New to the forum here, looks like some really interesting information. Anyway, I was doing some more intense lap swimming 6 weeks ago when one evening I came down with intense dizziness/brain fog, and an inability to think clearly. I have had 3 concussions in my life, the last one being a whiplash version 18 years ago. After a few days of this, my primary ordered an MRI and had me take a balance evaluation/test here in Minneapolis. The MRI was unremarkable but mentioned low lying tonsils (Chiari?). I failed my balance test in the areas of the eyes and ears, and have a more specific test next week. In the meantime this has really affected my ability to work and socialize. I am taking klonopin to help the anxiety this has sparked, and to help some of the off balance feelings. So…with CSD…one usually has a normal balance/vestibuar test? Just trying to dial in on what the heck happened to me after a simple swim that I have done many times before without incident.
Welcome to the forum and sorry to hear you are suffering. These issues are often so minute it’s hard to tell. We are not equipped to diagnose here but can share knowledge. But FYI you can upset the fluid balance in your inner ear after whiplash injuries and it can take years to develop full on (and so may not related to the swim, that was simply the point at which symptoms became noticeable). A recent famous example is the Olympic long jumper Greg Rutherford who did this and he was advised to stop jumping so as not to make it worse.
The treatment is just the same as for MAV. Follow the diet and be conservative physically. Its supposed to very slowly resolve over years.
Head injuries are in general bad for ears. We have a number of sufferers on the board that have MAV-like symptoms after head injury.
I have a similar condition and after 3.5 years I have my balance back. Hearing is not yet back to what it was though, yet.
Just my ten cents.
Thanks so much for the response. Wondering if we should chat offline here…I can give you my personal email if that would work. Just would like to dive a bit deeper on how you coped, medications, etc. I guess in a way it is good news that the balance test showed abnormalities, and a composite score well below average. Something to indicate issues that can then be used for a treatment plan hopefully. Anyway, let me know, thanks!
Bret, there’s a PM function on the site, feel free to contact me privately on that: hit my avatar to bring up my User Card and then hit ‘Message’.
Alternatively consider just keeping the discussion public, as there are others on here who’ve had a knock or two to the head (and concussion) and can chip in (e.g. @BHMaloney) and yet others who could learn from our experience.
There is nothing I’m worried about saying publicly about my experience.
Also feel free to take a look at my diary here. (warning, these diaries tend to be long! )
To put it very briefly I went to hell and back, had imbalance for 3 years and took Amitriptyline for 1.5 years which helped keep the dizziness under control and generally controlled the migraines. This was all kicked off by simply pointing a shower on low power into my ear in an attempt to clean out some wax. Aside from tinnitus I’m now almost 100% but have to keep my caffeine restricted.
Your focus should be finding the right protocol to make yourself feel better. The MAV protocol is the only protocol for chronic dizziness that I’m aware of and documented on this site in the Welcome section. Take a read and shoot us any questions you have.
Once again, thanks. Trying to figure this thing out, as you know, is enough to induce anxiety along with the imbalance/brain fog. So…I am taking some zoloft and klonopin right now to help the symptoms. I take 37.5 mg zoloft each morning, and .25 of klonopin 2x a day. This keeps me afloat right now, and I mean just getting by to hold down my job and be able to have some social life. Did you have a balance test/vestibular function test performed at all? Curious if so, and how your results where. My follow up test is called an auditory evoked potential test, which I was told will see how the central nervous system is working in regard to processing stimuli. Did you do any vesibular therapy at all? Lastly, you say the amitriptyline helped you with the imbalance. Curious by ow much. I know some folks take this for sleeping as well, so did it make you groggy? Really appreciate your feedback!!!
If you are maintaining a social life you are already on the winning team - many on here stuck housebound. So that’s a sign you are dealing very well with it!
No, not a jot I suspect. Just the ‘dizziness’ which is quite a different feeling (and an important distinction). Imbalance is where you feel ‘off-balance’/out of kilter … dizziness is a more fuzzy sensation ?
I had vestibular testing which was almost normal … but I suspect MAV is unstable, so you can have a good test but still not ‘feel’ right and symptoms fluctuate.
Yes Amitriptyline made me groggy but that improved over time and I really only suffered one side-effect long term which was slow bowel.
I’ve written about my Amitriptyline experience here:
VRT didn’t help me and escalated my symptoms, precipitating migraines. I just walked and walked and walked outside … this helps with the anxiety too.
Once again I would value your opinion here. I had a second round of testing this past week, with my follow up appointment yesterday at a dizzy/balance center here in Minneapolis MN. The only 2 abnormalities (again) were some up beating nystagmus and a composite score of 40 on the sensory organization test. My doc is a bit confused as to a diagnosis. She contends there is no fistula, but said the nerves in the inner ear are hard to evaluate and could be playing a role in my condition. I have been scheduled to come in and do adaptation therapy 2x week for a month to see if this offers any benefit. After that she said if no progress, than something neurological could be going on, either in the cervical area or brainstem area. I am wondering if I should try to get an appointment with a neuro-otologist knowing it may take some time to get something set. My only path to functioning right now is my cocktail of zoloft, adderall, and klonopin. I find the adderall does help cut through the fog to give me some clarity, but too much can trigger anxiety. Again, fun stuff. Thoughts???
Have you had MRI of brain yet? If your current soecialist hasn’t arranged that or it’s out of their jurisdiction go on to a neuro-otologist. That will show any damage to brainstem. Better than speculating. As you say yourself these things take time to set up so why delay the start. VRT only works on certain vestibular conditions. So, worse case scenario could prove waste of time. Better surely to try to find out what’s going on first though one has to appreciate that isn’t always possible. Worth a good try though,
I had one back in March of this year and things looked fine. This wasn’t a cervical MRI which I may need given the neck issue I had from the whiplash concussion years ago. I feel like the right side of my neck is more stiff than the L, and when I look up I can feel soreness and some nerve tingling. Not severe pain mind you, but a noticeable feeling that wasn’t there before the swimming incident that triggered this. And you are right, I will get started on the neuro-otologist appointment this monday. Would that doctor also know about neck issues involved with balance/vestibular disorders?
Sorry, I don’t really know for sure. Unlikely. They are more brain and ear and eye motor. Trouble with all these specialisms. Ask when you make the appointment. Brain RI should have highlighted brainstem damage. That’s why I had one.
Just thinking a cervical spine image may show something with the actually bone structure to see if something is affecting nerves or such. Obviously something had to happen with such an acute onset. So frustrating.