Extreme dry mouth?

[azgirl]

I am much like your husband and had panic attacks when they put the mask on me. I alternate between the mask that just goes Over nose and nasal pillows. Chinstrap goes over that. Finally, I take medical marijuana an hour before putting on the mask, and no more panic attacks, and it puts me right to sleep. I sleep soundly from 10 PM until 5 AM.

 

[carex]

I'm Bulbar, not quite a year since dx. The first few months, during the night, I would get extremely dry. Bioteen was the answer. As things progressed, for the worse, dryness became a non-issue. Excessive Silvia and eventually mucus flow became the bane of my existence. Meds, patches and Botox (still in early evaluation) provided some relief. A desirable yet temporary 5 or 6 hours period of bearable dryness. However, a heavy mucus flow has since become a significant problem. Compared to the afore mentioned relief. It seems I always had a pool of fluids (mostly mucus) in my mouth.

The nebulizer was introduced with Ipratropium Bromide... 'seemed' to help, but not always consistently. Currently the Nebulizer, Scopolamine patches, a mucus thinner, Botox (1st round wearing off early as expected/predicted) and a silva reducer generate the much desired current dryness. That said... I'll take the dryness over the constant fluids any day of the week.

I'll be seeing my Dr. in a few weeks and hopefully we can come up with a promising mucus/Silvia remedy based on current experiences. Additionally, I get a second round of Botox also. This seems to be a constant state of experimentation.

 

[Buckhorn]

Carex - sorry you are dealing with that. I imagine the issue of too much saliva, not being able to swallow, excess mucous flow, etc. are a much worse problem to deal with! There are so many varying symptoms and problems with this damn disease!

Dave used the Xylimelts today and said they do provide longer relief from dryness. He is sleeping soundly for the 2nd night in a row with the nasal pillow mask/interface on - yea!! In a few days I will get him to try the chin strap.

AZgirl, are you using a rub in oil based medical marijuana? Medical marijuana was recently approved by our state legislature, but not put into action yet, as far as I know........ Sounds like that would be a great way for my PALS to relax and fall asleep.

 

[azgirl]

I've tried different forms but found what works best for me is the chocolate bar. I buy the 200 mg bar and cut it into 10 pieces and take one each night. It does dry up the mouth some, but I am still unable to wear the mask without it. Plus it gives me solid sleep.

 

[Buckhorn]

WoW - azgirl! I didn't even know it came in a chocolate bar form!! I haven't researched it much yet because I'm afraid it will be a while until all the details are worked out in PA ("On May 17, Pennsylvania’s Medical Marijuana Act, Act 16, went into effect. The Department of Health has until November 17 to start publishing temporary regulations".) If it comes in a chocolate bar, maybe my PALS will allow me a nibble - HaHa!! :lol:

 

[Grace89]

I am dealing with this also. It is worse at night. The dryness will be so bad that I cannot swallow at all. I wake up and have to drink water to be able to swallow. The dryness is not just in my mouth but far down in my throat also. I also struggle with my food and eating something that is dry. This is really affecting using my trilogy is well. I have had to adjust the humidifier on the trilogy many times to accommodate the dryness. I have not found a Setting that works for me yet.
I am currently taking baclofen and gabapentin. I can't say that the drymess is a side effect of either as it did not start when I started taking the medicines. I didn't notice the dryness until I started using the trilogy and now it is something that I have whether I'm on the trilogy or not.