Really feels like i have gone a step backwards☹☹☹

After such a good week at work, bank holiday monday i experienced something different. I was studying on monday and noticed that i was struggling to find the words i wanted and also found it difficult to write. I decided to take a break, i noticed that my speech started to deteriorate but this time on my right side when it was always my left. I also felt a sharp pain in the back of my head and had to take medication. Shortly afterwards i realised that i was unable to speak at all as both sides of my mouth was affected. Also my face hurt alot especially my check bones.

Although it has calmed down but right side is still affected and my face hurts on that side. I have contacted my speech therapist who has given me advice on relaxing and retraining my brain by saying the months of the year and the days of the week. This has helped but i have to speak slowly to make sure that my speech isn't affectef again. Gladly my speech therapist has given me an appointment for 2nd may as she brought it foward from July.

I am a bit concerned about these changes but hope there are someanswers.

18 Replies

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  • Hi Angela,

    Unfortunately it could be caused by many things. Frustrating I know.

    I have issues with speech and forgetting words in a sentence. I have been a researcher all my life so find it so difficult to just remember words when I'm in the middle of searching, things that I have worked with and talked about for years are just a memory blank.

    I find if I leave it for a while it might come back to me. I suppose you stress when you forget words that you know you know, so that might make things worse.

    Today I had an appointment and the person was asking me to do things physically for assessment but asking questions at the same time. I could do one or the other but not both at once.

    I have also had pain like you are describing.

    These may or may not be related to FND.

    Pain in the cheek may be from the trigeminal nerve which is a large nerve on both sides of the face, kinda around your ears and spreading out up and down.

    You also have glands there -

    One is the parotid gland it controls saliva production and moistness to your eyes. It is in front of both ears.

    I know this because I have Sjögren's syndrome an autoimmune disease and these glands affect these areas. They can also cause pain.

    You also have the other glands in the mouth such as submandibular - below your jaw and sublingual below the tongue.

    They all provide saliva to breakdown food etc.

    Sometimes these glands can get blocked because of infection such as a cold and you can get pain and or swelling, from your cheek down to your neck.

    I had sinusitis recently and major pain from my ear to the side of my neck but no swelling.

    So it could be a nerve issue related to FND

    Or that it's a symptom of overdoing it

    Or a blocked gland

    Or something else as I am not a neurologist but these are just my thoughts 🙁

    The word thing is really annoying and I am battling that right now too. I want to write but forget key words.

    I hope your symptoms improve soon. It's such a balancing act of wanting to do things but not overdoing it.

    Good luck with your speech therapist. We are all on the search for answers 😊

  • Sinusitis. That. Suffered from it for years. Or so I thought. Now I'm beginning to believe it's a manifestation of the FND. A form of migraine.

    Taking an antihistamine has helped me over the years. I realize now that what the antihistamine is actually doing is sedating me, and thereby lowering my stress/anxiety/panic and it is THAT that suppresses the FND eruption.

  • It's all pieces of one giant puzzle 😬

  • Yes. Exactly.

  • I had sinusitis recently also and thought that i was getting bells palsy again but this was ruled out.

  • Thank you do much for your experience and words. The pain does sound similar and i will ask tbe speech therapist about this as she is very good.

  • Hi AngelaB , I too struggle with remembering even when thinking to myself words are wrong, I know they are wrong but right word either not there or comes later back on it's own, like others on here I am unable to do two things at the same time, it was one of the things I noticed first apart from unending pain, I get frustrated as I had brilliant memory (even if I say so myself) now it's just a struggle to remember my own routine ex teeth, washing, changing clothes. Am struggling today but maybe resting will help you, I hope so for you and thinking of you (when I remember) 😂 Best wishes Lisa-anne

  • AngelaB-1968

    I am just proud of you for getting out there and giving it a go. I know that the dysfunction may accompany you along the way, but you recognized it and sought help.

    This is a tough fight. Adjustments get made. My big hope is it does not take you backwards. We all here to cheer for you however you go about it. Just little steps are such a big win. Rest up and do what you can.

    Take care of yourself and listen to what body is saying.

    Dan / Seattle

  • Those sound awfully like stroke symptoms. But apparently they weren't? Terrifying!

    I had what I thought was a stroke recently. Went to the ER. It was an ocular migraine. But that's when I discovered that the sinusitis was mebbe not sinusitis and was a form of migraine!

  • Hmmm...migraine...my other problem too. Not fun this duff brain lark.

    It is now being described by some neurologists as a 'relapsing-remitting' neurological condition. It doesn't show up on scans...cannot be tested for...has to be diagnosed by clinical observation of description of symptoms...there is no real idea within the medical profession why it happens...is it vascular? Is it hormonal? Is it to do with electrical signalling like epilepsy? It results in a whole variey of symptoms that vary from person to person - from stomach pain to head pain, photophobia to sonophobia, nausea and vomiting, weakness and partial paralysis. It can be the source of intermittent or almost continuous disability. Doctors treat the symptoms, usually with drugs prescribed for other conditions that have incidentally been discovered to help a bit, but as there is no known causal factor, apart from the existence in some people of identified trigeers like red wine, caffeine or cheese, it is all a bit of guesswork really.

    Sound familiar anyone?

    It hardly ever results in anyone telling you it is all in your head, or suggesting a psychiatric referral or CBT, but then no-one gets antsy if anyone suggests it might be in any way stress related.

    I find the similarities in situation and difference in reaction to a diagnosis of FND and migraine amongst both the medical, patient and general community most interesting, especially given that little is really understood about either of them, by any of those groups...

  • Hey!! My symptoms have also changed along with the usual earache headache slurred speech and mobility issues and weakness and pain in my left arm I have developed an awful pain in my left breast, I have seen my doctor (my mom is recovering from b.cancer) as I was so worried and she said all is normal its my FND !

    I feel like every problem I have they now fob it off to FND !!

  • I would ask for a second opinion as everything cant be related!

  • Yes Im going to as Im worried x

  • Good for you. Don't just take the answers they give you as its your health.

  • I also get the chest pain. It goes from the middle of my breastbone and spreads a little to the left. It almost feels like a cramp. My doc is aware of it and not concerned. It comes at any time. It can be after exertion or it can happen when I'm sitting watching TV. It really painful though.

  • I would be concerned. I dont write off everything to fnsd. They need to investigate!

  • Thanks, yeah I don't think chest pain should ever be ignored. I'm surprised at the amount of things that I have stated that have been ignored

  • I think i am quite lucky as the professionals i am under tend to investigate alot as they said they do not know enough about the condition. They have seen a few with the condition but we all have different symptoms.

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