything I eat I put in a blender; that seems to go down ok. Water, Juice, milk are my problem now. I use “Thick-it” (Costco is the cheapest, of course it comes in a Costco size container) I make a drink with half ice so I do get some water down that way. I put milk in the blender with my “main course” so I am eating a creamed soup every day and breakfast is a smoothie with milk, fruit, protein powder and other supplements. I don’t have enough strength to suck on a straw anymore, I can’t even blow out a candle
I also yawn a lot, maybe 5-10 times in a row and drooling is a major problem. Do any of you yawn and drool??? OMG! ‘Can’t believe how my life has changed! It has!!!
MemberApril 30, 2022 at 7:11 pm
Sorry you have had such a scary and unusual experience. Maybe your mouth,,jaw and tongue muscles have become week. Have you had a speech therapist? My therapist helps me with swallowing, throat, Vocal and tongue exercises. I have maintained for 5 yrs. I wish you well.I believe nothing tried nothing gained
MemberMay 3, 2022 at 2:23 pm
I am limb onset slow progression and have started bulbar affects in last 18 months or so. My biggest bulbar issue is atrophy in tongue which causes me to have to concentrate eating to avoid biting cheeks and tongue. Eating is a pain. Can drink ok just can’t use straw anymore. Get flooded with saliva and sinuses. Take ipratropium for sinus and as needed atropine for saliva.
MemberMay 4, 2022 at 8:26 am
I have slow onset bulbar ALS. About four years at present. Speaking is a problem but have minimal choking. Drooling has become a problem and my lip area has changed shape. Also, I have lately noticed fasciculations there. My question is – has anyone with bulbar problems had DENTAL IMPLANTS.
I was recently advised to have a pre-molar implant by my dentist and worry that there is so much ‘going on’ in the front of my mouth that the procedure may fail. Also I am 81 years old.
MemberMay 5, 2022 at 11:15 am
Pat, over the past years of my ALS I’ve had to visit the dentist several times – – replacing a filling that fell out and having caps put on several teeth. Initially, I was so worried about choking… having to tilt back in the chair and having water sprayed in my mouth (visions of the awfulness of waterboarding!).
But I found out that modern dentists can accommodate “just about everything.” Mine tilted me back, but a nifty neck pillow kept my throat upright. The device used to prevent water from entering my throat is a “dental isolation device”: https://www.zyris.com/products/mouthpieces/
Another time, the dentist handed me the suction tube so I could “chase” stray water droplets during the entire procedure.
I wrote about it here: https://alsnewstoday.com/columns/2017/06/06/surviving-dentist-new-normal-als/
MemberMay 9, 2022 at 3:55 am
Thank you Dagmar.
Your two articles have certainly given me some ammunition for my future visits to my dentist.
MemberMay 11, 2022 at 11:59 am
Pat, I’m glad to know they were of help.
MemberMay 5, 2022 at 2:27 pm
My first symptoms was biting my tongue and cheeks. At the same time, I noticed some slurring with my speech and wasn’t sure if the tongue biting was causing the slurring. Also I had two dental implants one on each side. It was a dilemma for me because I didn’t know if I was allergic to the implants and material they were made of, did I have a TIA or what. I started with my physician who ordered an MRI. From there I was sent to a neurologist after the reading of the MRI, in between this I saw ENT because of hoarseness. Path was still unclear. I went to a different neurologist who ordered 2 more MRI’s and I have seven EMG’s. In October I was told that it might be bulbar palsy or myasthenia gravis . I started IVIG’s for the MG which didn’t show improvement in speech along with prednisone. In December, it was established by additional EMG that I had ALS with bulbar palsy. I too wear a mouth guard at night. I am also on oxygen at night. I have to be careful sneezing because I recently bit my tongue very hard to create a gash. I thing the symptom of yawning which I have is due to less oxygen. I have noticed that this has subsided a little (yawning) with the addition of oxygen but sometimes I yawn so hard and big that I worry I will hit the car in front of me when driving. I really appreciate this group and hope if I can help someone with their ALS journey, I will feel blessed.
MemberMay 5, 2022 at 7:43 pm
Marianne I find sticking to soft or pureed food helps, as do smoothies. You will figure out what works for you
MemberMay 5, 2022 at 7:47 pm
I too have bit myself at night and during the day when I sneeze. It’s terrible. I tried a mouth guard but it didn’t work for me with all the extra saliva. I now spend my waking and sleeping with a small Norwex cloth between my teeth to stop me from grinding and also to soak up the saliva. With doing this, I no longer bite myself and all my mouths sores have healed up. I’m terrified of going to the dentist and will likely not go anymore.
MemberMay 6, 2022 at 11:19 am
I also have severe issues with mouth and tooth issues from ALS. I see a hygenist every three months.
I also have had root canals, fillings, and every thing else it seems. I just had a filling on the 27th of April and on May 2nd, The same tooth snapped off at gum line. No idea why and yet to see a dentist.
I did allot of biting inside and lip for 2-3 years and that has now slowed down but still do some times.
My other issue is extreme dry month. I do use biotene and take life savers which I cut in half with knive and small hammer. Put side that has writing on face down. Cut on the smooth side.
To all, we all have so many issues with ALS. I say a prayer for all who have ALS. God Bless
MemberMay 12, 2022 at 4:23 pm
I have also noticed that my teeth are shifting, my mouth shape is changing and I bite inside my cheeks. I have bad dry mouth at night, which makes the bite guard problematic – but excess saliva during the day! Thanks for the life saver tip.
MemberJune 7, 2022 at 3:53 pm
Hi Marianne Opilla,
I have Bullbar also, I had a feeding tube inserted in my stomach last year but did not start using it until April of this year. Since April I have lost my ability to eat solid food. I take my meals from a feeding tube. It helps me to maintain my weight with is most important for you and all ALS people. Another thing that has happened to me after losing my ability to eat is I drool a lot. so much so it was starting to choke me, we have solved that problem, with seasick patches but its have to be a certain kind of patch and you can only get this patch in the States. take care and hope to hear from you
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