Long-term PCS Treatment & Tips?
 

Hello all,
Was hoping to pull from your collective wisdom on what has helped you to recover? In my particular case, would like to hear your thoughts on the vestibular system, specifically around an inner ear imbalance and impaired vestibulo ocular reflex :eek: Know it's different for every person, so here's my story:

Had my first severe concussion playing soccer back in '94, was told I lost consciousness for about 1 minute, memory loss for about 20 minutes, but thankfully had a full recovery. Had my second severe concussion, also playing soccer, in roughly 2002. Not so lucky on this one; PCS took about 1.5-2 miserable years to recover and get back close to normal.

Had about 4 good years after that, give or take, but had a setback around 2008 in which had tingling starting in hands/feet, difficulty taking a full breath, then ears suddenly "filled" and got heavy, started getting waves of dizziness, difficulty walking, imbalance, trouble focusing, etc. Not sure what precipitated the change and still suffering 5 years later.

Thought it was something different from concussion for quite some time, but have come full circle now. Diagnosed with secondary endolymphatic hydrops through an eCog test within the last 3 years. Have seen lots of docs (ENT, neuros, opthamologist, chiros, vestibular PTs, etc.) to no avail.

The biggest thing that drives me crazy is a constant feeling of imbalance and brain fog that just never goes away. I'm convinced this is caused by the inner ear imbalance, as well as an issue with my vestibulo ocular reflex (VOR) where everything is always "unstill" and my eyes don't track properly.

Anyway, anything anybody knows of to combat the dizziness, imbalance and brain fog would be greatly appreciated. Thank you!!!

deepsea,

Welcome to NeuroTalk. Sorry to hear about your struggles. If you have not already started a brain nutrition regimen, I suggest you read the sticky at the top Vitamins and Supplements.

Also, get the finest imaging and diagnosis of your upper neck. Not just a chiro who does 'twist the head and pop the neck' but someone with very specialized upper neck skills. Treatment should be gentle and you will need to support it with disciplined posture, especially during rest and sleep. It takes months to stabilize upper neck injuries since ligaments are slow to heal and change. Thus the need for good posture discipline. The tingling suggests an untreated upper neck injury.

I don't know if these will help but they are very common issues with those suffering prolonged concussion symptoms.

Please let us know how else we can help.

My best to you.

My neuro-otologist just prescribed SERC (betahistine) to me for inner ear/vestibular disorders and I haven't tried it yet. It's only available in Canada but a US doctor can prescribe it.

My inner ear disorder came before my concussion, but the things that helped me in the past to minimize "attacks" of ear fullness, imbalance, brain fog, and in my case hearing loss, were very similar to concussion recovery: drinking lots of water, taking vitamins, getting enough sleep, avoiding stress and exposure to chemicals, low sodium diet, avoiding MSG, sodium nitrates, caffeine, and especially alcohol.

Sorry you're experiencing these things, best wishes.

I agree with Mark, have you been to a neuro that specializes in cervical spine and brain injury and have you had a c-spine MRI with contrast? I had my TBI about a year ago and my PCS is still going strong! lol but I went to an excellent vestibular therapist,she got rid of my vertigo but my dizziness is still there but it sounds like your inner ear troubles are more chronic than mine were, I hope the info helps.

Vitamins
 

Hi Mark,
Thank you for your response. I took a look at the post on vitamins at the top and that is quite the regimen. I've experimented with B vitamins before and had some experiences that were not altogether pleasant. I forget exactly which B vitamin I was taking at the time, but I recollect feeling very buzzed and agitated, almost like an extreme caffeine high.

Do you have any recommendations for how to proceed with the vitamins? Did you start taking everything at once or did you add to the regimen gradually? If I want to start out and add things slowly, what do you recommend starting with and at what doses?

Thank you so much for your time and consideration!
Kevin

Hi Joby
 

Thank you for your post! I do not remember the specific specialty of the neuro I saw unfortunately, but I'm guessing it was not in the area of cervical spine and brain injury. I've been to a number of chiros who have done upper neck imaging but none of them specialized in concussions per se.

I have never had actual vertigo with the spinning thankfully, just the ever-present dizziness/feeling of my world never quite being concrete. I am thinking a really good vestibular therapist who specializes in concussions might be the way to go though. I've seen a few, but will try to find one who specializes in the hydrops/VOR issues or at least concussions specifically.

Really glad to hear she was able to get rid of your vertigo. Hope you keep improving and can get rid of that dizziness!!!

Were any of the chiros specialists in Upper Cervical chiro like NUCCA or Atlas Orthogonal ? Did they do something different than the 'twist the head and pop the neck' treatments ?

Have you had any gentle traction with gentle manipulation (like a massage) of C-1 and C-2 ?

I have been treated by many chiros with a drastic difference between those who could help me and those who did not.

I have not heard of people struggling to take B vitamins. Some say B-12 leaves them feeling awake. I wonder if something else was happening when you felt buzzed and agitated. I suggest you give it a try again. Maybe you are so deficient that even a starting dose makes a difference. Start with a B-50 complex and add 250 mcgs of B-12. The rest of the regimen should not have any issues. I was started on it cold turkey 30 years ago and it was life changing.

Hi, I am also new to this board but have suffered numerous concussions in the past and lived with the brain fog for years. What finally helped me is Cranial Sacral Therapy which helped get rid of the brain fog over a few months of treatments. Be cautious if you are going to do this because I have gone to many people who say the can give the Cranial Sacral Therapy and some definitely don't know what they are doing. I am getting it for my current concussion and I'm not getting quite the same response yet but I have very different symptoms then I have ever had in the past.

yogismom,

What kind of CST is being done ? There is a wide range of therapies within the CST concept.

Please let me know how you like the SERC after you've taken it for a bit. The only thing I've tried specifically for my ears was a diuretic, which didn't do anything.

Funny thing for me is that alcohol tends to help sometimes when I feel very dizzy. Kind of counter-intuitive, but seems to dull the senses enough to settle things down for me a bit.

Really sorry to hear about your inner ear disorder, and a concussion on top of it, ugh. Hope you are able to find some relief.