Loss of senses

[Crazysquaw]

Since having viral encephalitis 6 years ago I have no sense of taste or smell. Had anyone else had this and am I stuck with this for life?

[EncephInternational Partner]

Welcome to the community, and thank you for your question Crazysquaw. I wonder if Fifth Sense (a UK based charity supporting people with smell and taste disorders across the world) might have some useful resources? fifthsense.org.uk/letstalks... The Encephalitis Society's support team are also here for you - you can reach us on [e-mail] any time you have a question, we're always happy to help.

[alpappy]

For me its 4 years and it has not improved in fact its worse as all food except sweet and salty tastes awful I tried some smell therapy which did not help

[Tuesando in reply to alpappy]

Very sorry to hear that. Parosmia is awful.

[Paula-38]

I had Herpes Simplex Encephalitis back in the 1970's but no I haven't had any trouble with my senses.

[alpappy]

I am the same it has not improved Stuck with it for life I am afraid

[Tuesando]

I wonder whether lots of money will be poured into research in the field of anosmia/parosmia now that COVID patients seem to suffer from the same. Look at HIV. Due to COVID research we are now very close to a HIV vaccine.

[Tuesando]

Oh yes my partner who has AI encephalitis 12 months ago had anosmia. Unfortunately that has now developed into parosmia which seems a lot worse. Have a look at AbScent. Their website offers good advice, courses (paid for) and smell training kits. Research indicates that it can be helpful.

[Jensibel]

Hi Crazysquaw,Like you, I lost both my senses of smell and taste following E. It was just so dull! 👎 Meal times weren't fun anymore. In a restaurant with family, I'd choose the cheapest thing on the menu. (No point picking a steak, when I'd get the same mouth reaction to cheap liver and bacon 😉)

However, I'm glad to say I have now improved. I'm 16 years post E and I can definitely tell the difference between sour and sweet, spicey or mild. So now, I choose to add ketchup to my chips, or put mayo in a sandwich. They taste better to me, but not yet the old flavours I could sense pre-E.

[Gandalf2]

After dis charge food tasted very bad, I just had to get my head down , chew and swallow. Oddly enough everything had been fine on the ward. I chose salads and simple foods - no fancy stuff.

After a few weeks everything was back to normal.Enc is such a wide ranging illness with so many effects, mental, emotional and physical it is difficult to get to grips with it. In my experience with exercise, medication and a positive outlook it gets better.

I had a low thyroid (depression and fatigue for years) and a couple of other things which were spotted using blood tests, getting on top of these may have helped and made a big change so worth investigating this side of things may be worth a try.

[Cmiller1971]

My boyfriend was diagnosed with HSV Encephalitis 5 months ago. Although he hasn’t lost his taste or smell he tells me that he doesn’t know when he’s hungry anymore. I have to remind him that it’s time to eat. This is so odd to me and hard to relate to. It’s crazy how different everyone’s situation is, yet we/you can all relate in some way. Good luck to you and yours.