"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!