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:
STICKY - The Vitamin B12 Thread:

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!