Need to connect with victims of taste disturbance from Lamasil in May, 2017

Posted , 7 users are following.

Some time has passed on this thread since anyone has reported their situation with taste loss from taking Lamasil 250. I would like to hear others' experiences.  I'm 57 years old and took Lamsil for five weeks before noticing a several taste alteration to almost all food and liquids.  I quit the medication instantly.  I think I recognized the issue quickly because I'm a cancer survivor who has also experienced metalic mouth from four rounds of chemotherapy.  This experience of taste loss has scared me much more than the metallic mouth that developed from chemotherapy because I recovered quickly (after each round) from that taste disturbance.  I'm headed into my fourth week, after quitting the medication, April 23, 2017.   I've noticed a few improvements such as being able to taste Italian soda (blood orange), carbonated wine, hamburger, fried chicken, a flavorful ham/bean/vege/ soups, Chocolate Boost, bacon and egg (with a lot of salt).  I can also taste some vege/fruit smoothies from the local Juice Bar and a hint of strawberry or cocoa in the chocolate/banana shakes I make at home. But overall, I have a long way to go, as I can't taste bread, sandwich meats, crackers, peanut butter, cheese, some raw veges/fruits, potatoes/pasta or anything sweet. And in the past week or so, I've developed alternating mouth tastes of hot and citrus or salty.  It's very annoying. I've tried Biotene and hard candy but it's a constant distraction. And finding food I can taste is equally challenging. 

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  • Posted

    Correction to my previous copy: severe taste alteration to almost all food and liquids.  

    Also, I need to add that my cancer experience took place ten years ago.

  • Posted

    Hello,

    I'm from the Netherlands and I also suffer from tasteloss due to this medicine.

    I took it for 21 days and on the 5 of may I realised that my taste was gone.

    I stopped using the medicine promptly.

    I still can't taste my food, it makes me very sad en I already lost 4 kilo's. Tomorrow I will be starting it has nutrition drinks from the diëtist.

    Hope this will be over soon...it's horrible!

    • Posted

      Thank you for sharing, Monique.  It takes courage to talk about this scary reaction to Lamisil.  I will pray for you and hope you'll keep me in your prayers too. I've also lost about 8 lbs.  I think you may get your taste back sooner than others because you only took the medication for 21 days.  Most of us have taken it for 30 days or longer.   Either way -- be patient!  I'm starting to get some of my taste back.  I've figured out the best way to describe the side effect: muffled. At first you have no taste but then, flavors become muffled.  From what I've read, sugar is the last to come back. But I'm still struggling with tasting salt too. I try to avoid adding too much salt to what I'm eating that tastes bland.  But it's difficult!  I also drink Boost or Ensure drinks and make homemade shakes with bananas and other fruit. I also add yogurt drinks to some shakes.  If you have something like a Juice Bar-restaurant in the Netherlands, I highly recommend getting vege-fruit smoothies several times a week, provided they are made with whole fruit/veges.  Let's keep in touch! 

    • Posted

      Boost and Ensure are the brand names for our American nutritional drinks.  They have a lot of calories, protein and vitamins.
    • Posted

      Sadly i can't keep the nutritonal drinks in....it is so digusting that i keep throwing them up.

      I keep eating my fried eggs and drink espresso with lots of sugar and take multivitamins and hope voor the best.

      I am on day 12 off my taste loss and hop it will get better soon. Not noticing any diffrence ...sadly.

    • Posted

      I have a sweet sensation in my mouth but not in my food, salt i can't taste. Things with sugar in it like desserts or candy taste disgusting. Pop is horrible.

      I will take yor advice on the smoothies because i need the vitamine en natural sugars are less worse.

      I will be thinking of you and hope we both get better soon! I will never take this medicine again sad

    • Posted

      Nor will I.  I'm happy with the fact that I can taste (to a good extent) most anything I drink or food liquids like soup.  Just very discouraged that at 4.5 weeks, I still can't taste solid foods very well such as fish and barbeque --even with good sauces.  I can somewhat taste strong flavored sauces but not the meat.  I can tasete hamburger and fried chicken.  You should try those soon, as others have reported being able to taste fried chicken. Make sure the hamburger is grilled.  Have you tried bread?  I can't taste it very well, although last night for the first time we ate out and I was able to taste bread dipped in the olive oil and seasonings that was served.  I felt like I was in food-heaven to be eating bread.  And I still can't taste anything sweet like a donut, cupcake, or even chocolate bar.  I also sometimes get a burnt sensation on my tongue -- as well as a salty or sweet/sour mouth. Has the burning sensation happened to you?   A couple of other things I was wondering about, if you don't mind me asking?  How old are you?  And, do you have any idea what your BMI (body mass index) is?  These can be factors in who is affected with this side effect.  Be sure to report your experience to your doctor too.  

    • Posted

      I'm 51 years old and have a normal BMI but that won't last long...losing weight quickly. Sometimes I feel my tongue ...not burning but more like a stinging feeling.

      I can't eat anything....beside boiled or fried eggs...everything else taste like nothing or disgusting. The nutritious drink left me with a feeling of a mouth full of greace...disgusting.

      I told my doctor but she wasn't impressed...simply told me that it would pass whit in weeks or months.

      I am far away from tasting anything still....it's very depressing at the moment.

      I would love to taste bread or anything.

      But I'm not even 2 weeks ahead in this....must be more patients a guess 🤔

      the fact that you at least taste something give me hope for the future!

    • Posted

      As I said earlier, I wish we could all find a local support group to help us with  this situation. No one understands but people who are going through it...especially the fear of not ever getting the taste buds bac.  And my physician hasn't been much help either.  She won't even take the time to research it!  She did say she had one patient in the past who dealt with it. But he was 70+ years old and took the drug a lot longer (two to three months) than me. She said it took him two months to get his taste back. AT any rate, it is the UNKNOWN that is so hard to ignore or put out of your head.   And yes, I am tasting some things but it is still VERY limited.  You will be encouraged when you can finally taste something...but I'm afraid the road is long for some of us.  I've seen up to 13 weeks mentioned on this thread. I don't think that will be the case for you because you only took it 21 days. 

    • Posted

      Stinging is a good way to describe the tongue sensation too.  This drug apparently creates a lot of different tastes and sensations in the mouth. I think it should be outlawed. It's clearly too strong.  As you know, there's also a liver and white blood cell count warning -- which should have been enough for me to say NO WAY!  But I stupidly went ahead and took it.

    • Posted

      You are so right about the fear to never get the taste back. This not knowing is

      terrible.

      Some say that 8 weeks is the magical number...I sure hope so because I will be visiting

      my son in Greece, I will stay there for 3 weeks. It would be awfull to still be out off taste.

      Sadly there is no support or anything else in the Netherlands that us helpfully with this problem.

      I was glad to find this Internet site that at least gives some hope.

      I am not sure if it matters how long you took the medicine, but if I have my taste back in full of for the large part before the 8th of july...I will be very very happy

    • Posted

      I know exactly how you feel.  We have an Eastern Canadian trip planned in late July.  Can't imagine taking a trip and not being able to French sweets, bread, etc.  I asked my internist if she would write a note for me IF it was still going on so we could cancel (we have trip insurance which covers pre-existing conditions) and she's refusing. Needless to say, I'm looking for another internist now.  And there is no support in the USA too.  I think it's a problem that's not considered a real problem because it goes away in the majority of cases.  But unless you've gone through it, you just can't understand the ramifications on your psyche, weight, nutrition and overall health.   And again, if you only took the medication 21 days -- lucky you!  I feel sure you are going to get through much more quickly than others. I wish I had paid closer attention to the signs of taste alteration.  I think I recall a few hints but most days everything tasted fine.

    • Posted

      Doctors should have to experience what we are for at least 3 hole days, just to give them an idea of how awfull this is.

      I have good hopes for you that you will be fine again before you leave for your trip, it will be 3 months then abs all the reports say mostly 2 months to heal.

      I noticed that when I drink coffee with sugar it's still taste like warm water but when I swallowed the coffee a few seconds later I have some sensation of coffee taste....not much but still.

    • Posted

      I try to keep my days as short as possible...get up late and go to bed early, don't wanna do anything, partly to save energy and partly because I'm feeling so down.

      I'm getting frustrated by peopleading that keep asking me or telling me....try this...surely you will taste this and when I don't they are surprised and I'm sad.

    • Posted

      I can totally relate to keeping the days as stress free as possible.  Thankful that I'm not currently working and that volunteer commitments are winding down for the summer.   I do have my adult kids coming into town this week for a visit so that may be a little challenging at meal time.  And yes, I wish I had not told some people about this issue because I can tell from their responses that they think it's all in my mind: psychosomatic.  I've tried to direct family members to the

      QQ Movies

      patient.info thread on the subject so that they can read all the testimonials.  How could everyone be imagining this??!  The toughest part of my day is dinner time -- because I'm not very motivated to cook.  We often pick up different kinds of food to help me "taste-test."  And we went out to eat for the first time this week.  It didn't go great but I did taste my first bread when dipped in an olive oil and pesto sauce.  I could also taste hints of salad flavors and a little of the salmon I ordered with pan asian (soy) sauce.  But it is such a challenge to try new things and not get discouraged when I can't taste.  We really have to push ourselves... You may not be at the point just yet. But you will get there.   Oh and I remember when I couldn't taste coffee either.  But now I can!  It's still tinged with a salty, sweet or sour after taste but I drink cappucinos.  So, I think the espresso is strong enough to overpower most of the medication's lingering distortions.  

    • Posted

      I'm not working at the moment...I'm unemployed at the moment so I already had stress enough.....pffff

      Cooking is a drama...I cook....smell....get hungry...try the food and be disappointed again.

      Had to go to the fysiotherapie but cut it short.....impossible to train for an hour if you're not eating well and enough.

      I tried to explain to my coach but she just said.....eat a little bit extra when you come in.....yeah right....if it would be that easy.

      I tried bacon today...didn't taste anything but when I fried it it tasted a very tiny little bit salt...like 5%of what it would normally taste.

      I'm gonna try a grilled burger tonight and will let you know the outcomesmile

    • Posted

      Look forward to hearing how it goes!  I just had a left over burger and it tasted better to me today than yesterday.  Which is weird.  But this condition is weird. And I think I've read where there can be lots of ups/downs.  Like you may think you are getting back to normal and then boom, you have a bad eating experience and realize it's not over yet!   Sorry that you are unemployed.  I hope you will get back on your feet again soon and find work. What type of job are you looking for?   And I totally agree that you shouldn't push yourself with exercise.  I take water aerobics twice weekly but, I can work as hard or easy as I want.  No pressure but it offers a very good workout for your entire body and easy on the joints.   I promise you are going to get better soon and you may even beat me on a total recovery.  It's too bad we can't converse over email or even WhatsApp on our phones.  It feels a little strange to know that anyone can see our ongoing conversation!  Oh well.  Maybe it will offer some comfort to others.

    • Posted

      I think people are happy to read how we are doing during this process.

      I didn't like my hamburger all though I could taste a tiny of the used seasonings.

      I also had some vegetables...I hate veggies but they tasted as bad as always...so I ate them😂

      I can taste some difference in food now, a peanut tastes like a peanut but I can't taste the salt on it.

      Like to think that it starts to get better...very slowly.

      I'm also very happy that we have each other to lift up our spirits....we know we need that!

    • Posted

      Yes we do, Monique!   I had a great experience last night eating barbeque ribs.  Other than hamburger and fried chicken, it's the only meat I've been able to enjoy.  That's the good news. Bad news is I can still barely taste anything sweet.  For instance, I tried a breakfast "" this morning which was completely tasteless and then tried a piece of raisin/cinnamon toast with strawberry-flavored cream cheese but the only thing I could taste was the cold sensation from the cream cheese spread.  Couldn't eat it.  Which is a little weird because I was able to eat the same toast with butter yesterday. Sometimes, I think you can taste better as the day wares on.  I made the toast I ate yesterday around noon and after I ate a few other items.  I also rinsed my mouth with Biotene mouthwash.  Do you have that in the Netherlands?  You could ask your druggist or pharmacist (don't know what you call them) for a substitute mouthwash, if you don't.  You should share your experience with them too, as I don't know it might ever be pulled from the "market," IF we don't share our experiences with the medical community. In addition to the biotene, some medical professionals and medical journals  suggest taking zinc and Alpha Lipoic Acid (safe dietary supplements). I think it may be helping me.  It's just difficult to prove.  And I know what you mean about those veggies!, although I've learned to coat them with olive oil and salt/pepper and then roast them for the best taste anytime.

    • Posted

      I believe that it goes with up and downs....today I could taste some Indian food, hamburger I can eat but not much taste for it.

      I told my pharmacist about the meds and she told me to be patient..sigh.

      I started crying in the foodstore today...got out quickly...so frustrating. I also take zink and multi vitamins, hard to tell if the zink helpes.

      Mouthwash we do have so I will get that tomorrow 👍

      Started eating bread.....not as bad as it was but still not much taste.

      I hope tomorrow will be better ?

    • Posted

      I hope it will be better too -- for you and me.  I've had similar emotional experiences in regard to coping with the limited food options. Sometimes, I cry and other times, I'm just angry that I ever took the medicine.  I can taste highly seasoned or what I call full-flavor foods. Which proves that I'm better off than two weeks ago.  But the rest of the food I'm trying is very bland and difficult to make myself eat.  So I continue to have up/down tasting experiences.  And it seems that enjoying a donut, cupcake, pastry or is still a long way off.  The mouthwash mainly helps with the sour/salty taste in your mouth and the burning/tingling tongue sensation.  You can use it up to five times a day, according to the directions.   Keep me posted on your journey.  I'm growing very weary of mine but know that many people have gone through this with the positive outcome of fully restored taste.

    • Posted

      My diet ....2 glasses of breakfast drink, has lots of fibers and minerals, half a glass of protein drink, plain slice of bread, 2 fried eggs with cheese on them, and 2 mugs of coffee and 2 glasses of water. That's what I'm surviving on. And everything what anybody is eating I want to taste....so a few nibbles as well.

      There's some very tiny tiny improvement on my coffee....but only when I swallow it....on the tongue still no taste.

      I long for a good meal...hot and spicey....I know we will get there again and we will enjoy our holidays in July!

      Positive thinking and reminding that others got there taste back will help us?

    • Posted

      Day 15 after stopping the medicine, I can taste the oregano in Italian bread and I tasted the flavour

      of burrito chips.

      Sadly my evening diner was no success, I am really grumpy at the moment.

    • Posted

      I'm sorry to hear that.  And I totally understand the grumpiness. Been there, done that.  I'm hopeful thought that I'm turning a corner as we went out to eat yestesrday and I could taste most of what I ordered and what my son and husband ordered.  They let me sample, of course!   The sour/salty taste and burning tongue sensation has also dissipated a lot.  I still can't taste s, cakes, pastries, etc.  But, I'm trying to contain my excitement over the possibility that I may be getting back to normal.  I believe you're going to notice improvement soon.  I know that I've read that the length of time you are on the medication determines how long it takes to recover.  Keep me posted...

    • Posted

      That's wonderfull!! I hope I get there soon to...but your must have been very happy to start tasting something again?👍

      As of today I can taste a bit of sweet and salt on my tongue ...so I'm hopefull that the healing has started.

      I keep telling myself...that all will be fine for the 8th of july.

      Some flavours like union I can just taste a tiny bit.

      I believe ll the people that say that it is a waiting game with slow progress ?

    • Posted

      Just wanted to know.... did it all taste as normal?
    • Posted

      No, everything didn't taste as normal.  Just better than it has tasted. I enjoyed blackened catfish last night with couscous/peas-carrots and roasted broccolli.  But tonight I feel like I had a set back.  Part of the problem was the restaurant, I think and also what I ordered: trout which had very little seasoning and no sauce and mac/cheese that was dry.  But I think some of the problem was my taste buds.  From my recollection of what I read in the other testimonials, it is a slow process.  And I think it's easy to get your hopes up too much and then be disappointed when all food doesn't taste like normal or full flavor.   Having said that, I do think we'll both be well on our way to normal tasting by July 8.   Keep me posted!

    • Posted

      How are you doing?  I feel like I've backtracked somewhat.  Which is pretty disappointing.  I've improved with some of the weird tastes that were occuring in my mouth (sour, salty) but I've developed a dry mouth which seems to be contributing to the problem.  Hope you are doing better.  Keep me in your prayers!  

    • Posted

      Hi , ik have the same..feel backtracked also,

      monday i could taste some sugar in my tea but to say is hopeless again.

      I could taste some of the garlic butter but that's it.

      I also have a dry mouth the last couples of days 😟. Is annoying.

      I keep loosing weight....and i am tired..sometimes is really hard to keep the spirit up 😕

      Hopefuly it get butter soon for the both of us!

    • Posted

      It's times like this that I wish you were my next door neighbor.  :-) One of the most frustrating and depressing aspects of this experience has been that I can't find people who understand (they laugh, look puzzled and/or look at me like I'm crazy especially after I tell them I've been going through it for five weeks! They can't even comprehend!)  You and others who I've found on line are the only ones who can relate.  And most of those folks reported on this experience several years ago.  I created this post to find more people like you and me who are suffering now!  Hope others will still find this thread! I think we need to hear from other folks. 

    • Posted

      It would be great to be next door neighbours ? i struggle with the not understanding from others as wel.

      Even my diet lady keep saying....try this salade...it has more salt...and i keep explaining that i can not taste anything 😡

      And the people that keep telling me what they had for lunch or dinner and how nice the food was....arghhhh

      People are now forbidden to talk about food when i am around 😂

      And youre right that it would be nice to hear from other people, in the Netherlands i found many comments on the medicinale

      stating they lost there taste but no further information on how they got along and how long it toke to get better.

      We are just looking for some resurrance 😕

    • Posted

      That's too bad that  people in your country are not providing details of their experiences -- especially how long it took to recover! It would be so helpful for those of us who are still coping.   I would also like to know if the dry mouth syndrome is part of the process. I don't recall reading about that symptom on the main discussion forum.  i feel like I've progressed from the overly salty or sour taste and burning tongue to dry mouth.  Hope the dry mouth is just part of the healing process.  How are you doing now?  I keep trying new food items with a little success.   But the majority is still not full flavor.  

    • Posted

      I stille have a dry mouth ...not the whole day but periods of the say.

      Had some succes tonight with garlic butter and salami meat ...normally when i chew i can slightly taste of and after 3x chewing al taste is gone..but now i kept tasting it.

      Also lemon pop tasted better...it got me excited...it really gave me the hope and belief that things are (slowly) getting better.

      Yesterday i cleaned my tongue and used nosespray to get the slime out of my throath...maybe that helped?

      Today i also tasted a bit of coffee with alittle bit of sugar...normally it taste like hot water..but there was improvement!

      I let you know if the progress goes on ☺

    • Posted

      Yeah. This is good news!  Don't let even a minor setback discourage you.

    • Posted

      Have you sought out the unflavored whey powder?as with you, I could not ingest the nutritional drinks. I purchased unflavored protein/whey powder and mix it with lemonade. It provides the protein and hydration. 
    • Posted

      I have two friends providing me information. One told me it took her six months to regain her taste. The other has not yet regained more then minimal taste. 
    • Posted

      Hi Dee,

      Yes i know about the proteïne powder, i think i should get it to keep my muscles and my weight a bit in condition.

      I do notice slightly improvement in my coffee and my toothpaste. I can eat a sandwich now with something on it but mixed flavours does not work.

      I can taste pure salt om my tongue very well but not in food, i noticed that some things are a little bit better like pop, tea, coffee, toothpaste and salt but its going very slowly 😟.

      Are you noticing any improvement?

    • Posted

      Yes. I've noticed improvement (as I've mentioned before) but it has been very gradual. I think the best way to describe the current situation is I have about half to 3/4's of regular taste with most solid food. One thing that still doesn't taste right and that I can't eat is peanut butter. I literally can't chew or swallow it very well.  I think this is due to the dry mouth issue.  There are a few solid food items that taste virtually normal and all liquids taste mostly normal.  I've not tried soda pop, mainly because I know I don't need to drink it anyway!   And I still have weird (sour, salty, burning) tastes which come and go.  I've had a couple of days when most everything tastes normal -- except for sugary/sweet items and I've had days when the bad or weird tastes in my mouth disappeared. It is very discouraging/disheartening when the weird tastes return. It makes me feel as though there's been a major setback. But if I recall from the other thread, the back/forth situation is fairly normal.   I believe with all my mind and heart that we are both going to return to normal.  Remember that many people have said it can take up to two months.   I would be very curious about the people r.e. 78866 mentioned, as to their age, BMI, other mitigating health conditions (diabetes, etc.) and the length of time they took the medication.  It's VERY important to know that information before jumping to conclusions about those of us who are younger and in good health.   I don't know if r.e. 78866 can see this post, but if not -- I wish you would ask her those questions.  Thanks!!

    • Posted

      Oh boy....i have a long way to go then because om not even near to taste anything for 50 or 75%....wish i was, lost more than 6 kilo and my BMI is getting low i now

      weigh 63 kilo and i'm 1.74 in height.

      How far along are you now? Like 6 weeks? I'm 3.5 weeks along.. ..it would help if my drinks started tasting

      normal.

      I really want to enjoy my coffee or an icecold coke again.

    • Posted

      I also have the werd taste in my mouth and sometimes a very dry mohth, sometimes i wake up at

      night because of it.

    • Posted

      I'm starting week six. Do you have any other mitigating medical conditions? If not, I believe YOU will get better. It's still VERY early for you.  I expected to be completely over this by now.  So it's been very disappointing for me too. Not sure what weight 63 kilos is in pounds.  And don't know what 1.74 is either. Could you translate into pounds and feet/inches?  Also, do you exercise?  Try taking walks and/or biking.  I hear biking is quite popular in the Netherlands!  And swim!  Do you have access to a private or public gym where you could participate in these activities?  Being active will increase your appetite, and thus increase your taste a little too.  I would also advise that you keep trying new foods -- just take little bites of different things. You might be surprised what you will find you can taste.  Although there are a few more common foods, overall, I think everyone is dfferent.  For instance, I could taste lemon zinger tea the very first week.  I think it's because it is so sour.  I've done well with the sour flavor.  Also have you revisited nutrional drinks in a dark chocolate flavor? Are you taking your zinc supplements (30-50 mg) and alpha lipoic acid (200 mg) which is recommended in several medical journals.  My husband who is an internist and my personal internist also recommended both the zinc and lipoic acid supplement. Regarding protein, I have no idea how effective the whey/protein drinks are.  I'm going to try to investigate. But meanwhile, I think you said you would eat a fried egg and peanuts?  If so, keep eating those items and try to add other proteins such as fried chicken which a lot of patients who have gone through this say they can taste. I could taste it early on.   Keep me posted. I totally understand and feel your pain.  This is a very scary condition.  And it's just too bad that the medical community has not spent more time studying it and finding answers. It's also too bad that the general public is not very sympathic about it.  We've got to stick together!  

    • Posted

      Also, i forgot to mention that I too have lost weight. I've gone from a misses size 8 (American sizing) to a size 6.  So a full size down -- I'd say I've lost between 8 and 10 pounds though this ordeal.  But it is important to try to maintain your weight.  That's why drinking nutritional drinks which have a lot of calories is so important.  Have you also tried a spicy or full-flavored soup? I made a ham/white bean soup twice because I could taste it so well. I used a ham bone which increased the flavor and a strong chicken broth. I think any strong flavored soups are a good option.  Also, I haven't tried curry but other patients have said they could taste it.

    • Posted

      For some reason, my other reply is still being "moderated."  So it may be awhile before you are able to access it.

    • Posted

      Hallo, can you tell me how oud your friends are and how long they took the medicine?

      Die they tool the medicine for a long time and die they have other stealth issues or a low BMI?

      We are trying to get a better idea of why some people are loosing all of there taste. Information is usefull.

      Thank you for replying earlier👍

    • Posted

      Finally....your reply shows hahaha....took some time !

      I do have a medical condition..i have COPD gold 3 so excersising is very hard for

      me but i do have fysio 1x a week. But because of the bad eating my mucsles kramp very fast.

      And we are a bike country! These days the electrical bike and the even faster E-bike are the bikes to get.

      I weight 138 pound and i am 68.50 inches.

      I keep taking my vitamines and zink...i don 't use the lipoic acid but will get it and start taking it!

      We sure need to stick together...people won't understand untill they experience it themselves.

    • Posted

      Thanks for the info.  COPD is an upper respiratory issue, correct? Not sure what the gold 3 means....  Can you explain further?  I have mild to moderate asthma.  How does your COPD manifest itself?  Do you have asthma or other types of upper respiratory issues?  How was the curry?  And have you had any luck with other food or beverages?  I'm still progressing but very slowly.  I believe I could taste chocolate today and the raspberry jelly on toast.  I also tried scrambled eggs for the first time and they were good.  But I couldn't taste a black cherry ice cream or a ham/cheese sandwich last night. I hope this is how it goes.... because it still seems weird to me that it's hit or miss depending on the food or beverage.

    • Posted

      Yes it is, i get out of breath very quickly, gold 3 means sevear. Its a nasty condition that limitates me in lot of things. But i manage...just keep positive smile

      I'm just like you progressing very slowly, somethings start to get more flavour and the french fries almost tasted normal.

      Fruit is still a horror...keeps tasting disgusting. I can taste a bit of sugar in my tea and coffee and in lemonade. 

      Food with lots of flavour start to taste better like 40% of its original taste but like you said...it is a slow progress but surely its getting better!

      i still have a problem with combining foods... i can taste the bread or the meat but when i put it together all flavour is lost?

      And what tasted good today can tasted totally different tomorrow...weird sad

      But at least i'm able to get some food in now....the click in my brain tht says...stop eating is not as bad as it was so i can finish a sandwich now smile

      The weight lost is stopped because of that and i can keep it more steady now but im not gaining back yet.

      I also eat flavoured food and drink sweet stuff next to it, that also helps a little bit in getting food in.

      Keep me informed....we will get through this! smile

       

    • Posted

      It's funny how often I've read your description from several victims of this taste bud issue and their journey: "Almost normal!"   I would say that's how I'm feeling about most food and beverages as I head into seven weeks post medication.  Almost all fruit tastes good now with the exception of bananas which have no flavor and strawberries, which are all sour.  I have started to taste sugar more (yeah!) and even chocolate although it is a mixture of bitter and somewhat sweet. I need to purchase a milk chocolate candy bar or something like a Milky Way or Snickers (American candy bars) to see how they taste because I typically eat chocolate that's 70% dark. Unfortunately, it's more bitter than normal now.   And I still can't taste deli meat.  I'm doing great with eggs, bacon and I made hash browns (fried shredded potatoes) today and it all tasted great.  The salsa I made last night tasted overly sour. My husband said it was great. So that's my proof that it just wasn't working for me.  I'm still not crazy about making toast but that's partly because I don't have my favorite multi grain bread from Trader Joe's (store).  I can taste the jelly and butter on toast but the bread is still fairly bland.  Glad your weight lost has stopped.  Me, too. Although I'd like to maintain my current new weight!  I think we're on our way but I reminded myself that most of the other "survivors" said it took eight weeks to 10 weeks for full recovery.  Trying to keep my expectations low.  

    • Posted

      How are you doing now, Monique?

      I just tried a Chick-fil-A chicken sandwich (very popular fast food chicken sandwich in the US).  It was edible but didn't taste normal.  

      Also tried a Greek salad and hummus with pita bread from a popular fast food Greek restaurant. The hummus tasted pretty good but the PB was dry and harder to eat. I think this is because of the dry mouth issue which comes and goes.  I think dry mouth is also the culprit when eating the other PB item: peanut butter.   I could taste the salad items and citrus dressing but still a little off.

      Weight has stabilized.  Still enjoying my fruit/vege smoothies and dark chocolate Boost nutrtional drink.  I just don't understand why I can taste those hearty drinks so well, but still struggling with some food.  

    • Posted

      But as I reflect on my "advances," I'm proud that I'm venturing out and trying more food that I was afraid to try before.

    • Posted

      Hello, sorry for the late reply. I am now 5 weeks and 2 days post medication.

      Still struggeling with food and beverages. It is going so slow, started loosing weight again.

      Eating less and less because i hate the taste of most things. Trying to eat and taste more now and hoping to find things that taste a bit food.

      The dry mouth some and goes juist like you said, its annoying. There are a few things that taste a bit better but the sugar that i could taste slightly is gone again.

      Still got 4 weeks before my trip to Greece....hoping it wil be much better then.

      I do notice improvement but as said before...such a slow proces.

      It is getting hotter now overhere and i would love some icescream or a cold coca cola ...but it still tasted awfull.

      I must keep trying and dont give up hope 😊

    • Posted

      Now I'm the one who is late!  I'm sorry to hear that you are still struggling with food and beverages. I had hoped you were making significant improvement with smoothies, shakes and other beverages.  Anything but soda pop. I still can't taste coke!  But s now taste better. And I'm hopeful about trying donuts soon.  Peanut butter tastes better but it's still difficult to chew.  It sticks to my mouth more than what would be normal. I ate pasta with a sun dried tomato and roasted red pepper sauce.  It wasn't full flavor but definitely edible.  I also enjoyed a spinach salad with grilled chicken, blackberries and mandarin oranges with poppy seed dressing yesterday.  I've been amazed that nearly all fruit (with the exception of bananas) taste practically normal.  Veges are all pretty good too. Still working on bread and deli meat and a few other things. Just keep testing foods!  I know you are going to turn a big corner soon.  Are you still taking the zinc (at least 40-50 mg)  supplement?  And did you try the Alpha Lipoic Acid, 200 mg. (supplement)?  Are you using a strong mouthwash or something like Biotene rinse (dentist offices recommend it sometimes)? And to keep your appetite up, be sure to exercise.  I'm so excited to be tasting more foods and beverages but, trying to restrain myself a bit.  This experience has really taught me to take one day at a time!  Keep me posted!

    • Posted

      I really believe you will be a lot better in four weeks in time for your Greece adventure.  Praying because I do believe God cares about us!
    • Posted

      hi Monique

      Haven't heard from you in a while.  Wanted to check in and see how your recovery is going.  I can taste most things but taste is still not 100% or in other words, some things I can taste better than others.  For instance, watermelon and other fruit & vegetables and some mixtures like gaucomole taste pretty normal.  But other food and drinks are still altered such as red wine (except for sparkling red wine), soft drinks and juices taste more sour than they use too.  I think the thing I'm most concerned about is that I have various lingering tastes in my mouth: mainly sour and occasionally, salty.  I also still get a burnt and/or numb tongue sensation.  I think these are signs that I'm still recovering.   

    • Posted

      Hi Dee,

      Sorry for not responding...my father in law fell ill . Been busy with that.

      I guess i am on the same level as you, things start to taste more normal but not all food or drinks.

      Things with sugar are still a big probleem, flavoured food is getting way better. Still can not combine food like pepperoni on a sandwich because all taste is gone then..sadly

      Fruit is a problem...everything tastes horrable?

      Keep taking my vitamines and zinc and the weightloss stopped because i eat more of what i can taste.

      I sure do hope to never go through this again. I am possitive about getting better, not sure all taste will return.

      Luckely we have buffets in Greece so i can taste a lot and hopefuly there will be enough that i can eat😊

      I do not longer experiance salty or sour taste in my mouth, it was gone one dat like a week ago, just like the burning feeling...don't miss it at all.

      We are getting there....just have to be pacient👍

    • Posted

      I understand.  Your family is highest priority.  I have good news!  I feel like my taste buds are almost 100% back to normal, minus the sour taste in my mouth which comes and goes. My husband (a physician) is beginning to think that the sour aspect is due to my asthma/upper respiratory issue. I've been coughing and alternating between a stuffy and runny nose with some drainage in the back of my throat.  At any rate, he thinks it's causing some reflux and may have even affected my taste buds a little too.  I haven't tried a coke or any kind of soft drink again, yet!  Holding off a little longer because I don't want to be disappointed.  I'm also still staying away from most bread (I don't need it anyway) and sandwich meat.  I made a BLT a few days ago and it didn't taste very good.  It is truly bizarre how if I eat the items in the sandwich separately, they taste fine but when eaten together, it doesn't taste right.  I think that is the same thing you've been dealing with, right?   And I believe (based on my current experience) that our full taste will eventually resume.  I would imagine we have had to endure this longer because of our age and low BMI.  Maybe also because of our asthmatic conditions. You are going to enjoy the food in Greece.  When you eat baklava, think of me!  :-)

    • Posted

      Hi Dee,

      You're right....it is the same, things seperatly taste better then together..bizar.

      I went out for diner tonight...my youngest turned 17 today and we went to a buffet restaurant...i tried a lot of food and most things tasted good go very good😊

      The desserts where not so good....sugar still a problem but the donut was tasty 👍

      Softdrinks are weird to....some taste like 70% others taste horrable, sugar thing again i tink.

      But im so glad to hear that youre tastbuds are almost back to normal...that is so hopefull for myself!

    • Posted

      Hey have you recovered from this ??? I had a similar situation from a different drug. I’m on week 6
    • Posted

      Hey have you recovered from this ??? I had a similar situation from a different drug. I’m on week 6
    • Posted

      Hello,

      Yes i idd revolver.. it took 3 Fontys but all is fine and back to normal.

      Sugar will take a while...it is the last thing to come back.

      Keep trying a much food as you can...i know its hard.

      For me some taste started to come back at week 8/9...hang in there!

    • Posted

      Fontys=months...auto correction..arghh

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