Change in smell & taste

[JoC]

Hi everyone, I've been diagnosed since 2008 with CFS/ME. But since a couple of months I've got more and more issues with smelling and tasting. The bad smell is especially with synthetic odors, like the ones in shaving foam, deodorants, perfumes, other things I don't smell ad all, like bleach, garlic etc.....the products which taste bad are especially the ones with artificial sweeteners in it. They taste just like the bad smell I have from shaving foam and artificial perfumes.

The bad tastes I try to avoid by checking what is in the food, but the smell is sometimes so bad that I go out of a shop because of the perfumes people are wearing. The sensitivity is getting for some odors is getting worse and worse...
Does anybody has the same experience? Is there a remedy? Will it stop sometime?

Thank you all for your input.
Rgds
Jo:Sign Help:

 

[alex3619]

The short answer is we don't know what causes this, but it is not uncommon. The good news is that sometimes it goes away or can be managed. Sometimes it doesn't though. Bye, Alex

 

[ukxmrv]

Jo,

The sensitivity to perfumes is something I have had all my life in a small way (it seems to be common in my extended family) but when I got ME (acute viral onset) it became much, much worse. I also developed asthma, hayfever and other allergies.

In my case it seems worse at certain times of my monthly cycle and I wonder if it will get better with menopause. As I am largely housebound I can control my environment and I don't have many visitors. If I am lucky enough to go out I take a mask with me what covers my nose and face. It can be a huge problem when I do leave the house.

Never used artifical sweetners but this can't be a hard thing to avoid maybe?

 

[Ocean]

Yes I'm this way too. I cannot stand going into a store that has lots of scented candles, potpourri and all that. I have to leave. People's shampoos, perfumes, detergents all make me want to get away as fast as I can. We use unscented products at home or ones that have a scent I can tolerate and since I don't get out much it's not too much of an issue for me but even if I go outside and someone is doing laundry at their house, the smell of detergent and fabric softener wafting through the air makes me feel sick and i have to get away from it. It's definitely been much more of an issue for me since getting sicker. Sorry I don't have advice on how to deal with it.

 

[SOC]

Sensitivity to smells is fairly common in ME, but if you only notice the foulness or the difference of the smell as opposed to actually having reactions to fragrances, it could be pre-serotonin syndrome. If you are taking any serotonin boosters such as antidepressants, tryptophan, 5-htp, or some illegal drugs (among other things), you might consider backing off the dose and see if the symptom goes away.

True serotonin syndrome is extremely dangerous (read up if you like). I've been told by medical professionals that they sometimes recognize pre-serotonin syndrome or illegal drug use by those taking antidepressants by that strange change of sense of taste. Purely anecdotal, as far as I can tell, but I thought it worth mentioning.

 

[alex3619]

Hi Soc, that is interesting about serotonin. I wonder if that explains it for most of us? There is old research showing that we have too many of a subtype of serotonin receptors, making us more predisposed to over-reacting to serotonin (I think this was Swedish research some years ago). SSRIs were on an old list of problem drugs for us - number two, right after beta blockers. So we might not even need to be on these drugs to have a problem. Bye, Alex

 

[Sparrow]

Sensitivity to smells is fairly common in ME, but if you only notice the foulness or the difference of the smell as opposed to actually having reactions to fragrances, it could be pre-serotonin syndrome. If you are taking any serotonin boosters such as antidepressants, tryptophan, 5-htp, or some illegal drugs (among other things), you might consider backing off the dose and see if the symptom goes away.

True serotonin syndrome is extremely dangerous (read up if you like). I've been told by medical professionals that they sometimes recognize pre-serotonin syndrome or illegal drug use by those taking antidepressants by that strange change of sense of taste. Purely anecdotal, as far as I can tell, but I thought it worth mentioning.

Very interesting. Thanks for sharing that.

I know that my genetic tests suggested I break down serotonin VERY slowly, and that SSRI's messed me right up. I wonder if this might be part of my issues along these lines. If so, I would like to be aware of it so that when my smell/taste goes particularly crazy I could try to be extra cautious about taking in anything that might make any serotonin overload worse.

Could you describe more what you mean by the difference in having reactions to fragrances or just noticing the difference? I can never manage to stay in the proximity of a smell that's one the group that sets me off long enough to notice a physical reaction. But I'm bloodhound aware of a subgroup of things.

I always figured that because it's mostly probably harmful stuff or chemicals that I respond super strongly to, that it was probably some sort of built in defense mechanism related to a reduced ability to handle them.

 

[SOC]

Could you describe more what you mean by the difference in having reactions to fragrances or just noticing the difference? I can never manage to stay in the proximity of a smell that's one the group that sets me off long enough to notice a physical reaction. But I'm bloodhound aware of a subgroup of things.

Please understand that this is strictly anecdotal.

First of all, I'm the opposite of some of you, I can't maintain enough serotonin and have taken tricyclics, then ssri's and snri's for decades without problems and to my benefit. A number of years ago I was seeing a new doc with some strange symptoms. In passing, I mentioned that everything tasted funny/bad and that it was very distinct, not like sometimes happens with a cold -- it was really odd. That's when he told me that the change in the sense of taste -- things tasting very unusual and/or bad -- can be a sign of too much serotonin (along with other signs, of course) and backed off my Wellbutrin after which I felt much better and the strange bad tastes went away. This was confirmed to me sometime later by a nurse friend who works in drug rehab. I think it has to do with heightened sensory signals....?

In the past, starting a couple of years before my CFS diagnosis, I had bad reactions to certain smells -- severe headache, nausea, dizziness, extremely low BP, followed by days of ME-type relapse That was diagnosed (correctly or not) as excessive vasodilation resulting from (not clearly identified) chemical components of the smell. Some of the things we did identify were camphor, eucalyptus and tea tree oil. It was very nasty and made going out in public absurdly difficult. I know what you mean by bloodhound aware. I still get very...er...abrupt with any student who comes near me with a Hall's cough drop, even though I haven't reacted to odors for several years.

That reaction, which was a change in my body condition, was very different from the simple "Whoa, that tastes completely weird" change of taste (or smell, I'm told although I didn't experience that one).

 

[JoC]

Thank you all for the information...in a way nothing to worry about. Just one of those nasty things when you got CFS/ME.
By the way, I'm not taking one of all the drugs mentioned above.
The serotonin, could be a good explanation, as my generalist is linking other symptoms I have to the hypothalamus which I believe has a link to the serotonin-levels?
Oeps, my energy is leaving me...getting this terrible cold on my back again and having cold fingers and toes...thanks you all