Vestibular Dysfunction Questions
 

Hey everyone,

Was wondering if anyone with vestibular problems due to their mTBI could answer some questions for me?

I have been diagnosed with vestibulo-ocular reflex dysfunction. Basically, my eyes and head do no move in sync so I have trouble moving my head and focusing my gaze. Also, my right inner ear is functioning on a lower level then my left, because I guess that's where I hit my head.

Anyway, my therapist says that I should keep doing activities that make me dizzy so my body will adapt and desensitize and then rest and recover. But I am afraid that this will set me back in my PCS recovery. I have so much anxiety that making myself dizzy on purpose is only hindering my brain from recovering, even though apparently that is what I'm supposed to do. I've set myself back a few times now, and I feel like I'm never going to get better (I'm 10 months in, by the way).

Another question is, is it possible to be completely healed from a concussion but still have the inner ear damage and dysfunction. I feel like vertigo is really my most debilitating symptom. I don't get bad headaches it seems, only when my vertigo is very bad. Same with brain fog and cognitive symptoms. So could my brain be healed? Are the two injuries separate entities? Like does the brain only heal when the inner ear heals, or vice versa?

Also, I have a lot of ear pain (achyness, fullness) and tinnitus, which I know is normal for this. But sometimes my ears will suddenly feel like they close up and the ringing is replaced by a singular high pitched noise, like a "beeeeeeep", and I have to wiggle my finger in my ear to get rid of it. Is this a concern?

Anyway, sorry for the rant, but if anyone has any input or advice, I would appreciate it. I feel like the constant dizziness (swaying, rocking, seasick feeling) is giving me intense anxiety and preventing me from doing even basic things like going on walks or even just getting out of my house. Thanks!

Wow...my symptoms are very similar to yours as I also have VOR dysfunction and constant dizziness. I am only 4 months post injury. My vestibular therapists have said the same as yours (I've seen two). I just keep hoping that eventually what they say will hold true and this dizziness will be over. I have been seeing a mental health therapist to help cope with my anxiety regarding driving, this condition, and returning to work. So far, it has been helping.

I am able to do a lot more activities than I was a few months ago, but I still struggle a lot with overstimulation. A few months ago, I couldn't do 10 minutes on a recumbent bike because my symptoms would get so high that it felt dangerous. Now I'm able to get through that activity for 10 minutes.

I bet your therapist meant for you to do activities that cause dizziness for a short time then rest. Pushing too long can cause brain overload and fatigue making things worse. Do an activity until dizziness starts. Take a break. Next time, do it just a bit longer then take a break. For me, the break can be just a minute or even a few seconds to allow things to settle.

Regarding healing. A concussion is not a single event or injury. It is a process with injuries to various systems. Different symptoms will improve over different time schedules. Some will have a single symptom that seems to last long after the others have resolved.

I wonder if some of your ear symptoms may be due to pollen. It is that time of year. I rarely have a problem with pollen but this year has been bad.

Your diagnosis of vestibulo-ocular reflex dysfunction could possibly be plain post concussion nystagmus with no inner ear involvement. Were you tested for nystagmus without moving your head ?
You could have two different issues. Simple PCS nystagmus and also a vestibular dysfunction.

For some of us, mild vestibular issues have persisted for quite some time. We just learn to live with them and sometimes, we eventually realize they are gone. If I move too many directions at once, I will get momentary symptoms. If I stop and stand still for a few seconds, they go away. So, I try to get up from a chair in two movements. I lean forward, pause for a fraction of a second, then I stand up.

I have similar issues and have been going to vestibular and vision therapy for over one year. I've had 2 concussions--the first 9/13 and the second, one year later.
Therapy for these issues is meant to desensitize you (which unfortunately, makes you fairly miserable as who can possibly enjoy symptoms of dizziness, nausea or headache?). After all the therapy I have had and the daily home programs, yes,I have seen improvement, but I am still experiencing the symptoms which continue to make me miserable if I dwell on them.
To stop dwelling on them, I have decided to take a break in my weekly therapy sessions and daily home program. My goal is to do more activities that make me happy and deal with my symptoms at the same time.
When driving, I'm relying on the wonderful new technology of rear cameras and side view lights/warning sounds so I do not turn my head side to side which sets off my vestibular-ocular issues. In the past, there was nothing like getting on a highway on a beautiful day and driving a few hundred miles to visit my daughter or others. Can't do that yet as I learned my lesson the hard way last year. Too much visual and vestibular stim for me and I experienced horrible headaches for a few weeks.
Doing everything in moderation is the key to dealing with PCS and trying to keep a positive outlook. This is so very hard, but necessary especially since we don't look any different than before our injuries on the outside. It's on the inside where no one can see that things are so very different.
We all heal at different rates and no one can truthfully tell us when that healing will take place.
FYI- tai chi classes have been a great help for me in many ways as it is a meditative exercise. My balance and ability to process directions has greatly improved as has my tolerance for noise (the chit chatting of classmates before class begins initially increased my headache while the calming music & chi gong exercises helped to decrease symptoms).
Hope this helps!


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Thank you all for your replies, they are very helpful. I feel like for some reason the vertigo is the hardest symptom to get used to, maybe because it is more unsettling rather than just pain, which I am pretty good at tolerating. I will heed the advice about taking more breaks when I get stirred up, and looking into Tai-Chi and other balance exercises like yoga. I am also going to look into treating my anxiety, since that is probably not helping me cope with any of this!

Try to think of anxiety as the great multiplier. Anxiety will make any symptom many times worse. Anxiety is based on the body's fight or flight response. It causes the brain to be hyper-sensitive to everything. A slight amount of dizziness becomes a severe amount of dizziness.

With PCS, this fight or flight system gets hijacked and struggles to shut off and starts up with minor triggers.

So, getting help with anxiety can go a long way in reducing symptoms.

For example, Learning to not react to dizziness reduces anxiety. I just accept that dizziness will happen and move past it when it does. I don't let it cause me to react.

It takes work to not react but the effort is worth while.

Mark,

Should I be concerned that my vertigo (rocking, seasick feeling) is constant and not just when I'm moving around. Even sitting still or laying down I still feel rocking. Could this dizziness be coming from my neck? I've had an MRI done of my neck and it showed nothing abnormal. PT and acupuncture don't seem to help, but maybe I could benefit from an upper cervical chiropractor? Let me know your thoughts, thanks!

MOD

I am not Mark, but I have vestibular damage from concussion. I have the 24/7 dizziness. Just to clarify - the rocking/boat feeling is not called vertigo - true vertigo is a spinning sensation. It is helpful to distinguish this when talking to practicioners trying to diagnose you.

I do not know how far in recovery you are, but early on I would feel the dizziness even while lying down. Vestibular therapy and acupuncture have helped me so that on a good day I only feel it when making certain quick movements.

What type of PT are you seeing? Are they certified and well trained in vestibular therapy? If not, I suggest you see a vestibular specialist therapist. A run of the mill PT will not know enough about vestibular issues to properly help you. You can go to vestibular.org for help finding someone and for more information.

An upper cervical chiro did not help me, but that was just my experience. He did not treat the soft tissues in my neck. My vestibular office had a neck guy that did really gentle treatments to the tissues of my neck and it helped a lot.

Did you try acupuncture for a while? It may take a while to start helping. It also is worth asking around to find out who is the best of the best.

Just my two cents. Take care.

PS -

What are your daily activities like? Are you working and in what kind of job? I know for me, I had to quit working for a while in order to get better because I was pushing it too hard. But I had a very demanding job.

RR,

Thank you for your reply. I am always a little confused about how to describe my dizziness and which term to give it, so thanks for making the distinction.

I do see a very qualified vestibular therapist, so I have no worries about that. She has actually had 3 concussions and has inner ear damage herself, so I feel like I am in good hands.

I am 10 months PCS. Basically, to sum it up quickly. I did not have bad vestibular problems the first month of my concussion. The doctor I was seeing at the time prescibed me VT anyway, and sent me to a PT with limited understanding of vestibular dysfunction. Her misguidance increased my symptoms tenfold. Then I started seeing my current therapist, after about 5 months I started to feel much better, about 90% back to normal, but still had a constant low level rocking sensation, and I felt as if I was plateauing with therapy, so I decided to stop and see how my body reacted. I also wanted to explore other options. I went back to work (this was 7 months PCS) at my waitressing job, 2 shifts a week. I did this for about a month and felt really good, until a few unfortunate, stressful events sent me into relapse, all of my vestibular problems came back, so I went back to VT and have been going again for the past 2 months. I also had to stop working when I relapsed, but am now working 2-3 hours a week at a desk job, just to make a little cash.

I am seeing some slight improvement again so far, but I still wonder if my neck has anything to do with this. My therapist is also trained in Cranio Sacral Therapy, which does help get the knots out and loosen the muscles, but I still have a lot of pain at the base of my skull, in the suboccipital region, and my upper cervical spine feels "jammed" (I don't know how else to describe it). So I wonder if this is causing that last little bit of dizziness I was feeling a few months ago.

As for acupuncture, I have been going for about 5 sessions. The last 2 sessions I finally felt it working. I felt the energy flowing through me, my body was pulsating, I felt insanely calm, BUT it also made my dizziness and nauseau significantly worse. It stayed that way for a few hours after treatment, and then went back to the level it was at originally before the treatment, so I am not sure if this is good or bad. People are telling me that it's good, because it shows that the pathogens are being released from my body. So I will keep going for now.

Sorry this was a long post, but I like to be detailed, and it has been a crazy ride so far. I wonder, are you still doing any treatments for your dizziness? I feel like their must be some reason our bodies are not compensating completely to the dizziness. I have an elementary knowledge of vestibular issues, but I feel like if desensitization alone does not completely resolve the dizziness, their are other therapies that can?

"I am seeing some slight improvement again so far, but I still wonder if my neck has anything to do with this. My therapist is also trained in Cranio Sacral Therapy, which does help get the knots out and loosen the muscles, but I still have a lot of pain at the base of my skull, in the suboccipital region, and my upper cervical spine feels "jammed" (I don't know how else to describe it). So I wonder if this is causing that last little bit of dizziness I was feeling a few months ago."

Keep the CST away from your skull. The upper neck work is good. Gentle.....

An upper cervical chiro may help. They each have different skills sets and every patient is different.

It is extremely important to be disciplined with head and neck posture, especially during sleep and rest. I know that I could be great one day then all messed up the next because of sleeping neck posture.

Anxiety/stress can sometimes cause neck muscle spams that could magnify your problems. Your relapse after the stressful event suggests anxiety may be making your symptoms worse, either just the anxiety or the anxiety causing muscle spams. Learning to remove yourself from stressful events when possible will be a big help.

I've had many concussion but my most recent November 15' and that one was vestibular. It took me down a dark rabbit hole for a while with a lot of the same things you have mentioned. My anxiety was off the charts, my resting heart rate was over 100 for about 3 months. My vision and balance were awful. The first thing I want to ask, has someone done the Epply maneuver on you? I'm sure they have but if not that helps with a lot of the dizziness. I also was put on a low sugar, low carb, and gluten free diet. Its what most neurologist recommend for a healthy brain. I did my pt work and eye and balance exercises. About 4 months after I started feeling a lot better. I made it back to being my normal self with just some ringing in my ears. Other than the PT I don't know what else really helps other than time. I tried all the other stuff with no real results. Good luck to you!!

Steve,
Thank you for your reply. I have not had the Epley maneuver done, because I do not have positional vertigo (BPPV). My dizziness is related to eye/head movement and gaze stabilization problems, unfortunately, so it takes longer to fix than BPPV.

I am thinking of trying that diet that you mentioned, because I have been having stomach problems as of late, and I think too many carbs may be the culprit.

I'm glad to hear vestibular therapy gave you relief, it did wonders for me as well, but I still always had a low level of dizziness, so I just wanted to consider other causes since a lot of other things (like neck pain) can cause dizziness. I know the therapy will help me get back to where I was before my relapse, I am just getting a little impatient. Yesterday was my 50th visit! But I must stay strong ;-) .

MOD

It sounds like to me you are doing all the right things.

Only other thing maybe is have you had your eyes checked by a specially trained optometrist? I have finally gotten vision therapy approved and am going soon to try it out. I feel like some of my dizziness is related to eye problems. There is some overlap between vision and vestibular therapy, but I am hoping some of it will be different and helpful.

I do not know why the acupuncture would make you worse. I have heard that happening to some people. I do not know if it is a good thing or a bad thing, but after a while, you will just have to trust yourself to know if it is right for you or not. I did not feel that cranial sacral stuff was right for me because it did not make me feel good.

So, I am in the same rocking boat as you ;) Vestibular PT and other stuff has helped me, and I am still doing them. But I still have a constant low level of dizziness. I do not know why our brains haven't adjusted, and I struggle between just accepting it and still searching for answers.

Another thing I have thought about doing is going to a neuro-otologist (a brain/ear specialist) to make sure nothing was missed. That may be my next step, but I get tired of all the doctor's visits and such.

Have you thought of some other things too?

I have impaired VOR cancellation. One doc labelled my problem as visual vestibular mismatch.

I have found the following to be most helpful:

-Vestibular therapy
-Vision therapy (trained sports optometrist)
-Decongestants, and saline rinses (I have non-allergic rhinitis which flares the symptoms)

RR,

I'm the same way as you. Constantly fighting between letting go, living life and seeing what happens, and being convinced there is more I can be doing to heal my brain or mitigate my symptoms. I think a healthy dose of both is okay, I just need to learn to not be obsessive in my quest.

I went to a neuro-optometrist 2 months into my injury. He saved me in the sense of prescribing me glasses I needed desperately to cut down on headaches and eye strain. Other than that, I didn't see much use for him. He gave me some tracking exercises to do at home, but otherwise I thought he was too pricey for the treatment I was receiving. He also wasn't very attentive to my vestibular issues and kind of shrugged them off. I am going to a different one in a few weeks to get reassessed, because my tracking is off again, and I need help picking out quality sunglasses. Every time I try to sit outside in this nice weather I get super dizzy and disoriented. Do you experience this?

Best of luck to you with your appointment!

I had both issues. I made it back to 99.9% back but I've relapsed again the last 10 days. I feel your pain because I'm 45 as well and they say it takes more to heal as you get older. Its rehab and I'm like you, its hard to be patient but you have to look at how much farther ahead then where you started at. Its sad to know how many friends have had similar issues. Good luck and stay strong. Happiness will return much like Jon Snow!

Hello everyone,

Just like you, I feel dizzy with movements and have an extreme anxiety and I think developed a depression overt not being able to do anything and stay at home and on the couch most of the time ( I’m 2 months PCs). I actually had an improvement 2 weeks ago and that’s when i has my guests VT, neck PT- that set me off and sent me to square 1.. a few days later I also had to do Rivera our 2 miles to pickup my son- which made things even worse...
Now I’m just wondering if I just need to be on bed rest to get back to where I was ( because that’s what really helped me to get better to begin with)...

I also had to go to ER for a horrible head pressure and headache, where ER doc mentioned if only people with PCS stopped using screens , maybe the symptoms wouldn’t linger as much.. what are your thoughts?
Do you notice that screens set you off big time and delay your healing?
How does it demonstrate?
Thanks for your response!