[dumb bell]

hello,

32 year old male with 7 documented concussions...and i am assuming at least another 5-6 undocumented. plus several sub-concussions, no doubt.
amateur boxer + street fighter. have been punched in head 100's & 100's of times. been kicked in the head. have had head slammed against walls/pavement.
was hit by a car as a pedestrian @ 15, knocked unconscious for 30 seconds. hammer fell off of garage roof onto my head. etc., etc., etc.

symptoms lately...memory problems (words - often stalling to find a word... names - even sometimes those of relatives!). concentration problems (can't get through a sentence of reading w/o mind roaming. have to reread sentences over and over for it to finally "sink in"). often can't concentrate when people are talking to me. find my mind roaming. ...emotional problems. just feel an undercurrent of anger and frustration at most times. . . . that can switch to fits of tears. physical - a constant ring in my head. constant. sometimes very high pitched. . . .balance - my head feels swimmy and heavy and my balance is sometimes off, like being slightly drunk. . . .
my life is hell.
i don't care about PCS or TBI - i've stopped fighting. i will never, ever go back to it. ever. ever. ever. if this is the brain i'm now stuck with, fine. but CTE - my brain shrinking and me going insane...it's the most horrific thought.

[Mark in Idaho]

dumb bell,

Welcome to NeuroTalk.

The symptoms you are having could eventually lead to a diagnosis of CTE but you are overstating the case. CTE and other brain deterioration does not cause insanity. It can lead to MCI (Mild Cognitive Impairment) and dementia but the progression is usually very low.

I have live with the symptoms you mention for 15 years. I have been assessed by a Neuro Psychological Assessment 3 times over those 15 years and my status is unchanged. I'm not improving but I am also not getting worse. What I am doing is taking care of my brain.

Many of us live full lives with the Word finding and name to face dysfunctions. Stress tends to make these symptoms worse so learning to accept these can enable you to get the most out of you brain. I even have some comical sayings for times when struggle before others. "I get my mords wixed up." "My tongue got caught around my eye tooth and I could not see what I was saying." and others can help us reduce the immediate stress and redirect our brains.

Studies show that those who learn to accept their limitations and make an effort to find work-arounds and accommodations to them do quite well.

For me, I have to work real hard to remember somebody's name. I make it a sort of challenge game. I'll try to recite the names of people I have met at a get together.

The Vitamins sticky at the top has a lot of good information. Many of us use the vitamin regimen to help our brains work best under the strain of injury.

It would be good if you have a significant other, that she learn to be your wingman in these struggles. You also can learn to make choices about the environments you enter. Environmental stresses (over-stimulation) can cause the behavior issues to manifest. Too many voices, especially loud and controlling voices, can trigger outbursts. Learning to step away will be a good skill to develop.

Most important is for you to accept that, "This is real. My deficits are real. I need to stop fighting or pushing against them and learn to live my best with them." Some of us get a NeuroPsychological Assessment so we have real data about our capabilities. This way, we don't have to be constantly wondering if these issues are real.

The concentration problem you are having is likely due to easy distractability. Your brain is distracted by anything and everything going on around you. For many of us, we have to limit the distractions by moving to a quieter room or asking people to speak one person at a time. This is a very important skills to learn.

There are lots of ways you can move forward successfully despite your struggles. Feel free to tell us more about them and we can suggest ways to work-around or accommodate them.

My best to you.

[Mark in Idaho]

A Neuro-Psychologist does the Neuro-Psych Assessment. They are pricey so a good referral from a PCP is good. A neuro can also refer.

The ringing in the ears is likely with your for life. My ear ring like a bell. Have for decades. I have learned to just ignore it.

The balance issues can be vestibular or vision related or both. Balance depends partially on visual reference so vision needs to be checked by a specialist (behavioral optometrist, https://nora.cc/healthcare-locator.html)

A balance clinic can help with vestibular issues. They are often associated with hearing aid centers as Hearing and Balance Clinics.

Smartphones and tablets have proven to be very helpful so people can use note and calendar apps to help with memory issues. There are apps where you can catalog names and pictures of faces at iTunes and the google app store. Then, you can quiz yourself.

Did you change my screen name to Mark in Hidaho (MIH) ? LOL, Welcome to the world of PCS dyslexia.

FYI, If you use the Post Reply button at the bottom right, it will not repost the previous post as a quote. Adding a double paragraph space every 5 lines or so makes it easier for many of us to follow.

You autoimmune disorder would only enhance your need to learn to lower stress levels. Stress is rough on immune functions. There is probably a forum on Psych Central for your autoimmune disorder if you need information and support.

It sounds like you are taking the right steps. We can help you move forward.

Your diet sounds like a good start but the injured brain needs more than can be achieved by a normal healthy diet. One would have to eat 6 tablespoons of turmeric a day to start to get a useful dose of circumin, the active ingredient. So, many of us try to eat health, avoid the bad stuff (caffeine, MSG, artificial sweeteners, HFCS, and other intense sugars, etc.) and add vitamins and other supplements.

You might benefit from finding a brain injury support group. It can be helpful to meet others with similar struggles in a place where you can talk openly about them. BIA http://biaa.org/ has links to state affiliates and local support groups.

My best to you.

[Jomar]

Had an odd glitch when merging newest post to his thread here, so I am manually adding the posts back into the thread. This post was from Feb/2016

posted by dumb bell-

MIH,

Thank you for the detailed response.
Insanity was definitely an overstatement - - - i meant early-onset dementia.
Also, I didn't realize that the progression is often slow - - - I see the media stuff about young athletes (seemingly) succumbing so quick, so.
do neurologists do the neuro-psych tests? (i am assuming yes.).
i try to keep my stress level as low as possible - but with also suffering from an autoimmune disorder, it makes it pretty difficult (fyi, i'm not taking the medication yet (holding off as long as possible. looks like i'll soon have no choice, tho). so none of this is a result of that).
it's very hard for me to remember names, too. they eventually come to me. usually hours later. another thing is forgetting things I've done within the hour (washing my hair/whether i indeed drank a cup of coffee/if i had made the call to the library). the balance issues/ringing in ears is getting much worse. @ 32, very disconcerting.
also, my sleep is atrocious. i've long established a good routine, but to no avail.
BUT, i am fine with the way i am right now. i'm only scared if it progresses into early dementia (if only I had a crystal ball...but then what difference would it make if it showed CTE in the near future. would make it worse, actually).
i am not taking any vitamins (yet). i do drink a lot of green tea. mix in turmeric in most of my meals. eat as much fish as possible. use organic coconut oil in my cooking. eat lots of frozen blueberries. i don't know if any of this stuff helps, but. . . I'll read that sticky, thanks.
don't have a significant other. do have family. but they are very stressful people to be around.
thanks!

[Jomar]

posted by dumb bell - this is the new post -

hello,

i posted back in Feb...
info : have suffered many, many concussions (and sub-concussions) throughout the years. as a result, i am suffering : dizziness (makes it difficult for me to get about), head-pressure (and a feeling like my head is being pushed down to the ground), headaches, head "zaps", head/body "rushes" (or what i like to call, "risings"... only way i can describe this is how i feel it might feel when one is on the verge of a stroke/seizure), tinnitus, memory loss, confusion, depression, aggression (this scares me the most), emotional lability, very poor fractured sleep, etc. i am certain, absolutely certain, that i have CTE. i have taken hundreds and hundreds of blows to the head. have suffered many accident related head injuries.

a few questions...

1) if i go to my GP for a neuro-psych test, will he get me into a clinic that does one? or do i have to see a neurologist first? also, is there a test that might pick up damage? a sensitive-MRI, perhaps?

2) i want to start taking a good multi-vitamin (to start out with. then i'll progress to the b-complex etc.)...wondering if the activ-XTM for Men (sorry can't post link) one looks like a good one...it includes all the natural forms of b's, biotin, folate, ginseng, fish oil, curcumin, etc.

3) does reading actually help the brain/improve cognition?

4) any recommendations for mild anti-depressant to help me with my depression/anxiety?

5) is CTE actually slow progressing? if so, why do young men in their 20's/early 30's suffer from it? do you think that we will see a day when CTE is diagnosed in the living?

thanks!

[Mark in Idaho]

dumb bell,

1) Any doctor can request a Neuro Psych Assessment. Your insurance may have some limitations. A DTI MRI (Diffusion Tensored Image) can show evidence of damage but there is no treatment for any damage found.

2) The Activ-Xtm looks good for a multi but the additional B-12 should be added right away. It is expensive ! Read the Vitamins sticky.

3) Many struggle with cognition because they struggle to focus. We learn to reduce ambient stimulation so our brains are not distracted. Reading is a good brain exercise.

4) It sounds like you are in Canada. There are different names for anti-depressants. Some have used Celexa, Zoloft, and other SSRI or SNRI's You need to find a doctor who understands them. I take daily 5-HTP (100mgs) and L-Theanine (200mgs) rather than the anti-depressant I took for 14 years.

5) Most do not develop CTE until their 30's and 40's. There are exceptions just as every brain injury is different. Evidence shows that some who develop CTE do not exhibit cognitive struggles. There are a few studies that receive brains from dead athletes. They were shocked to find serious CTE in some athletes who exhibited only minor symptoms.

Worrying about CTE is a losing game. The stress will increase any symptoms. Many of us who have permanent impairment do just fine by using work-arounds and accommodations to overcome our struggles. As I said, I've lived with the symptoms you mentioned for 15 years. I've lived with a much milder set of symptoms for 50 years. I have lived a successful life.

I have had a problem with dizziness when getting up out of a chair since 1987. I just have to move slower. No big deal.

Finding a way to get good sleep should be a priority. Poor sleep can cause a healthy brain to manifest symptoms that mimic severe head trauma.

You may indeed have CTE but the severity is unknown. It is not a death sentence. How you choose to live your life will have a direct impact on your symptoms, etc.

Research shows that people with PCS/brain trauma who learn to improve their lives/function can do quite well. Those who wallow in despair often see an increase in symptoms.

[dumb bell]

MII,

thanks so much for answering me again.

will a neuro-psych test find any problems in terms of my dizziness (which is different than yours. it's a 24/7 dizziness. doesn't matter if i'm laying down, walking, sitting...) or other head related problems?

what b12 do you recommend? (the vitamin sticky thread is massive).

i don't know if i'll be able to afford the 5-HTP and L-Theanine (the multi that i want is almost 50 bucks!)

i am 32. most of my head injuries occurred between the ages of 19-28. and then a huge one @ 30. & to be honest, my cognitive impairment is significantly less than the dizziness (if i can even call it this? it's like my head is a fish-bowl?) , head-pressure, emotional issues/aggression/depression etc. i really think it's CTE (7+ (it's more like 10-11) concussions in 10 years. can anyone on this board relate to this? *this isn't a competition. i really want to know!). never, i mean never, did i properly recuperate after an injury. even though sometimes i could hardly walk straight, i woud force myself to get and out about (out of stubbornness). & have always lived a very high stress life, which couldn't/can't help)

i cannot seem to get good sleep. no matter what. i've tried and tried. my brain won't shut off. i wake up after 2-3 hours with my jaw clenching so tightly (and my heart racing. and a feeling of butterflies in my stomach. and a massive amount of aggression) that my head feels like it's going to explode.

[Mark in Idaho]

There is a difference between dizziness manifestations. Have you had a vestibular work-up ?

I would choose a less expensive multi and add the other supplements. The Activ-Xtm is grossly over-priced for its content.

You are overly focused on CTE as a diagnosis. One needs to work with the symptoms, not an over-all diagnosis. It appears you biggest issue is your anxiety. Focusing on that will be a big help. Reducing stress should be a priority.

I've had 14 concussions of varying severity over 40 years. There are plenty who have had and continue to have serious struggles. You are not unique. I've had cognitive, personality and emotional (depression) issues due to concussion since 1965.

The Vitamin sticky does not need to be read in whole. Read the first post and the updated one on page 46 or so. You need to get started with the basics and not worry about all of the other concepts. There is no perfect answer. Any B-12 in the methylcobalamin form is good. Take it on an empty stomach.

5-HTP and L-Theanine are not expensive. I spend about a dollar a day total on all my supplements. I use Vitacost.com for almost all of mine. I watch for their BOGO at half price sales that are frequent. You could get started with the basics for 50 cents a day. I struggle with the Activ-Xtm multi because they do not publish much about dosages yet may big claims and its expensive. Vitacost ships to Canada if that is where you live.

1000 mcgs of Methyl B-12
1- B-50 Complex
1-multi for a broad range
Omega 3 fish oil
D-3
400 iu of Vit E
a calcium magnesium (calcium citrate/mag citrate, theonate, or other, not mag oxide)
Vit C

You can add the 5-HTP and L-Theanine but getting started on the others is most important. It will take weeks of daily use to see any difference.

Getting help with your anxiety/stress will make a big difference.