hi all
all my inner ear test came back normal as well MRI of the head. balance is very good with all the test I did. is this common to folks with MAV to have all tests normal?
doctor is certain I have MAV due to my visual Aura prior to the headaches and constant 24/7 dizziness. no vertigo mostly unsteadiness I feel in my head as well as head pressure, confusion and bi lateral ear pressure.
putting my head on the pillow to sleep is the worst part of my day and symptoms seem to increase significantly. very frustrating.
she prescribed Effexor XR 37.5 and titrate up to 75 in week. I have being on it for 7 days now with not much difference but she said it will take time. I am also on Inderal 60 mg and magnesium glycinate.
Yep, you just described a very common set of experiences as a member of an uncommon group. It sounds like your doctor is dialed in. That’s great luck! Effexor is an excellent first line med.
All my tests came back normal and while I was doing vestibular rehab they put me in a big egg shape machine ( I can’t remember the name) with a platform that moves to test your balance, the first time i did it showed a graph with ok balance and then another day when I was feeling way worse I dared my therapist to put me on the machine because I swore up and down that it was gonna show bad results. To my surprise the results were way better compared to the first one which I did during a not so bad day
Check out the PPPD threads on here. Plenty of info there. Not identical symptoms as me anyway. From my reading of it, PPPD must follow a traumatic vestibular event which has now cleared and you must have been dizziness persistently and non vertiginously/rotary for at least three months. No mention of headaches, photophobia, phonophobia, nausea etc all common MAV symptoms. Untreated/uncontrolled MAV sometimes seems to develop into PPPD which isn’t really much of a surprise to established MAVers. Helen
I was told MAV was episodic but PPPD is similar symptoms ever day. My current neurologist thought my MAV was brought on by Vestibular Neuritis and diagnosed with PPPD a year and a half later. Also, there is a more psychological element to PPPD?
For me MAV/PPPD symptoms are the same, but possibly more co-morbid psychological issues along with my symptoms of dizziness, unbalance, fatigue, nausea, light and sound sensitivity. My symptoms seem to be triggered by the same things, and when I did VRT early on and more recently it was basically the same exercises. But I truly believed my VRT was cut short this last time because my neurologist wrote long term prognosis was poor and PPPD could last for years. I have yet to find a supplement, vitamin, medication, exercise, or therapy that makes it all go away.
You, me and all the rest, I was reading very recently somewhere 90% of people who try preventatives quit due to side effects within the first year. My main consolation is that, if I can have those few 100% days, ‘underneath’ it’s not permanently danaged so when things eventually settle down which surely they must sometime - why would we be dizzy ‘for ever’ really - it’ll all be OK. Helen
It’s been a difficult journey this trial and error with anti-depressants. Right now trying to come off Amitriptyline and introducing Mirtazapine. Don’t know if any of these will lessen my PPPD symptoms, just would love some help sleeping and help with my mood. I love those 100% days too!
I have read this pdf before 3 months. The thing I understood from this is, if you want to get out of this vicious circle you have to expose yourself to things that make you feel uncomfortable plus taking correct medication or doing VRT.
Most of that but I think it would need management as to the order of precedence. Plus I suspect some guidance from a psychologist who’d be best placed to arrange a specific schedule,