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.

Thanks for everyone's input. I know I mentioned one study in particular, and Mark is right to point out the nuances of it. There are many others, including textbooks, which mention that benzos cause further cognitive damage, but it is true that no study has yet ascertained exactly the amount of damage and whether or not it ever goes away in the long term.

It may be that my healing is simply slow/has stopped, just wanted to warn against potential dangers and see if anyone else had some insight. For those who come across this later, feel free to chime in. Seems like our collective experience -- as incomplete as it is -- may be the closest we will get to knowing the effect of these drugs on brain injury.

goodgrief20,

The other concepts worth considering is that many of the worst effects from benzos are when they are prescribed by PCP docs or OB/Gyn's to get anxious patients settled down with little to no follow up and often 3 times a day dosing. Benzos are grossly over-prescribed just as SSRI's are.

But, in some cases, the short term benefits from short term use is better than the detrimental effects of the symptom being treated. Bad anxiety attacks can be detrimental to recovery in a big way, especially when they become a habit.

Believe me, I am against benzos for maintenance use. I was on clonazepam before bed for almost a year. Not a fun time. For me, it was to stop a seizure like symptom and jerking during sleep.

Mark,
Thanks for weighing in -- I know I'm only repeating what virtually everyone has said on this site, but I appreciate your taking the time to lend your thoughts to our many, and endless, problems. Yes, in my case it was indeed prescribed a doctor who couldn't find answers in bloodwork and wanted a quick solution to my problems.


As I mentioned, I am five months out from initial injury, struggling enormously with the depersonalization and grief, reeling from what has happened and the fact that I bear almost no resemblance to the person I was pre-injury. Also trying to find out/understand how it could be that my symptoms became so drastically worse after the medication usage. I know that I am not alone in puzzling over the whys and hows (both practically and existentially) of what has happened, but thanks for listening.

I do feel rather despairing that my condition seems to have worsened, not improved. Has this happened to anyone else? Anyone seen no improvement in five plus months? Depersonalization and memory loss seem to be increasing, if anything. I am trying to be buoyed by the fact that others, such as you, are so many years out from injury and still hacking it. At this point, every instant seems interminable, and the future unfathomable. Likely this is due to the fact that, despite knowing intellectually that acceptance is the only way forward, my stubbornness and grief has prevented me from even the tiniest step towards it. I'm sure it doesn't help that my family is in denial.

To end this on a more productive note, though, very thankful to have found the site and everyone's support!

How much research have you done over the past 5 months ?

What have you been doing during those 5 months ?

Are you using your degree in a job ?

What meds did you receive besides the nitrous ?

Oral surgeons often use some intravenous sedation, too. Mine did.

Did they track your O2 levels ?

For the first month and a half I struggled through it -- had no idea what was going on and worked part-time. At about the 1.5 month mark the dizziness, insomnia, fatigue and visual/auditory sensitivity forced me into a kind of physical collapse. This was when the benzo prescription for nightly usage started.

About three weeks later the physical weakness abated a bit, and I spent another month doing research and being worked up by my GP and neuros who had no answer. Finally got a diagnosis from neuro-ophtho though he couldn't "prove" it to insurance without MRI proof.

Had no other drugs besides nitrous and Valium, Xanax, and one month of Prozac which did nothing. I have not been able to obtain O2 levels from surgeon. The office says they routinely monitor but don't have any records in my case. We do know that my blood pressure was very low during surgery so further lowering oxygen in brain.

Currently not working -- jobs I was eligible for with my degree I can no longer do bevause of cognitive impairment (cannot understand or recall complex material, cannot write academic level work). Tried to start a non-academic job cleaning and could not remember/process instructions quickly enough. Plus the visual disturbance and confusion make it hard to be in a workplace.

I am thinking maybe I need more absolute rest but I suffer from insomnia and cannot even lie down and meditate. I wonder if some of the inability to rest is due to cortisol hyper function?

Nitrous oxide can preciptate low B12 levels in people
Who are already becoming deficient.
There are many neurological symptoms thst arise from
B12 deficiency. This may be your problem and not
low oxygen.

It is time to try methylcobalamin 5 mg on an empty
Stomach daily. Mark can direct you to my B12 thread
On the PN forum..I am on a mobile device and it is
difficult for me to link and type tonight. Do not delay
As damage will continue until you address this.

Thanks for chiming in mrsD,

You are completely right about the effects of nitrous oxide on B12 and subsequent neurological problems which accompany B12 deficiency. Luckily I was aware of the nitrous-b12 relationship and did check my b12 levels shortly after the operation and they were normal (though I know that standards for adequate b12 vary from US to Eutope or Japan). I have continued supplementing my diet with b12 as part of general diet just to be safe, and my levels have been off the charts high for several months.

Thanks for your response! B12 deficiency is definitely something anyone (particularly those with vulnerable brains) should be aware of.

My attled brain meant to mention the B-12 connection, too. Be careful with how labs say your B-12 levels are normal. The range for normal is usually 360 pg/ml to 970 pg/ml. Docs and labs see 400 and say you are fine. But, many need to be at the upper level or above. I try to stay at or above 1000. You also need to add B-50 Complex (not B-Complex) to get the rest of the B package. The brain needs B6, folate, and niacin as a minimum for nerve tissue health. Thiamine (B-1) is also valuable.

The first thing I do when I wake up is take 1000 mcgs of methylcobalamin with water. I have breakfast a bit later. I also take 400 mgs of ibuprofen (arthritis and shoulder inflammation), 100 mgs of 5-HTP and 200 mgs of L-Theanine. I take this instead of an SSRI.

A month of Prozac is a short time to see any benefit. But, Prozac is very old and there are better SSRI's or SNRI's. I do much better with my morning regimen than I ever did with an SSRI. Being prescribed Prozac suggests the limited perspective of your doctor.

How low was your BP ? What was your pulse like ? Low BP with adequate pulse is usually OK. Low BP while reclined in a dentist chair can often be tolerated. If the brain is at the same level as the heart, low BP is not such an issue.

Did your receive any antibiotics after the surgery ? What was done, wisdom teeth ? Did you have any infection from surgery ? Any elevated white blood cells with blood work ?

Have you ever been tested for Lyme Disease ? I'm wondering if you are looking in the wrong place ?

Head back in a dentist chair can cause a beauty parlor ministroke from dislodging plaques from the vertebral arteries. A transient stroke (TIA) can cause symptoms but not be imageable. A SWAN MRI can show some blood flow changes.

The increase in symptoms can be due to depression that results from the initial trauma. Depression can be without any of the classic depressed emotional thought processes. I have experienced that 35 years ago. My thoughts were so muddled I could not finish a sentence but did not have any stinkin' thinkin', just cognitive shutdown. My psych got me started on the vitamin regimen.

If you have the common mutation called MTHFR and cannot methylate dietary folic acid and B12, you will test normal or high and still not have ACTIVE B12 to meet your metabolic needs.

This mutation is fairly common (up to 40% of patients now) and the incidence is rising as more people get tested.

These patients may have heterozygous (2 copies of the mutation) or homozygous (one mutation) and the latter allows those people to limp along until some environmental occurance/trigger happens to reveal the problem.

Here is a link to explain in more detail:
MTHFR Mutation | MTHFR Gene Mutation | What is MTHFR? - MTHFR.net

B12 in the diet is mostly unmethylated. If you have damaged intrinsic factor, or the MTHFR genetic mutation, diet is not going to provide enough B12 for you. Methylcobalamin 5mg a day can cost only pennies a day.

This is the link to our B12 thread here on NT at the PN forum:
http://www.neurotalk.org/peripheral-...12-thread.html

Many thanks for your replies Mark and mrsD. Really appreciate your feedback.

My B12 levels were originally 400 or so but after supplementation I have kept them up to 1000 pg/ml. I have not directly been checked for any of the relevant mutations, but I have had my methylmalonic acid checked, which indicates how well the body is processing the B12.

As for the operation, yes, it was wisdom teeth and I was under anesthesia for about 45 minutes. My heart rate was 44 and standing blood pressure prior to receiving nitrous was 100/70. My doctor is trying to obtain records of what my blood pressure was after administration of nitrous but surgeon has not complied. Some have mentioned the possibility of a TIA -- would it present the same PCS like symptoms? And would it show up on a SPECT now?

As for medications, I was given codeine and two rounds of amoxicillin as I developed two separate postoperative infections. That in itself was strange as I had previously been the type to never get sick. One doctor did mention that I might have some kind of infectious encephalitis, but nothing has showed up in blood work.

My white blood cell count was not highly elevated, and I was tested twice for Lyme by western blot, but I know that the test is considered somewhat unreliable.

I'm sure the depression is a factor, but I am also wondering if the stress of trying to find appropriate doctors and constant research for more information has been an issue. I have noticed on many of the threads that longer term survivors have mentioned that rest is key early on for recovery. With the exception of the week during which I was flat on my back from physical collapse/dizziness/hyper sensitivity to noise and light, I have been on the go. No rest and unable to sleep. Like others here I both cannot fall asleep and when j do I find myself drifting in and out of consciousness -- one part of my brain awake and the other almost hallucinating. Apologies if that doesn't make sense.

gg,

It sounds like you have exhausted most of the diagnostic tests except for a Neuro Psych Assessment and maybe some specialized testing they do at Amen.

But, finding a cause is not likely going to change how you need to manage your symptoms. Low stress living is important. Good sleep is also very important. I take gabapentin to help my brain let go so I can fall asleep. It was a replacement for the benzo I was taking and is much better and does not leave me drowsy the next day. I take 600 mgs and hour or 2 before needing to go to sleep.

I also occupy my mind with mundane thoughts, a movie, YouTube, etc. so I don't get thoughts going that are cognitively stimulating. Quality sleep with all of the stages is very important to helping the brain cleanse and heal from toxic stress.

If you can find a task to do with your hands that is not cognitively stimulating, that can cause good blood flow to the brain without cognitive challenges.

When you say you are 'on the go,' what does that mean ? What is your day like ? What kind of activities do you do ?

Has your doctor suggested trying medical marijuana ? A high CBD low THC strain, Charlotte's Web, Harlequin, maybe AC/DC, or straight CBD oil for sublingual absorption would be worth considering. CBD does not absorb well through the gut so must consume more edibles in many cases. Some find a bit more THC before bed helps with sleep. The therapeutic amount of THC does not cause a high. Getting high can be counter productive because it can cause agitation.

Thanks for the suggestion of the Amen Clinic. I've also found a brain injury specialist at UCSF -- Gary Abrams -- but, of course, it's difficult to get in to see him.

"On the go" means doctors appointments or therapy (often family therapy -- long story, but family members who are supporting me financially are trying to "psychoanalyze" the cognitive impairments out of me) almost once a day, spending an hour on the phone with the insurance company, an hour doing research on facilities/specialists.

I try to get out for gentle yoga but my slow processing speed makes it hard -- I can't understand instructions quickly enough. On good days I'll venture out for a walk but my problems with visual-spatial orientation and convergence often make that very disorienting.

I used to read a lot but now find that I cannot understand even children's books. I'll look into your suggestion of tactile activities -- maybe puzzles, knitting, etc., as t.v. or movies make me too dizzy.

Re: sleep medications, I'm pretty wary of accepting new drugs from a psychiatrist who is not knowledgeable about brain injury. I'm trying to find a psychotropic specialist but I appreciate the suggestion of gabapentin. I've actually never heard of CBD oil. I once tried smoking and it magnified my symptoms.

What I'm getting from slowly making my way through posts here is that the only thing to do is work on acceptance and modifying one's life towards a somewhat less ambitious tempo. I used to be an extremely active multi-tasker who hated being idle, so clearly I need to reinvent somewhat...I'm not sure if my lack of absolute rest is contributing to my non-recovery, or if that's just the nature of the injury. I spoke with Constance Miller, the founder of the Brain Injury Resource Center, and she was pretty frank about the slight recovery one can expect from the global damage of a hypoxic injury.

In any case, a very heartfelt thanks for answering some of these queries and providing support. It means a lot to one starting off in this wilderness. All my best wishes to you!

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.

That looks like an expensive stack. I don't see any anti-oxidants.

I have not seen Len Ochs suggest anything about updating his system. Nor does he post any true research. He continues to promote LENS in violation of FDA statutes. He does not collect and report any negative outcomes. Instead, he claims there have not been any and gets past FDA rules by claiming GRAS (Generally Regarded As Safe)when there is evidence to the contrary. He promotes it for more than it is allowed. It is allowed to be promoted as a relaxation device, not a healing or treating device.

He or one of his people tried to post on NT but stopped when we asked questions he was not willing or able to answer.

I'm all for alternative treatments but am very concerned when there is a lack of openness and response to concerns and when there are attempts to skirt the laws and regulations.

Here is the description of the LENS FDA registration no. 3007608780,

Subpart F--Neurological Therapeutic Devices
Sec. 882.5050 Biofeedback device.

(a) Identification. A biofeedback device is an instrument that provides a visual or auditory signal corresponding to the status of one or more of a patient's physiological parameters (e.g., brain alpha wave activity, muscle activity, skin temperature, etc.) so that the patient can control voluntarily these physiological parameters.

(b) Classification. Class II (special controls). The device is exempt from the premarket notification procedures in subpart E of part 807 of this chapter when it is a prescription battery powered device that is indicated for relaxation training and muscle reeducation and prescription use, subject to 882.9.

The device is registered as a volitional (voluntary effort) device but with the LENS system, the patient is passive and the LENS system pushes electromagnetic waves to the brain.

OchsLabs gets away with this partially by leaving the promotion to the practitioner. Ochs just suggests areas it can help and holds training sessions for practitioners. The FDA does not regulate how the practitioners promote a device.

So, lots of gray area use. It leaves me skeptical.

Thanks BirdOntheWire
 

Hi BirdOntheWire,

Thanks for sharing your experience...it is eery how closely it aligns with mine. It is tremendously helpful to hear of similar experiences, particularly when the existing literature is too scant and dependent upon animal studies to have made its way into most neurologists/psychiatrists' offices. I do have a few questions, if you don't mind..

First, you mention that in the period right after your concussion, you were able to continue mostly as normal? I am curious as to the extent of your original injury prior to the temazepam usage, because you said you "didn't notice any major changes right after the injury." From what you say, it sounds like things went progressively downhill -- dramatically -- and quickly after a few weeks of the temazepam usage. How would you say you are doing now? Did any of the general confusion, difficulty with reading and comprehension and memory problems lift once you got out of the awful benzo withdrawal? I know I was only on the benzos for two months (and, like you, drinking during some of that time), but I wonder if some of what I"m feeling is withdrawal, though, as I'm two months free of benzos now, likely not.

Secondly, how are you doing now? I'm so sorry to hear that these symptoms have been plaguing you for a decade now, even after the benzo withdrawal. Were there any stages at which you felt improvement or have things remained mostly stagnant beyond the intervention from visual therapy and some neurofeedback? What happened to you after your sophomore year of college?

I would love to hear more about the supplements you are taking/any other details of your story/advice you feel like sharing. I started Mark's regimen of B12 and curcumin with some D and E vitamins about a week ago, but am open to additional recommendations. Also somewhat curious (though I know that each injury is different) as to how things have unfolded for you. What sorts of doctors have you seen? Have you had any concrete diagnosis that might help you access resources for rehabilitation or disability? How has your family/friends responded?

I am hoping that you are feeling somewhat better...I feel for you tremendously and hope that your decade of suffering will soon be somewhat alleviated.

Mark,

The stack can get a bit expensive, though mainly just due to the sheer number of supplements I take. The only one that really breaks the bank is the PQQ, which I’m trying for the first time and I don’t know if I notice enough of a difference to justify the price. Almost all of the other pills were recommended to me by my doctors. I take the quercetin for its antioxidant properties – I take vitamin C sporadically as well but it tends to irritate my stomach.

I know there have been different versions of the LENS device rolled out, since I’ve had practitioners with different versions, but I don’t know if any meaningful changes to the software itself were involved. I wasn’t aware of their questionable business practices; I discovered it from reading others on the internet claiming it helped with their PCS. It sounds like I was lucky, because it really was quite helpful for me – not only did it take the PCS symptoms down significantly, it also brought down my anxiety to normal levels for the first time since I CTed off the benzos 7 years before that, and pretty much cured my lifelong insomnia (an effect that’s remained, at least so far). But I don’t personally know anyone else who’s tried LENS, so for all I know my results were quite out of the ordinary.

Either way, thanks for informing me of its downsides, I might still recommend it to those in a similar situation to me but now I’ll be sure to include fair warning and let them decide if they want to take the risk. In the end I’ve found NeurOptimal to be more helpful; hopefully that one has fewer negative aspects, though again I can only say how it’s affected me personally.

GG,

It really is eerie. It’s been a mystery to me all these years what exactly happened, and why I continued to get so much worse for almost a year after the injury. I’ve accepted that at this point there’s no way to know, but I’ve suspected the benzos and alcohol were the main culprit. The similarity of our experiences is quite interesting in that sense.

I’ve always struggled to remember my state of mind after the injury and figure out just how much the injury itself affected me. All I can say for sure is that by the time I started school two weeks later I noticed immediately that I was having reading comprehension problems, which I had never experienced before in my life. And the facts that I didn’t even think to suspect the brain injury and that I was completely unconcerned about my declining mental state suggest to me that I was already pretty out of it. I made it through the latter 3 years of college only thanks to Adderall, which I’m sure also did me no favors in the long run.

The injury itself was fairly significant – I lost consciousness for a while, then was catatonic and then behaving irrationally and erratically, and have 5 or 6 hours of lost time, so I can’t imagine it didn’t affect me more than I thought at the time. I went to work the next day and took a half day because I was having vertigo, took the weekend off, and then went back to work and thought no more of it. But my memory of the time period after the injury is much hazier than that of the time before it, which leads me to believe that some noticeable damage had already been done.

I’m doing worlds better now, but it’s been quite the process. My brain still gets easily overstimulated, but as I recover I’m able to handle more and more without shutting down. My condition has also been complicated by PCS from a second injury 3 years ago, but the long-term repercussions of that one have been attributed to my neck more than my brain. I would say that ever since hitting rock bottom in the months after quitting the benzos, I’ve improved steadily but very slowly. It’s been difficult to parse out what issues were due to benzo withdrawal and what was due to the damage already done. My cognitive problems were already so bad that I only noticed them getting a little worse when I stopped the benzos; my main withdrawal symptom was my anxiety and stress levels skyrocketing.

As such, it’s also hard to say when the benzo withdrawal ended, because all of the issues got slightly better over time but none of them went away on their own. Only active interventions like the vision therapy and neurofeedback have made a meaningful difference for me. It seems not impossible that some of your issues could be due to withdrawal at this point, though it’s so hard to know since benzo withdrawal and brain injuries have so many common symptoms. Did you notice any change when you went off the Valium and Xanax? You’re lucky that you realized what was happening before further damage was done or you became dependent on them.

My concussion doctor for my more recent injury had recommended resveratrol and green tea extract in addition to curcumin for TBI recovery; I’ve tried all of them and dozens of other supplements, and I personally didn’t notice a drastic difference with any of them. But eating a nutrient-dense diet and taking many various brain-supporting supplements seems to have helped a lot overall.

I hope you’re continuing to see improvement. You seem like you’re in a much better position to recover than I was. It took me years and years to even figure out what had happened to me, to find medical professionals who knew anything at all about brain injuries, and to stop doing further damage. I’m happy to provide any moral support I can – I know how hard it can be to find others who can relate. Take good care of yourself!

BirdOntheWire,

Thanks for the reply. Strange as it may sound, merely finding that others have experienced the same thing -- I think of it as a double injury, the brain injury plus the benzos -- is itself quite a bit of moral support. You're right that it's impossible to disentangle all of the relevant factors and determine precisely the extent of the benzo-induced damage. Nonetheless I feel essentially certain that at least in my case the benzos wreaked the most devastating havoc, given the progression of symptoms. I think it's just hard to believe that something which is so frequently used by healthy individuals could cause so much damage in a vulnerable brain.

There is another user who has since left the site who complained of something similar -- his/her username is Lacrossefan and their drug of poison was Ativan.

On a practical note, which were the brain supportive supplements which you found helpful? And, in terms of timeline, how long after you stopped the benzo did you begin to feel even marginal improvement? I realize I am getting into possibly futile territory here as no two injuries are alike, and furthermore, mine was hypoxic so highly diffuse in nature and seems to have affected my cognitive abilities most. That being said, I'm dipping my toe into that pool of comparison because I'm beginning to wonder if my injury has any hope of healing.

I actually have seen zero improvement...since things got worse with the benzos four months ago, I haven't found any lightening of the brain fog and inability to process. Words always escape me when trying to express what the fog is, but it's much more than being dazed. It's more like being high and having a terrible flu, with a good dose of actual inability to comprehend spoken, written, or visual information. I am astounded (and impressed) that you were able to complete university on stimulants. I have found myself unable to read even children's books for full comprehension. These neurotalk posts I find only halfway intelligible...like I'm receiving a mild impression, water on a page, so to speak, if any of that sounds familiar? It's not just being out of it, but "hard" or "technical" cognitive dysfunctions. I suppose I'm wondering if your cognitive impairment ever reached these depths?

I'm very glad to hear that you're feeling better and that you've found therapies which have targeted your visual issues. I don't know what your cognitive status is now, but I must say you write with extraordinary clarity!

Many thanks for your support.

As someone who is now addicted to Lorazapem, and struggling to taper off while experiencing PCS symptoms, I can say that daily benzo use definitely slows down recovery from a concussion and is likely causing harm that I'm not yet aware of. I was prescribed Ativan for sleep/insomnia issues immediately post concussion and took only 12 doses and was hooked. I realized this 3+ months ago and am still struggling to taper down my dose. Had I known about how addictive this drug is, I would never have taken 1 pill. I only wish I had found this board earlier.

Hi NW Guy,

I'm sorry to hear of your struggles. I wish I had more positive information to share, but I think we are all becoming aware of the undeniable fact that benzodiazepines are extremely dangerous for those with brain injury. If the studies I posted before (Long-term impairment of behavioral recovery from cortical damage can be produced by short-term GABA-agonist infusion into adjacent cortex. - PubMed - NCBI) () (https://www.ncbi.nlm.nih.gov/pubmed/3742206 weren't enough, I have spoken with the lead researcher of those studies and explained my development of symptoms (cognitive impairment and visual coordination issues significantly worsening after taking Valium and Xanax). His response was that his research supported/explained everything that had happened, and that taking benzodiazepines after brain injury "doomed" recovery in the animals he had treated.