Is it all in our minds?
 

Sometimes I wonder if this whole PCS thing is all in our heads. Some of the symptoms are completely legitimate (dizziness, tingling, etc), but I feel like that fact that we are all on this forum and have done a lot of research into PCS, we may be actually feeling exaggerated symptoms because we are so aware of them. Things like brain fatigue, tiredness, etc are all part of daily life. I think at times we may be just reaching on these symptoms and over-exaggerating them.

I think the point here is that many times we cause ourselves anxiety by focusing on every little symptom and concern. Our ability to question every little issue can lead to making a mountain out of a mole hill. I have learned to accept each symptom and work with it rather than fight against it. Take a break. Stop to think. Close your eyes for a moment. These are just a few of the many accommodations we can use to get past symptoms rather than getting stuck circling the symptom.

Speaking for myself only, I can tell you that I was not exaggerating anything - perhaps I was even underplaying symptoms.

The fatigue I suffered from a couple of years ago made it VERY difficult to clap during the annual year-end staff assembly. We just had it again last week and I was able to clap and chat and even left the room twice - I could NOT have done that two years ago.

Of course, the concussion I suffered caused my pituitary gland to malfunction and I'm only getting better due to HRT. Without it, I would still have difficulty clapping.

Yep, the self doubt gets to me... but then I have incidents like yoga last week where I just can not function... I can not focus on anything... and then I know that this is all real...

I think you can easily get into a situation where you're constantly assessing how you're feeling and comparing it to what you remember as how you were before. I read that after about 3 months the physical damage of PCS has healed and what you are left with is psychological scars, I don't hold with that myself, I think you can double that to 6 months or even a year for hormones to rebalance etc. I do think the mind controls the body and simple things like exercise, laughing, positive outlook and good company can work wonders. I wish more research was done into mtbi it's such a common injury but until drugs companies see a buck in it then there won't be the funding!

there are many times throughout the day where I say "was i like this before?" and then beat myself up and say "no, i wasn't". At times I think that we are victims to all or nothing thinking, confirmation biases, etc.

I agree with Mark, I feel like a lot of us build mountains out of mole hills...sometimes you just need to relax and accept things will get better.

Exactly. Ive downplayed my situation to everyone incept for this forum and my wife.

There will never be a real buck to be had because everyones head heals differently... mine did not heal like Kev's... we had accidents about the same time... Mine will not heal like the MANY MVA's that we have on here...

The bad part is there is NO fix for this.. you can only manage symptoms... and everyone manages those in different ways.. some think that the holistic approach is just as good as drug cocktail... it has to be what works for you and what gets you to the point where you think that you are "healed" or able to consistently work around the symptoms you have and make it work in your life...

absolutely not!!!!!

Ditto what Hockey said!

willgetbetter,

Your opening statement, "Sometimes I wonder if this PCS thing is all in our heads"...Hmm. You came to this website seeking information on dealing with your post concussion issues and readily accepted advice. We all did and still do. But to make a generalized statement about all of us is so wrong on many levels. You experienced a remarkable change in your status only 7-8 months after your injury. For that I'm glad for you.

But for the many others of us who have dealt with ongoing issues from PCS, mine going on 20 months and others here much longer than that, you simply cannot tell us we are" reachng or overexxagerating our symptoms" because you have not experienced the truly prolonged changes that are life-changing and disabling.

Like Mark always says, "If you've seen one brain injury, you've seen one brain injury." You were fortunate enough to have most of your symptoms resolve and return to most of you pre-injury activities. Yet you experience some kind anxiety about the symptoms that remain. Join the club. I don't know if any of us knows exactly how we are to recover and when that recovery will finally end. I know I am more acutely aware of each symptom, although being aware of them does not mean I become over-anxious or fixated on them. It simply means I am need to be aware of what my new set of limitations are, and this is encouraged in brain rehab so you don't get over-fatigued or experience any potentially dangerous situations.

We need to understand one another on this site, and not be making negative generalized statements here. It is hard enough to get people who have never experienced brain injury first-hand to "believe" us; we don't need to cast more doubt and add to our own problems by not supporting one another. Please, let's all be understanding of each one's unique experience.

Take care, M-i-m

M-i-m, I wish I could thank you a million times. :grouphug:

Interesting question.

One thing that I consider is that I can't say for certain what I really felt like before my TBI. There are about 5 weeks I don't remember anything, and human memory is subjective and continuously influenced by new events and stimuli. All I can say is the way I am today is the "new normal". I'm fortunate in that I am able to work and move forward with my life. The occasional vertigo and other obvious symptoms are things that I just have to deal with. My emotional state varies, and I have no objective comparison to the way that was before.

I'm doing significantly better than I was 3+ years ago. In the beginning, I second-guessed myself a great deal.

I don't really second guess myself anymore. I see this as a sign that I am improving. I didn't second guess myself too much before the accident I was in either... I do it even less now.

I have returned to being a confident individual about what I can and can not do. But I can do a lot less than I could before the accident I was in. I have had to re-learn what I can and can not do. I had to relearn it as an adult, when learning was more difficult for me due to cognitive impairments that I was trying to learn about. It has felt like a paradoxical process.

I remember second guessing myself a great deal and lacking confidence in my own analyzation skills after the accident because of the concussion. It's because my brain wasn't functioning well enough so I relied on others to help me gauge my reality.

It's a truly awful place for any adult to be in. It's an awful process for anyone to be in...

It's VERY difficult to learn how to be in the world suddenly with completely different abilities/skills, more specifically with severe cognitive impairments, after doing things one way through one's entire life beforehand! I'm sure you can all relate.

I do not believe that we are making mountains out of molehills. At least, I am not. Perhaps some people are... But I do believe that thinking about it this way is a compensatory strategy to help us to accept what has happened to us. I also think it may be difficult for people around us to hear about what we are dealing with on an ongoing basis, so perhaps thinking about it this way helps us to complain less frequently about it...

I think recovering from a tbi is an arduous process. It is the mountain.

I think some of us are ruffled by your statements because we live in a prison of sorts.

This is in my brain because it's damaged but not fabricated my emotional mind.

My life was full and active with family, friends, career, independence, and so much more before the accident. My family and I have lost so much.

There is no big payout, no benefit to me to stay this way nor a benefit to my family.

When someone experience a healing or success at kicking a habit they can have a righteous and degrading attitude towards others that can't do the same. The whole, "Well if I can do it anyone can do it!" mentality is detrimental to those not successful, and it's offensive. Healing from this is not a choice.

I'm sure a good attitude helps but if choosing to be healed worked, most would not be injured or sick in this world.

I am happy for you that you've healed, truly. After 18 months of this catastrophic life changing event I am happy for anyone that can escape the lasting damage of this type of injury.

I'm wondering if your comments come out of ignorance since you healed and are not living with this still. I don't mean that disrespectfully. Just that there may be things you don't know you don't know. We are all ignorant in some way or another. I hope you never know the deeper extend of what many of us go through here.

Jace

Thank you, Jace.

The medical evidence from C.T.E studies is overwhelming: Concussions cause PERMANENT brain damage. Experts, like Dr. Daniel P. Perl, the director of neuropathology at the Mount Sinai School of Medicine in New York agree.

Some people recover better than others after TBI - but nobody's brain will EVER be exactly like it was before the injury.

Ironically, I have found that some of the patients most compromised by brain injury are the ones most convinced that they are fine. Robbed on self-reflection, they are unaware of even the most outrageous aspects of their behaviour.

My neuro psychologist told me that she had a patient who, among other things, simply couldn't accept that his MVA had robbed him of sight in one eye. No objective evidence, including, covering the good eye, could convince him.

I had a gentleman in my rehab group who couldn't understand why he was at the hospital, because he was fine. The poor guy couldn't control his bodily function, swallow properly, focus his eyes, refrain from making sexually inappropriate comments or remember a conversation for more than a few minutes. It was just so sad.

With TBI patients, understatement of symptoms is a much bigger problem than overstatement.

Youre right hockey the brain cannot regenerate itself, therefore it will not be the same as before the injury. Our bodies themselves can heal (for the most part) because the body is programmed with stem cells to regenerate losses. The brain for whatever reason does not have stem cells to regenerate itself (Im a molecular, cell and developmental bio major). I can go on and on but the fact is everyone is different

But this forum has helped me a lot, raised my awareness and knowledge. I wish i found this place after concussion #1 and i would probably not be in my situation. But that is in the past. Also this forum has scared me too because some of the regulars and others have shown that this battle can be a long lengthy one. Severity of injury and age are probably major determinants of time for healing and chance of full recovery. Nonetheless, i will continue to battle and we all need to. Te truth is NO ONE knows much about the brain. It is complex and the best neurologist on this planet can say all they want but the brain remains a mystery.

This PCS is probably a combo of things, but they cannot observe the brain because if you touch it it will go into shock and bad things will happen. Looking into many research papers i can tell you all the brain;s main strength is not replacing the neurons but adapting to the situation. If neuron A and B are gone then C must take over. This obviously has its limits but if anything at least have comfort knowing that for viewing and typing on this forum, something "good" must be happening.

It IS absolutely "all in our heads"... since its a BRAIN injury! ;)

But if you're asking if I'm making up my symptoms or exaggerating them... nope, sadly I'm not. I did not make up my MRI results that showed brain damage 2 years after my injury and I did not fake or exaggerate my neuropsych assessment results either.

I farm and my available workload has not changed and I used to work sun up to sun down and often a bit longer with just enough breaks to choke back enough food to stay alive and now I barely have energy to do the bare necessities to keep everyone alive and we downsized dramatically following my accident. My fatigue is real and not made up in the slightest.

If I try to push through the fatigue, I run risks of increased falls (and further injury), my head will feel like it needs a hole drilled in it to release the pressure and my emotional state becomes volatile. My ability to speak or comprehend goes way down and operating machinery or working around large animals becomes extremely dangerous.

As others have mentioned, I'm more likely to do my best to not look disabled or affected in any way.

This means I often don't use my cane, even though I'm supposed to always use it... my rehab team has compromised that I only use it when I'm out in public... I probably use it 80% of the time when I'm in public, but never when I'm at home.

I'm more likely to overdo it than get enough rest. My rehab team is always lecturing me about resting and sleeping more and is always looking for ways to incorporate pacing strategies that I will actually use into my life.

Perhaps there are some people that enjoy laying around and doing nothing, but I'm not one of them and I would guess that the other people that are on this forum complaining about not being able to drive or exercise etc are not those people either.

Since brain injuries are nearly invisible, people with brain injuries have a hard enough time being taken seriously by their doctors, insurance companies, their families and friends... seems unfair to be invalidated on a tbi forum, of all places.

Starr

It's very real
 

We are invisibly injured, and our symptoms are real. I know I underplayed mine, but did get better, only to get worse until I had to drop out of work in order to heal.

Recovery is real too. Learning to manage our symptoms is a skill we have to learn and to accept whatever the new normal is going to be. We can still have full lives within this mystery of pcs.

I am thankful for the internet. I've gotten so much good advice here, sharing here, and therapy here.

thank you everyone and Neurotalk

Heal on!

poetrymom

Reading one post at a time so forgive me for multiple posts..... however, this one scares me a little... scares me a lot... I have understated my issues from the beginning and only have had one goal in mind since the beginning... to get back to work...

So does this mean that for the rest of my life when I overwork myself or my head I will get brain fog and with brain fog I can not drive... it is very scary.. I can not see or understand intersections...

I think we all tend, to some extent, to downplay our symptoms. It's part of not upsetting (annoying?) our loved ones and trying to keep up our own spirits.

The fact that you can acknowledge your brain injury, and seek treatment, means that you are NOT in the category of the folks I was describing above. As incredible as it sounds, those poor souls were COMPLETELY UNAWARE that they had a TBI. :(

There is noway to predict how much individual patients will recover.

From my own experience, I must say that I'm really amazed by the brain's capacity for neuroplasticity. I have regained things (like some sense of hot and cold in my hands), not because my brain healed, in the sense that a broken leg heals, but because less damaged areas of my brain have learned to perform this function.

No matter what anyone tells you about "windows of recovery," NEVER stop working at cognitive rehab. The brain in amazing.

Is what I can do now the same as before my MVA? No - but it's a heck of a lot more than I could do when I was pulled out of the wreck. I can even drive - nobody thought that would EVER happen.

Hope, believe, strive!:hug:

Thank you Hockey...

I think that I am just now, after 5 months realizing that I can not rush this... I have tried... I have done non-conventional therapies... I have done every drug on the market, I think ..

I just want this daily headache to go away... I wan to go back to work... I want to exercise... today is a horribly depressing day... realization stinks...

I think there are stages in TBI recovery. I tried the "ignore it and push through" phase. What a disaster. :thud:

You sound like me: the type of person who is proactive about finding SOLUTIONS. Sadly, TBI isn't that kind of problem.

TBI is hard on us chronic overachievers. Seven (gulp) years in, and I'm still wrestling to accept that I don't have to be "super cripple." (I also have a spinal cord injury.)

7 years... WOW!

It just seems like there should be some solution... I know theres not, but I just keep looking!

Please don't be discouraged by my situation.

I suffered what is called a spiral injury. I was cutoff at highway speed. My head went back and forth. The impact then sent my car, airborne, slamming it down perpendicular to the road, and sending my head side to side (and smashing it against the driver's side window). My brain did a complete 360 inside my skull, tearing off precious axions, from all areas. I lost consciousness and had bleeding into my brain. My neuro psychologist told me, short of being shot in the head, that's about as devastating as it gets.

My situation is complicated by instability in my neck. I sustained an injury high up on my spine. The neuro-surgeon deemed it too dangerous to insert metal rods. Sadly, that means that jostling can trigger symptoms like brain fog, headache, etc...

I was told, in the beginning, that it would be about adaptation, not recovery. Still, I have never given up and have come back much, much more than anyone predicted.

Amazing!!! Happy your alive and can share with me! Thank you!

I just got hit from the side and apparently hit my head somewhere... every doctor has said that however, I do not recall any of it... but swore I was fine... that was until the next day when someone told my my eyes were weird and pupils were different.

I believed the ER doc when they told me on a monday I would be back at work on a Thursday... I refused to believe my GP when he said it would be 3 months... I really need to learn to accept and stop fighting!

I'm one of those overachieving types too... which is why I continued to read and research until I found out about the hormones and pursued it until I received the testing.

It took me 3 years to get to that point of getting the testing and I'm coming close to the 4th anniversary of the date of the accident.

I remember the first neuro I saw kept telling me I was going to get 100% all back to normal in 2 weeks... then 4 more weeks... then 6 more weeks... and then couldn't understand why I still wasn't all better after 5 months... which is why I found another neuro who would take my case seriously.

Now I'm getting so much better than I was before the HRT that my Dr.'s (all except the endo treating me) are pleasantly shocked. I suspect that they were starting to think that my severe deficits and debilitating impairments were going to be permanent...

Every case is different and they say that the Type A personalities are hit harder by this kind of injury - but I suspect we tend to persevere better than the other personality types do.

I also could literally not see traffic in intersections, next to the car I was a passenger in or process even the speed of the traffic.

Now, I can drive on the freeway again, in short trips, by myself. It took me 3+ years and hormone replacement therapy to get there.

The hypopituitarism caused by concussion is the latest and greatest research concerning mTBI... but you never know what they are going to learn in the next couple of years.

I say never give up hope, do the best you can, and it gets easier as time moves on.

Are there symptoms, or symptoms that might be more pronounced, if hypopituitarism is in play after a mTBI?

Like Hockey said everyone heals differently. No one knows but the Man above. All i was saying is adding to the fact we are not crazy and the reason why there is no wonder pill or really anything so far that we lean to say yes we will heal 100% like brand new, better than we were prior to injury is because of the reason i specified. Athletes get torn ligaments and whatnot but some can become "better than before." There is still plenty of research left to do and possibly what im saying now can be outdated sometime in the future, but for now this is a fact. You CAN heal, just dont set unrealistic goals and predictions. I do not want to scare you because i honestly am a bit afraid myself, and id be lying if i said otherwise.

This is/has been my biggest fault and i am trying my best to let it go and gain back control of things i actually can control. I can sit here an type on and on everything i know but no one wants to read that. Plus i need to have cognitive rest so after my final that is what i must do. I will try to relax and have some faith

Thank You!

I am sorry to ask but what is HRT... I should probably know... how did you get tested? who did it?

I'm sorry you guys - I tend to post so much about it that I assume others know what I'm talking about. I've put many links about this in the stickies at the top... I recommend that every single PCS and/or TBI patient get their hormones tested ASAP.

HRT is hormone replacement therapy.

I was very determined to get better and I could not understand why I wasn't getting better after the concussion.

What I learned from research conducted by the Defense Center of Excellence (DCOE) and other research groups is that even a single concussion can cause one or more neuroendocrine problems from damage to the hypothalamus, pituitary gland or the pituitary stalk that connects them.

The pituitary gland provides us all with hormones throughout the day that we need in order to function cognitively and physically. It is sometimes referred to as the master gland. When hypopituitarism is caused by a concussion then a patient will not heal... they will not recover... their prognosis turns from good to fair to poor.

The medical community has known about this condition for over 100 years, but they thought it was VERY RARE. The latest research has indicated that it's not that rare at all and could be what PCS is altogether.
Some experts believe that PCS is a neuroendocrine disorder. And that it resolves itself in some patients within the first few weeks up to a year. And some patients's cases do not resolve themselves at all which necessitates HRT.

This is the latest research about it. Many Dr.'s aren't familiar with it and aren't familiar with the levels tested to indicate whether further testing is needed or what levels require treatment.

Once a PCS patient is diagnosed with hypopituitarism and they receive HRT, then their prognosis improves significantly. It takes about a year of HRT to reap the full benefits cognitively and physically but I have met other hypopit patients online who continued to improve after a year's time.

Some of the terms used for this condition are:

hypopituitarism
post traumatic hypopituitarism
neuroendocrine dysfunction
hormone imbalance

The symptoms for each PCS and Hypopituitarism overlap a great deal. The only way to know if a tbi patient is suffering from hypopituitarism is if their hormone levels are tested. TBI patients have different levels to indicate further testing or treatment than the "healthy" population and most Dr.'s aren't aware of that.

I had to see several endocrinologists in order to just receive the testing because three of them weren't familiar with it enough to order the testing and/or didn't agree that this could have been my problem.

My neurologist told me it was "impossible" and one endocrinologist I saw told me that hormones have nothing to do with cognitive functioning. My neuro has since told others that she sometimes learns from her patients (pointing to me) and the endo I saw who refused to even consider that might be my problem - well, I hope he's retiring soon....

http://www.dcoe.mil/content/navigati...mendations.pdf

http://www.dcoe.mil/content/Navigati...ing_Slides.pdf

http://www.dcoe.mil/content/Navigati...rence_Card.pdf

Thank you for posting this... unfortunately i can not understand this and have sent it to my mom for translation... she has by default become my patient advocate... she retired from oncology so she understands a lot... she comes up 900 miles to go to my neuro apts... (yes, she is the best mom to her 38 year old baby)

Page 14 of the DCOE slides in the link above list the Overlap of Symptoms (which looks really good) and here they are typed out.

PCS = Post Concussion Syndrome

NED = Neuroendocrine Dysfunction

PCS
Headaches*
Dizziness*
Blurred Vision*
Sleep Disturbance*
Sensitivity to Light/Noise*
Balance Problems*
Memory Deficits*
Slowed Processing*
Impaired Judgment*
Altered Executive Function*
Agitation*
Impulsivity*
Agression

Both
Fatigue*
Poor Memory*
Anxiety*
Depression*
Weight Gain*/
Weight Loss
Emotional Lability*
Lack of Concentration*
Attention Difficulties*

NED
Loss of Libido*
Infertility
Amenorrhea
Loss of Muscle Mass*
Increased Belly Body Fat*
Low Blood Pressure
Reduced Heart Rate
Hair Loss*
Anemia
Constipation*
Cold Intolerance*
Dry Skin*


*These are symptoms that I have personally experienced an improvement or a near-complete recovery from since I started the HRT.

Some of the charts you will find online about this issue that compare the two conditions and the overlap of symptoms will include more of the symptoms found on this particular chart under PCS under both.

And on some of the lists, you will find more symptoms and even more specific symptoms.

Anyone is more than welcome to PM me about this stuff. And I'd be more than happy to PM anyone's patient advocate and/or family members about this too.

The links I have provided in this thread are probably some of the most layman-friendly in terms of comprehension.

I, myself, had to read and learn a great deal about related subjects in order to interpret even more complex medical research publications, some of which I still don't understand.

This stuff is super complex and that is why Dr.'s get paid the big bucks. (I just wish more of them were more current with the latest research in their practices!)

Here's a new article I found that indicates patients who don't recover from PCS after only 3 months need to get their hormones tested:

http://nurse-practitioners-and-physi...-Symptoms.aspx

Up until I read this just a few minutes ago, I was under the impression from other reading that patients should wait a year. This is a boon and will help people receive treatment sooner.

"New guidelines on neuroendocrine dysfunction (NED) were released in August 2012 by the Defense Centers of Excellence. NED can occur as a result of trauma to the underlying structures in the brain. The anterior pituitary gland is the most susceptible area. The disorder can mimic symptoms of mTBI or PTSD, producing sleep disturbances, fatigue, memory and concentration issues, and emotional or mood disturbances.

If a patient experiences the above symptoms for more than 3 months or has a new onset of these symptoms up to 36 months after a concussion, he or she would benefit from NED screening (Table 3)."

Thanks so, so much for this. With all the damage I sustained, it's hard to imagine I was spared this. Now, if (BIG IF) I can find a doctor who will listen.

I agree. If you can afford it, I recommend my endo in Los Angeles. He has a lot of experience with this sort of thing and is primarily a researcher and professor at UCLA.

www.goodhormonehealth.com

BUT, you may still be able to find someone in your area who might take this seriously... your chances of getting NED increase with multiple concussions and severity of tbi.

By the by - this is probably what is causing our athletes so much trouble after concussion as well... or at least it's a part of it...