In my opinion, you need to have a Neuro Psych Assessment. This will give you the understanding to inform your family so they do not try to fix you or push you. Pushing is counter to improvement. The brain is not like an injured muscle. You cannot push through.

You need to seriously slow down. I can see why you are struggling so. You are stressing your brain out. You are likely used to high achievement and your family is expecting it to continue. High achievers have the hardest time with mild cognitive impairment issues.

And, stop doing research. Your complaints sound like you are reading them from a web site list. Self-diagnosis of the various symptoms leads to over-diagnosis of many symptoms that are often minimal or overlooked. Yes, some are real physiologically caused but others are likely confusion that arises from the stress you are subjecting yourself to. Try to limit focused effort to 2 hours a day done in short 15 to 30 minute stints. You can't afford to push harder.

Dr Abram's concussion clinic may respond to a call. I doubt you will get to be seen by Dr Abrams without being seen by a staff resident first.

Many cognitive struggles are magnified by stress. I know this personally. I've lived with it for 50 years with a roller coaster ride of ups and downs. Pushing causes brain clogs or brain freezes. Getting past them means letting go and slowing down. Slowing down means you get a chance to see how your brain performs in low stress. You many need months before you can start increasing your effort/stress levels.

I could write a book about my experiences with stress induce cognitive failures. I dropped out of honor program college because the stress was giving me such a wild ride.

I hope you can find the strength to slow down and get your family to give you a break.

My best to you.

Thanks for your advice, I hope that some of what you are saying regarding over-documenting symptoms worsening ones condition is true in my case. I will take what you have said and mull over it as I try to adapt to a more restful lifestyle.

I am due to have a neuropsych test in some weeks and am hoping that will lead to some occupational rehab and possibly vision therapy to help with some of the functional deficits. In the mean time, I have started taking the vitamin supplements suggested on the sticky. One of my largest problems is the general state of dazedness and cognitive fog, which makes everyday life very disorienting and unreal. I hope that some of this sense of being "high" and not myself will abate with time.

All best and many thanks!

Goodgrief, sorry about your problems. It looks like your finding your way closer to solid ground in this discussion. I second Mark's Amen Clinic recommendation. Less to do with Daniel Amen and more to do with the SPECT scan/hyperbarrick oxygen combo. I've researched this treatment and it seems promising for cerebral blood flow rejuvenation.

Cerebral blood flow becomes restricted in targeted regions of the brain following TBIs and creates hyper and hypo-active regions measured in blood flow. This manifests in an endless array of symptoms depending on the particular brain structure affected. This is what the SPECT scan (interpretation) reveals. Hyperbarrick oxygen shows promise in correcting these areas. This, I believe is the basis of the Amen Clinic.

Another aspect of brain health that is highly neglected by conventional medicine is neurotransmitter balance. This work has been pioneered by Dr Eric Braverman (see: The Edge Effect: Achieve Total Health and Longevity with the Balanced Brain Advantage: Eric R. Braverman M.D.: 978142722479: Books - Amazon.ca). He discusses balancing the 4 primary neurotransmitters (dopamine, acetylcholine, serotonin, gaba). If you consider your symptoms and the pharmaceuticals you're taking, they can all be linked back (in one way or another) to these 4 neurotransmitters.

I hate to throw large research projects out at you, I know what its like to go where doctors wont, all the while suffering from a brain injury. But knowledge is your most powerful tool for recovery. Knowledge, patience, persistence and belief will pull you out of hell and get you living again.

GG,

A Neuro Psych Assessment will not really look at vision functions. You need a separate work-up for that. NORA Health Care Locator Custom can direct you to a clinician or just google behavioral optometry and your city. Neuro Ophthos can be helpful but Behavioral Optometrists can also be a big help and are often easier to get an appointment with.

I was not recommending Amen Clinics, just that it was a possibility. I have never heard that they do hyperbaric oxygen therapy. HBOT sounds good but the research has not proven that out. Many on NT have spent thousands on HBOT with no noticeable benefit. A few have benefited.

Quality sleep is the highest priority. The brain can only flush toxins during slow wave sleep.

One of the goals with the vitamin regimen is to help the brain properly balance the neurotransmitters. I take L-Theanine and 5-HTP to help with this area.

Keep in mind that the brain is highly suggestive. It can easily take on or magnify a symptom if that symptom has become a focus. That is why researching symptoms can be counter-productive. A symptom that is at a minor level can become more extreme by just focusing on it.

So, get the vitamins going. It takes weeks to see any improvement if not longer. Get the Neuro Psych Assessment. Get a Behavioral Optometric Assessment (Berkeley has a behavioral optometrist), slow down your life with a focus on reducing stress. AND, Try to learn to just go with the flow of how your brain is functioning. Don't fight against it or try to push through. Find something to keep you mind occupied that is not stressful.

My best to you.

Hello Goodgrief,

I'm sorry to hear about the events that have occurred in your life. I've experienced a lot of suffering from this condition.

This topic of benzodiazepine use hits home to heart for me. I have been on 1 mg lorazepam three times a day since my initial concussion that caused PCS back in 10/2014. I was already taking the medication prior the incident and was never instructed to discontinue so I have been taking it since. I have had ambitions to try and taper off of it since I haven't made much progress in a while. Unfortunately, life stresses and other factors have deemed that impossible. I know that withdrawing now would be a torturous process as my brain is physically dependent on the medication.

I know you cited some studies about benzo use and TBI recovery. clearly it is not a good option but in your case I would be hesitant to think that any reduction in your recovery from now on will be due to that.

You and I both need to learn how to take breaks and relieve stress along with getting good sleep. It takes a lot of discipline but consider taking a 10 minute rest every hour or 30 minute rest every two hours and see how it helps. I've noticed a difference when I do that.

Lastly I will link an article which tends to be a little more neutral about benzodiazepine use for sleeping.

https://www.hindawi.com/journals/emi/2012/637171/

Hang in there, it will get better if you take the right approach.

Dan

Hi Hains,

I appreciate your taking the time to give your two cents. The role of neurotransmitter imbalance in cognitive issues definitely seems on-point to me. Thanks for the link Dr. Braveman's work. I must say I am impressed at the amount of research (I have seen some other of your well-informed posts) you are able to undertake. Sadly, this is not possible for me (yet?!), but I'll ask a friend to look into it.

Mark, I am doing a neuropsych test (finished the first portion on Friday). However, given my educational level and background, the neuropsychologist said that it might be difficult to detect change and that I should be happy not to be worse off, regardless of the difficulty it might take me to accomplish tasks. I know this is something that others have struggled with. Is it possible to have neuropsych results re-evaluated by others? Are there neuropsychologists trained in brain injury that one can find?

Also, when you mentioned a behavioral optometrist (thank you, by the way), did you mean one in Berkeley or affiliated with UC Berkeley? I also was curious about your take on recovery/restoration. I know that rest is very important and that some symptoms do linger on with over stimulation. I know too that I have not done enough cognitive resting, but one does wonder if some recovery would have shown up by now...I find that my symptoms have gotten worse as time has gone on, not better. Also, what about cognitive abilities such as processing speed? This sounds like something you have struggled with. Apologies for these questions, I know that there is no hard answer, but just wondering from your general experience.

Hi DannyT,

I'm so sorry to hear about your prolonged suffering and struggles with lorazepam. I'd be curious to know a little more about your injury and where you are currently, if you are comfortable sharing.

I have seen the article you posted, but I have found many articles and textbooks suggesting that the benzodiazepines do cause further degeneration. This being said, it is important to remember what many on NT have written about letting go of damage done previously and factors over which we cannot change. For me, the question is of particular relevance as my mild PCS symptoms became steadily worse as I was taking the benzos (and wine for sleeping when not taking benzos). Seeing as this severe set of PCS symptoms and cognitive impairment has not abated months later after stopping the drugs and abstaining form any alcohol, I can only assume that the drugs caused subsequent brain damage. For example, prior to bento usage, I could read but had difficulty with concentration and more abstract concepts, then after a few weeks of bento usage, had increased difficulty reading, and finally, after two months of the benzos, find reading and putting together multiple concepts near impossible.

Sorry for the long paragraph, I do understand that my experience may be very different from yours and I appreciate your willingness to share your story. What has helped you? Have you seen any recovery?

GG,

I'm just coming to this forum for the first time but I saw your thread and had to respond because I went through pretty much EXACTLY the same thing. I hit my head on a rock after a (rather serious) fall and went largely undiagnosed - after the ER visit and a normal CT scan, I was told I had a concussion and released. I never followed up and thought it was no big deal because this was back in 2007 and concussions weren't taken nearly as seriously as they are now.

At this time I was taking temazepam almost every night, prescribed to me for insomnia. I didn't notice any major changes right after the injury, besides some vertigo. But over the next few months, as I began my sophomore year in college, my cognitive function declined rapidly, to the point where I couldn't comprehend anything I was reading, my memory and attention span steadily worsened, and my reality slowly faded out. It took me a long time to realize what was happening, as I was too out of it to see how out of it I was. I was also drinking a fair amount of liquor that year which I'm sure made things much worse.

By the end of the school year the DP/DR were so severe I had no sense at all of reality or who I was anymore, and I could barely make it through my classes. When I realized what was happening I blamed the benzos and quit them cold turkey, which was a terrible mistake, as I went from total numbness to constant abject terror. But that's another story, as you weren't on benzos long enough to be dealing with withdrawal symptoms it seems. But I can confirm that I had the same experience - I got much, much worse after the initial injury while taking benzos, and had pretty much the same symptoms you describe. I am certain the benzos were a factor in my case.

It's been almost 10 years since this all went down, and I am only now finally pulling myself out of it (I'm also dealing with PCS from a concussion 3 years ago, but the cognitive issues haven't changed much due to that injury). I'll tell you exactly what's helped me, and hope that it will help you recover much, much faster than I did. I know what an incomprehensible hell it can be.

First off, I assume that you're avoiding alcohol? 9 years out I still can't handle even a sip of alcohol without my brain essentially shutting down, getting sloppy drunk, even blacking out after a beer or two. Cutting it out completely was essential to beginning to recover.

Secondly, how's your diet? I may or may not have had food sensitivities before the injury, but if so they never affected my brain. After the injury, a wide array of foods started giving me extreme brain fog that made the DP/DR, memory loss, and other cognitive issues much, much worse. I've read that the blood-brain barrier can be compromised in a brain injury, which is my theory as to why. Either way, the only way I'm able to function at all, even now, is on a strict paleo diet. When I eat clean my cognitive state is manageable. If I go even a few days eating anything pro-inflammatory, all the cognitive problems come back with a vengeance. Even in someone without specific food sensitivities, eating as healthy as possible makes a huge difference for brain health. Eating a diet high in (good) fat has been a game changer for me.

Next, I recently went through vision therapy with a therapist experienced in treating TBIs. I don't think I could have recovered without it. I was experiencing the same thing you mentioned in your other thread, the maddening feeling of seeing everything fine but being unable to process it. The VT helped a lot with my ability to read, process visual stimuli, etc. Apparently I'd had a focal and convergence insufficiency for years due to the injury, and repairing that has taken a huge load off of my brain and helped a lot with the cognitive fatigue I've also struggled with. Insurance doesn't generally cover vision therapy, at least here in Ohio, so it wound up costing about $1500 out of pocket, in total. So it wasn't cheap, but it was essential.

HOWEVER, the vision therapy was only half of the picture. The intervention that has helped me by FAR the most has been neurofeedback. I started out getting LENS therapy a couple years ago for the PCS from the more recent injury. It helped a lot with the pain and other symptoms, but I also noticed that it was helping with the cognitive problems lingering from the first injury as well. I was doing sessions once or twice a week, and it was slowly turning me into a human being with thoughts and emotions and an identity again.

When I had to move and no longer had a LENS practitioner nearby, I discovered NeurOptimal, and was surprised to find that it helped even more. I've had 15 or so NeurOptimal sessions now, and I can hardly believe how much of a difference it's made. I don't feel back to who I was pre-injury yet by any stretch, but I'm still improving with every session, and I can honestly say for the first time in almost a decade that I fundamentally feel like a human being again and my world and life feel like they exist.

Given your location in Cali I'm guessing you have a lot of neurofeedback practitioners around. I would recommend going with one of the newer forms of neurofeedback, like LENS or (especially) NeurOptimal, over the more traditional kinds as I strongly believe the newer ones are more effective for this sort of problem. Both of these newer versions are passive; the machine does the work for you and basically teaches the brain how to get out of the patterns it's been stuck in since getting injured. For me this has pretty much been the miracle I've been searching for every day for all these years. Every week my perception gets clearer, my comprehension gets deeper, and dormant parts of my psyche come back to life.

I've also tried many dozens of different supplements, therapies, etc. over the years. A high quality fish oil and vitamin D are crucial in my opinion, and I've also had some success with various other supplements if you're interested, especially ashwagandha for anxiety.

I really hope this is helpful. There's a lot more I could say but this is already pretty long. Let me know if you have any questions at all. It doesn't sound like you dug yourself into nearly as deep a hole as I did, so hopefully your way out will be much shorter.

BirdOntheWire,

Welcome to NeuroTalk.

It is interesting that you perceived positive results with LENS. We've had quite a few try it years ago. Most had negative outcomes. Only one claimed improvement. NeurOptimal has never been discussed but it sounds similar to other neurotherapy systems. ROSHI/pROSHI, Brain State Technologies, and others have been discussed. It would be great if any of these systems would publish double blind research or at least some peer reviewed research.

Some have found an anti-inflammatory diet to be helpful. We've discussed that many times.

Do you currently take any supplements ?

Thank you Mark,

I'm surprised to hear that so many here had negative outcomes with LENS - I've worked with two practitioners who had both seen success with various TBI patients. They've continued to update the system through the years, so maybe it works better now than it did then. Curious. You're right, NeurOptimal sounds similar in principle to ROSHI and especially Brain State Technologies. I agree that more research would be extremely helpful.

I take quite a few supplements. I currently use ubiquinol, PQQ, ALA, acetyl-L-carnitine, B complex with methylated B12, magnesium, quercitin, fish oil, ashwagandha, d3, and a probiotic, plus others I take sporadically. It's always hard to know what's working, of course, but I do better when I take them all than when I don't.