Taste Loss please help

[cccourt1942]

I try to exercise and I have no moistture in my throat or lungs it feels sufficating.  I wake up feeling like I am choking and sufficating. 

Kimberly-I exercise (minimally--but I do exercise) and the hardest part of it is not moving my limbs, it's breathing with a closed mouth.  I have put off exercise for days at a time as I dread it so much.  Doing Pilates I can't get the rhythm and tightening my core synced with my inhale/exhale.  I have exercised with such exaggerated inhale----------------exhale for decades.  It's hard.  The only thing harder is moving without exercise.  I relish getting on the treadmill because it is a reminder I can still walk.  But walking without hearty inhale/exhale is hard.  I am taking a week long trip soon and must keep moving  for THAT.

The only difference in me and you is I was lucky enough to find the right medication and accoutrements for my conditions easily.  I was miserable for well over 20 years....and lived from day to day with salivary gland problems constantly for 6 years.  I was convinced I was old.  Breathing, walking, working part time, and talking were so exhausting I barely made it from day to day much less week to week.  I felt like you.  I thought "if this is old age, they can have it."  And then I looked at my grandchildren and gutted up. 

There is barely a place on my body which is not sensitive to touch or sometimes AIR bothers me.  I am not talking about hurting...I am saying sensitive.  An irritation.  A bother.  My toenails hurt.  I know..that is impossible.  But they do.  My wrists ache and my eyes burn.  My head itches and my legs burn.  I live alone...and it is hard.  I dread going to the grocery store because nothing looks good to eat. 

I do have saliva now.  I have it almost continuously all day/night now.  My aching is handled by Celebrex.  I have minor headaches for the first time in years...but manageable.  Everyone on this site is miserable in one way or another.  We all put one foot in front of the other for one or more reasons.   Let us be your reason.  We want to see you taken care of properly. We want you to get to another level.  We want you to find relief.  We are vested here.  You have people here who care.  Please remember that.

[4Kids]

I had a rough time for a while too, probably six months or so. My mouth had a terrible case of thrush and it burned to eat. My taste buds were largely gone. The good news is that if you can get your mouth normalized your taste buds will come back as you get new ones in 3 days or so. Try salagen if Evoxac is not working. It took a good 4 or 5 months for Salagen to work for me,and it doesn't work for me like it does for everyone else but i can live with it. I use a Xylimelt at night before sleeping because if not I couldn't sleep. In your case methotrexate might work for you, that might be something to try. Most likely you will come down and level out but until then it is an awful feeling.

I came on here similarly although perhaps not so severe. My flare in 11 came out of nowhere it felt like. It took me six months to feel functional and a year to feel sort of normal. It could very well happen, and I hope it does.

Hang in there. Do you have a list of things that may help? Like Nasogel for your nose, good eye drops, the restatis, the biotherm gel?  I wish I could recommend something for your poor lungs but I can't.  They make a spray saliva called NuMoisyn I think and I had to carry it with me for about three months so I could breathe without choking and do things like walk with my kids around the block, but I did and it works. Even now I have Saliva Sure and Excel mints with me at all moments and back up meds everywhere.

There is awful anxiety associated with being that ill. If they could help you with that, it would be good. Remember, there is a very high likelihood you will get back to a normal level of functioning, even if it is your new normal.

Jackie

[kimberly64]

My sorrow is overwhelming.  I am assuming peope with gland shut down to my extent with loss of senses are not here as they gave up as well  I wish I had hope.

[cccourt1942]

Kimberly:  I "think" my glands are atrophied.  I see my ENT next week.  I don't know about my  under the tongue glands..never can recall the name of those...lingual?  something lingual.  But I am here...with zero saliva production from sub mandibular and parotid.  I haven't had that medically diagnosed.  All I can say about me..there is no saliva in my oral cavity which isn't produced by medication or xylimelts.  It's miserable.  Yesterday I received an important phone call...many queries and replies.  After about 15 minutes, the hoarseness creeped in...was sipping water...and it occurred about 1/2 hour after my mid-day dose.  I apologized for my voice quality.  I have known the caller for about 7 years.  He inquired as to the problem... I just couldn't go into it.

Further, I worked the first three months this school year and could barely do speech therapy.  I was not diagnosed until after then.  I do contract work for my local ISD.  I have done this since my retirement.  Now I realize I cannot take those periodic assignments any longer.  I knew it was getting harder and harder.  I thought it was interrupted sleep.   Sleep was interrupted  by the arid mouth which kept me (literally) from swallowing, breathing, returning to sleep.  It was a vicious cycle.  At least  I sleep now...well maybe 4 to 5 nights a week.  That is wonderful to me.

I know you are looking at me and thinking I am old and have lived my life.  I have.  But I fought all these symptoms for 26 years.  I handled the aches, the eyes, the decreased saliva (though I didn't know that is what it was)--6 years of sialadenitis so bad the pain would take me to my knees.  NO explanation except "quite common condition."  I have known exactly two people who have each had ONE incident in their lives.  The last 5 to 7 years my husband was alive he was irritated I no voice strength to talk/visit with him in the evenings.  I would put myself on vocal rest.  At that time I was in my late 50s.  Not so old when I look back now.  My quality of life was altered many years ago. 

Those of us with the same symptomatology as you are here.  We don't like our conditions and limitations.  I keep getting up each day and putting one foot in front of the other whether I like where I am going or not.  I hope you can find some glimmer of hope and joy in your day today. 

[4Kids]

Kimberley, please try and tell yourself you do have a chance to recover some function. While many, many, many members come on here -- including myself -- in the same spirits you are, most of us do recover a bit or a lot and resume our lives. I myself had no saliva at all before treatment. I was eating hard boiled eggs covered in mayo and choking them down.  I could not chew gum because it just smeared and stuck to my teeth or became like gravel. LIke I said, I had to have spray saliva in order to talk more than a few words.

There is help, and it does take some time to find the mix of things that works for you.

The sorrow is awful. There is a whole grieving process in which you process your emotions to accept the new life you have been given and have very little choice but to accept. There are teeny tiny little steps you may take forward, and I hope you do, and every time something positive happens, cling to it and celebrate it.

We are here for you, and although you may not believe it, we have gone through very similar sorrows and we all care about you.

Jackie

[kimberly64]

Hi all,
I try but no one has lost taste to my extent because of severe shortage of saliva and I dont have good doctors and the ones I do say that I have to learn to live like this.  It has taken a toll on my health because of eating habits and its taken a toll on my family and their life as I am a burden to them and myself. I try to be positive by when medication doesnt change things that kinda diminishes the hope and I am only 49 and really wanted to enjoy a fe more years and now my life is over as I knew it and I dont see improvement only worse things like teeth loss and more problems.  I hate to he like this but.coming here only made me see how bad I really am compared to others who do maage their symptoms and stll have some quality of life.
Kimberly

[Deegee]

Kimberly:  I also have no sense of smell or taste.  This has been a problem for about two and 1/2 years. 

 My Dr. is aware of my problem, is very knowledgeable on Sjorgren's , and has suggested that I go to a Taste and Smell Clinic.  We do have one in our area and I am waiting to see if they will take my case, and if my insurance will cover the two or three days of testing involved in getting a diagnosis. 

Currently I am not on any medications, but will be starting Evoxac within a few weeks.

 I stay from all foods acidic and spicy, because they will cause my mouth and tongue to be very sore.  I find that drinking lots of water with meals, and using Ayr gel for my nose will at least give me comfort.  I find myself feeling resentful when someone mentions a smell or a taste, and really miss these senses.
 
Has anyone on this message board gone thru extensive testing for their loss of taste and smell?

Thanks for posting Kimberly, and I hope you find relief.

[kimberly64]

My doctors said the taste and smell loss are related to everything drying up.  Unless that changes the taste and smell clinic will not help because it is not neurological.  I havent been given hope they will return as I have been on Salagen then switched to evoxac. I have been on one or the other since Feb 1st and nothing is changing.  I am not hopeful as doctors said it should work immediately. Plus I am on prednisone.  On top of eating being a struggle and not to tatse it as well it has basically taken away a big part of being human.  I feel like a freak and I just dont want to face another day like this.  My husband loves me I know, my son is returning from a long deploymnet and  I was healthy when he left anf I cant even cook due to no taste for a party.  I cant even walk my dogs due to know mucus in throat and lungs andI get winded and cant swallow anything. I chew endles gum with a texture like paper or rubber and no taste by it keeps my mouth a little moist other wise my saliva goes to foam and then not one spit drop.  I am not going to survivve ths as it hit me full on advanced in just six months time and has only progressed.  I guess some people are strong with this disease because it takes a gradual course or they are just strong anyway.  I am not and dont reeally want to live like this and be a burden a tomy family as everything has to be done around my symtoms.  I cant eat alone due to choking hazard, I cant drive due do loss of concentration and I dont sleep well and its like the days are agonizing just to get through.  I have gone through 4 straight months of horrible symptoms and have only progressedworse on medication. Hope is gone.

[Gingersnap]

Even if you don't resume function you aren't likely to die. unless you are hinting at suicide. With the dramatic life changes you've gone through in such a short period of time I think it would be wise to seek counseling to help you deal with the emotional aspect of this, which is huge. There are probably counselors that specialize in traumatic injury or health problems and how to learn to cope with them and help with your mindset. I really hope that you do seek help as it would be horrible for you to kill yourself. And as hopeless as you feel right now, there is still a chance that it isn't permanent. Please do consider seeking help ((hugs))

[kimberly64]

Does Evoxac really take time to work and things get better? Why do I get snippets of taste some days and zero others?  The snippets are very mute and distorted.  Doctors even treat me like I am the worst case they have seen even a rarity and that adds to  my hopeless feelings. I get counseling and it isnt helpiing, its hard to even sit and
talk for 15 minutes with a counseler without completely loosing my voice or going so dry its unbearable.  The counselor did not recommend medication because he said it would worsen my mouth due to most have a drying affect.
I cant face a grocery store, a long car ride. I have given up everything I loved in my life and I am horribly depressed.  Family has distanced itself because they dont understand the illness or even if its real.  Imagine how that makes you feel.  You have this horrible disease taking all the pleasure out of your life and your family thinks it cant be as bad as all that!  This is why I feel the way I do. How does anyone deal with loss of senses on top of all the other things.  I wish I was  a stronger person in dealing with this but its horribly hard.  So hard.

[ohiolady]

Ask your  counselor for some ativan.  It will help you and it is not drying.  Antidepressants are very drying and this is probably what the counselor is referring to.  Kim, you are stronger than you think.  Just try to get through today.

Anna

[4Kids]

Salagen does not work right away, it can in some people take up to four months to take effect. This was the case with me. It took probably six months to feel somewhat normal and not require carrying around spray saliva and gel.

[kimberly64]

Deegee,

Please tell me how you cope with complete taste loss.  I have for the first time in my life not wanted to live and I am so scared of my thoughts but I just feel I am just sufferring and not even existing really.  I dont even want to wake up because the days are just too hard  to get through.  I SEE NO HOPE. 

[cccourt1942]

This thread is calling for more soul baring than I am ready for.  But here goes:  my closest friend asks me EVERY time I see her 1) what did people with this used to do?  2) if it's hereditary/genetic, who in it had it in your family?  3) Have you ever heard of this before now? 4) (Ready?) You look better than you have in years.  YOU DON'T LOOK SICK. 5) What do your children say?  6) How did you even know about this?  7) If you saw the ENT and ophthalmologist, why didn't they ever say anything?  ......this can go on and on.  I don't bring this up....I am usually just sipping water incessantly or sometimes I place a xylimelt in my gums, etc.  She is the one that saw me each and every time my parotids would stop up...and grow out of my jaw.  She is the one we once shared our favorite books and knows that until last year I had stopped reading for TWO years.  She is the one who applauded my passion for pilates-DUE TO MY AGE.  Not because my joints hurt!!  AND..her husband is an internist.  (He isn't my doctor.)

I have not even told my son.  My son does not want to hear anything about me.  He loves to call and tell me a joke...or send a fb post with a cartoon.  He likes discussing a great movie or book, but NOTHING personal.  Nothing.  My daughter has heard me comment about light and sound sensitivity since I went thru menopause.  She thinks whatever this strange word is explains  the sensitivities.  She does not "digest" anything else.  We have only discussed this illness once. 

My lifetime friends treat me like I have let "getting old"  beat me.  They want to know nothing nor do they care.  They have their own old age woes.   Most of them still do some type of part-time or full time work.  I am the "weak" one.  The friends who do go to the theater with me, or invite me to meet them for dinner (or breakfast or lunch) avoid the subject with the strange word.  When asked when it would go away, I explained it was an AI Disease, a progressive condition...which I would not die OF but WITH.  I further explained it was all about managing symptoms caused by the disease...and the look is one of glazing over.  So I say very little.  Several will be polite and ask "how are you doing?"  What do I say?  Well "this week I have only stayed in the bathroom all day twice."  Or "I wake up 4 to 5 times a night to pee and have a hard time going back to sleep."  (ACTUALLY..this is soooo much better now that I have been on my meds for three months.  SO MUCH BETTER.)  (ALSO ..if it's bad, I will turn the TV on , pop a xylimelt and let it dissolve, then go back to sleep.)   The friend who has all the questions remembers how many years I would wake up at 3 or 4 a.m. and never go back to sleep...get up..exercise...go to work...and come home and just crash.  No wonder I woke up at 3 and 4.  Before dx the inability to swallow autonomically while sleeping would awaken me gasping for breath.  Drink water, sleep 30 min to an hour, wake up and pee, drink more water...repeat four more times.  I don't have to tell any of you this as ALL of you have lived thru this.

This isn't the first time I have seen this discussion on this forum about how little anyone wants to hear about SjS.  Now then...those of you who have had cancer, I bet you had lots of concern, prayers, attention, support during those times.  This?  Something chronic, life altering, but not the Big C...that is something else.  I have a friend who has had about 6 surgeries on her feet..which started with elective surgery for bunions and hammer toes about 4 years ago.   We have carried her for surgeries, sat during surgeries, taken her home after surgeries, taken her food after surgeries, one of the group drove her to work five days in a row...and stayed with her all day each day.  She has completed all the work..and there is STILL concern about her feet.  And..I am one of them who always asks.  She forgot I told her I found out why by salivary glands had been acting up for 6 years.  Think I will ever discuss it with her again? 

I don't feel as if I am a burden to anyone ...but I would like to be acknowledged.  I am scared.  I have fears.  I have doubts as to what I will do in just a few years.  It's a lot to be alone with in my head.  In fact, being on this forum has helped my state of mind enormously just knowing there are people all over the world who understand this disease and the consequences of same.  I have always been a strong person.   I am beginning to see cracks in the plaster here.  I listen to music less.  I fear losing the music of my life.  To me this signals I am losing interest in not just creature comforts but a habit I 've had as long as I can remember.  I have always had music playing.    My music is off.

[Aquarius]

Kim, I don't know if your counselor is a psychiatrist.  If not you must see one.  You are severely depressed and understandably so.  You need meds that alleviate depression and anxiety.  They can enable you to sleep and cope, so that you continue searching for better doctors and effective treatments. 

There are medication cocktails that will not be drying.  There are several people on this forum that have had encouraging results with anti depressants and/or mood stabilizers that did not make them drier or significantly so.  For me they are a life saver in battling the dreaded sicca.     

Stay far far away from Tricyclics (Elavil, Pamelor, etc.) though.  Even 1/4 of a 25 mg Elavil pill will make me extraordinarily dry.  Wellbutrin is also a big no no for me.  For others, it works wonders.  We are all different.  Some have even claimed these meds have alleviated dryness when the depression and anxiety eased.  A good psychiatrist can help you.

There is a risk that when someone feels utterly hopeless and helpless, it limits motivation to keep searching for answers.  You have dealt with this for several months but you are still early on in the process. I am confident there are treatments and doctors that will be positive for you.  You must find them and not give in or give up. 

Last, if you have any inkling what triggered this, you must be 100% open with your doctors.   Embarrassment, regret, fear, and guilt can keep people from being completely forthright.  This may not pertain to you but if you have not shared everything with your doctors, you need to.  It could be a piece of the puzzle that they are missing.  I mean no offense by this paragraph.  If it doesn't apply to you, disregard.   

Some of us including moi 5 years ago, have been at the depths of the dark valley.  We have fought mind numbing dryness, poor sleep and appetite, severe depression, lack of hope, and changes that we never expected.  Such is life. But improvement did happen.  Please take to heart and really pursue the many good suggestions and ideas that others have offered.   

We care, we do get it, and we want you feeling better.  But you must decide to stay in the game.   Keep posting and let us know how you are doing.   Big virtual hug to you; sending healing thoughts for a breakthrough.