PCS 9 years - at the end of my rope
 

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.

B12 and folate, iron, zinc, etc all levels are with in the normal range. Yeah 5 htp might increase serotonin but there is no such thing as a serotonin deficiency. So just using drugs to make your brain work... yeah this really sucks. 50 years of PCS?? Are you serious? wow. How have you not given up yet? All 5 htp I have taken and heard about it has not worked. Doesn't it have bad side effects long term?? I read a NCBI study that it causes damage to the heart..

What were your symptoms? Were they similar to mine? Like sleep issues, anxiety, depression, suicidal thoughts, chest palpitations? And they get better with just 5 htp?? Sounds too good to be true. I doubt they will ever cure concussions/tbis. It's a damn shame. Such a fragile mind.

Please slow down as you read my comments. You are mixing things up.

[So just using drugs to make your brain work... yeah this really sucks.]

Do you eat so your brain has sugar and other nutrients?

5-HTP is to take the place of the SSRI. It is not a drug. It does not heal anything. Your body already used 5-HTP. It makes it from Tryptophan. If the brain is not requesting enough tryptophan to convert to 5-HTP, you will have a serotonin and melatonin deficiency.

The only side effects from 5-HTP comes when you take TOO much, usually much more than 500 mgs a day. The therapeutic value comes at dose much less than those that cause side-effects.

What are the Lexapro side effects like? It list the same side effects as the paroxetine that I took. YUCK.

Many labs have a broad range of 'normal' for B-12 and folate. The injured brain often needs the high end of the normal range.

B-12 range is often listed as 200 to 900 picograms per milliliter (pg/mL). I try to stay at 1000 at my doctor's recommendation. I take 2000 mcgs of Methylcobolomin B-12 twice a day.

Folate should be 20 or more.

B-12 and folate help maintain the blood brain barrier.

I had struggled with anxiety, depression, suicidal thoughts, chest palpitations and such on and off since I was 10 years old (1965) when I had my worst brain injury.

I did not get any help until the early 1980s. I learned how to help my brain function better with nutrition and other supplements.

Another event in 1998 and 2001 magnified my problems.

The 5-HTP helps with the anxiety, depression, suicidal thoughts, chest palpitations. I would get triggered into severe anxiety attacks by over-stimulation. I have rescue Klonopin and propranolol for those events. I have not needed it since I switched from an SSRI to 5-HTP.

You must decide that you are your best help. Doctors cannot do much. They prescribe meds that have limited effectiveness.

There are many injuries and illnesses that cannot be cured or fully healed. Try breaking an ankle badly. I know many people who broke their ankle and ended up needing to have their foot and lower leg amputated. Bones are supposed to heal...... But not always.

Yeah. Life is not perfect. But, we can decide to move on.

If you get stuck in a pity party, I can point you to YouTubes of people who have severe disabilities who get on with their lives. Check out Andy Detwyler at the Harmless Farmer channel.

We may need to just accept our limitations and find new ways to get on with life.

If you're going to do HBOT there's no reason to get a SPECT scan. You know you're injured and it will just increase your odds of a brain tumor later along with the CT scans. What the SPECT scan shows won't affect your HBOT routine. Just get a home chamber setup from Summit To Sea and you'll spend a hell of a lot less than 16k and you can do as many dives as you want. The DTI sounds like a good idea but won't inform you as to treatment, it will only tell you where the white matter damage is.

For stem cells, Dr. Hughes in Colorado is where I went. I've had positive and negatives come from it. Several people I've talked to feel they've benefited a lot. If you're really that desperate, his protocol is far more comprehensive/aggressive but you'll pay $12k after factoring in travel and other expenses. There's also the Vielight.

HBOT is the place to start though. You will almost certainly get something out of it.

I went to Cognitive FX as well but only benefited modestly from it.

As to the future, SB623 stem cells by San Bio are now being tested on brain injury patients for motor deficits. These cells have allowed paralyzed stroke victims to begin moving their paralyzed sides the next day in some cases. After the cells are approved for motor impairment it is likely they will be tested on other parts of the brain. The cells have a wound healing gene which is active in the brains of newborns which recover much better than adults after brain injury. The recovery we will get from treatments like this will likely far surpass what we can imagine today.

Stem Cells - Reversing Stroke Damage - YouTube

Ok so there is no test for a deficiency of melatonin/tryptophan correct? Yes the lexapro has a couple of side effects but nothing major. I would just rather be taking the 5 htp than taking an SSRI. All the 5 htp I have been taking has been sub par. I purchased from amazon and what not. What brand are you taking and where can I acquire some? How should I go about doing the switch from Lexapro to 5 htp? How much 5 htp do you take daily and what do you think about the common known side effect of 5 htp causing heart damage? How long have you been taking it? Thanks.

Good to hear from you. I've been wondering how you have been doing since the stem cells. What, again, were your symptoms prior to HBOT and stem cell treatment? Did you have heart palpitations, depression, anxiety, suicidal thoughts, and oversleeping/feeling like you're in a coma? And how have they gotten better? And what kind of stem cells did you get again? I am definitely going to do HBOT. Then maybe 5htp if that doesn't heal me that well. I'd like to do the stem cell thing if all else fails and I have no other options left. Because I am not taking klonopin and SSRI's for the next 50 yrs til I die. It's ridiculous. Either the place you mention or in Norway that I hear people have had wonderful results from. It's call EmCell in Kiev ukraine. It won't me post links just yet on the forum but look up the god cells: full documentary.

DrainBamaged, (That is an inside joke)

5-HTP is not a healing agent. It helps the brain work the way it is supposed to work without the need for an SSRI. It only takes the place of the SSRI and maybe helps you live without the benzo, too.

It has NO side effects other than needing to not take it and an SSRI at the same time. Taper the SSRI and add the 5-HTP.

I would go the natural route long before I tried the HBOT and other expensive and unproven (works for some but not for others) protocols.

My psychiatrist recommended 5-HTP as a way of getting off the Paxil/paroxetine/SSRI. Is is cheap at $10 a month for 200 mgs a day. It will take 2 to 3 months to see if you benefit from 5-HTP as you wean off the SSRI and onto 5-HTP.

Hmmm. A supplement that is naturally produced in and used in your brain with no side-effects or a synthetic drugs that screws with your serotonin modulation system and causes a page full of side-effects. Let me think about it.

I waited far too long. I was looking for a psychiatrist who would monitor my transition for SSRI to 5-HTP because the prior psych retired before I was ready to try to switch.

If the natural brain support does not work, you can always go back to the synthetic drug/SSRI.

Ok thank you. You said you were on the SSRI's for quite some time.. how long did you taper before you got on the 5 HTP? And you didn't mention where you get your 5 Htp from? I don't wanna purchase a crappy one off of amazon that isn't potent and doesn't work.

I have hope that the 5 htp will work. We sound like we have/had the same symptoms with the sleep, anxiety, suicidal thought and heart palpitation issues. I am ready to dive in and get off the ssris. Also, last question, what other supplements do you take that help you? List them all please I need all the help that I can get. I appreciate all of your help. You are doing good for a man on the edge.

I've heard of someone doing well with 5 HTP for their brain.

Keep in mind that if it helps with some deficiency it can also have a positive domino effect into other areas of your health.

5-HTP is standardized. I get mine from Vitacost.com Walmart sells Nature's Bounty. I shop for best price. I don't go for the high priced up sells. I am not placebo influenced.

I was on maximum dose SSRI Paxil for 14 years. I tapered over 2 months and started adding 5-htp after getting to 1/2 dose.

Some try L-Tryptophan to help with taper off an SSRI. It is a precursor to 5-HTP.

SSRIs and Benzos are not good for the brain.

Ok thanks for the recommendation. What other supplements/herbs do you take that help you with TBI/Anxiety related symptoms? And how much 5htp do you take and what time of the day?

Thanks

Mark In Idaho?
 

Also, Mark in Idaho..

I was looking at the Vitacost site. Do you take the actual Vitacost 5 HTP brand or Natrol or Jarrow 5htp? And do you get the one with vitamins B6 and C? Just forgot to add this to my last question. Need all the help I can get and would LOVE to know all that you take along with the 5 htp and what other supplements. As well as how many MG's you take per day and at what time of day.

THANKS!

I do not mix supplements like 5-htp and B-6 or C. This is just lame.

I take 200 mgs of 5-HTP every morning. I take 1000 mcgs of B-12, am and pm. I also take 200 mgs of L-Theanine in the am. My DO likes my regimen.

I buy the best price 5-HTP. They are all the same. Vitacost usually has the best price.

Sign up for the email specials.

When you prepare an order on Vitacost, leave it in the cart of 24 hours. They will send you an email code for an additional 10% off to complete your order. I never pay full price.

Check the full vitamin regimen in the vitamins sticky. I used it when I has more severe symptoms, including severe depression. It changed my life.

B-12 is important

I still have all the same symptoms. I have had depression and anxiety as well as suicidal thoughts, but I had those before. I personally haven't had much in the way of fatigue, but a great deal of trouble sleeping. Some things have gotten better, but people get different results. He uses VSELs, but can't separate them from hematopoietic stem cells with his machine.

My side effects have been significant, unlike others I've heard about. My experience with Dr. Hughes was negative in some ways, positive in others. Something to keep in mind is that he is not trained in neurology or neurosurgery etc. He is a DO who is jumping on the stem cell bandwagon. It is very profitable right now despite a lack of concrete research. His protocol makes it hard to some extent ot tell what is doing what as he uses so many things.

Frankly, I recommend against seeing Dr. Hughes. I don't know that he fully understands what he is doing.