Hi all,
Get ready for an essay as im desperate.
Im 35 so about roughly in my early 20s developed dizzys in my sleep. It would wake me. Closed eyes would make it worse. Yrs passed i decided to see a neurologist. Head scans were fine was told it was bppv. Few urs later i developed graves disease.. the torment after i got radio iodine and was put on thyroxine for ever. Keep in mind i have thallesemia traint so iron was and is always low ( eat liver to help it as of late ) in 2015 i had two terryfying bppv episodes once at the salon and the other was as i was laying head down to rest. I developed ptsd absolute terror panic attacks that were crippling and didnt leave the house for 2 yrs as i was afraid of bppv. I saw an ent dissmissed me said it was anxiety. I saw a neurophysiotherapist for 9 months to help my balance and did mant epleys. I some how got to 50 %. I still could shake the anxiety and fear im a highly anxious person with health anxiety but this was real. The came ectopic beats fierce out od no where. Thumps thuds pauses flutters you name it i got it. I was back at 0% i was terrified. I got holters stress test echos all normal but cardiologist said atrial tacycardia runs . I wasnt satisfied i saw an electrophysiologist still do till today she said they are ectopics and to not fear them.but they are pure hell and i cant lead normal life. Mind you i still have the balance o decoded to get more opinions after the 9 mths visits at thr neurophysiotherapist. O saw a neurootologist he said vestibular migraine as did my 1st neuro and prescobed me valium
. I was fed up no one knew mri cat scans clear. But always bppv was coming up. So 2 neuro and physio also saw another ent doc and ge did ecog hearing tests air in ear all was normal ! specialises in vertigo and balance and diet change some how i got ok 2 yrs later. I searched online and found a physio that specializes in the vestibular system. He helped me most and have been seeing him a yr he gives me excersises and performs epleys almost every moths i see him. I sleep because of him but i still get false movements peircing tinnutis but last night after a yr of managable balance it came back. I opened my eyes and i felt of i was on a boat and my head was full of sand like sand in an hrglass side to side. I freaked. 30 min to pass but today tight neck i always have and afraid to sleep. 15 yrs and i seem to just be going down hill. CAN ANYONE HELP ME .15 YRS I CANT DO ANYMORE. ANYONE GOING THROUGH IT
Thankyou all
Ane.
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