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Post by Deleted on Nov 11, 2015 21:25:24 GMT
The latest wrinkle to develop in my olfactory hallucination fun is that I'm losing the ability to taste some things. I still taste them to a degree but not fully, if that makes sense. And it's predominantly savory and salty things. You know something's not right when you want to put salt on a hot dog. Or your potato chips. So far my coffee still tastes fine. And sweets...I made myself white cake cupcakes for my birthday on Monday, with homemade buttercream frosting. Those were divine. The smoke smell is pretty intense most days now, having mellowed out for a few weeks in early October. If I get myself really involved with something I can almost ignore it. In addition to the smoke smell, the mold smell also still comes up now and again. And recently a rosemary like scent will creep in. I do not like rosemary so it's not fun. I really wish it would switch to something like chocolate chip cookies though. The MRA that my neurologist ordered was denied by the insurance company. Funny that as at the point they had paid for NONE of the tests or visits up to that point because it fell under my deductible. Just when they would have to pick up the larger portion of it they wouldn't approve it. The reason on the later? I needed to have had a stroke. Which is another funny thing. While the doctor does not believe I've had a stroke, he is interested in seeing if I have any constriction in the veins (which is what the MRA looks at vs. a MRI). Strokes are one potential cause of these things. And I have a history of hypertension, heart disease and stroke in my family, so he is being thorough. I'm trying to not think about the impact of what this latest development will have on our Thanksgiving dinner. I love my TD dinner foods. It's one of the few times in the year I really cook at this level...it's not something I generally enjoy. So if it turns out I simply can't taste my favorite TD foods, it will be pretty disappointing. And I won't give in to the idea of just eating desserts since they seem to still taste good  |
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Post by cadoodlebug on Nov 11, 2015 21:31:23 GMT
Sorry for this latest *wrinkle*. I once worked in a church nursery on Sunday mornings when I was in high school. Another lady who worked with us had no sense of smell. I cannot imagine. But she gladly took over the chore of changing poopie diapers.
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Post by Deleted on Nov 11, 2015 21:38:06 GMT
Sorry for this latest *wrinkle*. I once worked in a church nursery on Sunday mornings when I was in high school. Another lady who worked with us had no sense of smell. I cannot imagine. But she gladly took over the chore of changing poopie diapers. Yep, ya gotta find those silver linings! |
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Post by Basket1lady on Nov 11, 2015 21:39:26 GMT
Oh, I'd appeal that decision. Some insurance companies will automatically deny non routine care as a matter of policy, but will agree to it when appealed. I've had that happen with Tricare. I'd push it--it sounds like something is up with your brain.
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Post by Deleted on Nov 11, 2015 21:47:58 GMT
When my neurologist put me on Topamax the smell of smoke was horrendous. I quit that awful drug not only because of the smell of smoke but because everything tasted like crap. Why do people lose weight on "Dopamax," because nothing tastes good.
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scrapngranny
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Post by scrapngranny on Nov 11, 2015 22:04:01 GMT
My DD's MIL lost her sense of smell and taste a few years ago and they were never able to find a cause. She can taste really spicy foods and a few other things, but for the most part can't taste much. I hope they find something they can fix for you.
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Post by delila on Nov 12, 2015 4:03:10 GMT
I have epilepsy, from that I have lost some taste &smell. But smells, especially cigarette smell is an aura for a seizure for me. Have you spoken to your neuro about epilepsy or seizures?
delila
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AmyS
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Post by AmyS on Nov 12, 2015 6:18:44 GMT
I haven't seen your previous posts on this. But I'm going to ask: they've done the obvious and ruled out infection, inflammation, or any other issues in your nasal and sinus passages, haven't they?
If you have to smell smoke all the time, I hope it's at least a pleasant type of wood-burning smoke and not awful like burned food or stinky cigars.
I hope they're able to find the cause soon and give you an effective treatment for it.
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Post by pelirroja on Nov 12, 2015 13:01:29 GMT
OP: I can give you the name of a good ENT at GBMC if you are near the Baltimore area. PM me if you need to know! Just the idea of needing to add salt to a hot dog is  . I don't know about salty tastes but if you get a metallic taste it could be a precursor of stroke, since you mentioned hypertension issues. Are these taste changes and phantom smells possibly hormonal? I lost my sense of smell after breaking my nose years ago but it comes and goes with hormonal fluctuations. I hope you get some answers soon because that sounds very frustrating! |
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Post by Deleted on Nov 12, 2015 14:01:24 GMT
I have epilepsy, from that I have lost some taste &smell. But smells, especially cigarette smell is an aura for a seizure for me. Have you spoken to your neuro about epilepsy or seizures? delila Yes, this has been discussed and ruled out for the moment. The most likely culprit is nerve damage from a virus. The timing of the onset of symptoms points to a viral infection I had last May. |
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Post by Deleted on Nov 12, 2015 14:03:54 GMT
I haven't seen your previous posts on this. But I'm going to ask: they've done the obvious and ruled out infection, inflammation, or any other issues in your nasal and sinus passages, haven't they? If you have to smell smoke all the time, I hope it's at least a pleasant type of wood-burning smoke and not awful like burned food or stinky cigars. I hope they're able to find the cause soon and give you an effective treatment for it. The joy of olfactory hallucinations is that the smells are nearly always ones you find offensive. So my smoke is cigarette smoke. And while I do not drink sodas much anyway, I also cannot drink Coke anymore because it taste like mold, as does anything with lemon like lemon meringue pie, lemon sherbet, etc. |
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Post by Deleted on Nov 12, 2015 14:06:19 GMT
OP: I can give you the name of a good ENT at GBMC if you are near the Baltimore area. PM me if you need to know! Just the idea of needing to add salt to a hot dog is . I don't know about salty tastes but if you get a metallic taste it could be a precursor of stroke, since you mentioned hypertension issues. Are these taste changes and phantom smells possibly hormonal? I lost my sense of smell after breaking my nose years ago but it comes and goes with hormonal fluctuations. I hope you get some answers soon because that sounds very frustrating! Thank you I have seen an ENT. Even had my sinus checked out with a little camera in office. My new joke is that he told me I had perfect sinuses  I will keep that metallic taste in mind though. I've had an MRI to rule out tumors or other abnormalities. I have a huge panel of blood work done as well. All has come back normal. The reading I've done says that once most of the big things have been ruled out, it's a guess as to what might be the cause. And the prognosis is that it could eventually go away or I'll have it forever. |
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Post by scrapmaven on Nov 12, 2015 16:35:47 GMT
What a rotten thing to endure. ITA w/you that you should be smelling cookies. Cigarette smoke is gross. I hope they find out the root cause quickly and that it can be treated or just goes away by itself. Is your doctor appealing to get the MRA covered?
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blue tulip
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Post by blue tulip on Nov 12, 2015 16:59:33 GMT
sorry, insurance companies suck. I'd be worried about something like a tumor or something causing this, glad you've ruled that out!
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Post by heltr on Nov 12, 2015 17:13:26 GMT
Are you close to Philadelphia? it might be worth contact the Monell Chemical Senses Center. They are leading researchers in human olfaction and taste and might be able to liaise with you PCP to get appropriate testing done www.monell.org/ |
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Post by Deleted on Nov 12, 2015 17:21:40 GMT
Are you close to Philadelphia? it might be worth contact the Monell Chemical Senses Center. They are leading researchers in human olfaction and taste and might be able to liaise with you PCP to get appropriate testing done www.monell.org/Philly is 2 hours from me but very do-able. I am defint going to check this out. Thanks! |
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Post by heltr on Nov 12, 2015 17:38:04 GMT
Just remembered, the other person you could contact is Dr Richard Doty -- at the Smell & Taste Center at University of Pennsylvania Medical Center www.med.upenn.edu/apps/faculty/index.php/g329/p9720Here is a link to the Smell and Taste center with the contact info for patients www.med.upenn.edu/stc/about.htmlmight be even more helpful than Monell Philadelphia just happens to be a major center for chemical senses. So glad you are close enough to utilize the resources good luck Helen |
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mlana
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Post by mlana on Nov 12, 2015 19:52:06 GMT
I started smelling phantom cigarette smoke soon after I started on Asmanex for my asthma. When it first happened, I thought that one of the neighborhood kids was puffing away near my air intake vent, but then I realized that I wasn't having any of the physical reactions that I have when I'm exposed to real smoke.
I smell it most often when I am sitting on my bed ay night. I think one of the air vents blows towards me and that seems to trigger it. I do smell it in other places, though, like in hospitals and restaurants. I've had my vents cleaned and the air conditioners' trays sanitized, but I still smell it.
My dr said that this isn't a listed side effect of my meds, but when I was off of the Asmanex for a month, the episodes disappeared about the same time the medicine left my system. Not proof, but...
So far, I haven't had any other problems, just that. How long did it take for you to add in the other problems?
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Post by Deleted on Nov 12, 2015 20:59:40 GMT
Helen, I could kiss you. I'm sitting here in near tears. I just made an appointment. An all day, 8-6pm appointment on January 4th. Now pray the stupid insurance doesn't fuss as I'm sure this is going to be quite expensive. I'm going to go up the night before to avoid the 2 hour drive in rush hour traffic. Now to find a hotel that's not prohibitively expensive near by.
mlana: I first noticed the smoke smell in late July. It took a full week to realize it was becoming a constant thing. It's hard to describe how that worked. The mold smells arrived nearly the same time. I first noticed it in the shower...my husband's Irish Spring soap became very offensive and strong in it's smell of mold. He's been using it since he was a teenager, so nothing new. Not a new box or bar. I discovered the lemon around the same time but didn't it together because I don't eat lemon things often. The Coke issue is the interesting one. I think that preceded the cigarette smell. Because I don't have a soda often, when the soda tasted off, I blamed it on an odd bottle (20oz) or an odd mix out of a fountain. It wasn't until late August that I realized it was happening every time. Now, just an open glass (like at a restaurant) that say my husband or son are drinking and I can smell that mold smell from across the table, let alone taste it.
The change in tastes other than these started occurring 2 weeks ago. I do find it interesting that the deficit is centered around salty or savory flavors. I'm a salt lover...not extreme, but my husband fusses at me over it sometimes. If I could just have THIS symptom, which would push me away from salty things (chips are my downfall), it wouldn't be such a bad trade off.
As I mentioned above, I had a very bad viral infection last May. I had the worst sore throat that was not strep. I nearly couldn't swallow for roughly 36 hours. There was fever and ultimately head congestion. It took me nearly two full weeks to recover fully, though the extreme sore throat and fever stopped after 3 or 4 days. I was tired and weak for most of May. I can't pinpoint it exactly but I believe the Coke taste issue started in June.
You know, I almost didn't post this yesterday. Seemed a big "pity me!" post. Now I'm really glad I did.
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Post by heltr on Nov 12, 2015 21:37:09 GMT
I am so glad!
I know some of these researchers and you will be in good hands.
will keep my fingers crossed that they can help substantively......
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Post by crimsoncat05 on Nov 12, 2015 21:40:12 GMT
I love when good things like this happen through the power of the Peas!!!   Murphy, I hope your insurance company doesn't balk, and that you get some answers!!! fingers crossed for you! |
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. I don't know about salty tastes but if you get a metallic taste it could be a precursor of stroke, since you mentioned hypertension issues. Are these taste changes and phantom smells possibly hormonal? I lost my sense of smell after breaking my nose years ago but it comes and goes with hormonal fluctuations. I hope you get some answers soon because that sounds very frustrating!
I will keep that metallic taste in mind though.
