Muscle movements upwards

[Chandalierglass]

I'm.not sure I have FND. Muscles move involuntarily up.my back neck and head. Trying to balance. I've got tinnitus. Alll fter using olive oil in right ear in 2020 to soften wax. Not stopped ever. Issues with balance but never dizzy. More like there is a boat inside me! My brain can often be calculating the ground and my right side no longer easily automatically balancing. MRI brain ok. Spine arthritis neck and lumbar. GP and neurologist say within normal range. However my symptoms persist. Nobody can help so far. Anyone else got these symptoms? Thanks

[Lady4]

I found this:Neck spasms are involuntary contractions of the muscles in the neck region. They commonly occur due to muscle strain, poor posture, stress, or underlying medical conditions. To effectively manage neck spasms, your healthcare provider may recommend a combination of treatments such as stretching exercises, heat therapy, pain medications, and physical therapy.

Understanding the causes of, symptoms of, and available treatment options for neck spasms can empower individuals to alleviate them for optimal neck function and comfort. If you or a loved one experiences neck spasms or pain, contact your healthcare provider for a diagnosis and an appropriate plan of care.

Any heightened stress factors around yhis time?

[Chandalierglass in reply to Lady4]

Thanks for that Lady4. Much appreciated

[210272]

Hi Chandalierglass,

Tom Plender (an advocate for people with FND) also had back spasms so there may be something about that which is connected with FND and involuntary movements. Tinnitus is beastly so I am sorry to hear you have that and hope you can access effective treatment soon. I used white noise from the internet and when I mentioned that to my old neuro-otologist she said it was being used successfully in some clinics.

Although some neurologists understand balance and motion sensation conditions, many don't so I would ask for a referral to neuro-otology or audio vestibular medicine to address those. I don't know where you live but in the UK the waiting lists are fairly long but if you can go at short notice they sometimes keep a list of people who are willing to attend if someone else cancels. Getting a clear diagnosis is usually the first step in accessing the treatments you need and deserve.

The boat analogy is often used by people with Mal de Debarquement Syndrome (MdDS - which I had) and Vestibular Migraine (which I still have occasionally) and I thought the first image here pinterest.com/pin/323414816... captured it really well.

Lots of people with balance conditions (including MdDS) have been - and, sadly, continue to be - diagnosed with FND and in some cases the FND diagnosis has been made very, very badly. If you have enough spoons to listen to the Neurology Journal FND Roundtable Podcasts and read the comments from the one they did on 4th August you'll see a classic example of how not to diagnose FND.

If you have been diagnosed with FND and are not sure it's the right diagnosis for you, you can request the rationale used by the person who diagnosed you. This is meant to be given during the consultation or, at the very least, in the clinical letter following the dx. So if that hasn't happened, or the rationale doesn't make sense to you, I would be wary of accepting this dx.

[Chandalierglass in reply to 210272]

Hello Tom, thanks for your very detailed and knowledgeable reply. My boat sensation is all internal. As though I'm a lava lamp! I've been to a private clinic here in UK. During lockdown who were 'nt all that good. I was obsessed with the tinnitus and failed to mention other more serious symptoms. Later after lockdown got referred to NHS who just turned out to be a very young physio who never came across my symptoms. Gave me eye stability exercises. My daughter recently took an interest after a physio on my spine exacerbated symptoms. Hence the idea of FND. But in my mind its no match.. My symptoms don't tally. But of course I'm willing to look at everything. I really need to go back the vestibular route. Did you find anything helped your boat sensations? Love to hear more from you. Most grateful 🙏

[210272 in reply to Chandalierglass]

Hi Chandalierglass,

You're welcome but I'm not Tom and I don't think he's part of this hub. I chatted with him when he was interviewed about FND and we have some common ground but he doesn't want to spread himself too thin while he's still recovering which may be why he hasn't responded to an email I sent him recently.

Tinnitus can do that to a person but it's the consultant's job to ask you about other symptoms so I feel that private clinic let you down (who did you see, if you don't mind me asking? You can let me know via the chat if you don't want to name names here). At the very least they should have told you that there's a UK biobank for people with tinnitus. I wouldn't expect a young physio to be very experienced in these symptoms but the consultant should have been and should have taken more of a history. Gaze stability exercises can help some people with balance/motion sensation conditions but they are certainly not a 'one size fits all'. There is some research about gaze stability and FND but I don't think they came to any unifying conclusions although it's a while since I read about it.

I'm sorry to hear about the other physio exacerbating symptoms for you but am not sure how your daughter made the connection between that and FND (great that she took an interest tho') since FND is a neuropsychiatric condition in which (according to Perez) patients precipitate/perpetuate their symptoms through maladaptive cognition, behaviours etc etc.

You seem to be on the right lines with going the vestibular route and getting a clear diagnosis (or diagnoses - there's often more than one pathology going on) is a good place to start. VeDA has some great resources although they are not always able to keep them up to date since they don't get nearly enough funding or support. My boaty mc boat face symptoms were caused by Mal de Debarquement Syndrome (MdDS, which is usually triggered by disembarkation after exposure to passive motion and is also motion mediated in that symptom resolve, temporarily, when we're re-exposed to passive motion) and, thankfully, I am now in remission from that. If I do get another episode, which I think is unlikely, I have the option of going to Antwerp to donate my data via their clinical trial and trial their treatment at the same time. For reasons I will never understand, there are powerful profs (eg Jon Stone) who think that everyone with MdDS has FND *sigh*.

[Corgi_Gal]

Doesn't sound like FND. Sounds like you effed up your ears by putting olive oil in them. Putting any oils or liquids in your ears can irritate the sensitive inner workings of the ear and cause tinnitus and balance problems. You basically created an ear wax sludge in your ears. Have you had vestibular testing? Seen an ENT?

[Chandalierglass in reply to Corgi_Gal]

Hi Corgi Girl yes that's my opinion too. ENT consultant didn't give any credence to that theory. Although it's pretty remarkable timing that it happened after a good dose of oil in my ear. I need to go back. Need re-evaluation for vestibular. Thanks for your input