Bulbar/ALS symptoms

[Dana Razo]

My husband was just diagnosed with bulbar ALS. Has anyone with this diagnosed ever experienced extreme pain in their head, face, jaw and/or teeth?
Also, he is on Neurontin, Rulitek and Tizanidine, is there other meds out there that seem to help?
I feel helpless and frustrated!
Any information or advice appreciated! Jimmercat any ideas?

 

[Harry77]

Hi Dana;
Sorry to hear about your husband. My wife has had the Bulbar variety of ALS for a couple of years, she has constant jaw tremmors and grinds her teeth at night that sometimes leads to sore jaw mussles and head aches. Check with your neurologist, but she take 10 mg Valium, as she feels necessary and it seems to help (sometimes). Can't help on feedback other meds, we decided not to pursue that approach. Good luck

 

[Jennifer51]

I have had bulbar for a year now. Pains in other parts of the body, but not like you describe. I am beginning to get some pain in my neck now the muscles are getting weaker, and like Harry77 described, I to have jaw jerk and get extreme clamping of my teeth all the time. This often bites the inside of my mouth. Sorry I cant help with the other pains.

 

[brooksea]

Dana,

There are lots of different things that can cause pain in the head, jaw and teeth. One of them is sinus pressure. My husband gets congested easily now and suffers from sinus headaches (he never had sinus probs before ALS). He has had pain in his teeth, which could be attributed to sinuses also, but that pain has apparently gone. He gets cramping that can extend from his neck up into his jaw.

Having said that, your husband could also be suffering from some other condition concurrently with ALS. Has been evaluated for migraines or myofascial pain syndrome? And then again, it could be a tooth ache causing all the trouble!

 

[hopingforcure]

Hi all. All you guys were very correct, jaw jerk, and such sure can cause pain in the teeth, jaw, sinuses, and such. I am a victim of all the above.. Oh and grinding of the teeth, biting the inside of the mouth.. UMN dysfunction can be the cause of all the above.

 

[Dana Razo]

Thank you for the advice, we'll see what the doc says but for now he put him on tylenol #4 and it only touches the pain. He goes in friday to be seen but so far no break in pain. .....

We've only been married for 18 months and it is heartbreaking to see my husband go through this!

Wife of PALS

 

[handinhand]

I have been diagnosed 7 weeks ago with Bulbar ALS. I have pains in my jaw,like spasms. last for a while and I have to streatch my neck to make them go away. I am so scarred each morning when i wake up because my speach is getting worse everyday. So sad.. Wonder what each day will bring? Lin

 

[BethU]

Lin, I'm so sorry you have been diagnosed with bulbar onset ALS. It is a difficult challenge, and it is scary to find your speech worsening. There are a lot of ways to keep communicating, however ... I resisted them at first, but now I'm really glad they're available. My Dynavox allows me to answer and make phone calls, which has helped me feel in control again, and allows me to keep functioning.

This forum has been an enormous help to me, not only with advice and insight, but also to be able to communicate with people.

Hang in there.

 

[handinhand]

Lin, I'm so sorry you have been diagnosed with bulbar onset ALS. It is a difficult challenge, and it is scary to find your speech worsening. There are a lot of ways to keep communicating, however ... I resisted them at first, but now I'm really glad they're available. My Dynavox allows me to answer and make phone calls, which has helped me feel in control again, and allows me to keep functioning.

This forum has been an enormous help to me, not only with advice and insight, but also to be able to communicate with people.

Hang in there.

Beth, Thanks so much .. can you share with me how long you had[to talk] after you first started having trouble with your speech... What started next? I notice that I am bitting the side of my mouth at night. Strange...I can't lie flat on my back. Feels like my throat is closing..strange... Where did it hit you after your mouth and throat? I am just wondering what to expect next? sometimes I wake up in the morning and my right let hurts like heck. just a strong throbbing from my hip to below my knee. I am wondering if it can jump from my face to my legs? Not looking forward to this journey at all.:-feel sad tonight.. sigh! Lin

 

[BethU]

Lin ... I know that feeling of sadness. No matter how many ways we figure out to cope and work around it, there is still the reality of the loss.

I have never been as aware of my speech deterioration as others have been. I didn't know I was slurring my words at first ... people I talked to told me.

My slurred speech appeared in March, 2006, while I was still in the hospital following open heart surgery. The nurses told me the speech problem was because I had been entubated ... often the vocal cords are injured when they shove a tube down your throat ... and that it would go away on its own.

By about October, 2006 ... six months later ... I began having problems not only with speech but with dry mouth and chewing. I could hear that my speech was becoming more impaired, but thought it was due to the dry mouth.

Early in 2007 ... almost a year after the speech problem started ... I began having trouble swallowing liquids ... choking and coughing. I was sent to a speech therapist and neuro. The speech therapist actually helped quite a bit. The vocal exercises "worked" and my speech improved, and she gave me good advice on swallowing, and set up swallowing evaluations for me. But then in June 2007 I had another small surgery, and my speech was wrecked after it. 200% worse than it had been when I started the speech therapy, and it continued to deteriorate from there.

After being diagnosed with stroke, Progressive Supranuclear Palsy and Myasthenia Gravis (by 3 different neuros) I was diagnosed with ALS in May, 2008.

Anyway ... it is now just past three years since my speech began slurring. Up until a couple months ago, I could still make myself understood to many people by spelling out words they couldn't decipher. Don't know why it was easier to say individual letters than words, but it was. And I could "edit" what I wanted to say ... figuring out the easiest words to pronounce, etc. But now, nothing works any more.

One other difficulty you may run into is that your voice may change as well as your speech. Mine became very nasal at times. That has gone away, but my voice is weaker now. I can rarely get it stronger than a murmur.

I know this is a bleak picture, but three years is still a gift. I am still able to get around, drive (although I'm cutting way back on that, just as a precaution and common sense), do small amounts of physical chores, and now with my computer-assisted speech, use the telephone and interact with people.

I got a feeding tube a month or so ago; it is a big help, as I can now eat by mouth only for pleasure. I treat myself with cake and cookies by mouth every day, and do the "nutrition" part ... Ensure ... by tube.

The weakness has progressed beyond bulbar ... my arms and hands are weaker and my balance is very unsteady, so I use a walker a lot at home ... but I feel that I am still functioning and participating in life as much as I was before ALS. I just need a lot of "accessories" to help me out.

I really think I have a great quality of life, despite ALS. For now. But "now" is all we ever get anyway.

 

[Dana Razo]

Cj,
Tomorrow we go to the dentist. The doctor first thought he had a secondary infection in his outter ear and put him on antibiotics and codeine but was not the answer so we are going to see what the dentist knows. Its funny because he hasnt had any dental problems for a very long time. Hopefully we can get to the bottom of this because he he is in so much pain. The doctors also put him on high doses of neurontin. So far it doesnt seem to help him either just very drugged! Frustrated yes but still hopeful.

Ralph's question for all Bulbar patients...... How long after you were diagnosed with ALS did you have to have feeding tubes and respiratory assistance?

 

[BarryG]

Beth, my progression sounds the same as yours. I had a colonoscopy in June of 2007 and about three weeks or a month after my speech started to go funny. Steady as she goes downhill since then, now even my wife can't really understand me most of the time and spelling out big words like yes and no can get tiring. Thank heavens for electronics!

Dana and Ralph, it was about a year and a half after I started to slur words and about a year after my diagnosis that I got my peg tube. Still no need for respiratory assistance.

Barry

 

[brendapals]

I just wanted to chime in...

I've been biting my cheek more and more when I chew lately, and my hubby noticed I've been coughing/choking lot more in the last 2 or so weeks. I guess I blamed the coughing on a nasty little resp infection I had. Don't know for sure.

I have a follow up appt with my pulmo next Mon. His office is close to home. I just wonder if I will be talking to him about future trach needs, or wait and talk to my neuro, 4 hrs away, in May?

In addition to the cheek biting, I've also noticed I'm grinding my teeth. Thougt about asking my dentist to make me a mouth guard or something?

Other than that, it's a wonderful, balmy 34 degrees on April 6!
take care all,
brenda

 

[BethU]

Brenda ... I'd say yes to the teeth guard. Grinding in your sleep can damage your tooth enamel and lead to other problems.

As to decisions on the trache, my pulmo brought it up the first time I saw him after my ALS diagnosed. And he's brought it up every time I've been back. I told him "no trache" and he just stared at me a minute, then went back to his laptop. Never said boo either way. I actually have the feeling he'd like to be the one to pull the plug. :razz: Since then, he's said, "no trache, right?" at each visit, and that's it.

My neuro asked if I had an advance directive, and I told her yes, and that was all she was interested in. Nobody (medical) has offered any advice or discussed options, which is kind of interesting in itself. These are enormous decisions, and they are extremely personal, too, but you'd think the doctors involved would explain a bit, without trying to pressure you one way or another.

Perhaps they feel that's outside their jurisdiction.

 

[rose]

Dana,

I'm regret being so late in responding to your original question. I'm having computer problems at home, and have not been able to post much these last few days.

First, I'm sorry to learn of your husband's diagnosis ... to be married such a short while and to be faced with these challenges! Is your avatar photo from your wedding? I think there are a few other members though, in similar circumstances. However, I don't think with bulbar onset. Marjorie (Marjorie R. Wilcox) I think was not married a very long time before her husband was diagnosed with ALS.

It sounds like the idea your husband's pain being of dental origin would be a starting place. I do not grind my teeth, or have extreme pain in my face, jaw or teeth. I have found that muscle spasms I get in my neck (on the sides) are really pretty painful, they're different than, say, leg cramps. Sometimes there is a pressure sensation in my face, like the sides (around the mouth/jaw area) is being squeezed in a vice. But its pressure, not pain. And my cheeks will hurt like I've been laughing a lot, but, as for actual in the mouth pain. no never.

If your husband is not on a muscle relaxer, this might be a very good place to start to address the pain, if it is muscle spasm related, rather than teeth or sinuses. Many PALS take Baclofin, some take Valium or Flexerille. I believe (but do not know this for certain) that Baclofen is an anti-spasmodic as well as muscle relaxer, and the other two I mentioned only muscle relaxers. Really not sure of this being reliable information . For me, the Baclofen works the best to help with pain from spasms in my neck. Also, if he likes tonic water, the "name brands" have quinine as an ingredient, which helps with cramping. Taking something like the Baclofin, coupled with a mouth guard, hopefully will help him.

Lin, you'd asked about progression, and Dana, about how long before intervention assistance with breathing or eating...

I use a bi-pap at night, my FVC is not bad, its in the low to mid 80%s, the reports grade it at "fair," so the weakness of my soft palate, rather than respiratory muscles, is why (I think) I need it at night.

Unlike most bulbar onset PALS, speech is not as much of a problem for me as my actual voice, which is quite weak now after any use. Whereas with my speech, others tell me I sound like I've had a few drinks as the day wears on, and, drinking does exaggerate the problem to where I notice it more myself, but its still not a major issue.

Swallowing is becoming more of a problem for me, I've had aspiration pneumonia twice, but not been that sick either time, more like a walking pneumonia. Having modified barium swallows are the best way to track progression of swallowing weakness. There is a LOT of information to be gained from one of these tests.

... my neurologist always notes the jaw jerk, but its not something I notice really, for a while, before I knew what was wrong with me, I was biting the insides of my mouth with regularity, it does not seem like it happens that much anymore.

My gag reflex is completely absent, but, from how it has been explained to me, it is only part of several defenses ~ 5(?) others ~ the body has to protect the lungs.

I did not notice any weakness of my limbs until last summer, subjectively, I can't really say what part of me is progressing faster, there is some weakness in both legs and both arms, some loss of dexterity with using my fingers, but I can still feed myself, crochet for short periods of time, (write as illegibly as I ever did LOL) drive a car, but not for long distances.

There really is no way you can know what the progression will be. It really does help to learn how others have experienced it, but there isn't a "norm" . Having this forum to come to has been such an asset to me, as it has kept me from feeling isolated. Even though I may have an uncommon presentation of an uncommon onset of an uncommon/rare disease, I've never felt alone dealing with it, and its because of being able to come here.

Hope this helps to answer your questions, and I will be around more after my computer problems get resolved.