FND and Hyperacaussis

[tatiyana]

Hi, does anyone else suffer with these 2. i have recently spent the last 2 weeks constantly at AnE with one fall after another, the sad part is my so called friends saying, she was well drunk!! now i just dont go out,. my illnesses give of the look that im drunk and im fed up with not having any understanding friends. feeling so alone and even my doctor dosent care... i hate this life i just want it over

[SheriAUS]

Yes, I have FND and hyperacusis, with my hyperaucusis being a core trigger for verbal and motor tics. Sound dampening headphones are my best friends. (Word finding problems and spelling diffficulites also present)

[Junebeatle]

Hi,

I understand your feelings to have this illness with no treatment is utterly heartbreaking & can lead to depression. Anyone who loses their physical self to uncontrollable neurological symptoms is going to have those thoughts and it’s tough to accept a “new” normal. My counselor says that MS, Parkinson’s, chronic fatigue folks think those same things, but we go on anyways because we’re worth it.

I’ve lived with this for 11 years highly functioning until the past year when it has become disabling & painful. I would suggest you make friends who are understanding since no one should make fun of disease if they truly care for you. My pattern would re-mit and flare over the years. I did have hyper-sensitivity to noise that would cause my symptoms to flare (not balance issues though)

What has helped me tremendously is Transcranial magnetic stimulation on both the left & ride side of the frontal lobe-I needed 66 rounds of treatment. Doing a plant based keto diet is further reducing muscle spasms & neuropathy. I do take Valium to sleep every night for 1 year now because my shaking would wake me & the lack of sleep was driving me over the edge...

Maybe look into TMS, it can at the very least get rid of the not wanting to live feelings. Hang in there! You’re worth it, it might not get better but you can learn tips or tricks to manage yours.

[M3rry]

My (almost) hyperaccusis is (probably) linked to Fibromyalgia - one of the courses on managing it mentioned overwhelming sensory inputs (light, sound, flavour, touch etc) being part of it.

How I try to manage it is to slowly (over the day) increase the volume of sounds in my home. Things like turning on a radio at low volume then adding the TV on top, slowly turning up the volumes until I am able to watch action films without flinching at the explosions.

Things have changed since FND - sudden sounds are more painful, night time sounds are 'louder'. But in general and 'so far' my increasing sounds slowly is still working.