Conditions Worsening, Any Thoughts?
 

The decline has continued and symptoms and restrictions are now:

-Cant drive - major eye pain and strain after driving even just two minutes that lasts for hours

-Cant watch tv - used to be able to cover an eye and watch a little at a time but now motion on screen and brightness is too much

-Cant do iPhone or computer - causes pain almost immediately

-Have a lot of eye pain, eye strain, dizziness, headache, light sensitivity

-Vestibular therapy, prism glasses, and syntonics have all individually made things worse when I've done them

-Brain just feels like it cant handle much and the threshold is worsening

-Imaging all looks good, and bloodwork same

-Testing shows some vestibular deficiencies, convergence insufficiency, maybe vestibular migraine

-Anyone on here have similar issues and what has helped?

It's been awhile, here is your previous thread that might have some additional information.
Get dizzy and overstimulated watching TV

Have you followed up with Drs as this has gotten worse?

For the tasks that you struggle with, rest then gradually increase the exposure to those triggers. Do just enough activity to cause mild discomfort, but not to much to cause a setback. Rest for a few days to recover, then do a little more. Gradually increase your activity level each week.

There may be some underlying conditions that are triggering your symptoms. It could be one of these 5 things:

1. Blood Flow
2. Inflammation and hormone dysregulation
3. Visual and/or vestibular dysfunction
4. Neck dysfunction
5. Psychological

So you have to check and treat all the possible causes. You mentioned vestibular deficiencies so continue that treatment.

A neck injury can be caused with a low G force event and the symptoms overlap with concussion symptoms so get your neck checked out.

Inflammation could be cause by a poor diet, leaky gut, or microbiome imbalances. I think you mentioned some gut health issues, so continue promoting a healthy microbiome.

Eat an anti-inflammatory diet. Cut out sugar, processed foods, fried foods, and seed oils. Eat lots of healthy fats, fish, protein and veggies.

Exercise is good for blood flow and circulation, so do light - moderate aerobic exercise.

Practice good sleep hygiene so you get rejuvenated at night.

Yes I've continued to follow up. My neurologist was thinking it may be migraine for a while so we tried different injection meds but they didn't do anything. His last appointment he told me I may need to consider going on long-term disability and he referred me out to a different neurologist that I'll see in September.

My ENT specialist referred me to an optometrist and they had me try prisms but those flared me up worse. He says I have convergence insufficiency and binocular issues so will need to try to treat it with therapy, which I've tried before and it didn't help but maybe he does it different.

Thanks for your response Drew. As far as some of your items above:

1) Blood Flow - I have had an MRA/MRV done of the brain and it was normal so that may rule that out? I do wear compression socks and think that has helped me return to normal exercise levels.

2) Inflammation and hormones - I did hormone testing a while back and think it was mostly normal. Sometimes my brain does feel inflamed but not enough to show on an MRI as that has been clean.

3) Visual/Vestibular Dysfunction - I definitely have these based on the testing done by both parties. Problem is whenever I try to treat it with vision or vestibular therapy it either does nothing or flares me up, sets me back, and brings on additional triggers that don't really seem to subside over time. It's like my brain gets stuck so if you push it a certain way it reacts and then doesn't recover or bounce back.

4) Neck - I've thought for a while this may be at play but I've worked with a NUCCA chiropractor and they don't think it's likely contributing to these other symptoms. I've also had flexion/extension MRI's and supine of the neck. I submitted all that imaging to a specialized radiology team that specifically looks for cervical instability and other neck conditions and they didn't see anything. I suppose I could try a Digital Motion X Ray but those are pricey and the neck just doesn't seem likely at this point.

5) Psychological - There's certainly some of this involved now as I'm really depressed not being able to do much of anything without it causing me pain and I'm also anxious as I haven't been able to get much help and have been pretty thorough so it feels like there's nothing left to explore. I will say that I've been doing CBT/Talk Therapy weekly for over a year now as well as have tried some antidepressants (I don't tolerate them well), Ketamine (didn't tolerate it well either), and some other drugs. I do ok with Olanzapine as it seems to help some but what else could I try that I haven't on this front?

Thanks for any additional thoughts you may have.

Find a behavioral optometrist or neuro-optometrist to check your eyes.

Home | Neuro-Optometric Rehabilitation Association

A neuro-ophthalmologist might be worth considering....

And endocrinologist might check thyroid function.

Thanks Mark. Neuro Opth says all looks good. Am working with Behavioral/Neuro Opt right now. May be a slight vertical imbalance so we tried prism. I threw them on for five minutes and got dizzy and it flared me up and my symptoms have been worse for 10 days since. Going to try some vision therapy and other things potentially like patching but so far rough start.

Although psychological issues do contribute to symptoms, I don't think drugs such as antidepressants or antipsychotics should be used. They may provide temporary relief in the short term, but they can hinder recovery and make it worse in the long term.

Seek treatments that target the underlying causes of psychological issues, because drugs don't do that. For example, Inflammation is a factor linked to both mental health and persistent concussion symptoms.

I think I need to potentially focus on inflammation as therapies don't seem to be working and maybe it's just because things are too inflamed. I do know that some antidepressants can have some strong anti-inflammatory effects so wondering if that may help at all even if it's temporary while I work on everything else.

I've tried DHA and EPA fish oil supplements from Nordic Naturals and they didn't do anything. Wondering if maybe I need to do the 3 grams as maybe I just wasn't doing enough?

It's very difficult for me to do the gradual exposure because things keep getting worse and because there's so many variables. A month ago I could look at TV screens some and do okay with watching sports here and there. Now I can barely look at a screen for 10 seconds without it causing issues. Also, how much work did I do on my e ink monitor to put stress on my system that day can play a factor. If I just sit there and stare at a wall all day and then try 1 minute of TV then it may have a better chance of success than if I did other things to strain my eyes so it's just difficult to try and build stuff back because almost anything I do puts stress on my symptoms.

Check out Complete Concussion Management on YouTube. Look for his diet and inflammation videos.

To answer your question about anyone else with similar issues, yes, I have.

My condition kept getting worse from multiple head bumps and overdoing it, to the point where getting out of bed or reading made me dizzy.

So I basically stopped doing the activities that triggered the dizziness, because getting dizzy made it worse. Unfortunately, that meant lying in bed in a dark room with my eyes closed for 9 months. Then I gradually built myself back up, gently increasing activity, resting 3 days, and repeating.

For example, during the worst of it, I couldn't read at all. Then I tried to read one paragraph of a book and had to rest 3 days to recover. Then another paragraph. Then a page. Then 5 minutes. Etc...

All while eating a healthy diet with fresh ingredients and no processed foods.

Today I'm mostly symptom free and can read all day and go on road trips and concerts.

My case and treatment approach was extreme, but it worked. I don't want to say whether or not you should do what I did, but I'm sharing what I did.

Do you have anyone who can help care for you? So you don't have to do the tasks that make it worse? I had caregivers that helped me.

It's tough right now as I'm still employed somehow. Made my sales number last 5 years so think they're probably worried about firing someone cause of disability.

I will say my mental health is really bad right now to where some days I'm suicidal. This has led to me staying with my mom instead of my two kids and wife who may now be leaving me.

I dont have a diagnosed concussion so my family thinks this is more a mental health problem. As opposed to rest they're trying to encourage me to get out and do more.

Testing has shown I have saccades to reveal vestibular issues and convergence insufficiency. Potential migraine or vestibular migraine. Really don't have what i would consider balance issues but just cant tolerate the motion on screens or lately the motion of me walking or being in a car. I did have a concussion a number of years ago and it resolved in a couple months. These symptoms have all felt similar.

Thank you for sharing your story and you're a jedi for your recovery man. I can tell you this, if i could make a deal and stay in a dark room for 9 months and guarantee i could recover as well as you Id sign up today.

I hear you on the antidepressants and I really struggle to tolerate them. I did one last year for a couple months and it was hell but in hindsight am wondering if they calmed my brain and reduced some symptoms a little so that's why I'm considering. Id much prefer 5-HTP but it makes me dizzy.

Last thing I'll mention is I am able to handle 20 minutes on a Peloton now. At the start of all this I got pressure in my head when exercising so couldn't but slowly built it up again. Sadly it doesn't reduce any of my symptoms but at least helps me a little mentally.

Let me know if you have any additional thoughts and thank you!

Just listened to his diet and inflammation one. I did an elimination course maybe 5 years ago. Found dairy was an issue so i cut that out. I've been off alcohol a year now. Don't do much sugar. Gluten didn't bother me when I reintroduced. I could cut that down a little and may just need to add more fish and anti inflammatory foods.

Sorry to hear about your situation snappydad.
I went through a similar journey. Minor tbi resulting in dizziness and nausea. Work related and workmens comp doctors told me to keep working, it will get better.
It got worse, not better. Denied disability. Took over a year to feel normal again. I was an IT engineer. Worse time of my life. That was 8 years ago. I'm very susceptible to reinjury to this day.
If I had to do it again I would NOT work through it. I would rest until better.
James

James,

Did you ever get a vestibular assessment?

Just as a going over a pothole with a bicycle is not a concussive event, most of the triggering events suffered by people with prior concussions/TBI are not concussive.

They can be and often are only whiplash events that only requires a 4.5 G movement. A concussion requires 60 to 90 Gs of movement.

They can also be vestibular events that require a vestibular therapist to help the crystals get properly positioned in the inner ear.

Never had a vestibular assessment. I doubt I need my crystals reset. My understanding is this is needed when vertigo is presented. I've never experienced a spinning sensation. Only dizziness.
I realize potholes do not cause concussions. What I was trying to say is if you are in recovery mode it may trigger symptoms. This is called second impact syndrome. Could be very mild or fatal.
I'm currently in the midst of a relapse. Two falls within 2 weeks. Both falls landed me on my right hip and right arm. No head hits. No symptoms after first event. Right after second event I walked into a museum and after a few moments I felt mentally overwhelmed. I've had mild symptoms for the last 12 days, dizziness mostly.
I'm a regular biker and have stopped. The trail I bike is very bumpy and seems to make symptoms worse afterward. Normally it doesn't bother me.
So yes, I would say that potholes may trigger symptoms, did for me.
And since I assume most readers are recovering from head injuries I advise caution.

That pothole IS NOT second impact syndrome.

Second impact syndrome is a potentially deadly condition where the brain has not yet recovered its ability to regulate fluid pressure within the skull after a previous severe concussion where fluid regulation was seriously affected. The prior concussion would have included prolonged serious headaches and other serious symptoms. The new concussion would cause a cascade of fluid pressure disregulation that can cause the brain to herniate into the brain stem or suffer other life threatening conditions.

Your issue sure sounds like neck instability and whiplash. Both whiplash and concussion cause the same or very similar symptoms.

Vestibular disturbances do not necessarily cause a spinning sensation but they can cause dizziness.

Biking a rough trail can easily disturb the crystals, especially with the head tipped forward and to the side. I have had multiple vestibular disturbances over the years, twice this past year. Both were in different parts of the crystal. One time, I was crawling under my motorhome and bumped my head as I was looking to the side. It was an instant dizziness.

First of all, thanks for your opinions. It's good to hear other perspectives.
I agree that my latest episodes were whiplash events. Both impacts were falls onto right side, no head impacts. The second fall happened two weeks after the first and was much milder than the first. The first was a hard impact with all my weight. I think damage was done on the first fall even though I had no symptoms. The second impact, although mild, triggered symptoms. I'm speculating because the first was still healing. Dizzy, disoriented and headaches. And a telltale feeling of pressure inside right temple which is the side I fell on. It's been over three weeks now without improvement.
Trying to be patient but it's worrisome. I had PCS in 2014 for 15 months of misery. Nothing worse than a brain injury!

"The first was a hard impact with all my weight. I think damage was done on the first fall even though I had no symptoms. "

This idea explains your biggest struggle.

Damage without symptoms.....