So I'm just lost and looking for answers *administrative edit* Not to look like a scream for help. I'm no *****. I'm just completely lost and disgusted by life and how weak the human brain and body was designed. No answers for 9 years. Had a moderate tbi glascow coma scale 11 in 2011. Was fine for 3 years and then boom. It hit me. Really bad cognitive decline. Sleep worsened, suicidal thoughts, anxiety, depression, heart palpitations, chronic debilitating fatigue. No getting out of bed until I've slept for at least 14 hours. Can't sleep 8 and get up and feel normal. Even with 14 I still struggle so much. Totally not a life worth living.

I'm only 26. TBI happened (car accident, not my fault) at 18 or so. My life is ruined at such a young age and I don't see myself living until 60 or 70 like this. It's pointless. Anyways, this leads me to what I've done as far as treatment. I went to neurologists and had several CT scans and MRIs. Nothing. They said my brain looks perfectly healthy. Sleep study showed nothing wrong. So family doctor, all blood looks fine, chest and heart look fine. Went to a endocrinologist and had all hormones, pituitary and otherwise, tested and they all came back normal. Went to see a specialist in Philadelphia and he wanted to offer me medication for Parkinson's. Worthless trip and waste of money. Seen psychiatrists. Not into drugging myself for 50 years til I die. I am currently on Klonopin and an SSRI which only makes me feel 30 percent better than if I am not on them. I refuse to choke these down for the rest of my life. No history of mental illness on either side of my family **** that ********. It's all caused by the TBI, regardless of what psyhcs wanna tell me.

Anyways, I'm just SO DISGUSTED with the standard of care for this situation. Oh it's just a chemical imbalance.. but serotonin deficiency is a myth with no tests to prove its real and we'll just drug you. Oh it's lack of blood flow which can be fixed with there herbs and nootropics.. NOPE. Didn't work. Oh it's probably NEUROINFLAMMATION.. but we have no tests for that or know of any way to treat it. Could be this could be that. Could be diet or amino acid deficiency.. I've tried keto, paleo, anti inflammatory diets.. Nothing. Nothing has worked.

My next steps are to go to the mayo clinic and get a DTI - SWI MRI done to see if there is anything that can be found there. Then after that, I will be going to get a SPECT scan done and get hyperbaric oxygen therapy done for like 16,000 grand (since it's not covered by ****** insurance even though there is proof it alleviates symptoms). Then after that, if I haven't gotten to a point where I can function in life.. I will be going either to Ukraine or China for pluripotent or fetal stem cell therapy. And after that idk.. give up. Do drugs. **. Life's a joke. Anyways, rant over. Any advice would be appreciated. I'm just so lost and aggravated and what life has become and that this is even possible. It's not depression go f yourself to my psychiatrists and therapists. Thanks for all the help anyone can help. I'm miserable and desperate for anything that can help. There is a lot of knowledgeable people on here.

Thank You

What happened three years post TBI? Change in housing? Wi-Fi addition to your house? Relationship issues? New cell-phone? EMFs were one of the biggest factors in me not healing. Since cutting the router at home, instead of marginal progress over 5.5+ years, I am healing.


I did the whole chase every doc and treatment for years until I found that it was less to what I should add and more about what I should take away: the fuels to the brain fire.

I've made more progress in three months than 5.5 years of attempted healing combined with far less time, money, energy, and suffering spent/ experienced.

Mild cardio, or even just walking, below the level that triggers symptoms cured me of my first two really bad PCS symptoms. Ramp up as tolerated.

Google or search this forum "Buffalo Protocol" for more details.

Hope it helps!

Ummm... no change really. Already had wifi, three tvs, and other appliances in my house. No change in housing. I don't think that's related.

braindamage,

1st, Where are you so we can recommend clinics?
2nd, Male or female?
3rd, Did you have any anxiety or depression struggles prior to your accident?
4th, What is the Klonopin supposed to treat?

Was the sleep study just a breathing study or did it look at EEG waveforms?

Have you had any therapy for your upper neck? Sleeping postures can cause upper neck inflammation that causes a restriction of blood flow to the brain and mess with quality of sleep leaving your in brain fog.

I call the upper neck issues Subtle Neck Injuries because they have no other symptoms to indicate a neck problem. But, resolving upper neck issues can lead to great improvements. Instability at C-1 to occiput and C-1 to C-2 can lead to inflammation.

A test that might work is simple. Try sleeping in a recliner with your head and shoulders elevated and your head supported in a relaxed straight posture.

NUCCA and Atlas Orthogonal chiropractic or Upper Cervical Physical Therapy may help. Myoworx.com in Guelph, Ontario, Canada does some interesting PT work.

The DTI and SWAN MRI could be helpful in documenting brain struggles but they don't often direct treatment.

A SPECT at an Amen Clinic may be worthwhile. Dr Amen has a huge database for comparison. Check him out on YouTube.

btw, I stopped 14 years of SSRI and take 200 mgs of 5-HTP instead. I do MUCH better with the 5-HTP.

Hello,

Thanks for your response. I am male. I am in St. Louis. I had zero anxiety or depression before the accident. The klonopin was given to me to supplement the Lexapro I guess? Because the lex wasn't helping all the way. I only take the klonopin a couple times a week. The sleeping test they did was an EEG waveforms I had all those things hooked up to my head and chest. I do not think it is upper neck related at all or a neck injury. I've been sleeping the same tempur pedic since before my injury and has always been amazing. The symptoms didn't even start initially which is why I don't think it is a neck problem. I got out of the hospital after my TBI and went to rehab for a couple weeks and was fine for 2-3 years before a huge wave of cognitive decline hit me. No history of mental illness on either side of my family and I have never had these issues prior to my tbi.

But yeah hopefully the DTI/Swan MRI or what not can at least show what is wrong? I've been scrambling for a long time now with neurologists and other doctors to find out what's going on. Choking down benzos and ssris for the next 50 years til I'm dead sounds like a nightmare. I'm only 27 years old. A spect scan, yeah I've heard of that. Dr. Harch uses that to help with treatment for HBOT. To measure blood flow before and after. I've heard of Dr. Amen. Are you sure about him? I've done a lot of research on him. Everything that I have read and listened to and others who have been to his clinics says that he is a quack. His work is pseudo science and he charges like 5k for each visit and offers no real treatment.

Thanks again for your help.

Dr Amen may be able to point to where your brain is dysfunctional. Whether he has the definitive treatment is unknown.

Harch just uses SPECT to demonstrate capillary growth.

Don't discount neck issues. Inflammation can cause serious issues. 80% of concussions include a neck injury that often goes unresolved. You may have had some benign neck event 6 years ago.

What are your B-12 and folate blood levels?

There is also Carrick functional neurology/chiropractic neurology to consider.

CognitiveFX in Utah makes some big claims.

All of these alternatives are helpful to some and a waste of money to others.

The stem cell issue is still decades out. BDNF regulation would be the first accomplishment toward neuroregeneration.

[Anyways, I'm just SO DISGUSTED with the standard of care for this situation. ]

The standard of care is not the issue. If doctors cannot find the problem, it is because they do not have an understanding. There are no magic bullets. There are too many ways head injuries cause problems.

The brain does not heal fully, even in the best cases. I've live with PCS for 54 years, severe PCS for 18 years.

I was on Klonopin and it messed me up, even a low dose. I was sleepy all day after a small dose before bed. I needed it to not have mini seizures during my sleep. Now, I take low dose gabapentin before bed.

The 5-HTP I take increases serotonin. The ssri I took causes so many side-effects.

Your brain does not need 14 hours of sleep if it is getting quality sleep. Something is wrong with your sleep. You may be sleeping and breathing but you are not getting restorative sleep. What did the somnogram say about your slow wave sleep? Slow wave sleep is critical to quality sleep and comes after REM sleep.

btw, You can buy a home HBOT system for much less than a 40 to 80 dive treatment. I had great hope for HBOT but the research is just too inconsistent.