Hello All,

Recently stumbled upon this gold-mine of a resource/support group, and reaching out to share my story and get some feedback on my situation.

In early July of 2016, shortly after my graduation from university, I suffered a mild brain injury due to (as I later found out) a lack of oxygen during surgery. Because I was "cogent" post-operatively, no one investigated what might have happened. I brushed off the dazed state that followed the operation as due to physical fatigue, etc. The daze never lifted, however, and I began noticing cognitive impairment -- mild memory issues, difficulty in comprehending abstract ideas (I was in academia), as well as horrible mood swings and decreased emotional control. I became completely overwhelmed and tearful when when trying to organize/execute multi-step plans, my friends commented that I seemed angry and agitated and simply "not myself." About a month into this I started experiencing dizziness, extreme fatigue, vertigo when attempting to read, horrible night sweats, insomnia and sleep disturbances, and extreme sensitivity to light/sound, with welling sounds in my ears. Alas, given my newfound knowledge of mild brain injury, these early symptoms make quite a bit of sense. At the time, however, I had no idea what was going on, but it felt like I was dying. Both my GP and a psychiatrist I saw, though aware of my surgery, were certain that I was "crazy" and, as nothing was clearly amiss in my blood work, chalked it all up to anxiety.

To pacify me, they prescribed first Xanax (0.5 mg) and then Valium (2.5 mg) to take nightly. When I still couldn't sleep, my psychiatrist told me it was okay to drink wine/beer with the Valium/Xanax. After about a month of using these benzodiazepines, I noticed a dramatic worsening of my cognitive state. At a general level, I began to feel constantly confused and disoriented, operating in a state of complete brain fog. I found myself struggling to comprehend and retain basic information I had read, even from one sentence to the next. In addition, I developed fairly debilitating visual-spatial disturbances. I felt (and in some ways still feel) like I was losing my mind -- I found myself unable to process written information, unable to problem solve, operating in a state of slight detachment from the world. The basic act of thinking has become as difficult as moving through molasses -- not surprising when my entire operating system has become slow and riddled with injuries. Every few minutes, I experience memory blanks -- no idea what I was so intently concentrating on just a few minutes before.

Where I am right now: I finally received a diagnosis (beyond that of anxiety) from a talented ophthalmologist, who deduced that my vision problems were due to faulty processing on part of my brain. When I explained the host of cognitive symptoms I was experiencing, he got to work researching with some colleagues in neurology. The answer (though not the solution, of course) became fairly clear: I had suffered a mild hypoxic brain injury during surgery which was severely worsened by my prescribed benzodiazepine use. Though my doctor claimed to be unaware of it, there are numerous studies showing that benzodiazepine use in brain injury patients both causes further neural degeneration and therefore worsens cognitive impairment and also, in the words of one study, "delays indefinitely" any organic recovery.

Beyond being devastated, I am not sure what to do/expect. I am five months out from the initial injury, and stopped taking the benzos a month and a half ago. So far, every day is a struggle of confusion punctuated by spells of extreme depersonalization/derealization. Trying to find some kind of rehab but finding it difficult to do so without a positive "MRI" proof of brain injury and the non-typical evolution of my case.

Questions: is it worthwhile to seek out rehabilitation therapy? Any ideas on how to go about finding brain injury-savy psychiatrists/neurologists? I live in the SF Bay Area and I feel like I should be able to find some resources, but so far have been thwarted by the insurance company and (like many, in particular Mark in Idaho) original diagnosis of "anxiety." Anyone have experience in improving reading comprehension? I find that I cannot comprehend even children's books, though I can scan through "factual information."
Also, any idea what I can expect in terms of feeling completely unlike myself? I suspect the depersonalization results from 1) actual physical changes in my brain and 2) the fact that my processing speed is slower/there are many pieces which are not working and my brain is constantly aware of how "off" I am.

Advice: I have seen Mark in Idaho's post on vitamin regime and think I'll get started on that. Anything else?

Apologies for the lengthy and panicked post.

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Hi all,

Posted a long thread about the details of my case, but wanted to ask a specific question. Has anyone with brain injury had experience with benzodiazepines (Valium, Xanax, etc.)? I was prescribed both Valium and Xanax for several months following my brain injury and found that my previously manageable PCS symptoms became severely worse. Subsequently a specialist pointed out research showing that these drugs cause further neural damage and prevent recovery. Anyone else have an opinion/experience with this situation?

I can't post links here (I am a recent member), but relevant studies come up if one googles "diazepam brain injury," looks up Timothy Schallert, the lead author of one study, or searches for "brain repair diazepam."

Has anyone had experience with benzodiazepines after brain injury? I was prescribed 2 months worth of benzodiazepines (Valium and Xanax) after my brain injury, and found that after one month of the benzo usage my PCS symptoms were dramatically worsened. At the time I didn't connect the two factors as my doctors encouraged me to keep taking them until I found a specialist who told me to stop and explained that benzos have been shown to cause further neural degeneration and cognitive damage in tbi patients and to prevent all organic recovery. Anyone else had experience with benzos after brain injury?

Goodgrief20,

Welcome to NeuroTalk.

We have all know to avoid benzos if possible. They only mask symptoms while possibly cause new problems.

I'll try to read your whole post when my brain has the energy. It's too long with long paragraphs for me right now. Many of us do best when paragraphs are limited to 5 or 6 lines. We don't worry about splitting an idea into two paragraphs.

Can you tell us a bit about your anoxic injury ? I suffer from Central Sleep Apnea and deal with anoxic issues from time to time, just not as critical as yours sounds.

Have you had any diagnostics, DTI MRI, SWAN MRI, etc ?

Thanks for the reply, Mark in Idaho. I apologize for the format -- I tend to ramble and my posts got consolidated by the forum, so I realize that as a whole it is pretty unintelligible. I'll post a consolidated version of what I wrote, with better spacing, below.

I suffered a mild brain injury in July of 2016 which went undiagnosed for several months. On the day of the injury I merely felt "dazed," but over the next couple of weeks I developed issues with concentration, memory, severe insomnia, lack of emotional control (becoming extremely angry and agitated for at the smallest provocation), extreme sensitivity to sound, terrible dizziness, and tremors in my hands. These symptoms led doctors to prescribe 2 months worth of benzodiazepines (Valium and Xanax) to treat suspected "anxiety."

One month into taking above mentioned drugs cognitive symptoms severely worsened, including:
-- generalized confusion/brain fog
--- difficulty with organizing thoughts and reading comprehension
---- visual disturbances
-- extreme sensitivity to heat
--- feelings of derealization/depersonalization
-- difficulty deciphering conversation if background noise is present
-- consistent memory blanks every few minutes.


Because of these continuing symptoms, my doctor finally granted me an MRI without contrast, but, perhaps because it was done over two months after the initial injury, it was negative. I would love to get a DTI or fMRI but have not yet been able to because the first MRI came up clear.

In terms of diagnosis, I was first diagnosed by a neuro-opthalmologist who, after reviewing my surgical records, connected my PCS symptoms and difficulty with integrating visual stimuli to surgery in July during which I was given too high a concentration of nitrous oxide (an anoxic factor) and my blood pressure went very low, preventing adequate circulation of already oxygen-poor blood to the brain. However, as I seemed "okay" at the time, the oral surgeon didn't think the hypoxia had had much effect.

Where I am now: I have seen TBI therapist who diagnosed me with PCS. I have also stopped taking the benzos as there is clear research that they cause further neural degeneration in brain injury patients and prevents recovery. Prior to the brain injury diagnosis, however, I had no idea that I was causing further harm. I'm just curious as to whether anyone else was either misdiagnosed and took benzos/drank excessively (as the two are similar in effect) or was prescribed benzos by an ill-informed doctor.

My symptoms evolved from mild PCS to debilitating PCS after the benzos, so I wonder if the 2 months usage had the effect of repeated additional brain injuries. Currently 5 months out from incident with no improvement, not sure if that is due to the benzos or just the severity of the injury. Currently trying desperately to find neurologists/neuropsychiatrists/rehabilitation therapists knowledgeable about brain injury. I am in the SF Bay Area of CA if anyone has any recommendations.

Also, I have not wondering if anyone has recommendations on how to "rest" the brain...finding it difficult to sit/lie down without becoming agitated/anxious.

Apologies again for long post. Wishing you all strength and courage!

Goodgrief20,

Have you considered the possibility that you have reacted badly to the anesthesia ? Some people have had bad reactions to it. The gases used can have a myriad of problems. Propofol tends to be well tolerated by most but Versed can be tough. Versed is a benzo on steroids. Anesthesia can cause a condition similar to chemo brain.

You could check with the Amen Clinic in Walnut Creek Amen Clinics Northern California - Amen Clinics
I don't think they take insurance but a basic consult might be worthwhile.

MRI's are unlikely to show anything but a NeuroPsychological Assessment may be worthwhile.

Some of your symptoms sound like anxiety. This is not uncommon because the frustrations of other symptoms can raise anxiety levels.

More later.

My best to you.

Mark, is this true that benzos prevent healing indefinitely from brain injury? They prescribed me lorazepam early on after my injury because I was having such trouble with anxiety and sleep. I took it sporadically for a couple months. Did this prevent me from healing and cause my prolonged PCS?

RidingRollerCoaster,

I don't mean to alarm you, but I have found some fairly devastating research. I don't have any PDFs to attach, but I'll try to attach some links if I am able. In the mean time, you might want to take a look at a forum from last year by lacrossefan, whose story bears startling resemblance to mine. Unfortunately I cannot attach links as I am a new user, but if you search the site for "lacrossefan," the appropriate thread will come up.

Lacrossefan mentioned that after taking prescription lorazepam (ativan) he found that his cognitive symptoms worsened severely, in particular depersonalization, feeling in a fog, headaches, and memory loss. In my experience, mild PCS developed into debilitating memory loss, brain fog/general sense of being confused/in a dream, worsening of cognitive function (reading, communicating), and vision problems after taking valium and xanax. For both of us, the more physical symptoms (such as exercise intolerance) have now abated but the cognitive remain several months after tapering off these drugs.

The research I've found involves a couple of studies in which brain injured rats were given valium for three weeks. Researchers discovered "further neural degeneration" and reported that at the end of 9 months recovery was "delayed indefinitely." In rats without any benzodiazepam use, full recovery occurred over several months.

It is also interesting that Mass General banned the usage of Xanax back in the late 1980s as evidence of its negative cognitive effects on brain injured patients (in particular veterans, I believe) came to light. The name of study is "Recovery of function after brain damage: severe and chronic disruption by diazepam." Again, I can't attach a link yet but it should come up on google, and if you PM me, I'd be happy to send more of what I've found. Have you seen no improvement since taking the ativan? Or just less improvement than you would have hoped?

Here's to hoping that human brains are more resilient than those of rats, and that in the long term the benzo damage might heal! Would be good to raise awareness among fellow brain injury survivors, though, as it seems many doctors are not aware of the risks and prescribe benzos for the insomnia/anxiety found in PCS.

No, benzos can interrupt healing while they are being taken and long term constant use is dangerous. The occasional use is not a big risk. I have clonazepam for 'just in case' situations.

As they say, The devil is in the details.

The study Goodgrief is referring to shows that diazepam started at 12 hours post injury caused problems. Diazepam administered 3 weeks post injury delayed recovery during the time of administration but resumed within days of discontinuation.

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 ?