Hi, new member here I wonder if anyone can advise on whether it sounds like I possibly have dysautonomia. I understand nobody can offer medical advice and it's just opinions.
I've been off work for a couple of months now and I've had appointments with cardiologists and neurologists who have all found nothing sinister. Heart looks healthy with an echo and ECG. I had a clean emg on nerves and clean mri scan with neurology.
I first started having mild problems over 2 years ago when I noticed problems with fine motor skills. My hands weren't quite right and then muscles were twitching all over. Hence the neuro check up.
But 3 months ago I started getting dizzy spells. Just moments of being off balance at work. Then one day I was at a football game with my son and at half time I got up to go the concourse and it felt like I was about to pass out. Very faint, could barely walk. We had to leave and I struggled to walk to get a taxi. I ended up in A and E but was given the all clear after many tests.
Since then I've tried to return to work twice. At first I'm ok but over time I can feel myself getting worse. Dizziness to start, then comes the faintness it's really bizarre. If I don't act quickly by getting home and lying down I can become really ill for days. My body will hate being upright or on my feet for any time. Climbing stairs will cause my heart to thump out my chest. Eating anything high in carbs will raise my pulse over 100 and I'll be dizzy constantly.
What's strange is that once recovered I can be 90% better. I'm quite physically fit and could run a few miles today and makes me feel guilty for being off work.
I've come to realise some triggers. Crowds make me dizzy, flouresent lights and video games aren't good. (work is full of flouresent lights). Stress is a no go. My GP mentioned vestibular migraines and it does explain some things but not all.
I sometimes can't stand and talk at the same time. I get this horrible feeling like I have a dial that controls brain activity and someone suddenly turns it down. It's weird why the combination of standing and talking can do this.
One time I was walking the dog. Feeling great listening to music on my earphones. Then suddenly I felt my heart racing. I took my pulse and it was 140 and I was going dizzy and faint. It was so bad I had to call to get picked up as I couldn't put one foot in front of the other. What I noted that just before the episode the song I was listening to was high tempo. the type that gets adrenaline going. I no longer listen to loud music 😔
I've taken my blood pressure at home many times when symptomatic and when not and never detected a fall even though it feels like it's low.
I have a holster monitor ECG to wear next week for 24hrs to try and detect abnormal rhythms so maybe that will show something. I do get a lot of palpitations and heart racing at odd times. Sometimes chest burning.
Some days I've felt breathless for no reason. Like there's not enough oxygen in the air and I have to take big gasps now and then. Quite a horrible feeling.
Oh, I also have problems swallowing sometimes especially dry snacky foods. I'm constantly coughing up food (sorry) which isn't going down the right way. It feels to me like a coordination issue rather than weakness. Same as with my hands.
I could probably write a list of other odd but mild symptoms but these are the worst and most troublesome.
Sorry for the ramblings I just don't know what to do next. Anxiety has been suggested which I'm working on but I was fine before all this started and some things never go away even when I'm perfectly calm.
So... Do i sound like possible dysautonomia?
Thanks for your time.