I’ve been recently diagnosed, but I’ve been dealing with vertigo for a long time. It first came about around 18 years old (I’m 34 now). Male if it matters.
For a bit of history, I dealt with debilitating vertigo for around 2 years before finally making it to a neurologist. It was so bad I had to drop out of high school my senior year. I ended up having a dangerously low B12 level (no idea why). The neuro gave me injections of B12 to get my level back up, and RX’d me Klonopin for vertigo. I don’t know what my original diagnosis was. They never really told me, and I was so young it is hard to remember anyway.
It is hard to remember if they were migraine-like because it has been so long, but I definitely had headaches back then. I can remember thinking I must have a brain tumor or something because they hurt so bad!
As far as the treatment I got along pretty well. Vertigo didn’t completely go away, but it was manageable. I ended up getting diagnosed with TMD from my dentist who happened to be my uncle, so I trust him. I know there is a lot of wild claims with what TMD can supposedly cause. I didn’t believe my bite being off could cause dizziness, but he made me a splint for free to fix my bite. I was able to get off the Klonopin slowly, and to my surprise, my vertigo was completely gone!
This vertigo free period lasted about 3 years. It was great! I thought wow it was my jaw this whole time. I dealt with some pretty heavy anxiety and panic attacks from going undiagnosed with vertigo for so long. All this pretty much vanished. I was not on any medication at the time.
Vertigo and Friends come back
After a pretty stressful event in my life BAM, I got hit with bad vestibular issues/vertigo, terrible anxiety, and horrible muscle pain in what seemed like it happened “overnight.” It probably wasn’t overnight, but that is how it felt.
This has been going on for a bit over 10 years. Naturally, when this occurred, I thought it must be my bite was off from the TMD, but all that checked out. I ended up being put on Klonopin again and Zoloft.
Fast forward to now I have come off of the SSRIs. I found out they were making my muscle pain much worse. Apparently, that is a side effect that no docs seem to know about at least in my experience. Coming off was hell, and it still isn’t that great.
I am still on Klonopin, which I know isn’t a good long term med, but here I am. Of course, the docs didn’t warn me about any negatives at all. Sorry, I’m a little jaded with doctors. I’d love to try to slowly taper off, but I’m just not in a good spot right now for that.
The new neurologist prescribed Topamax which after reading about the potential dangerous side effects it is a bit of no go for me.
I’m also really med sensitive, and after basically trying every SSRI this year and having the side effect of excruciating muscle pain on all of them I’ve been on quite the med rollercoaster. I’m a bit over meds, but I hate feeling like this as well.
As far as symptoms go, I have vertigo, tension headaches at times (never migraine), tight neck muscles. Specific patterns seem to make it worse (think busy carpet patterns). I feel like either I am rocking on a boat, or my surroundings are. The thing is though it is a constant feeling of rocking. There are times when it is much worse, but it is always there. I’m a software developer, so I look at a computer all day. I feel looking at the monitors makes it worse, and I have weird vision symptoms. Think like little spots floating around and blurry vision at times. I’ve had my eyes checked, and they always say they’re good.
I have done a lot of reading on this forum and in general, but I want to hear from people that deal with these issues.
Does this sound like vestibular migraine? Can anyone relate? Can you have constant vertigo from vestibular migraine?
Thanks in advance and apologies for such a long post