Hi to the world. Just found this web site and I am relieved to see that I am not a complete nut and there are other people out there zapped from the big C cures. I am a genuine Irish "Paddy" , 18 months postradical neck surgery, tonsilectomy, chemo (cysplatin) and 38 course radiation. Tumor in the tonsil and 1 stage III and 2 stage II lymph nodes. Doing pretty well with one exception.

"Please tell me that there is somebody out there with a remedy for lack of sleep due to dry mouth."

On the cure side "Arthur Guinness" is a pretty good remedy for weight loss.

For now " Sleepless in Galway"

Hi there sleepless in Gallway. Well John enjoy the stars if they ever come out in Ireland because I have dry mouth also. I take the dog out for his ablutions to get me tired again. About every hour or so I have to get up and pour water into my mouth and blow my cheeks off my teeth and pry my tongue off the roof of my mouth. Isn't it a fun game to play. I guess you'r on the liquid diet too? I mix an ounce or so of Jamesons in with my mega shakes helps convince me to keep drinking the high protein stuff. Guinness is good for anything so keep up the good work, just add uncle Jamie or Bushmills as desert and all will be well. Everyone says alcohol is evil and adds to dry mouth. Horse puckies, you can't get any dryer than the Sahara.
I was born in England to Irish parents who's family emigrated there from Ballaghaderreen, Co Roscommon,formerly county Mayo Ireland. SO we are southern catholic folk (ha ha) and if anyone knows about drink it's them guys. I've long since moved to Canada and have a wonderfull family and my strength comes from my wife who supports me and pushes me to stay alive, shes a wonderfull colleen. Our family name is Towey and their having a reunion in Ireland this August, I can't make it 'cause of this cancer radiation teatment recovery still hanging on
These cold winter nights in Ontario make for good star gazing. Start with the the plough (big dipper) and from there find the North star. It'll take your mind off a bunch of stuff and you don't need any equipment. Venus is the bright star in the North East just after sunset, she's pretty bright. Have fun and sleep in shifts. Use any kind of enzyme charged mouth washes for the dry mouth they work for a few minutes but untill they invent pumpable artificial spit enjoy the stars and Jamies. Dan

Paddy
You might want to dry having a humidifier in your bedroom, every little bit of moisture helps. Are you rinsing with Biotene or whatever you can get there..ask the chemist he should be able to help you.
My hubby is a scouser, you know, an Irishman that can swim...lol.
Best of luck to you.
Marica

John,

My mother's name was O'Gorman and my father's was Hastings. A Irish and English marriage filled with constant fireworks and excitement to say the least. Both were so stubborn it's a wonder I turned out so perfect. LOL

I swril Biotene or the other one before I go to bed and whenever the cats wake me and I don't have any problems, but each of us is different.

May the Luck of the Irish be with you.

I did not have radiation, but I do have a dry mouth problem related to my surgery. I keep a mister bottle, used to mist plants, beside my bed. I wake numerous times a night with my tongue stuck to the roof of my mouth, and my lips stuck to my teeth. I mist all around,,,,down my throat, beside my cheeks....along my front teeth....and I end up with a little drink, without having to tip a cup or bottle, and without having to worry about spilling. I hate waking up, but I am thankful to have discovered my mister bottle. I can not get much relief from just the humidifier.

I also put a little vaseline on my front teeth, and it helps keep them from sticking to my dry lips.

What is Biotene? How is it used, and how does it work, and where does one get it...ie. prescrip. or OTC?

John,

Beautiful area there! Spent a couple of days there on the way to Connemara.

Sleeping with a humidifier is about the best thing to try. Also, Biotene has an oral cream type product for dry mouth and it helps to use this for coating your mouth before sleep. I keep it at bedside at night in the event of waking.

Tell us more of the details in your case.

Bill D.

Colleen -- Biotene makes an entire product line (mouthwash, toothpaste, oral spray, gel, and gum) specifically designed for people with dry mouth problems. I've found them to be extremely helpful, as have many others here. They don't require a prescription, and most of the major drug stores have them. I've also found them at Costco -- not on the regular, bulk shelves but behind the pharmacy counter. I think they may also be available at Wal-Mart.

John C. -- in addition to some of the other suggestions above, if you haven't tried any of the medications made to increase saliva production, you might want to ask about them. I've been using Salagen (oral pilocarpine) for years, and it has definitely made a difference for me, although I know the results can vary from person to person. Another medication for this purpose is Evoxac (I don't know if there's a generic name), which I haven't tried, but quite a few people here have noticed real improvement with it.

Cathy

Hi there Sleepless in Galway - My son also experienced sleepless nites because of dry mouth and tried all sorts of things but for him what really worked was "Stoppers 4Dry Mouth" - available over the counter at drugstores like Walgreens. The first time he tried it he was able to sleep through the night. He also uses a warm air humidifier. Sometimes you have to try different things before finding what works for you.

Just a note re "stoppers" - they soon will be off the shelves. Their product infringes patents owned by Biotene, and the resulting lawsuit is likely going to take the product away. But since the active ingredients in it and in the Biotene products are so similar, its removal from the marketplace will not leave us without products that work well.

I've had a prescription filled for Evoxac since June of 06 but haven't dared take any of it! Can you believe that? All I've been through and for some reason this medication scares me, not sure why other then I've heard it may make you vomit and the thought of doing that on my damaged throat is scary. Anyone else taking it?

Hi Guys, thanks for all your comments and ideas. There seems to be a number of products out there that need to be investigated. Biotene gel, Mouth Kote and other mouth gels are available here but, in my case the effects last no more that 30mins.
Are there other Biotene products other than the gel, toothpaste, and chewing gum. Is the drug option, i.e. Salogen good. Are there side effects?.
A number of people have mentioned humidifiers. The west of Ireland is one big humidifier during the winter (might be an idea for a visit). A request to purchase one would certainly result in being taken away by the men in white coats!!!. I will check into it though.
I am working with a herbalogist over the last few weeks and I have had my first break trough in that I have had a number of 2-3hour stretches using a mixture of Orabase with a herbal concoction. I will post the details of this later. It might be useful for others considering this route.
On the great news side of things - I had a PET scan recently and 18months post the first op I have been given a clean bill of health. Early detection, early intervention, a positive outlook and all the help I can get from ye guys.
Thanks again.

Looking at the stars in Galway

Hello John,

There is a Biotene mouthwash also that I use and it helps. My doctor prescribes restoril (aka temazepam) for sleepimg it knocks me right out with no after effects, ay least not for me. And it is relatively inexpensive compared to other sleep meds on the US matket. Even tho I'm not Irish, I have always had an affinity for the Irish and the lovely Emerald Isle which I have only visited through Rick Steves travelogues. Good lick to you.

Jim Haucke
SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies

Your inside humidity might be very dry however if you use the furnace a lot as it will strip the moisture right out of the air. Conversely the same holds true for AC for those of you in hot climates.

I just kept a water bottle on hand all of the time and woke up and took swishes as needed.

Hey all:

I'm new to the group and am wondering the cause for dry mouth. I am having extreme thirst/dry mouth lately but really haven't had it much in the past. I know I'm missing a few salivary glands - maybe it's finally catching up to me? I'm not currently in treatment - only had surgery (not chemo or radiation) quite a long time ago. Any help would be appreciated.

Thanks.
Cathy V.

Hi Cathy,

Dry mouth is frequently a post radiation problem. I woudn't think that you would be "catching up" now.

It (radiation) can exceed the survival thresholds for salivary glands. The dry mouth for me didn't become severe until towards the end of radiation, and it's stayed pretty much unchanged since finishing treatment.

It may be worthwhile having a checkup...excessive thirst can be a symptom of something else going on physically.
Wayne

Robin had a saliva gland removed at his surgery,thatplus the radio treatment makes for a very dry mouth by the day.I went on line to express chemist and ordered the biotene oralbalance dry mouth system which contains several products and the oral balance dry mouth moisturising liquid.It arrived within 24 hours and Rob finds the mouth wash brilliant and uses it several times a day.

Cathy,

It helps us a lot when you post your particulars below your signature so we can answer your questions better.

The rad, which you didn't have, damages the sal glands so they don't produce adequate saliva thereby causing dry mouth. We are told generally that with IMRT we should recover our saliva function over time but it, of course, would depend on where we were radiated and how much damage was done. Having 1 or more glands removed would achieve the same result but I would think recovery would be impossible but I'm not a doctor. Why the delayed reaction? Haven't a clue, but IMO anything that delays the onset on dry mouth is a good thing. Talk to your surgeon. I'm sure you will get an answer. Whether it's one you can understand is another topic. Let us know what you are told..perhaps under your own post.

Cathy,
there are many reasons for people to have dry mouth; medications and diet top the list.

Examine all of the meds labeling for clues such as warnings, precautions and contraindications to see if that is a factor.

Be particulary aware of your salt intake. Pizza and soups, for example, tend to be very high in sodium.

Another factor could be if you breath through your mouth at night while sleeping.

Low humidity and exertion will also dry you out.

Like David mentioned I had IMRT and it took 18 months for salivary function to return. The right parotid, where the tumor was radiated to oblivion, does not function so my situation is not unlike yours that I have reduced salivary function. If I am watchful and aware about it I can lick postage stamps and envelopes.

I have used a humidifier for over 4 years now and it helps a little. Mine runs 24/7.

Sleeping on your side reduces dry mouth because when you sleep on your back your mouth falls open and makes dry mouth worse. Sleeping on your back increases mouth breathing. I keep a spray bottle of Oasis by Sensodyne, oral demulcent moisturizing mouth spray for dry mouth, by my bed and use it during the night. Also I rinse my mouth many times a day with water with a little baking soda in it. Keeps the mouth clean. Dry mouth can lead to infections such as candida (fungal infection.)

Barbara in Houston, SSC upper lip, perineural invasion