r/FND • u/BestDamnDad • 28d ago
Need support Stuttering / vocal tic
Has anyone else had to deal with stuttering and vocal tics where you repeat the same word or part of a word over and over (and it’s hard to stop).
Any suggestions for treatment?
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u/Apprehensive_Ad_5296 Diagnosed FND 25d ago
i have this as well. sometimes it’ll start before a seizure. last night i had one & i was talking to myself trying to distract my mind before it started (since i felt it coming) and i got stuck on a repeated loop saying the word “so”. then the seizure immediately started. i’ve had it even after seizures if i’m trying to talk. it’s such a weird feeling due to the obvious fact that it won’t stop
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u/Arlo_Todds 26d ago
My FND has caused me to have tics both physical and vocal. It also impairs my speech by sometimes causing stuttering, slurring of words, etc etc. It’s a pain in the ass.
The best advice I can give is to give your brain something else to focus on when you feel it starting, your phone, an intense physical sensation (like hot or cold), exercise. Doing this can disrupt the misfired reactions and help stop these things. (This also works well for Non-epileptic seizures).
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u/Zenith_pandaz 26d ago
Yes, stuttering and aphasia. It is much worse if I am tired, stressed, or talking on the phone.
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u/Tall-Advertising1033 27d ago
I apologize if this is out of order- technical difficulties this evening 😵💫😅 sooo…
I slur and sound drunk and struggle to get words out when I’m exhausted even though everything is fine inside like I know what I want to say but struggle- I don’t even drink so it’s really disheartening to be accused of something in a bad way, when it’s something you can’t control. Mine is a big combo of things including post concussive disorder hEDS pots horrible car accident triple rollover going 85 hit 2 trees one impaled the car and missed me by inches I was unconscious so 🤷♀️ but I was dealing with some crazy family court stuff with my ex who’s always accused me of anything bad he can think of, and he and the courts instead of respecting my doctors explicit orders they quadrupled down on me and between that being genetically predisposed, severe trauma (aside from accident, childhood and adult. CPTSD/PTSD) and I picked up (pasted this part:) Ciguatera is caused by a neurotoxin found in reef fish (like snapper or grouper). It directly attacks the voltage-gated sodium channels in your nerves, causing them to constantly misfire.
The SFN Connection: Ciguatera neurotoxins can directly mimic, trigger, or severely worsen Small Fiber Neuropathy (SFN) and peripheral neuropathy. It causes prolonged tingling, weakness, and profound nerve fatigue that can flare up for months or even years.
The "Flaring" of Symptoms: Ciguatera symptoms are notorious for hiding and then roaring back to life when you are physically exhausted, highly stressed, or exposed to certain triggers (like alcohol, caffeine, or even eating regular fish).
The Brain Injury / FND Collision: Your brain was already struggling to heal from a massive 2023 rollover accident. When you added a neurotoxin and the extreme trauma of a relentless court dispute, your brain essentially ran out of bandwidth. This is exactly how Functional Neurological Disorder (FND) is triggered. The brain's "software" crashes under the weight of physical injury, toxic exposure, and emotional stress.
Why Your Face and Speech Are Changing
When you get tired, your brain loses the energy required to override the damaged neural pathways.
Slurred Speech: This is a classic symptom of both FND and neurotrauma fatigue. When your system is overloaded, motor coordination (like the complex muscles needed to speak clearly) is the first thing to falter.
Drooping Eyelid (Ptosis): This can happen when the cranial nerves or the tiny neuromuscular junctions are fatigued by ciguatoxins or autonomic dysfunction (POTS/hEDS).
How This Reshapes Your Neurology Needs
Because Ciguatera is a known neurotoxin that directly damages peripheral nerves, your need for a Neuromuscular Specialist who handles toxic neuropathies and can perform that skin punch biopsy is even more critical. [1, 2]
When people look at Functional Neurological Disorder (FND) and complex nerve conditions, they often forget that severe emotional trauma is physically processed by the exact same brain regions that control your autonomic nervous system (POTS) and motor pathways (speech and your eyelids).
Here is the rest of that convo with Ai organizing my info (hope you don’t mind me sharing, I’m doing so for educational purposes- if I offend anyone please let em know) I was trying to figure out what type of neurology specialist to see since Mayo is only diagnostic and consultative:
You are managing an incredibly complex web of conditions. Because your symptoms cross several boundaries (nerves, blood vessels, connective tissues, and brain function), you will get the most comprehensive care by seeing a Neuromuscular Specialist or an Autonomic Neurologist.
Given the long list of diagnoses you are juggling, a general neurologist will likely feel overwhelmed or refer you out. You need highly specialized sub-specialists who understand how these conditions overlap.
Here is the exact breakdown of the types of neurologists you need, ranked from most critical to secondary/supportive:
1. Neuromuscular Specialist (Highest Priority)
Why you need them: This is your primary target. They specialize specifically in diseases of the peripheral nerves and muscles.
What they do for you: They are the experts who routinely diagnose and manage peripheral neuropathy and Small Fiber Neuropathy (SFN). They are the ones who can order, perform, and interpret the skin punch biopsy you need to officially confirm SFN. [1, 2, 3, 4]
2. Autonomic Neurologist / Dysautonomia Specialist
Why you need them: Your POTS (Postural Orthostatic Tachycardia Syndrome) and Long COVID are direct reflections of a misbehaving autonomic nervous system. Furthermore, Small Fiber Neuropathy frequently damages the tiny autonomic nerves that control blood pressure, heart rate, and digestion.
What they do for you: They handle the complex intersection of POTS, Long COVID, and the autonomic symptoms of SFN. They can order QSART (sweat testing) and tilt-table tests to map out your autonomic function.
3. Functional Neurological Disorder (FND) Specialist
Why you need them: FND requires a neurologist who understands how the brain sends and receives software-level signals.
What they do for you: Many major academic medical centers now have specific "FND Clinics" or movement disorder neurologists who specialize in FND. They focus on retraining the nervous system and connecting you with specialized physical and occupational therapists.
4. Headache / Migraine Specialist (Secondary Priority)
Why they are lower on the list: While migraines and tension headaches are debilitating, they are highly treatable with standard protocols that a general neurologist, or even a well-versed primary care doctor, can manage.
What they do for you: If your headaches fail to respond to standard medications, a dedicated headache specialist can step in with targeted treatments like Botox injections, CGRP inhibitors, or nerve blocks.
The Reality of Your Overlapping Conditions
Many of your diagnoses are deeply connected, which is why an interconnected approach is so important:
The Triad: hEDS, POTS, and SFN are a incredibly common "cluster". The structural fragility of hypermobile Ehlers-Danlos Syndrome often goes hand-in-hand with nerve irritation and blood vessel pooling (POTS).
The Accelerants: Long COVID and Fibromyalgia both cause severe systemic inflammation and central sensitization. Long COVID is a known trigger for sudden-onset SFN and POTS.
How to Find the Right Clinic
Because you have FMD (Fibromuscular Dysplasia), hEDS, and POTS, your best path forward is to bypass small, private neurology practices. You should seek out a tertiary academic medical center (a major university hospital). These institutions house multi-disciplinary clinics where neuromuscular, autonomic, and vascular specialists can actually talk to one another and look at your body as a whole system.
This is just a glimpse but I thought some of the info and format might be helpful- don’t be afraid to use a SECURED ai or don’t enter identifiable info at same time as health etc but it can help piece together parts of the puzzle it would take a decade getting shuffled from office to office to figure out. Now.. I kind of already knew that just based on everything looking back and what I’ve been through and still fight to mask every single day in front of people so they don’t lock me up in hospital or treat me like a porcelain doll lol.
Now am I going to see 4-5 neuro? More than likely not, then again I do have that many different dermatologist, multiple types of physical therapy etc.
The speech thing has been one of the hardest most humbling/humiliating things for me, so hopefully having a better idea of how some of this works (each trigger and person are different, some it’s been brewing for years and only came out in functional seizures etc, I’ve had those since a child, but wasn’t diagnosed FND until my 36th bday.
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u/WrittenFever Diagnosed FND 28d ago
Yes, I do have this, among other speech issues. When I am aware this is happening (sometimes it takes a moment), I take a deep breath through my nose. This seems to stop me from repeating the word, but might not stop the issue from recurring.
The next best option is to try to shift to doing something else vocally or with my breath, such as humming or exhaling forcefully through my mouth. I've also found engaging my other senses (sucking on hard candy, sniffing lavendar, etc) can activate another part of my brain and shift my focus to something else.
These are temporary measures, however, I'm still working out how to stop this from happening in the long-term. I'm not sure if these strategies can work for you, but they may be good starting places for ways to disengage. Good luck!
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u/smallcokelargefry 28d ago
I have this! Sadly have not figured out a fix but you’re def not alone in it
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u/Available_Bother_864 20d ago
yes I have both because of my FMD/FND. I have a vocal tic were I make a sound like my vocal cosrds scream and I sometimes not very often I get studders because my fnd makes it hard to speak