Just wanted to share my current WIP ☺️
Pretty happy with how this is going so far!
Hoping to have it finished tomorrow night 🤞🏻
It’s taken a bit of time to get to this point as my chronic illnesses have been in full flare mode, so I’m extra proud that I’ve managed this!
Hi!
I’m new here and looking for some guidance, I think?
Content warning: descriptive details of my symptoms below!
I was diagnosed with FND back in July 2024 and have always suffered with severe tremors, lack of limb/muscle control and falls.
I’ve had numerous falls where, once on the floor, it feels like each limb is weighted and I cannot move it. However, I have never lost consciousness or had convulsions - until last Wednesday.
I have POTS as well, amongst other things and I am definitely having a full symptom flare.
I was just doing a short walk from the kitchen to the lounge (using the wall for support) and got to the doorway, where my legs promptly gave out from beneath me.
A family member saw this and ran to help me up and managed to get me sitting upright, leaning against the cat tree. I remember having a feeling like I was going to be sick but I wasn’t nauseous? And started gagging. While everyone scrambled to find something for me to be sick in, I remember somewhat sliding down the cat tree, further and further and almost “drifting” until I faceplanted into a bag and started convulsing.
My eyes were closed but “jittering” and I was able to hear everyone around me but could not focus on what was being said and my brain was almost on a loop, repeating the same thing over and over. I could not move. My breathing was rapid and shallow. Whilst laying there, I do recall having a light get brighter above me? Like someone shining a torch into my eyes, except no one was.
When I came around, I had my partner asking me questions and I couldn’t vocalise/make a sound/speak. It took several minutes to be able to stutter something out and even then, that was a challenge.
I’ve been exceptionally weak ever since and have either needed my wheelchair or my partner to support me while I walk (or try to). I look like a baby elephant taking its first steps.
Straight after these episodes, I’m usually quite dazed and out of it. Almost sleepy but not feeling tired?
I’ve had several basically every day since Wednesday night last week. Some more severe than others - the minor ones seem to happen whilst I’ve been asleep. I wake up and I’m trying to vocalise or move and I can’t. My muscles are all stiffened and I cannot straighten my limbs. I try to open my eyes but they roll back and “jitter” again, this is a rinse and repeat process until I eventually can open my eyes.
I called my neurologist and was apparently instructed to go to ED (which I have 0 recollection of) and I have so many “holes” in my memory. Mostly, I don’t remember falling asleep or talking to someone.
I have got an appointment with my neuro on Tuesday next week.
I’ve never experienced this before and I don’t know what to expect? What to do? I feel slightly lost.
I’m already under significant stress and this is definitely adding to it. I have numerous medical appointments weekly but have had to cancel them all because I don’t feel safe to drive.
Basically, has anyone got experience with this? How did you handle it/what did you do? Does this sound familiar?
Thank you for your time and for reading all that - I apologise as I don’t know how to condense it 😬