I was diagnosed with FND around 4 years ago but this year my symptoms seem to have worsened. Although I have experienced facial pain, headaches and slurred speech as this is how my condition presents itself. However, this year, I have had four episodes with my slurred speech going on from 1 week to 2 or 3 weeks. My condition is triggered by humidity, stress, tiredness, hunger and the cold. Once the cold temperatures hit my face, it causes pain, headaches and then my speech becomes slurred.
I have now been off work for nearly 2 weeks with the slurred speech and intermittent headaches at the back and left side of my head along with pain on the left side of my face including my eye.
Has anyone else experienced this?
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AngieB68
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I think it's too easy to dismiss all our medical conditions as FND once a diagnosis has been given, especially if symptoms are similar ie. headaches but they could be caused by a completely separate issue.
Keeping your face and eye in mind have you considered trigeminal neuralgia?
Thank you for your response. I am waiting to be seen by neurology again however this was my presentation which resulted in the diagnosis of FND however it has worsened with alot more episodes and the spread of pain. I am hoping that it can be remedied.
Hi AngieB68 I too suffer with left sided facial paralysis and migraines, photophobia and phono-phobia, every single day although my speech is good. I have been like this since 2018 and some months worse than others. Alls I will say is it’s not FND and fed up being fobbed off by Neuro who don’t care. Just try and go at your own pace don’t get frustrated with yourself. It is not our fault that we are not diagnosed properly as there is way too much of this going on. Try and stay positive sending you a virtual hug X
AngieB68 I'm very sorry you are experiencing this intensely now. I've experienced all kinds of bizarre sensations in my head and facial pain for the past year, but not slurred speech. I think my case is a little different but I wanted to write to share that in my case I think it's a number of injuries to my head during childhood/teens that only now I've become aware of, believe it or not. I'd dis-associated physically with my head, neck, chest following an accident very young, and became numb. The numbness is thawing now. Something for people to consider perhaps. I support the reply from "8756".
Hi, could Chronic Pain also play a part. We all feel the sensations of cold on our face as a discomfort but with CRPS its intensified (like a dial being turned up). Maybe some therapy for this could help.Just a thought, hugs xx
I would encourage you to document the progression of your symptoms daily for a month or two. I was diagnosed with FND with these symptoms and more, but when I documented the progression (and the fact for me they were unilateral and switched sides), I was then diagnosed with chronic migraine with aura by a different neurologist.
Migraine can present with many different symptoms, so that may be a possibility in your case. I was recommended supplements by my neurologist, which have actually helped. Medicines are available too.
This might not be the case for you, but document your symptoms and perhaps get a second opinion.
Hello AngieB68. I experience Dysarthria -poor pronunciation of words, change in speed during talking and change of rhythm during talking. It is unnerving to experience this change. (I finally have a word) The other symptoms are brain fog, a form of trigeminal neuralgia of face + scull, chronic pain from spine out, extreme light sensitivity, migraine, silent migraine and dabilitating vertigo.
The dysarthria started slow and sporadic two yrs ago and is worse when i'm tired physically or mentally. My first migraine started on the left side in cluding pain in my left eye. I have to many triggers for my symptoms to list. I was diagnosted with FND a year ago by a neurologist and awaiting to see another specialist in the FND field.
The symptoms were the hardest for me to describe, explaining my symptom experience to make it relatable. A symptom can feel like a different exerience to five different people but they are relatable in a way to each other. I look at each symptom as an individual so I can manage it one at a time. A diagnosis provides guidance, a support group with others who hopefully share a relatable experience of a symptom and hopefully a solution to manage symptoms well.
I manage the triggers I can, the best I can. I pace myself and use the tools in my toolbox to work on my mental health, keep physical health how I can and acknowledge my emotions. My tools are few but support me at the worst of times. - This is my intention. (Intentions are a guiding principle, based on values.)
Please during this time of waiting for answers - have compassion for yourself.
"Taking care of yourself doesn't mean 'me first', it means 'me too'.
Interesting, my triggers are multiple, some manageable but others not so easy to manage especially the cold and humidity. I will have to have more discussions about my change in symptoms with my neurologists.
have you tried when it’s cold to cover your face with a scarf to heat up the air going into the body and also a second thing which you can buy from Amazon and its a splint type thing for the jaw sold as a help to stop snoring. I have used both with a good result for what I call faceache I haven’t found a pain killer in terms of meds that works. These things I learned from a physio and when you have the jaw splint on you do open and closeing of the mouth and I have found it has made the muscles in my face and jaw stronger, the third exercise was put the tip of the tongue to the roof of the mouth and use this to apply pressure, this one I have to confess is my favourite because it feels like a facial massage. Now these exercises are recommended four times a day and to be built up from ten mins to an hour then stop, apart from the tongue which for me is just random as required. I should also add that it was the dentist that showed me that one when my mouth slammed shut in spasm with the dental instruments stuck in my mouth
Thank you for your advise eviedotty especially with the scarf around the face however a splint wouldn't really help me as the pain I get is from the cold. I can move my jaw and everything fine, its just the pain.
For headaches was Flexeril at first(I have issues with joints , back , hips & neck too) then they placed me on migraine meds call sumpatritan . Migraine med make it to were I can relax and finally sleep. But the speech all I try to do is give my mind time to catch up or rest and not use too much of my communication until it's absolutely necessary. If it is extremely bad I just write what I want to say down for them to read. Plus ppl claim they know what I am about to say or trying to say and when they are right it is liberating. Hot situation just try not to let myself over heat is the only advice I have for that. I really do hope things get better for you cause trying to figure out what work is definitely a huge task to coping with it all
Hi I also have this my whole face feels like I've been beat up, with left side eye/ear/back of head pain, sensitive to light and noise it actually hurts and I feel confused when both light & sound are too much. I wear sunglasses on sunny/bright days even in winter and for facial pain I use a warm towel and gentle massage it does help a little but quiet dark room is my only option as times.
Hi! My husband has FND, and has the same intermittent pain on the left side/back of his head as you’ve described. He also has headaches, and uses two prescription meds to effectively manage them: Qulipta (taken daily), and Ubrelvy (taken as needed when a headache breaks thru). Hope this is helpful!
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