When this first started, the rocking vertigo was the worst symptom, and it did get progressively worse. In the last 4 months, I’ve experienced every kind of vertigo there is: dropping, falling, floating, sliding forward, sliding back, shaking, feeling faint, quick spins, jerking, nausea…you name it. While I still have rocking, though sometimes milder than before, and I do have lots of different sensations and nausea throughout the day still, a couple months ago the slow spinning vertigo started. To this day it’s become far stronger, and far faster, and it’s now my most debilitating, prominent symptoms. In fact, it has started to become strong enough that it’s flirting with being true vertigo. This symptom never leaves, and only eases up while I sleep, though it’s still there.
I’ve not seen many of you complain of this symptom. Does this mean I’m in a league of my own here, or are there others out there?
Guinevere, I can’t remember, what kind of scans have you had? Did you ever have an MRA to look for a vascular loop? Not that I think you have that, but just curious. I guess you’ve had an MRI, too.
I’ve had several MRIs. My last was about three months ago, a month after this vertigo started. It was with and without contrast, along with a CINE (flow) study. I’ve had an MRA, but that was two years ago, though I’m assuming a vascular loop would have shown then? I’ve read a little about compression of the 8th nerve, but from everything I’ve found, the description defines the vertigo as episodic. My vertigo never leaves, not for a second.
Is that what you were referring to? I assume so.
xo
I have the slow constant spinning. Sometimes it fluctuates and turns into violent spinning, but cross my fingers the more violent vertigo is still episodic. You’re not alone!
Guinevere–yes, vascular compression of the 8th nerve. They probably would have mentioned it in the MRA report if you had one. I do have a vascular loop, but it’s likely asymptomatic (lots of people have them with no symptoms).
To me it would make MORE sense, if you have a blood vessel pushing on the nerve, that you WOULD have constant symptoms, but I realize that’s not actually the case with the vascular loop syndrome… I guess maybe it’s more like trigeminal neuralgia, where the vessel pushes on the 5th nerve and you get just the episodic pain. But who really knows? Cases of just about ANYTHING can be atypical.
It sounds like you’ve had a lot of investigation, done a lot of thinking, and seen a lot of specialists, and it must be extremely frustrating to still not have a correct diagnosis after many years. I can understand (partially) because it’s the same with me, except that my symptoms are not that bad. But the frustration with not really knowing what’s going on–so that you can treat it without dismissive doctors and without wandering into blind alleys–is another “symptom” that never goes away.
Nancy — you’re right in that it would seem logical that nerve compression would cause constant symptoms. It seems odd that it would be episodic. Then again, the human body if a strange, complex system, particularly the brain. We still understand so little about it.
Dizzy For Life — have you ever experienced other forms of vertigo, like rocking, or have you only had the spinning? How long have you had this, and have you found anything that has helped you?
Hi - I have experienced other forms as well - my main forms of vertigo are excessive bouncing/shaking when I am in motion, and the slow spinning when I am at rest. I have experienced other motions as well, but only in shorter durations. As far as I can recall, my first vertigo attack was in 2002/3 or so, with each attack lasting longer and longer. I have been mostly chronic since summer 2011, and completely 24/7 chronic for over a year.
I’m still working on a solution. My best so far was 400 mg Topamax (close to 90% better with the dizziness and 100% on some days), but I had rare side effects and had to stop after being on it for a long time. I would love if I could give it another go. Honestly, the slow spinning is better when I am looking at something like a TV (maybe I just notice it less?) but I have to be careful what I watch as too much motion makes me motion sick. I have also found some help from the migraine diet - it didn’t make my symptoms go away, but I am FAR worse if I eat my trigger foods.
My biggest one by far is aspartame. Major triggers include certain cheeses, caffeine, yogurt. Minor triggers seem to be banana, nitrites and sulfites. So far I have not been able to notice any difference with anything else on the buccholz diet (all the fruits, avocado, onion, pea pods, MSG, etc seem to be fine). I’m probably going to go back full elimination and do it again to make sure I didn’t miss anything.
Nancy, I, too, have bilateral vascular loops. Loops can only be diagnosed via a very specific MRI that’s coned-in on a certain area in your brain. They can not be seen on a regular brain MRI.
The first neuro-oto I saw sent me for this special MRI using CISS MRI technology. He told me that up to 6% of the general population have vascular loops. Of course, since 6% of the population do not have vestibular issues, the loops are generally asymptomatic.
I was sent to a neurosurgeon who trained with Dr. Jannetta, the man who pioneered microvascular decompression surgery in the treatment of trigeminal neuralgia. He told me that my story was somewhat consistent for those who have vestibular issues due to microvascular compression of the 8th cranial nerve, but not all of my symptoms lined-up. He was therefore reluctant to perform the surgery. Thank God for that as I do not now believe the loops caused my problems.
There is another poster on this board who had microvascular decompression surgery of the eighth cranial nerve, and the procedure did not help her at all. In fact, she told me she doesn’t know of anyone who has been helped with the surgery, and has since formed the opinion that compression can not cause dizziness. Dr. Hain also told me he doesn’t know of anyone who has improved post-surgery.
Hi Kennedy–sorry I only just now saw your post. (Busy week–huge crowd for Thanksgiving, overnight guests, then last Saturday our grandson arrived a month early!!) Very interesting…
Yes, from what I heard (many years ago), that surgery is very problematical, and I think that (as with perilymph fistula) there were particular doctors who propounded the idea much more than others and did a lot of surgeries, without agreement from the mainstream.
It’s basically brain surgery (at least they have to open up your skull), so it’s a big deal. I remember reading some people’s experiences and they were worse afterwards or at least not better. For those who got better maybe months and months later, how could you know it was BECAUSE of the surgery, or whether it was a remission due to other factors?
Yes, you have to have an MRA (magnetic resonance angiogram) to see the blood vessels. That is what diagnosed mine. But the otoneurologist felt it probably wasn’t the cause of my symptoms, and I was happy to agree. The problem is that, as with PLF, the symptoms are pretty much the same as you can have with any other vestibular disorder!
Yes, it could very well be common for you, or many of us - we’re all different.
I’ve had just about all of them…
a. Feeling like I am going uphill, regardless of the direction I face or how level the ground is
b. Feeling like everything is sliding off the the right
c. Rough spinning to the right
d. Mild spinning to the right
e. Brief, but intense moments that I am falling
f. Rocking sensations
g. Random moments (where your vertigo is just kind of all over the place)
h. A feeling like there is a huge weight strapped to the top of my head and it takes all my effort to keep it upright
i. Feelings that I will just drop or collapse
After vestibular rehab, the two I experience the most are “c” (bad days) and “d” (most days).