Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 02-11-2016, 05:50 PM #11
Mark in Idaho Mark in Idaho is offline
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Eating one big meal a day is not why you are skinny. That is due to the calories you consume and are able to absorb. You can be healthy skinny eating three meals a day. I am surprised you do not have a distended liver from 'famine syndrome' The body can only use 'active' food for about 7 or 8 hours. After that, it has to start pulling calories from the liver. When meals are far apart, the body starts storing more food in the liver and using less for active needs.

Why do you have a glucometer ?

When I was not eating right, my mood and cognitive skills roller coastered through the day. My diet was a donut and milk for breakfast then a late dinner. My doc said I was cycling wildly because of the sugar in response to famine.

Based on your condition, you are not achieving any health benefits of being skinny. Health benefits come more from what you eat than how much you don't eat or how skinny you are. Society has it wrong. Dr Oz has it wrong.

If you can eat one healthy meal, save half of it for your next meal.

Jelly legs is a good sign of low blood sugar.
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Old 02-11-2016, 07:14 PM #12
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Default Yikes

I'm all ears, believe me . . but help me understand. I've done my one-meal way for decades--I never had jelly legs or this sort of uncontrollable anxiety (sure looks like I'm at GAD as of today), and my brain was allright most of the cycle, it's only been since my injury Jan. 3rd. Is it really that much better to keep those 'free-floating' calories available throughout? Or maybe it's too easy to come up short on the calories with one meal . .
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Old 02-11-2016, 11:56 PM #13
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Brown,

Better start eating regularly based on my experience.

I need energy going.

I have skipped/ forgotten lunch/ didn't want to take time to eat lunch for most of my adult life but it is quite detrimental to me now. On the days I go back to my old habit I can sure tell.

Basically what I think is with pcs many routine habits affect us quite differently. The art of dealing with it is making the necessary changes for optimum health.

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Old 02-12-2016, 04:12 AM #14
Mark in Idaho Mark in Idaho is offline
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brownehm,

The concussed brain is far less tolerant of any kind of stress. Food energy is a key factor in helping the brain function during stress.

I rarely have any sensation of hunger. I have not felt true hunger since I was 15 or so.

I eat for two reasons:

Discipline, I know I function better when I eat regular meals, especially breakfast.

I am crashing and I can tell I need food energy to get my brain out of the crash. Some times, the crash has not happened but I recognize it is coming. It is very subtle. A banana, an apple, a small cup of rolled oats with raisins and maybe a dozen dark chocolate chips, a slice of cheese and some crackers, etc.

I find 150 to 200 calories will pick me up out of a cognitive funk in about 20 minutes or so.

I also eat so I can sleep. The brain consumes a lot of calories during sleep. Some of us have to be discipline to feed our brains so we can get the proper restorative sleep we need. I have dinner at 5 to 6 and by 12, I need food energy. So, I have 200 calories and can sleep through the night. I wake up 7 or 8 hours later because I need more food energy.

The human body needs a meal about ever 8 hours.

Just because you could break this rule does not mean you can now that your brain has been injured.

I am 5'11" and weight 160 pounds. I was 149 pounds 2 years ago. I was gaunt. My doctor told me to gain some weight.
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Old 02-12-2016, 07:35 AM #15
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Default Wow

Guys, that is AMAZING. You make an excellent case . . And of course Mark, sleep is extremely important but especially to guys like us. I will post later on how this turns out. But as I look back over events, it seems very,very possible you have something. After a wonderful rest last night (I guess I came down for some reason--if you ever want to die, this is a good way to go), I start this morning off with a bizaare combination of relief, optimism, fear (of another attack), and shakiness . . it feels like my body has flip-flopped from a state of high alert to a kind of sweet crash. Unstable, is what it is . .
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Old 02-21-2016, 04:45 PM #16
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Default Update - Seven Weeks

It does seem to be a slow evolution, with no two weeks exactly alike and most symptoms coming, going, or changing . .

There is a striking difference between symptoms before and after the *SMACK* on the head at the end of Week Four (see my baseline; perhaps I should start the weeks over with the *smack*.) Weeks Five and Six were rocked by mood instability resembling bipolar disorder, with high anxiety on one end and calmness and tranquility on the other. My own personality is part of it. It seemed like just when I thought I was moving in the right direction something bad would happen (I'm afraid to say I'm improving for fear I'll jinx myself.)

First big question: what are the triggers? One theory is: almost everything--with key activities worse than the others. Your brain is involved in 99.9 percent of anything you do. The more demanding the task, the greater the workload. Sight, light, conversations, motor activity . . reading . . keep adding 'em up over the hours, and you have a trigger--according to this theory. Most weeks I thought just staying home would be enough. But maybe not, because I usually crowd every waking moment with lots of reading, thinking, and probably emote-ing[?]--and that stuff evidently burns up a lot of glucose too. I wonder if TBI sufferers should shut down regularly. I seem better--like a recharged battery--when I shut down in some way, including falling asleep. I wonder if being active, or even conscious, the full normal 16 hours per day is deleterious to recovery. Activities I'm not sure I should do: walking/exercise; maybe my hot baths (I've already asked in a separate thread); my morning stretch etc. routine maybe?; getting overly emotional . .

I changed my dietary pattern: now I eat round the clock, including a quickie in the middle of the night; plus most of the nutrients in our Sticky. At first I almost jumped to the conclusion, This is It!--and I seem to experience what Mark described. But it isn't the whole story. It does seem to keep me more stable. One down side is I get SO much energy my obsessiveness is more prone to take off and I get a little more restless at night.

Next intriguing question: what are the best ways to shut down? And how many hours should you give up? Mark says 'gentle stimulation', which I think means doing things with your hands. But maybe also: meditation, if you know how; watching TV or listening to radio that isn't too mentally challenging; yoga?--how about lying with your cats staring at the ceiling. My favorite so far is lying still, eyes usually covered, relaxing . .and falling into a deeply relaxed state, which I think might be the parasympathetic nervous system taking over, but I usually also fall asleep. These are wonderful but this might be shutting down a little too far?

Food for thought guys.
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Old 03-06-2016, 05:07 PM #17
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Default Update - Two Months

It's been rough. Weeks 5 through 8--the weeks following the second blow to my head--I would rather just forget. I stopped keeping a detailed journal. It seemed fruitless trying to figure exactly what is going on; seems like a lot of it is garbage that was inevitable no matter what I did, once I got that second blow to the head, even though it wasn't obvious things were getting better otherwise. It seems I'm going through a process independent of triggers, that is, the only effects I can have on what I'm experiencing are marginal. (About all I accomplished was good diet--see previous update.) I go through dramatic --and it sometimes appears that so are some of our posters--changes in mood and attitude, for example high anxiety for maybe a day, then a period of calm sweet tranquility. Week 8 began something similar with the sleep cycle. Some days it's difficult to fall and stay asleep, and I generally get uneasy as the day nears its end, as if I can't really accept the day is over or lost or something; other days I sleep well but maybe have a little trouble resisting still more, which I don't see why I would need, during the day. Some periods I lack curiosity, make careless mistakes, and feel like avoiding things; others, I'm insatiable for information, pretty much my old self, but occasionally swing to another extreme like aching to get out and do something with my life. Looking back, these feelings and thoughts seem disconnected with reality, like they're just running on their own out of nowhere. This scary symptom-- widely reported by people with brain damage--and really my only major symptom--is to me an existential threat, for the core of my being is my feelings . .
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Old 04-10-2016, 10:02 AM #18
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Default Update - Three Months

(April 3 - also 9 Weeks 1 Day since second injury) Not good. Oldest symptoms are slowly fading, but I've become an insomniac. It started slowly as my physical exercise wound down to zero, then midway through the 10th Week became a regular struggle. I can no longer count on powerful sleep to take hold at the early (630 pm or so) hour I'm used to bedding down. Worse, this freaked me out badly at first. I would often have anxiety attacks so bad I could not sit still, unable to accept what was happening. Twice I drove to the emergency room (worthless) in the dead hours of the night and one night I failed to get to sleep until the sun started coming up. The only thing helping is good medication. Antihistamines are good for anxiety attacks while lorazepam (Ativan) is good for sleep.

I think my drastic loss of exercise and increasing age have greatly reduced my sleep drive. I actually only need about 5 hours living this listless life--of course it would be more if I were doing all my former work. Probably also I'm reverting to an 'owl' with my awake drive is still strong for several hours after sundown.

I'm really hurt by this--sleep used to be my sweet (and reliable) escape. My bad attitude makes me prone to anxiety, although severe anxiety seems to be fading . . I got a CT scan which was of course negative. Not great medical help available in this area; I'm still far from my first appointment with a psych (May 11.)

I won't be on the forum as much as I get down very easily though I still think communicating with some of you guys would be good. Take care everyone.

Last edited by brownehn; 04-10-2016 at 12:25 PM. Reason: Omissions etc.
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Old 07-15-2016, 03:29 PM #19
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Default Update - 6 Months

My story shows how even a minor concussion can wreak outsized havoc.

(roughly July 3; 5 months 3 days since the last blow to my head.) CT scan was negative.

Struggling with insomnia, I became increasingly physically dependent on the lorazepam; and it has a lot of side effects that I got tired of. Then they were going to cut me off. Fortunately I got to taper myself off (do not suddenly stop taking a benzodiazepine if you've been on it for at least 4 weeks!) Now seeing two professionals, one a therapist, the other a full-blown MD, though the latter only for forty minutes so far. Haven't yet gotten anything good out of 'em. Quality medical care is scarce in this small isolated town.

Getting off the lorazepam has dumped a host of new problems but also deprived me of a powerful tool for sleeping and anxiety: lorazepam was my 'go-to' pill for bedtime (I still like diphenhydramine occasionally take this Valerian root concoction with other herbs) and, without that now, I've re-developed the typical insomniac's aversion to their own bed and bedtime. A good book on the subject is Greg Jacobs' Say Goodnight to Insomnia.
I've developed this bizaare symptom and situation. The lorazepam always left me sleepy during the day. As I tapered off, I was also re-building my abundant exercise level. The daytime sleepiness got more irresistible even as lorazepam was going away (it's the exercise evidently.) I cannot relax without real likelihodd of drifting off, although it's not bad if I keep myself busy. But I DON'T want to nap during the day. Yet, when the sun goes down, or I transition to bedtime in some way, suddenly the sleepiness goes away and I have trouble going to sleep--at least it gets a lot harder! Go figure. Kind of depressing.

I'm not entirely free of out-of-nowhere anxiety and mood swings. This feeds the insomnia. There's hope: I've had a lot of good and acceptable days but bad days seem to be here at least for a while. But the mood swings and especially the oldest symptoms do seem to slowly move into the past.
Meanwhile I'm trying to restructure my attitude; there's a LOT of stuff one can do. Negativity, though a survival trait, does not get along with PCS or insomnia. As many of you know.

It'll be interesting to check the site. Been away, very busy, for a while. Hope everyone is doing at least reasonable. I will be on the site more in the future.
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Old 05-19-2017, 05:58 PM #20
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Smile Update - 1 Year

Greetings. I haven't been on this site in a while. My internet service got so bad I was essentially offline for months. Also I developed an aversion toward things that remind me of illness, including this site even though I like reading others' stories etc. Then, luckily, a new telecom company moved into the area so now at least I can get on at home whenever I want.

I tapered successfully off the lorazepam. July 1st was my first true zero day. I was in good spirits, though my moods would wobble from time to time and my sleep was erratic. But on the 13th for some reason it all collapsed: self-feeding anxiety attacks when trying to sleep. The rest of July and August 1st were as miserable as any time in my life. Since then my daily routine has been strictly limited to staying home except for essential errands--lying around a lot, trying to meditate etc. And still taking those hot baths that ironically led to my accident January 3rd last year.

Luckily a new doctor I finally got to see after months of waiting prescribed me clonazepam (Klonopin) and sertraline (Zoloft.) At first, believe it or not, I didn't intend taking either one of them except maybe clonazepam in a crisis. Well, by Monday August 1st I changed my mind. I started the clonazepam in the middle of that night and sertraline the next day. Over the ensuing months I found the clonazepam remarkably gentle and even more effective than the lorazepam (0.5 mg is equal in strength to 10 mg Valium). The sertraline acted slowly and the dose had to be increased. On December 22, after steady improvement and increases over preceding months, I started 150 mg. I seem to get better and better as dosage increases--side effects notwithstanding. As of now the only side effects remaining are watery blood and maybe a little sexual dysfunction . .One measure I watch closely is how much clonazepam I need to take to get to sleep, charted daily on a calendar. A good day uses only the baseline dose, just under a quarter tablet (about 1/8th mg).

During this period I learned cognitive behavioral and dialetical behavioral techniques (CBT and DBT), including mindfulness (Vipassana?) meditation. I also rebuilt my long-distance walking (but no more recycling). I cover about 49 miles a week! It pays to be in great shape.

Already this is out of date. I hope to be at the site more in the future and see how everyone else is doing etc. There is much to share.
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