Hi to all… so glad I’ve come across this forum! It’s finally helped me understand & somewhat accept my diagnosis. I will try and keep it brief…
I had a small gynaecological procedure in 2011 and upon waking from the GA, I was not the same. My whole world has been turned upside down since then. Closed my business, mum moved in with us to help look after kids for the first year & hubby changed jobs to be able to take me to my doc appointments… of which there were many. Did all the relevant tests, xrays, mri’s, specialist appt’s with ENT, opthalmology, audiology, neurosurgeon, 2 neurologists, vestibular therapy and more…
Was found to have 2 prolapsed discs in my cervical spine, and was also diagnosed with VM by Neurologist, however didn’t accept the dx. I was convinced the GA caused me brain damage. At that time, I didn’t know anything about VM.
Initial symptoms progressively got worse within 2 weeks and were constant for about 2 years, followed now by intermittent episodes of varying duration, intensity and symptoms. I have permanent dizziness and tinnitus in between episodes.
My symptoms include…
Severe vertigo, preventing sleep (tumbling, flying, whirling, rocking, floating, but never spinning);
Severe leg weakness/paralysis - dependant on the severity of vertigo;
Dizziness; Tinnitus; Fatigue; Extreme sensitivity to movement, light and noise;
Nystagmus; Eye lag & eyelid droop; ( looks like i’m drugged) Eyes feeling squeezed & not able to look up, down, left and right,
Sweats; Feeling faint; Top of head pressure (magneto head); Slurred speech; Croaky voice; Aura-flashing lights… I thought I was going mad in my first few weeks, felt quite scared and as a result was taken to Emergency twice where I was told I had VN or Labyrinthitis.
Have tried meds… amytriptiline and verapamil - was not able to tolerate these.
Consulted with chiro’s, physio’s, osteo’s, who were all convinced my issues were a result of cervical prolapsed discs as I also had head & neck pain at times. However, my episodes still continue…
I’m currently in my 9th week with severe episode. Was completely debilitated for 7 weeks and although tapering off now very slowly, symptoms can be easily triggered, esp with eye movement, or standing/ doing light activities at home, so feel like I get episodes within episodes! I end up in bed everyday as i’m still not able to go one full day without symptoms exacerbating and feelings of extreme fatigue…
Can anyone relate to these type of episodes??
Fast track to today… Had another diagnosis last week of VM from another neurologist. I don’t feel like I tell the whole story as they only ask the main questions! Was prescribed pizitofen. Side effects; piercing ringing in ears, fullness in ears, nausea & headache… will stop taking as I feel terrible.
Please reach out if you’re experiencing similar type episodes… (I still have yet to read lots of your stories due to current sensitivities).
Also, what do you find helps with the pressure on top of head, feeling like you want to drop to the floor?
Are you all very sensitive in between episodes? I find that I no longer am sensitive to things I use to be.
Any positive stories with natural therapies please?
Your responses will be so much appreciated…
Thanks so much for this opportunity!