I just came across this forum and I’m so happy that there’s an online community of people suffering from the same symptoms as me. I was diagnosed with VM about a year and a half ago and wanted to share a bit about my journey thus far.
I’m 27 years old. It all started when I had an intense vertigo attack while I was driving across a bridge 2 years ago. Pretty much the worst possible place to have one. I got suddenly extremely light headed and thought I was going to pass out, but instead my head started to feel like it was being pulled down to the right (which I now know is referred to as Magneto head!) I managed to get to the end of the bridge and pull over and I started uncontrollably vomiting. I went to the hospital where no one really understood what was happening but I had a CAT scan and some other tests and eventually left with a BPPV diagnosis. It took me basically a whole year to recover from that attack. It took months to be able to walk normally and go to the grocery store without feeling terrified and disoriented. Every morning for weeks I would wake up with that bowling ball head feeling and this constant feeling that I was being pulled to the right.
I saw many doctors who all gave me different diagnoses, like Meniere’s, BPPV, basically all of the inner ear disorders…but a neurologist finally confirmed that I had VM. I wasn’t really having issues with actual migraines so that was what made it so difficult to diagnose. I made some life style changes like quitting coffee, which helped incredibly, and I tried going vegan for a short portion of time, which actually did help a bit, though not enough for me to stick with it.
I’ve never had another attack as severe as that one, but I do have days and weeks when I really struggle. I’ll have moments of extreme lightheadedness where I feel like I’m about to have an attack, or I’ll just have a string of days when I feel generally off balance and uncomfortable. I feel it a lot when I’m driving too - like when I stop at a red light I feel like my body is still moving. I am also now starting to experience the migraine symptoms, though it’s not always in conjunction with the vestibular symptoms. I definitely have worse symptoms around my period, and the original attack was during my period as well. Here’s a list of some of the symptoms I have either constantly or occassionally:
- lightheadedness (as a feeling right before an attack)
- feeling like I’m standing on a boat/like the ground is moving toward me
- eye floaters/little dots in vision
- eye strain
- sometimes a static-like movement in the middle of my vision that I can see if I focus on it
- pretty constant tinnitus
- a random high pitched sound in my right ear that will happen for a few seconds and then go away
- headaches that are associated with one side or one area of my head
- a very stiff neck on my right side
- ear fullness during an attack
Most of my symptoms either generally or during an attack have been related to the right side of my body, which I don’t understand and I wonder if anyone has any insight on that. Also, I feel like my symptoms flare up when it gets cold out or when the weather is changing - not sure if that is a thing or not. But my original attack happened in November, and I feel like every fall since then has been especially difficult.
I’m currently having a bad few days and feel like I need to make some more diet changes and start trying supplements. Would love any recommendations for that, and any feedback in general! Really happy to have found this group, and looking forward to being a part of it
Hi Natalie and welcome,
Wow you share very similar symptoms with me when I had my first episode. I particularly resonate with the magnetic ear thing. I was pulled to the left! Walked into walls. Even the eye strain … I couldn’t bear moving my eyeballs some days it hurt so much.
I also get worse when ovulating/period so this suggests that yes, you sound to have VM. On your first episode, were you just driving and not turning your head? My nightmare began with bppv which triggered vm, and took around around 4-5 months to slowly improve.
Are you on medication? Where are you based?
You’ve come to the right place
Hi Belindy! I’m so sorry that you’re also going through this, but happy that we can relate to each other’s symptoms. During my first episode, I wasn’t turning my head or anything. They did the Epley on me multiple times and it never made any difference, so I think they diagnosed me with BPPV because they didn’t know what else it could be.
I’m not on any medication. So far, I’ve gotten it to a point that has been manageable so I haven’t felt I needed it, but recently I’ve been wondering if I should try something. I’ve heard the medications have many side effects though…is there one you recommend?
I’m in upstate New York, about 2 hours north of New York City.
Thanks for your response!
I have the exact same feeling as you when stopped at a light while driving. I struggle with driving due to my vestibular symptoms and also anxiety because of those symptoms.
I have VM and bilateral hydrops, and my new doctor has me on 400mg of B2/riboflavin in the morning and 500mg of magnesium glycinate in the evenings (note: I typically take 300mg at night since I get 100mg in my multivitamin and 100mg+ through my diet). I’ve been on a low salt diet for nearly 10 years now too. I’ve noticed a definite improvement using the supplements.
It’s good to hear those supplements are working for you! I tried taking 400mg of magnesium glycinate and it upset my stomach - do you recommend working up to that dosage gradually, or starting with a lower dose? I’m also going to try riboflavin but I only got 100mg capsules so I guess I’ll start with 2 of those a day and see if it helps.
I’ve thought about doing low salt, but I’m pretty sure I don’t have Meniere’s (I’ve never had any hearing loss at least) so I wonder how well that works for just VM. Worth a try I guess!
Are you on any other medications besides supplements?
Sorry should have mentioned I’m doing really well now. I still have bad days but I’m managing well enough. I trialled one medication and ended up not tolerating, the second was great (pizotifen) now I’m on a third (Ajovy).
I think to be frank, to get any real improvement… meds are the go. And not forever, just to get you out of the rut
Welcome! I have had this page pulled up for days so I could read and respond but I am having vestibular symptoms also. I also am being tried on 2 new medications for depression/anxiety, so I am not sure if most of my symptoms are vestibular or from the medication itself or a combination of both but it definitely sucks.
I was diagnosed with VM/BPPV 2 years ago in October. I have had so much going on mentally in those two years that at times I didn’t even realize my vestibular symptoms had gotten better until they got worse again.
It wasn’t until you mentioned the weather change that it got me to thinking and I do believe mine has gotten worse about the same time of year. Sometimes the BPPV can be fixed (Epley) and other times it is part of the condition.
My very first symptom was BPPV and I had no idea what was going on. I went to an ENT who referred me to a neurologist, so I was lucky to be diagnosed right away, but that doesn’t mean you get cured right away. Emgality kept the migraines away until last September when I got Covid. Then I got behind on my dosing because my dr didn’t have any samples, so I was able to get free samples directly through the company that makes it so I am back on track now. However, I recently had a very bad spell with severe migraine and GERD at the same time. I thought I was having a heart attack. I feel better now but it still seems like something is going on and I can’t get a gastro appt. until the end of January.
The migraines are about the only thing that went away for a long time. I have numbness/tingling throughout my whole body, ear fullness (worse on right side), tinnitus, TMJ and most of what you mentioned above.
I recently went to a “telemed” appointment with my shrink and was there way longer than I had planned on being there. They have fluorescent lighting and that’s when the migraines started again, and I got super nauseous. I try not to go in stores at all or make it very brief because I saw first-hand how sick it can make you.
I also have fibromyalgia and quite a few mental health issues that contribute to me being so sick. This go around, it seems like more symptoms have been added and I have been in bed more than usual. I am exhausted all the time and just want to sleep all day. I have filed for disability a little over 15 months ago and I know it can be a long time to get approved, but it is so hard living like this.
This site is a wonderful resource, and everyone is very helpful. It sucks that we all have this but at least we are not alone!