I am so depressed this evening. I have had the pleasure of staying home with our children for the past 19 years. As the kids are growing and money is tighter my husband could use a little help. So I have applied several places and 'nothing.' (I have tried to be selective because I have such an anxiety about my chronic cough due to dry mouth.) Well, because I wasn't getting any where I took a job in a deli thinking it is air conditioned maybe this will help me...wrong. Today was my 2nd day and I coughed so many times because of the dry mouth. I took an Evoxac before I went and ended up taking another 4 hrs later, I had a huge water (which I kept sipping), 4 pieces of gum, a throat losenge and my mouth still felt like cotten. I had a terrible coughing spell and tried to recover while waiting on a customer. I am so depressed over this. I really am trying. I don't want to wait until a customer complains about the 'cougher'. It is just too embarrassing. I just want to sit and cry. Tomorrow I am scheduled to work another 8 hours. I don't know how I am going to do it. How does everyone else manage the dry mouth thing and employment?
To be honest, NO ONE understands, not my friends, not my husband, no one. Unless you have sjogrens and constant cotten mouth. They just don't get it. I'm at my wits end!
Also, I am curious whether people that have been on Evoxac for awhile take more than the recommended 3 x day? And I have asked my doctor about long term effects of Evoxac but have not been given a straight answer. Does anyone know?
Karen,
My rheumy told me to absolutely not take Evoxac more than 3 times per day. I often find myself miserably watching the clock for my next dosage time.
Some things you might try:
mouth sprays like Biotene or Oasis
Oramoist lozenges that stick to the roof of your mouth
candy or gum
A little blob of coconut oil to coat inside your mouth and throat
Some of us use Flonase or another steroid nasal spray to stop the nasal drip. That could be the cause of some of your coughing.
I hope your job works out for you. Best wishes!
Cheryl
Dearest Karen in Ohio,
For what it's worth, I know EXACTLY how you feel. I have a corporate job which requires lots of conference calls, meetings and air travel. You can imagine the anxiety getting on a plane and leaving the "comforts of home" and all my stuff. I carry water, gum, NuMoisyn lozenges, salagen, tissues, anxiety meds and then hope I don't cough, choke and panic. Meetings are embarrassing for all the reasons you mentioned. People probably assume I am contagious.
I wish I could hide at home, but my family requires my income.
As for family understanding - I have explained, given pamphlets, printed articles. They still ask "what's wrong?" when I am struggling and so depressed. I also take pain meds as I am in near constant body pain.
God bless you - you are not alone. I'll say a prayer for you and wish you improved status so you can work.
I HAVE found that many who seem fine are hiding an ailment, a burden, a heavy heart, etc.
Hugs,
KellyG
I dont have experience with Evoxac but I totally understand the feelings you are talking about.
Please feel free to come her and vent any time. We know what you mean, how you feel and what you are dealing with.
Cheryl, Kelly, Piebird,
Thank you all for your suggestions! I didn't even think about taking my biotene mouth spray. I'll try that today to see if it helps. I don't wish this (sjogrens) on anyone but it sure is nice to know there a people out there that understand what I am going through. Thank you for your encouragement. Today is another day and I'll go out once again and try my best, that's all I can do. Bless you all.
Karen
Karen in Ohio, Biotene also makes a gel like substance that comes in a tube like a mini toothpaste. With my job I also had to talk for a living. My mouth was so dry that my teeth were like sandpaper cutting my tounge. Then that made it even harder.
I use Oasis mouthwash, and spray and Biotene toothpaste and the gel. The combination of those has made it so much easier. When I would start the coughing I would squirt a little of the gel in my mouth and let it run into the throat area. It would coat it and give me relief.
And, I never hesitated to tell my clients, Hey, I get this dry cough sometimes because my body does not make enough moisture, I am not contagious and I apologize in advance if I start up. So, let's get started.. Get it out there and move forward...it really works and puts you at ease. And that actually helps relax those muscles and the stress.
Good Luck and I will be saying prayer that you get some relief. You too KellyG!
~sass~
When sjogrens came on suddenly, I had a cough that would not stop. In fact, when I was on disability, a concern was returning to work with it. I am frequently on the phone with internal clients and outside vendors. I started sipping a bit of coffee throughout the day. It could be coincidental, but the coughing greatly abated.
I attributed the coughing to no protective mucus. Mucus has incredily healing components. I have virtually no post nasal drip from the sinuses and am very dry. Hiccups also occur several times a day. I suspect the vagus nerve gets overstimulated because there is no protective mucus covering. This all started immediately after Sjogrens hit and I went dry.
The only gum I have found that helps me is Wrigleys' Extra Polar Ice (Blue Box) I can even tear the gum strips in half. My mouth is very dry and this is soothing and refreshing. :)
I agree with Sass. I worked in a call center. Before I knew I had Sjogrens, I just thought everyone needed bottles of water to talk to people on the phone. It got to where I guess someone at the office complained because they saw me drinking and putting my phone on silent to sip some water while the patient was talking (I could hear them just not the other way around) so there was a memo that we were not to have any drinks at our desk. Well, I told them there was no way I could do that. I told them I was happy to bring in a note from my doctor. Sometimes the patients even noticed I sounded funny but I just politely explained I had a health condition that causes dry mouth. They seemed cool with it. But I use the Biotene stuff, Salagen and lots of water on hand to sip on. I know my Ent said to keep lemon drops on hand but to be honest, that made things worse. I hope you get some relief. I feel for you getting back into the work force. I'm headed back to the grind soon myself. Hugs.
G'day KareninOhio, sorry you are having such a time of it. I do have one suggestion to add to the others you have received.
First off part of the problem could be attributed to the ventilation in the deli. Also you have to use your voice more often, so what little moisture is in your mouth quickly evaporates.
Try using a paper dust mask over your mouth and nose. This will help keep your mouth moist and should help lessen your cough. Also you will not need to cover your mouth every time you cough. I am sure your customers will appreciate that.
Oops, I just had another thought. You may also be having a problem with dry sinuses. Try using a saline nasal spray. I use one several times a day with good results.
Anyway I hope you find what will work for you.
Seeker.
You guys are just wonderful. I am writing this with tears in my eyes and a thankful heart that there are people out there that care enough to give me all of their hints and suggestions.
KellyG, I was just telling my husband today that there is someone out there that has the same fears and insecurities (for lack of a better word) that I do. When you described your plane trips it sounded so much like the way I feel about sitting through a church service (and praying I won't get dry and cough and disturb people, always with water in hand) or many other situations I find myself in (like going to calling hours at a funeral home and having the scent from the flowers set me off.)
I will be praying for all of you. I pray that we find answers to our problems and they find a cure for this!
One day I googled "heal sjogrens" and a youtube from andrea Moritz came up and talked about a liver flush. Have any of you ever tried this or heard/thought about it? I have thought about it but it is a big commitment and he says that to truly cleanse the live, it would take more than one cleanse. (the neat thing is it does not take alot of expensive ingredients so it makes me think he is not trying to'sell' us anything. Anyway, I was just wondering?
Blessings to you all, Karen
Karen,
I can really relate to the dry mouth and cough. I hope the suggestions help, and just wanted to let you know many of us deal with this, so you are not alone. The Biotene spray has helped me, and others have given some great recommendations. I still am a bit nervous if I need to be somewhere quiet afraid I'll have a coughing fit.
AAACGRL,
My last job was also in a call center, when my symptoms started. I couldn't figure out what was happening to my voice and throat; I coughed and choked on my words. Thank goodness we were allowed drinks at our desk. It got to the point I had a bottle of water and cup of coffee constantly and that still didn't do the trick.
I certainly hope you find some help with the suggestions, Karen. By the way, I hate to be a downer about the youtube "heal Sjogren's" you found, but it seems that most of those things are in that class of "if it seems to be too good to be true, it probably is" kind of thing. I would just caution that anything we might want to try should be talked about with our doctors to get their take on it.
Hoping your day goes a bit better for you. ;)
Melinda
Ahhh.. so this is why I have the hiccups all the time? Makes sense I guess...
All great ideas! Thank God someone understands us. I used to have to give talks, do award ceremonies and was on the phone nearly all day, every day. I always attributed my dryness to nerves, talking to 2000 people and being the sole speaker, etc... now I understand. Wish I did then. Also not sure if is really true but my doc says coffee actually dries your mount more than wets it... didn't change my coffee drinking habits, gotta have my coffee but maybe should try to find something different for work.
I always just kept water handy when I gave speeches. Take a sip, continue. No biggie. No apology. Just drink.
Good for asking for a reasonable accommodation, AAACGRL! You didn't use those words, but what a petty, childish dictate for no liquids at the call station. You can be sure that they went back through your recordings with a fine tooth comb looking for an excuse to fire you, and couldn't find any way it was negatively affecting your work.
I would be very, very concerned about doing a "liver flush." The liver is an extremely complex organ, which, as Dr. House said, "It is called a liver, because you can't live without it." (I'm gonna miss that man! Lousy practice of medicine, but great quotes!) Screw it up, and you are.... I notice that they also say, it takes more than one "Flush". Sure. And as long as you still have Sjogren's, the fault is yours. You didn't do it perfectly. You just need one more, and sure, we'll charge your credit card. Not cured yet? Here, try another. The Xth time is the charm...
The liver is the organ that deals with toxins, among many other jobs. It turns them into other things that the body can then excrete via the usual methods. It also processes the medicines we take.
I would just say no, but if you are still interested, get a complete list of the ingredients and the process and run it by your doctor.
Sharon
slccom,
I fear you may be exactly right about the "liver flush guy." It reminds me of a friend of mine with rather severe Crohn's, whose meds were no longer working for her. She went to consultations with a woman who was supposedly well-known for a "bean diet" to help IBS issues. Beans, of all things!
I kept quiet about my concerns for her while she ate this many beans, more beans, cut out so many things out of her diet, etc. for months. Finally, it came down to my friend telling the "expert" that it wasn't working for her. And, you guessed it- the woman told her it was because she wasn't disciplined enough! :P
Please tell me that your friend finally saw the light!
Sharon
Dear Karen, Even with all the suggestions on oral meds etc, working in an enviroment with AC all day will play havoc with your mouth and Eyes, in fact all the airways too. Look for another job if possible, open air markets. swimming baths , etc' I realise that will be difficult, but that would be your best chance of keeping moisture around you. I hate shopping malls , department stores, any where that has windows wide open, in fact I'm becoming a virtual recluse! There is no pleasure in shopping , eating out, pubs, etc, Hate to sound so depressing, but this complaint is exactly that, and it is up to us to find the most comfortabe place to spend our working time. Hope you manage to overcome all the obstacles, and keep us informed how your doing, Regards Dolly x
I'm amazed at the sense of humor some of you have in the face of this :) And I noticed one of you referred to 'your coughing fit'. That is how I refer to it, as well. Just curious whether fragrances can set you off on a coughing fit, too? Chemicals, perfumes, etc. really bother me. they never used to.
I worked today and had to go inside the refrigeration cooler and when I came out the change in temperature set me off on a coughing fit :-\ So far the boss has been very accommodating and lets me have water, gum, anything that will help (around the corner out of site.) This is a blessing.
I've found my dry cough is often because I have thicker mucus in my lungs that won't come up. Even if I dont "feel" it.
I using Mucinex regularily for several days when I develop the dry cough and it would loosen things up enough to bring up some mucus plugs for a few days. Once I wasn't bringing anything more up I stop taking it and don't have the cough.
When it starts up again, I do the Mucinex again. It has worked almost every time.
Be sure you drink extra water with the mucinex to help it work.
Nancy
I don't have anything else to add. Just know that you are not alone. *hug*
Dee
Hi KareninOhio :)
Chemicals and perfumes really bother me too now in a way they never used to. One of the girls at work used some hairspray and I had to go to another room. I could hardly bfreathe. I wasn't even in the room when she sprayed it - it was the residue on her hair. Nearly anything out of a spray can brings on a coughing fit now. I hate dept. stores with all the cosmetics counters near the front doors. I have to take a deep breath before entering and hold my breath until I'm past them.
Take care - Scottie :)
Karen,
That was me with "the coughing fit" :) Might have been something like my mother would have said, but can't describe it any other way. It starts with that little nagging tickle, then gets worse...the more you try not to cough it just breaks out into a full-blown "hack, hack, hack! " Sounds like you're choking which makes people stare and wonder if you have something contagious. We need a sense of humor in all this. :)
I hope you find some helpful ways to relieve your symptoms at work.
Sharon,
Yes, my friend "saw the light" with her bean specialist. When the woman told her she wasn't disciplined enough she let her know she would not be back, she had complied with everything asked, and she felt taken advantage of with the amount she'd paid for the consultations.
I was so surprised my friend did this at all; she's an intelligent woman, but I can understand the feeling of grabbing onto to "something" when nothing else seems to work. Fortunately, she's now working with a new gastro who is trying different meds to help.
Meld256:
You described the cough 'to the T." My friends try to understand and mean well but sometimes I really think that they think it is in my head, that I can control it or something. Before I was diagnosed it seemed that many Sundays right after the singing was over and the minister would step to the podium, I would start coughing and have to slip out of church service. My friend observed this one day and made kind of a comment like "Isn't it a coincidence that you can usually sit through the singing but leave when the minister starts." I was really hurt by the comment, like I could control the situation.
Later when I was positive for Sjogrens it made so much sense to me that my mouth was going dry from singing and it would make me cough. I shared with my friend that her comment bothered me, that of course I had no control over the cough. She did not realize what she was saying. Thankfully, she is a good friend and was tough enough to take itl
Now it seems more and more that the dry mouth makes me cough while eating. I drink alot of water with meals but I am getting more and more self conscious and have had to excuse myself while eating out a few times and go outside to recover :(
Karen,
You're right that I think many times others think we can should be able to control thisbecause they can. Just like we may have used to ourselves; a little mint, etc. Just not that easy anymore.
I'm glad you were able to talk honestly with your friend. I've actually learned a valuable lesson myself these past few years being ill with this; one that I really needed to learn. Not to be so judgemental about others. We just never know what issues another person might be dealing with. Maybe you were able to enlighten your friend just a bit. ;)
You may need to be more careful while eating, too. So annoying...anything dry or spicy sets me off. Sometimes I forget.
Talk about trying to keep humor. A while back my husband had BBQ potato chips he got for his work lunch and I sampled a few late at night because I hadn't had any in forever. Tasted so good, but even though I drank something with it, the first couple of chips seemed to stick in my throat and I started hacking...and hacking. He's sound asleep, no one else in the house, and I started thinking "Ok, this will be my demise. I'm going to choke to death on a BBQ chip! How will they write that in the obit??" :D ;)
Hope you have a good day :)
Since the sicca really hit, when I start to cry I sneeze now!
it is the small things in life that make me get all bent out of shape >:( ~ like enjoying some potato chips and a soda pop! When I was a kid my grandma made us feel real special when we visited her. We would all sit around the kitchen table talking for hours, enjoying chips/cookies and a Pepsi. (I can relate to Meld256 story), cant eat just one chip......as the commercial use to say ,well I cant get one down without the feeling of choking, now any soda feels like it is ripping my mouth up, I don't eat anything anymore that there is not a large drink close by. Hamburgers were the first thing I noticed that I could not get down. My doctor said that ground beef was a common food to have problems with.
I chew gum all the time but found I had to change flavors as that to tears up the inside of my mouth. trident spearmint has been working for me right now. I know without saliva your gum don't last very long. I use a LOT of lip balm, I dont know how many times I have been chewing gum and think what is on my lips? I guess the lip balm and gum sometimes don't like each other. What a mess that is.
Haven't been able to sing in Church for a long while now~ but I CAN HUM with the best of them!! ;D
Karen I hope you find something that helps you~ but in the mean time lets toast with a glass of water that we found this website~ the people on here are AWESOME!
(((HUGS))) Since you just started this job, I would expect that you're also dealing with exhaustion from the hours at work, standing on your feet and learning the work routine. I can feel your misery. Hopefully with time you'll adjust to that part of the job. I can see though that coughing like that, when serving food to a customer is a real problem - I hope your bosses and customers are considerate = most people are when it's explained that you are not infectious, just part of your autoimmune disease.
Lately I'm finding just keeping gum in my mouth at all times helps. I hate that I'm always chewing gum but it does keep a certain level of moisture there so that when I speak I can move my mouth normally and not find my teeth or tongue sticking. I keep a pack in my pocket with me at all times. I'm having good luck with the Extra brand Sweet Watermelon - this is the only flavor I can tolerate.
I tried Biotene spray and gel and they work great for 10 seconds, then you swallow and they are gone and so is the moisture.
I also tried two brands of lozenges that stick to the roof of your mouth. I wrote reviews on these products awhile back. Didn't like them although I found one was better than the other. They are worth trying.
As for those coughing fits - OMG they are so embarrassing. I always turned beet red and stayed red for hours afterwards. However I managed to stop having them when I switched to a new diet - Dr. John McDougall's diet - I haven't had any for 4 years now. You might want to consider checking into your diet to see if some foods encourage coughing fits. Dairy products are a common problem. I'm not sure why mine stopped but I don't miss them at all and I hope they never come back. I used to get them sipping water or trying to swallow saliva. I did find sucking on a really strong peppermint candy helped because the strong mint flavor would make saliva run quickly. I also tried to visualize myself as calm, trying to mentally relax myself and my muscles - it sounds New Age type of stuff but it did help.
I would not do anything that had no merit such as a liver cleanse - our poor livers take a real beating with all the medication we take as well as health issues we suffer from. There is no legitimate medical research showing that liver cleanses do anything except make money for people selling them. There can be real harm done.
do you take blood pressure meds? I cant remember those that causes sever coughing but mine had to be changed a couple of years ago due to severe coughing.
sometimes just keeping something in your mouth will help such as gum, mints, sprays
You guys are so great! Great suggestions and encouragement I truly appreciate.
Skylar, about the no coughing fits for the past four years. I am very interested in getting rid of these. Did you switch to vegetarian? I googled the doctor you suggested and it looked like that's what he suggests. I'm tellin' ya if it would get rid of the cough, I'm game. I am so tired of it. And I know what you mean about the biotene mouth spray, it is just a quick fix and doesn't seem to last long. Gum has helped me the most. I chew Trident Spearmint.
And I am not on blood pressure medicine. I do take Nexium (but have tried not to take it much recently because of the long-term side affects). I've been trying to take a couple tablespoons of aloe vera gel in my tea during the day and it has helped the hearburn and Gerd tremedously.
So far I've been taking the job 'one day at a time.' I haven't really coughed too much with a customer but I coughed again after being in the cooler for awhile and then coming out. It's funny but the cough doesn't happen right after I come out of the cooler but about 5-10 min later...it's weird, I know. And I have been trying to do as was suggested about relaxing and trying not to get nerved up over it (which only compounds matters and makes it worse!) I even treated myself to an hour massage Friday, and wow was that wonderful :)
Keeping my chin up here in Ohio and I'm so thankful I have my peeps to talk to now ;)