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


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Old 06-06-2018, 03:52 PM #41
MicheleV MicheleV is offline
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Quote:
Originally Posted by Mark in Idaho View Post
Michele,

Your supplements are missing all of the Bs. They are the most important. They support myelin sheath health and blood brain barrier health. If the magnesium is mag oxide, it is a waste. Mag ox is a laxative that goes right through you. A calcium citrate mag citrate combined would be good. You need D-3 also.

If you are waking up with headaches, I suggest you focus on sleep posture. I had to learn to sleep on my back with minimal pillow. I get some of my best sleep in a recliner. It is worth it to wake up refreshed. It took a lot of trial and error for me to figure out my sleep issues. I dreaded going to bed because of the stressful dreams and waking up in a fog.

Does the Apple watch tell you anything about your breathing rate or turning in your sleep/restless movements?

Here's the summary of it all:
A beta carotene 3500 IU
B1 Thiamin 1.1 mg
B2 Riboflavin 1.1 mg
B3 Niacin 14 mg
B5 Pantothenic acid 5 mg
B6 Pyridoxine 5 mg
B7 Biotin 30 mcg
B9 Folic acid 400 mcg
B12 Cyanocobalamin 50 mcg
C 350 mg
D 1000 IU
E 235 iu
K 50 mcg
Calcium 300 mg
Magnesium as oxide , citrate and aspartate 500mg

I am a side sleeper due to a back issue from 2002. I can't last 30 minutes on my back. But I did change to a very minimal pillow and my head is in a very neutral position. I can see sleep efficiency as a percentage, percent restful sleep, sleep activity, restless vs restful, light and deep sleep, average heart rate, percentage sleeping heart rate dip. No check on breathing......besides my husband who says I don't snore or breath funny, just talk in my sleep sometimes. But I always have, especially when I'm super tired!!!
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Old 06-06-2018, 08:35 PM #42
Mark in Idaho Mark in Idaho is offline
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That looks like a common multivitamin. I'd add a B-50 Complex (not B Complex). The dosages you are taking are minimal. Probably RDA based.

I'd also add 1000 to 2000 mcgs of B-12 methylcobalamin. Take it first thing in the AM on an empty stomach.

When you sleep on your side, your pillow should hold your head level.

The fact that you wake up with a headache suggests something is not as good as it should be.

I learned about my sleep being a big issue when I would fall asleep in my recliner and get good sleep. My wife would comment that I would have a peaceful expression vs a tense expression when sleeping in bed. She could tell when I was going to have a bad day by the look on my face first thing in the morning as she woke up.

I hope you can find the cause of your headaches.
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Old 06-07-2018, 12:28 PM #43
MicheleV MicheleV is offline
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Quote:
Originally Posted by Mark in Idaho View Post
That looks like a common multivitamin. I'd add a B-50 Complex (not B Complex). The dosages you are taking are minimal. Probably RDA based.

I'd also add 1000 to 2000 mcgs of B-12 methylcobalamin. Take it first thing in the AM on an empty stomach.

When you sleep on your side, your pillow should hold your head level.

The fact that you wake up with a headache suggests something is not as good as it should be.

I learned about my sleep being a big issue when I would fall asleep in my recliner and get good sleep. My wife would comment that I would have a peaceful expression vs a tense expression when sleeping in bed. She could tell when I was going to have a bad day by the look on my face first thing in the morning as she woke up.

I hope you can find the cause of your headaches.
Thanks. I'll add a good B 50 complex and more B 12. I did sleep a bit better last night! I tried very hard to sleep with my head in a straight line, not flexed like I prefer. I kept my pillow pretty flat also. I felt better this am! That's a START! Thanks so much for all your input! I'm still tossing around the idea of Cognitive FX. I talked to them and they couldn't get me in until August 20 anyways so I'm going to try UPMC Concussion clinic and see what they tell me June 18.
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Old 06-07-2018, 07:41 PM #44
Mark in Idaho Mark in Idaho is offline
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Most B-50 Complex supplements are the same dose. 50 mgs of most Bs and 50 mcgs of B-12 and another B.

B Complex or Super B Complex is a different product with usually a lower dose of the B vitamins but C and others things added.

I would consider UPMC before CogFX. UPMC is open about their research. Cog FX keeps most of their research hidden. Their 'successful' standard is subjective, not objective like I would like to see. $8000 to $10,000 is a lot to spend with a company that is not transparent about their process.
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Old 06-07-2018, 09:04 PM #45
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Thanks Mark. Do you know much about UPMC Concussion clinic?

Are there many on here with experience from UPMC?
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Old 06-08-2018, 12:10 AM #46
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UPMC is one of the first concussion research clinics beside Boston U and U Buffalo.

Some on NT have found help. And insurance usually covers their services.

Cog FX is a cash in advance program.
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Old 06-09-2018, 05:12 PM #47
MicheleV MicheleV is offline
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Quote:
Originally Posted by Mark in Idaho View Post
UPMC is one of the first concussion research clinics beside Boston U and U Buffalo.

Some on NT have found help. And insurance usually covers their services.

Cog FX is a cash in advance program.
Definitely will start with UPMC then! Thanks so very much! Got the B50 and B 12 today! I really appreciate all your input! Please let me know if you think of anything else!

I am trying to walk and keep y heart rate in the 80s. Some days I have trouble doing that. Today was one of those days. It kept jumping to 90s and above even walking so slowly or stopping for awhile. If I push on I get a headache, then nausea and then dizziness. If I don't stop it lasts the rest of the day! How do I ever advance form here! I try to walk 1-2 miles once or twice a day if I feel OK. I always walk at least 1.5 miles a day. I usually have to walk so slowly my pace it 35-40 minutes per mile to keep my heart rate in 80s.
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Old 06-09-2018, 05:49 PM #48
Mark in Idaho Mark in Idaho is offline
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I am amazed that just gentle walking can raise your heart beat so much.

Have you checked your blood pressure when you hit 90 bpm?

Do you take any aspirin or ibuprofen? Both are blood thinners and can make it so blood flows through the brain easier. Even low dose aspirin may be worthwhile. Enteric aspirin does not dissolve in the stomach so it is less upsetting.

I take 2 975 mg doses of enteric aspirin each day for arthritis (am and pm). It also keep my blood very thin.
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Old 06-09-2018, 06:11 PM #49
MicheleV MicheleV is offline
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Quote:
Originally Posted by Mark in Idaho View Post
I am amazed that just gentle walking can raise your heart beat so much.

Have you checked your blood pressure when you hit 90 bpm?

Do you take any aspirin or ibuprofen? Both are blood thinners and can make it so blood flows through the brain easier. Even low dose aspirin may be worthwhile. Enteric aspirin does not dissolve in the stomach so it is less upsetting.

I take 2 975 mg doses of enteric aspirin each day for arthritis (am and pm). It also keep my blood very thin.

My BP is always low, normal but haven't had it checked while I'm walking. I'm not on aspirin or ibuprofen. I see a neurologist again Monday. I'll see what he says. Thanks. My head hurts frequently at rest, always worse with exertion. I think that's what causes my increased heart rate. My heart rate jumps up simply in response to a loud noise, dog bark, siren, generator kicking on.
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Old 06-10-2018, 04:16 PM #50
AeroDan AeroDan is offline
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Default My fiance has daily morning brain pain as well!

MichelleV, my fiance is 2.5+ years out from mTBI + two subsequent hits to the head shortly after. She wakes up with head pain daily similar to you. Her injuries could most definitely involve her neck, but she's never complained of any pain or stiffness in her neck (and she was a physical therapist before her injury, so you'd think she'd be able to readily vocalize anything that feels different in her neck).

Regarding her sleep, her sleep sounds extremely similar to yours. Often her brain doesn't shut off and she can't fall asleep easily. She wakes every night when I get up to go pee. She's a very light sleeper after her brain injury. She sometimes gets quite fatigued during the day. Regarding posture, she normally jacks her head up sleeping with 2 pillows. We've recently put a stop to that. I can't say it's changed anything. 25mg of Topiramate / Topamax is the only thing that's appreciably lessened her daily morning head pain. She's only been on it for a 1.5 months now. We haven't been able to up her dose because the side effects are becoming bothersome to her (paresthesia in her feet and hands, achy back and knees, dizziness and loss of balance). She has went to the ER twice and was given 10 mg of Compazine. She slept like an absolute rock for 12 hours and woke up feeling far better than normal! I've never seen her better. Unfortunately, Compazine has appreciable side effects and can't be taken regularly. We're pursuing a basic sleep study with a recording pulse ox. I'm hoping we can use it for 5+ nights to collect data rather than one.

Anyhow, I didn't want to chime in on a thread about Cognitive FX since I've nothing to say about it, but I had to step up to say my fiance has the same daily morning brain pain (every. single. morning.). If you improve yours and can share your experience, I'd greatly appreciate hearing it! I'm new to these forums and might not catch a response. ** I've subscribed to this thread, so hopefully I receive updates. However, don't hesitate to contact me via any means!

Lastly, Mark_in_Idaho, I can't express my thanks to you enough for the effort you put in on this forum! I am unemployed and spend 100% of my time researching ways to help my fiance with the typical list of PCS symptoms. Your experience and ideas are helping open avenues of hope for us. This is the first thread I've read. I'm now going to proceed to dig through more of this forum. Thanks!

Last edited by Chemar; 06-10-2018 at 04:41 PM. Reason: ** NT guidelines/new member/personal info
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