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Lingering PCS - Questions

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Old 04-30-2019, 10:44 AM   #1
tyler123452
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Default Lingering PCS - Questions

I'm a 26YO with PCS for 6.5 months now and am frustrated by the lack of progress. I have a few questions that medical professionals have been unable to answer. If anyone can provide potential answers based on their experience or knowledge, go for it.


History
Hit back of head on wall 09/30/2018 on vacation in Europe. Light sensitivity, felt off after. Cleared up after a few days. Hit head 2x on low ceilings, became symptomatic again. Upon returning to states, was able to work in front of computer for 2 8 hour days and play video games the next day. I felt tired after about 6 hours of work, but not terrible. The next week I started to feel terrible - bad anxiety, blurred vision, dizziness, lightheadedness, slow brain, etc. Went to doctor.

Since then, I've been working with the local (Minneapolis) concussion clinic. Most of my struggles at this point involve using my eyes. Light sensitivity has decreased, but I struggle to read and do screen time for more than a few minutes at a time without some combo of dizziness, lightheadedness, fatigue, poor mood. I was diagnosed by an optometrist with previously undiagnosed visual problems and have been doing visual exercises and wearing prism glasses and readers along with vestibular exercises. Still, I don't feel like I'm getting better at using my eyes without feeling like crap. I'm working part time from home, 15ish hours per week. Work tolerance and symptoms fluctuate significantly. The following can bring on symptoms: eye usage, postural changes (ex: sitting down), anxiety, long time in busy envirnoments. I'm on Zoloft and behavioral physch for the anxiety which have helped. The doctor keeps saying something like "hang in there, it'll just be a few more months", which is obviously frustrating considering it's been more than a few months. I feel like I'm better at managing the symptoms than I was 5 months ago, and some symptoms (ex: light sensitivity) and things that bring on symptoms have improved, but others (visual fatigue, succeptability to postural changes) have not.

This is a pretty summarized history, and I can provide more info as needed.

Questions
-The prism glasses are less visually fatiguing than my old glasses, but still are more fatiguing than contact lenses. No one has known why; they expect glasses to be easier, as was the case before the concussion. Does anyone know why?
-I've noticed a light pulling sensation at the outside of each eye that I think is there constantly. It goes away briefly if I stretch the side of my face and neck. My eyes feel more relaxed when it's gone. Do you know what this is, if it matters, and if so how to treat?
-I've been seen at a local optometry practice that has experience treating patients with TBI. I have not seen a neuro-ophthalmologist. Do y'all think I should? Has anyone had more success with neuro-ophthalmologists than optometrists?
-Is it worth trying no screen time at all for a few weeks?
-Has anyone else had succeptibility to postural changes? What is the cause and solution?
-Anyone else with a similar trajectory have other things that they did that helped?
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Old 04-30-2019, 12:40 PM   #2
Jo*mar
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Might explore Trigger points -
Trigger point information {TrPs} for short

and Upper cervical chiropractic..
Up C Spine
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Old 05-04-2019, 04:53 PM   #3
Bud
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See a neuro, I didn't at first and nothing changed.

When I went to the neuro Mark in Idaho found for me life changed...I was in therapy for a year but a year is nothing to regain what was lost.

Bud
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Old 05-06-2019, 10:42 AM   #4
tyler123452
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Thanks Bud. I'm trying to find a local one (MN) now. Questions for you:
-Which neuro did he find for you?
-What did he do for diagnosis/treatment that changed your life?

For Bud or anyone else:
-Is there a gap in the ability of different neuro-opthamologists for treating PCS, or are the all roughly equal in competence?
-If there is a gap: I have a correspondence with Dr. Eric Singman from Baltimore. He sounds like a beast. I don't have enough posts to include links, but his bio is easily found on Google. Is it worth flying out there to see him or any other PCS expert neuro-op?
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Old 05-06-2019, 10:34 PM   #5
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Hi, Tyler.

I've had a large number of treatments in Minnesota. I know a few good places for treatments and unfortunately many, many places that left me with few to no results. Most of my results frankly have been at home or nature, with mostly inexpensive or free implementations.

Unless you have tons of $$$, I'd suggest not going to Baltimore. Dr. Cole is fantastic. Concussions - Woodbury Eye Care Clinic

Why your visual system is taxed and not healing may be due largely to metabolic issues. Think of working out a muscle and not giving it the raw materials (vitamins, minerals, proteins, fats, and sugars) to recover and get stronger. You'll just burn out the muscle faster by working it out and it will atrophy.

Your brain or brain regions are most likely in energy deficit states and you need to increase vital nutrients to heal. All the therapies and treatments won't work if the environment in the brain is not conducive to healing.

Jo*mar made a great suggestion. Neck and back injuries can jack up your vision. Poor posture that results in strain on your muscles and nerves can massively effect your vision.

It took years before I found progress. I'm doing quite well right now in many regards.

Shoot me a message if you have questions.

-Jacob
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Old 05-08-2019, 02:42 PM   #6
Mark in Idaho
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Tyler, I helped Bud find a Neuro Optometrist. He typo'ed.

I researched for him at NORA Home | Neuro-Optometric Rehabilitation Association

I went further than just finding behavioral optometrists. I did some research about each one. Some are "also does neuro rehab" but some have a special interest in neuro rehab.

If you are near Chicago, there is an excellent Neuro Optometrist The Mind-Eye Institute : Neuro-Optometric Rehabilitation

Dr Zelinksy is very busy and hard to get at appointment with.

Insurance does not usually cover this therapy. Some can get a referral and authorization. If your MD will recommend it, fight for it.
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Old 05-09-2019, 12:22 AM   #7
Bud
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Tyler,

Check out the NORA site.

After all the medical doc visits I had that were of little to no help, the NORA site described me perfectly.

I did a year of vision therapy that helped me to keep my right eye looking where I wanted it too. I did not realize the level of complexity vision and the interpretation thereof require of the brain, it can be a huge energy draw on the wounded brain, fascinating stuff.

Bud

Last edited by Bud; 05-09-2019 at 12:38 AM.
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Old 05-15-2019, 10:58 AM   #8
tyler123452
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It is fascinating. When your head is healthy, you don't think about it. But when it's not and you're in a busy environment, it's like**** **** how do your eyes and brain take in all this.

The NORA website sounds describes me well too. Some of the items from the common vision problems page apply. I've been working with Bright Eyes Vision Clinic (Minnetonka, MN) for a few months, and have seen a NORA-certified optometrist there. I'm planning on starting their vision therapy program. MD recommended it. Do you have suggestions for how to get insurance to cover?

JBuckl, you mentioned nutrient intake/metabolic issues. Do you have any specific suggestions in terms of diet and/or supplementation or preferred resources on this?
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Old 05-15-2019, 03:49 PM   #9
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-Quality Fish Oil. I cannot stress this enough. Check out Dr. Michael Lewis' work and this podcast:

How To Heal From A Concussion

-Nutrient Dense Foods

-Anti-Inflammatory Diet for sure.

If you really want good progress, try something like Dr. Terry Wahls, Cavin Ballaster, and Dr. Bredesen promote. Dr Wahls reversed her MS, Cavin has made tons of progress with a ketogenic diet based off of Wahls' protocol. Bredesen has reversed lots of Alzheimer's cases with intermittent fasting, ketogenic diet, supplements, stress reduction, sleep improvement, and physical activity.
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