Temporary Dry Mouth (non-Sjogren's patient) brings empathy

[mary kenny badami]

I'm not a Sjogren's patient, just a post-Lasik dry eyes person. However, because of a non-eye-related condition, I've been taking a new prescription drug for the last two weeks. One of its well-documented side-effects is "dry mouth." Which has hit me with a vengeance.

EGAD! I've been sucking on hard candies, swilling water (carrying a bottle everywhere I go, even room-to-room in the house), and licking my lips to the point of distraction. I have no history of being a chronic mouth-breather at night, but I've been waking up several times each night with colossal cotton-mouth.

I'm not likely to need to take this med for more than another two weeks, so I don't intend to add any other meds to the mix (although I have searched for links to Evoxac and Salagen, just in case ). Right now I intend to "tough it out." My sole purpose in writing is to say that having experienced this symptom (temporarily -- I hope), has brought great appreciation of what many of you with Sjogren's are experiencing every day.

[Silverlady]

So sorry

I'm so sorry you are suffering like this. And I'm so glad you don't have to take the medicine for very long.

The experiences are something that we just learn to live with. Not pleasant at all. I literally live for the Salagen and I've been known to make an hours drive because I've forgotten to bring the Salagen with me and it's time for the next dose.

I never realized how important spit is to your body.

Billye

[liz56]

Mary,

I'm sorry that you are enduring that discomfort right now!

You raise such a good point about how this discussion board allows us to appreciate what other people are suffering through, even if we do not have their exact problems or symptoms.

--Liz

[Lucy]

Sorry you're in the company, Mary, even though it's only temporary. My dry mouth is just as you describe. Since you've known me for so long, you may (or may not) realize that the dry mouth came much later than the dry eyes.

I hate Salagen (generic) because it makes me hot and can cause nausea. I only use it rarely. (Wondering now if namebrand would be better.) I already get hot because of too many "things" and have to eliminate those I can. I chew sugarless gum all the time. The other thing that goes dry is the throat. Sometimes you try to swallow and your esophagus just freezes in "hold" mode.

[mary kenny badami]

“. . . Don’t it always seem to go
That you don’t know what you’ve got
Till its gone . . . “
(Joni Mitchell, "Big Yellow Taxi")

If I had the talent, I would wrote an “Ode to Spit.” 
Whew! As of this past weekend I came off the medicine whose side-effect was laconically under-described in the patient information booklet as “dry mouth.” I’m no longer carrying water bottles and hard candy wherever I go. My mouth is appropriately damp (not too little, not too much; like Goldilocks -- "just right"); I can chew and swallow and enjoy the taste of my food again, and I'm no longer waking up in the middle of the night with a Sahara-mouth.

I am really disappointed with the numerous online information sites which advised that, once the ability to produce saliva has been impaired, drinking water and sucking on hard candy will make person feel better. What utterly minimal advice for someone with a serious problem!

Among the lessons which I’ve learned from this mercifully temporary experience, including similarities to my dry eye problems ("the patient" being me/us):
(a) “dry mouth”/”dry eye” doesn’t sound all that serious to most non-patients who don’t experience them . . . but they are !
(b) even when pain from the problem is not acute, the fact that a bodily function has been disturbed creates a distraction which interferes with the patient’s everyday well-being.
(c) superficial advice (e.g., “add water”/”add water”) doesn’t heal the underlying problem, and therefore doesn't solve the problem for the patient who is looking for fundamental relief.
(d) as irritating as it may be to hear such likely-useless advice, most advisers are well-meaning people who haven't experienced the problem, who honestly wish the patient well, and who believe that a solution must be available.
(e) the humblest of bodily functions serve valuable purposes!

[Silverlady]

Wow!!

Bravo!!! Bravo!!! Well said and thank you.

Billye