Can anybody with FND, NEAD or Epilepsy please help with this query?
Every day, several times a day, I smell various odours. My neurologist reckons they may be linked to the type of migraine I get.
The smells are diesel, petrol, chemical wipes (hospital ones), faeces, cigarette smoke (as if on an old coat), fried onions, raw onions, bubblegum, strong BO, PVU glue, whiskey.
It drives me nuts as I am nowhere near anything that can be smelling of these things.
Thanks for your help, people.
Hello, I have FND and NEAD. I was originally diagnosed as Epileptic. I very often get strange odours a well. I’ve asked the Doctors and Consultant who all say it’s part of the condition. They are memory smells they said that I am bringing back from the past. Not necessarily current smells. I.e. they don’t actually exist it’s a trick of the brain. I hope that’s of some use to you.
Thank you so much for that answer... it is good to know that I'm not going mad. I sit there and ask my husband if he can smell that, hear that or see that and he will says"No, there's nothing there" and needless to say it has been upsetting me. The smells are the worst, though, as they are overpowering.
Your so welcome, they had no solution I’m afraid to say just learn to live with it. I agree though some smells are horrendous. I get the excrement smell sometimes and look round behind me hahaha 🤣 just in case. I’m a weirdo though. I wish you luck. X
That makes two of us 😂
I think your neurologist is right. Has s/he given you any tips for how to handle this?
Yes, she said to fill in a headache diary and send it back to her and in the meantime to look up a brochure on FND and to look up a few sites - I chose this one.
I wonder why she thought reading a brochure on FND/conversion disorder would be helpful?
I suspect the diary is to take to your next appointment yes? I keep one for my dropouts. I just pass out like ive gone to sleep instantly and fall to the floors mine is so they can see how many, when and if clustered I think.
Yes, I've had plenty of those diaries to fill in over the years LOL. If the neurologists have kept them, they must have filled a room by now! 😂
I’ve had FND for 12years now (I’m 40) and a few years ago, was diagnosed with Complex Migraine, after suffering thru 5months of migraines that would not go away.
During that period, I regularly smelled odors that weren’t present. Thankfully, I smelled chocolate the most frequently! I have gotten control over my migraines thru a variety of lifestyle and diet changes.
But here’s one thing I highly recommend that can make an immediate difference:
Essential oils. Highly suggest lemon, orange, lavender, mint, sandalwood & cedar! For those strange smells, I would keep lemon on hand the most because it has such a clarifying effect. You KNOW when you’re smelling lemon. Sometimes all it takes is replacing the offending scent to allow your brain to reset to your environment.
Lavender is very calming. Mint is very helpful as well.
I suggest just buying one of those small kits on Amazon (highly recommend N.O.W. brand because they are all food grade.)
I am quite obsessed with scent. Even as a child, I’ve been highly sensitive to environmental smells & have ended friendships because of a person’s personal fragrance. So I learned at a young age to create fragrances to adorn myself with as a buffer when I go out into the world.
Keep yourself hydrated and I found my migraine symptoms were often triggered by an electrolyte imbalance. Although I wasn’t originally a fan, I now lean on Coconut water to stay in balance. Been migraine free for over a year. I know you can do it too!
Best of luck to you!!😘
Thank you so much for that advice 🙂. I do drink a lot of distilled water. Our water could be drunk fresh out of the tap, but it still tastes "off" to me so it has to be distilled. What do you do with your essential oils, do you put drops in a bowl of water or put it on your skin? My migraines are classed as the "usual" and "ice pick" or primary but benign migraines. I don't want to be taking Iboprufen all the time.
I’m not trying to intrude on an existing conversation. I am new to this site and hope to introduce myself or my story soon but as someone who has suffered migraines my whole life I thought I might add something that has became very useful for me and my family and maybe it could be helpful. When I get a migraine or even feel 1 creeping up I put generic muscle rub, icy hot, or mineral ice on the back of my neck, forehead, and temples. If you have access to a fan it makes it the equivalent of an ice pack in those areas to slow down blood flow and the menthol will open up sinuses or just mask the overpowering door. Didn’t mean to interrupt just thought it might possibly be helpful
Hi Pidge,
Don't class it as an intrusion, and good to meet you. Thank you SO much for those tips. I am very grateful and will try them out. Looking forward to hearing from you again. Hope you are feeling okay today?
😀
I’ll be honest not many good days lately. Recently diagnosed with fnd and have not reached the acceptance stage. My view of the medical field right now is jaded and not liking being cynical. Not sure if I will get to the point most of y’all are about accepting this diagnosis and I am not trying to take that from anyone else just at the point of frustration at the moment. Hope that will pass because it’s not usually in my nature. I hope you are having a good pain free day
Oh gosh, I haven't accepted it either and neither have many others on the site, Pidge, that's why we are looking for answers. It's very difficult to be given something else to add to your list. Personally I was told, I cried again, frustrated because I was told over the phone (lockdown) and sent a brochure and told to look up this site. That was it. I have a good neurologist but because I was told by my previous neurologist that I had a Somataform Disorder - they disn't really know what was wrong with me - I think my present neurologist expected me to understand what everything was about when nothing had been explained to me! Frustration, anger, Resolution, but not acceptance. Take one day at a time and every day will be different. We are all here to help you - with any subject you want to speak about. Take care 🙂
Thank you. I hope you have a great day
Hi! Oh, when I mentioned hydration, I meant keeping electrolytes up! I was surprised that when I had episodes, after reviewing my blood work, doctors said I was OVERhydrated, which depleted my electrolytes. I didn’t even know that was possible. I was told to drink less water (I’m chronically thirsty so I thought I was doing the right thing). Coconut water and prescribed Riboflavin (B2) & Magnesium helped me finally turn a corner! I strongly recommend those two vitamins for migraine.
Now, the oils are a passion of mine for many years & I’m developing a product line geared towards treating medical symptoms. Trying to self heal! But all the oils I listed are safe to use directly on skin. I would dilute them (5-10 drops into a tbsp of olive or coconut oil) and rub (esp. mint) onto the forehead and temples. That’s for the pain!
For aromatherapy alone, u have so many options like a diffuser but I prefer to place a few drops at my wrists and neck (like perfume) and just take deep breaths daily.
Sorry, I’m long-winded! My first time actually interacting on the site, tho I’ve been lurking for a few years 😊
"Lurk"... I like that one 😀...I know exactly what you mean. I had no idea you could over-hydrate. I am so thirsty 24/7, even my lips are parched. I will definitely try the coconut water immediately. As for the oils I will have to get them online as my town doesn't sell them and I don't go out. Thank you so much for the advice, and I feel honoured that you have spoken to me first 😂. You take care and I'll let you know how I get on.
😁 Silly. I order mine from Amazon. Are u in the UK? Seems like most of us on the site are. I’m in the US & I can tell u I feel absolutely forgotten by the medical community. It’s why I had to learn other methods to treat my symptoms.
The dry lips-don’t even get me started. I can have a belly full of water & still feel parched.
But yea, I’d only heard of people using MDMA/Molly to drink toxic amounts of water. No idea I was so close to it myself! I don’t know why I’m always thirsty. Do u???
Amazon - won't go near the place now (had problems with them in the past!!) Anyway, yes I'm in the UK and now I know you are in the US of A, I can put a kind of accent to your typing 😆 . I have no idea why I am thirsty all the time. At first I thought it was the herbal teas, because I gave up on my coffee - that was hard. Gave up on alcohol - that was hard. I was trying to help heal the migraines and the fits. So I was given a box of Pukka Teas for my birthday. However, the thirst is still there. Fresh orange juice makes it worse. What is this MDMA/Molly you are talking about? Maybe we drink so much because we're so hot!! 😄
We are hot aren’t we?!! Yea baby!MDMA is a party drug (also called “Ecstasy” or more recently “Molly”) that makes you very chatty, dancey, and wanna hug the world. But it’s been known to cause people’s bodies to overheat, which causes them to continually increase fluid intake.
In the late 90s there were a bunch of kids dying from water intoxication after staying up all nite drinking water. I had fun in my 20s & can attest that it does make you feel like you’re suffering a drought internally.
At my worst, I came close to a stroke after eating nothing and ingesting only water for 5days. Now, even with no appetite, I force myself to eat raw fruit or veg just so my electrolytes don’t tank. It’s a strange set of symptoms that have evolved over these years.
🙃 Being thought of as American can be a source of shame these days. I’m going back into the closet 😑
Nothing to be ashamed of! 🙂 Thanks for the information. Wow, those poor kids. I have always thought it was drugs that affected/killed peopled, never thought about such side effects, bless them. Next question.... what are electrolytes?🤔
I realize this thread is old, but was wondering how you are doing.
I have been seeing a neurologist for several matters, including phantom smells, recent phantom taste, and abnormal smell disorder (my tests results at the ENT were low, though, I think my smell is fine), I plan to start scent training, after my GP suggested it, though. The ENT says it’s a result of post covid syndrome, but I’ve had the phantom smells for many years, before covid. Not the taste issue though.
I don’t have migraines and rarely ever get a headache. Never have. I have wondered if it’s Functional. My mom has had the same symptoms for most of her life. And, my father has been diagnosed with Conversion disorder regarding movement and vision issues.
My neurologist seems lost in this smell/taste thing. Just curious if there have been any new discoveries. I read about an injection in the neck for taste disorder. Today, the taste issue is better! But, water smells like fabric softener. 🥴
Sharing from the heart
I feel my ship is sinking. 
Shirleysy11
FND & MS
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