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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 21 of 21. This is the beginning of the thread.
Posted by Phillipa on November 23, 2012, at 9:16:24
There are certain things we all take for granted in life and our senses are one. You never know what a loss is til you experience it. 9 years ago smell & taste gradually disappeared. So now even chocolate which used to taste a bit is gone. After yesterday and seeing people enjoy food which used to my my simple pleasure in life but it was a passion of mine. Just sitting, reading a book, eating raw vegtables with cottage cheese I loved. Now eating is so depressing I don't eat with others, never eat out, and when done have to floss and brush teeth to wipe away any thoughts of food. As it's too painful. Neurons virus, I don't buy it. I can no longer live like this nor do I want to. People think I'm wierd as don't eat out or disppear when food is served. Only eat the chocolate truffles and what it takes to survive daily same things each day. I've thought since virus is what the specialists say that killed neurons in nose that it could have been lymes, or was it the lasix eye surgery , or is it the synthroid, or am I really depressed, or is it Alzheimers. I've had it sick of being left out of simple pleasures of life. Can't even smell chemicals. So why? Phillipa
Posted by ChicagoKat on November 23, 2012, at 9:52:52
In reply to No Smell/Taste 9 yrs now No Cure Why Eat or Live?, posted by Phillipa on November 23, 2012, at 9:16:24
Oh, my dearest Phillipa. I don't have an answer to you, but I can tell you that you have my deepest sympathy because what you're dealing with must be simply awful.
If there was any way in the world to do it, I'd fix you. You don't deserve this; you are such a wonderful person. And while I was at it I'd fix myself to, then we could both be happy and go join Scott in Aruba :)
Please, please don't give up. You have friends who care so much about you and who would be devastated if you left. I'm in such a dark place that if I heard you had given up, I would be that much sadder that I might just join you. Let's both try to hang in there, OK? I know it's easy to say that, and that I don't have to live your pain, but I am living my own special brand of pain and I just refuse to give in and give up. I truly hope you can feel better emotionally and can find a way to find joy in life in other ways.
Love,
Kat
Posted by Jeroen on November 23, 2012, at 14:57:48
In reply to No Smell/Taste 9 yrs now No Cure Why Eat or Live?, posted by Phillipa on November 23, 2012, at 9:16:24
Hey, hang in there, i know you can
BIG HUGS from me :)
Posted by Phillipa on November 23, 2012, at 18:30:59
In reply to No Smell/Taste 9 yrs now No Cure Why Eat or Live?, posted by Phillipa on November 23, 2012, at 9:16:24
Posted by Phillipa on November 23, 2012, at 19:52:41
In reply to To Philippa, posted by Jeroen on November 23, 2012, at 14:57:48
Jeroen you are so sweet:)))) Phillipa
Posted by neuroscience on November 24, 2012, at 0:29:24
In reply to No Smell/Taste 9 yrs now No Cure Why Eat or Live?, posted by Phillipa on November 23, 2012, at 9:16:24
On the bright side you can't smell it if someone f*rts near you.
Posted by johnLA on November 24, 2012, at 2:13:31
In reply to Re: No Smell/Taste 9 yrs now No Cure Why Eat or Live?, posted by neuroscience on November 24, 2012, at 0:29:24
ironic...
i would put the lack of understanding/sensitivity about the inability to smell right there with many people's lack of understanding/sympathy towards depression...
i, too, have no taste or smell. people say things like; 'that must be great for losing weight!.' or, 'at least you have the benefit of not smelling nasty things.'
um, no.
i would love to be able to smell anything. really.
neuroscience i know you wanted to be funny and supportive. but, i put statements like yours up there with telling a depressed person to 'try harder' or 'it's not THAT bad' and so on.
phillipa; look to satisfy your hunger in different ways. texture, color, temperature are just a few ways to create some taste bud excitement. google a bit about your condition. there are online support groups.
as i have mentioned before to you the tongue can still 'taste' four flavors when loss of smell happens; sweet, sour, bitter and salty. play around with these while adding some of the recommendations i made above. texture is a big one for me.
finally, i'm sorry for both of us. smell is supposed to be our strongest sense. also, the one most associated with memories and emotions. sigh.
Posted by neuroscience on November 24, 2012, at 7:29:21
In reply to Re: No Smell/Taste 9 yrs now No Cure Why Eat or Live?, posted by johnLA on November 24, 2012, at 2:13:31
> ironic...
>
> i would put the lack of understanding/sensitivity about the inability to smell right there with many people's lack of understanding/sympathy towards depression...
>
> i, too, have no taste or smell. people say things like; 'that must be great for losing weight!.' or, 'at least you have the benefit of not smelling nasty things.'
>
> um, no.
>
> i would love to be able to smell anything. really.
>
> neuroscience i know you wanted to be funny and supportive. but, i put statements like yours up there with telling a depressed person to 'try harder' or 'it's not THAT bad' and so on.
>
> phillipa; look to satisfy your hunger in different ways. texture, color, temperature are just a few ways to create some taste bud excitement. google a bit about your condition. there are online support groups.
>
> as i have mentioned before to you the tongue can still 'taste' four flavors when loss of smell happens; sweet, sour, bitter and salty. play around with these while adding some of the recommendations i made above. texture is a big one for me.
>
> finally, i'm sorry for both of us. smell is supposed to be our strongest sense. also, the one most associated with memories and emotions. sigh.
>
>Well hopefully she laughed.
Posted by johnLA on November 24, 2012, at 10:27:49
In reply to Re: No Smell/Taste 9 yrs now No Cure Why Eat or Live?, posted by neuroscience on November 24, 2012, at 7:29:21
neuroscience -
hope she did too.
sorry if i came-off a bit nasty.
Posted by Phillipa on November 24, 2012, at 20:08:00
In reply to Re: No Smell/Taste 9 yrs now No Cure Why Eat or Live? » neuroscience, posted by johnLA on November 24, 2012, at 10:27:49
I didn't laugh as it has messed up our whole life. We don't go out to eat, share a glass of wine or beer, enjoy family gatherings as they all involve food. As for smell. I would gladly also smell a f*art. Anything to fell alive. John as usual thanks are you doing any better depression wise? Phillipa
Posted by schleprock on November 24, 2012, at 21:06:41
In reply to Re: No Smell/Taste 9 yrs now No Cure Why Eat or Live?, posted by Phillipa on November 24, 2012, at 20:08:00
Phillipa, you need to get some sort of trained service dog. The sense of smell is indespensible when it comes to detecting environmental dangers such as gas or smoke, or if a random stranger has had too much to drink. I'm sure there must be some dogs out there trained for this purpose.
Posted by neuroscience on November 25, 2012, at 0:37:39
In reply to Re: No Smell/Taste 9 yrs now No Cure Why Eat or Live?, posted by Phillipa on November 24, 2012, at 20:08:00
> I didn't laugh as it has messed up our whole life. We don't go out to eat, share a glass of wine or beer, enjoy family gatherings as they all involve food. As for smell. I would gladly also smell a f*art. Anything to fell alive. John as usual thanks are you doing any better depression wise? Phillipa
ah... :(, was trying to make you feel better, sorry
have you ever had chronic sinusitis? it can effect taste and smell
Posted by Phillipa on November 25, 2012, at 11:15:30
In reply to Re: No Smell/Taste 9 yrs now No Cure Why Eat or Live? » Phillipa, posted by schleprock on November 24, 2012, at 21:06:41
You know you reminded me that the biggest concern all the taste & smell docs had was the ability of me to detect toxic chemical smells and carbon mononxide, and also spoiled food. Now I have to wonder if this is why I can't be alone I panic at the thought. I subconsiously ignored this and focused on the taste. Also have an microadenoma via MRI on pituitary gland that the docs say is fine. Since it's located kind of behind the nose could it possibly be involved also all the back and neck, spine problems could a nerve be involved. I would do anything to be able to smell a flower or taste food again. The biggest pleasure in life is gone. Also when googling it's always linked to Alzheimers or Parkinson, and sjournes disease? Any good researchers here as I am out of searches. Phillipa
Posted by Phillipa on November 25, 2012, at 20:02:56
In reply to Re: No Smell/Taste 9 yrs now No Cure Why Eat or Live?, posted by neuroscience on November 25, 2012, at 0:37:39
It's okay all is forgotten a natural reponse. Chonic sinusitis the ENT mentioned I have some but no congestion. Only a slight deviation of septum. Phillipa
Posted by johnLA on November 26, 2012, at 2:52:18
In reply to Re: Toxic odors inability to detect, posted by Phillipa on November 25, 2012, at 11:15:30
phillipa-
you can get carbon monoxide alarms just like the little smoke alarms we have in our homes. i suggest doing that asap. you'll sleep better knowing you'll wake-up. ;)
as far as foul food you need to read just a bit on how long leftovers can last and start really looking at the dates on foodstuffs that have them.
please try some of the suggestions i mentioned about food; temperature, texture, color, etc. and, remember you should still be able to 'taste' salty, bitter, sweet and sour. mix all those options up a bit and see what you come-up with. i surprise myself sometimes.
try not to worry too much about alzheimers or parkinson's. most people have diminished smell after the age of 50 to 60. it's more common than you would think. and, it has nothing to do with those two conditions.
i am about to have my 3rd surgery for nasal polyps. for a few months post surgery i get slight whiffs of smell once in-a-while. absolutely amazing what it does for the psyche. i would say at least you do not have chronic headaches or stuffiness that happens with nasal polyps. or, the constant surgeries. also asthma which usually goes w/the the friggin' polyps. i'll most likely need another surgery in a year or two. it sucks.
as far as my depression goes i am still not well. thnx for asking though. i'm not sure it's a good thing, but i am only on a bit of klonopin now. it does feel good to have a mostly clear brain now. i have been staring at a bottle of prozac for over 3 weeks. i'm stubborn. plus, my depression was triggered by life events. i still haven't bought in to the chemical solution bit. especially after i had a round of ect. my faith in psychiatry is pretty low.
anyway, get those carbon monoxide detectors asap.
we might not be able to smell the roses, but i bet we can 'see' and 'hear' things that many miss who have all five senses.
john
Posted by baseball55 on November 26, 2012, at 18:13:23
In reply to Re: Toxic odors inability to detect » Phillipa, posted by johnLA on November 26, 2012, at 2:52:18
Just FYI, carbon monoxide is odorless. That's why they make alarms for it.
Posted by Phillipa on November 26, 2012, at 20:16:01
In reply to Re: Toxic odors inability to detect » Phillipa, posted by johnLA on November 26, 2012, at 2:52:18
John was doing okay knowing I had the truffles texture and sweet. But now that seems to also be fading? I keep thinking that all my back problems could a nerve be compressed or something that is causing this. I still don't buy the virus. Do have carbon monoxide detectors. And I"m like you with the pills. I'd like off of them. But then I remember the time when the luvox was withdraw for a baseline. Don't want surgeries for sure. So prozac? I know a person who used to post here had been on nardil had ECT and he's working again taking prozac. I feel his was situational also. Love Phillipa
Posted by gardenergirl on November 26, 2012, at 23:45:57
In reply to Re: Toxic odors inability to detect » johnLA, posted by Phillipa on November 26, 2012, at 20:16:01
I still don't understand why you don't buy the doctors' explanation of a virus. This seems perfectly reasonable and within the realm of possibility to me.
Posted by johnLA on November 27, 2012, at 0:11:48
In reply to Re: Toxic odors inability to detect » johnLA, posted by Phillipa on November 26, 2012, at 20:16:01
thnx for the 'push' phillipa...
i have swallowed 2 days of prozac so far. i'll keep you posted.
will be very ironic (and joyful) if i get a response to the drug after all the stuff i tried, no?
please don't give-up on finding some food that will interest you. it's a struggle i know. but, like i said before, play around a bit. like a slightly sweet crepe with something savory (bacon, grilled meat, etc.) in it hits the spot for me. texture, temp, and tastes the tongue can pick-up on. also, a really good bacon cheeseburger from a high-end eatery (not a fast food burger) is tasty as well. i do this just once in a while due to the calories/etc but they do taste good. try it. 1 night a week for dinner i have scrambled eggs w/bacon = good too. (i guess anything w/bacon!) i think you might enjoy these. just go easy on the bacon. ha! also, crisp apples are tasty for us.
i picked-up this info on a anosmia support group. google a bit to find-out more foods that will turn your taste buds on.
thnx again for the story about your friend. it gives me hope.
john
Posted by johnLA on November 27, 2012, at 0:15:08
In reply to Re: Toxic odors inability to detect » Phillipa, posted by gardenergirl on November 26, 2012, at 23:45:57
usually loss of smell is caused by one of the following;
1. congenital
2. head injury
3. viral infection
4. age
Posted by Phillipa on November 27, 2012, at 9:37:49
In reply to Re: Toxic odors inability to detect » Phillipa, posted by gardenergirl on November 26, 2012, at 23:45:57
GG I wasn't sick no running nose no nothing. Was in the middle of lasix eye surgery one eye done and then it slowly started fading the taste. So I have to still wonder if somehow although sounds impossible the lasix somehow did something or the spirochettes from the lymes which still positive attacked the weakest place in my body at the time. And the fact that about three weeks before had stopped the biaxin xl. So without antibiotic could have triggered a release of spirochetes from their cysts. still looking and researching. And the strangest thing was two days off the biaxin was on an Island looking for shells with Greg eating a sandwich (could taste well then) and having a good time and in the middle of eating felt like something had dropped me to the ground. I said to Greg the strangest thing just happened. Forgot about that til the loss occurred. Phillipa
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