Can't understand why i seem to have gone backwards
 

Apologies for another thread. I'm just so nervous and frustrated

My ability to exercise, which I've been working on at PT, has been dramatically reduced. I felt decent today after a chiropractic adjustment, but Walking 10-15 minutes dramaticlwly increased my symptoms and now I feel horrid. Symptoms ramped up badly. Just a week or two ago I would have been able to do this just fine.

I was beginning to have times where I could tolerate a little bit of socialization, but now within minutes of being with friends I start to feel horrid again.

I'm now sensitive to bumpy roads and head jostles. I wasn't before.

I get headaches much more frequently, which haven't been one of my biggest issue up to this point.

Can't handle more than 5 or so minutes of TV. Used to be able to go 20-30 minutes a month ago.

And (although this isn't new), my inability to speak eloquently is drive me crazy. I used to get complimented on my confident and concise public speaking. I can't believe I've lost that. I want it back so badly.

Is this normal to suddenly have worseneing symptoms? Maybe I hit my head on the headboard/wall in my sleep or something? Sometimes I hit my head in my dreams. Could this be based in reality? I just can't figure out why I'm feeling so much worse lately other than possibly having hit my head again. and that thought scares me to no end. God, I can't afford another concussion

I'm so upset

Stop tracking or measuring your symptoms.
A single chiro adjustment will not make a difference unless you have a locked up back. The idea that you tracked how you felt after a chiro adjustment suggests you are too focused on tracking symptoms.

When you say 'socialize with friends,' what does that mean ? Going to a club ? Large groups with lots of voices ? Noisy environments ? Have you tried wearing foam ear plugs in environments with lots of voices ? You can still hear nearby voices with them.

What do you mean by exercise ? Are you doing cardio with a targeted heart rate ?

Can you watch a Crackle (free) or Netflix or Hulu or YouTube program on a computer with ear buds ?

Are there some types of TV programs that you tolerate better than others ?

My concern is that you have over-sensitized yourself to the slightest appearance of a symptom. Once you notice it, anxiety kicks in and magnifies it 10 fold. Many of us live with PCS symptoms at a 2 or 3 level. If we let them frustrate us, that frustration anxiety will quickly push those symptoms to an 8 or 9 intensity.

By socializing with friends, I mean anything from sitting around a quiet room with a few friends or going to restaraunt. Can't handle any of it.

Can't really handle computers too well. I seem to tolerate the smart phone better than my lap top. Maybe because I don't have to move my eyes as much

As for TV, early on in the recovery I could handle football games somewhat decently. But just the other day I couldn't even tolerate watching the Masters (probably as low stimulation tv as you can get) for more than a few minutes. That's part of when my fear of a new unrealized injury really began to increase. I know it's probably irrational but I just don't understand it

As for exercise, Im just attempting to walk down the street and back. The goal is to get to 20. I still have yet to get there though.

Finally, yeah I believe the anxiety is a big part of it. I just have a really really hard time eliminating it. Hopefully once I get medication I can see a difference here



Also, if what you say about chiro results not being possible in one visit, then perhaps my issues are more neck/crrvical than brain? That would be nice. Maybe I'm just grasping at straws.


As always, thank you. From the bottom of my heart

You don't have an unrealized injury. First, you need to get that out of your head.

Have you been assessed by a behavioral optometrist ? NORA has a referral system. Health Care Locator Custom

Do you have different resolution TVs to experiment with ? I had a problem with hi def TVs early on. I did much better with the old tube TVs. HiDef has 2 to 8 times as many pixels for the brain to process and much more brightness. http://removeandreplace.com/wp-conte...1080-4K-8K.jpg

"As for exercise, Im just attempting to walk down the street and back. The goal is to get to 20. I still have yet to get there though."
Get to 20 what ?

"By socializing with friends, I mean anything from sitting around a quiet room with a few friends or going to restaurant. " I can understand the restaurant but quiet time with friends should not be an issue. It sure sounds like something else is at play, like anxiety.

What medication are you looking forward to ?

I can't do the quiet room with my friends because of my speaking. Conversation is very difficult. My brain becomes fatigued and overloaded.

Interesting point on the TVs. Only have HDs in the house but maybe I can turn down the resolution?

Apologies for not clarifying on the 20. 20 minutes is the current goal. I want to do 20 minutes every day but I can barely do half of that, and still feel a symptom increase

Looking forward to getting an SSRI. I have an appt with my psychiatrist next week. I was debating whether I wanted to get it up till now, and was putting off that appointment. Now I'm ready.

Hey Nick, sorry to hear about all of your symptoms brother, you and I have very similar cases and we seem to be near the same age (I'm 20). Got a skull fracture/TBI (no coma) when I was 13, seemed like I fully recovered In a couple months. Then in December 2015 I got completely knocked out on the asphalt by a few guys and pounded for a good amount of time after I was out cold (woke up in ER next morning barely recognizable) . What worries me now is what seems to be an increasing sensitivity to movement. I have to monitor how my feet touch the ground, can't move my head to fast or I will DEFINITELY feel it, cars bumps are jarring, but with my 220lb frame it seems like my feet touching the ground gives my head the biggest jolt. I am trying everything and will absolutely not give up, if I keep going on this way it won't be much of a life at all. Just paid for 40 visits at a hyperbaric place near my house (I'll keep u
Posted) on that, I am doing extensive research on the stem cells (hopefully that will help with the over sensitive head, luckily parents will pay for treatment) . I am trying to get a lot of rest, head movement excrsizes, powerful DHA fish oil, magnesium, d3, lots of fresh Turmeric and curcumin supplements, literally devoting my life to trying to heal. I think we should keep in touch we can use the support of each other. I think it's pretty rare two guys who aren't even old enough to drink yet can't even move their head swiftly without getting jarred, sad stuff but I feel like not giving up is the key. Can't wait to hear back from you man, God bless

Sincerely, Trevor

Trevor,

Welcome to NeuroTalk. It is rare that people on the PCS forum read the New Members' posts so I'm reposting your New Members' post so others can see it.

"Hey guys, this is my first post on the forum just joined today. I guess ill jump right into it, in 8th grade when i was 13 I got a skull fracture/TBI (no coma) was in the hospital for about 5 days. Was rough for the few months after but eventually I returned to what I thought was normal.

Didn't have any problems with my head until I got my last concussion in December 2015 (I was 19 at the time), got jumped in Long Beach, knocked out cold, and was kicked in the head and bludgeoned on the asphalt for about 10 minutes afterwards. I was devastated when I woke up in the ER at 4 am the next morning, I knew my life was changed forever. For the next year after that i tried to really take it easy, and i noticed that whenever I moved my head even slightly fast I would feel like I could literally feel my brain moving around in my head.

I've hit some bad luck recently, fell down a couple of times in last few months and had a candle stick fall on my head. At this point I am living in a state of chronic stress and fear, it feels like the sensitivity to movement has gotten worse, whenever i hit a bump in the car my ears will turn red, eyes bloodshot, vision blurred and get a feeling like i just got jarred, I literally have to walk so slow and with padded cushions in my shoes because I literally feel the impact in my head if I take a full weight step, and it is super noticeable if I am barefoot.

Every time i move my head i seem to feel it, and it is not a good feeling. I am so worried about getting CTE and am literally doing everything I can do to prevent it (fish oil, magnesium, vitamin d3, lots of sleep). Do any of you have sensitivity to movement like me? would love to talk to some of you, thank you.
Sincerely, Trevor "

Have you considered that you may have a vestibular injury or a cervical injury that has not been addressed ? It is quite common for these issues to be overlooked in injuries like yours. Cervical injuries can cause changes in blood flow when the head is turned or otherwise moved.

You should add B-12 and folate to your regimen. Check out the Vitamins sticky at the top. Curcumin is good but turmeric is not helpful unless you consume large amounts. Only a small percentage of turmeric is curcumin and very little curcumin is absorbed with it being extracted and combined with pepperine or a similar addition. Curcumin extract with pepper extract (pepperine) is the most absorbable.

Excessive sleep is counter to healing. The brain needs to be active and only sleep at normal times but quality of sleep is important. If you feel sleepy during the day, it is often a sign of poor quality sleep.

btw, Trevor and Nick, If you use the Post Reply button at the bottom left, it does not quote the previous post and makes it easier to scroll.

Thank you Mark, you have so much knowledge in PCS and reading you replies in other threads has helped me out a lot. I don't sleep during the day but I try to get a full 8 hours when I go to bed. I definitely think your right about the cervical or vestibular injury, actually on some powerful antibiotics right now (augmentin) for a double ear infection, after I'm finished with those I will definitely get my neck/spine checked out. I think my neck probably has to do a lot with my symptoms, seems pretty stiff and is always making little crackling noises. I also worry that because my brain has been rattled inside my skull so much that there could be damage to the protective tissue between my skull and brain ( I think it's called meninges) which would explain why any inertia causes me to feel something moving around in my head. Thank you for all the wisdom Mark, greatly appreciated
Sincerely, Trevor

Trevor, Don't try to over diagnose yourself or make complicated assumptions. It usually leads to anxiety. The simple fact is your brain took quite a beating. The sense of your brain moving is more likely a vestibular issue.

The subtle neck injuries common to PCS rarely show up on imaging, unless the x-rays are taken by an upper cervical chiro. A PT can sometimes help with gentle traction and mobilization. Then, good sleep posture and being a bit protective with day to day activities, no extreme head/neck angles, and such for an extended period can help things settle down. Some do neck strengthening exercises. Avoiding range of motion exercises early in the process is good for some.

Nick,

If you can't do 20 then don't do 20...do what you can and nothing more until you can comfortably do more. It took me 2 years to be able to return to similar exercise levels prior to. My accident.

In regards to friends and social settings. Stop comparing yourself to your past...it will only serve to tear you down. I was a very social person before my accident, not as much now. I sort of came to the realization I talked to much and to readily and learning to be quiet and listen has turned out to be a pretty decent change.

There are a million different ways to communicate you are present and attentive while in a group besides speech, be open to learn different ways of communicating...I certainly had to.

I found using my past as a goal rather than a comparison was much more productive. It allows you the freedom to rebuild without needing instant achievement. Remember, no one adds 100 lb. to their bench press overnight.

I too experience unexplained setbacks after 3 years now so it isn't uncommon. They are further in between now and they don't incapacitate me but do require some courage and creativity and then they pass. Pay attention without obsessing and you will find workarounds to such incidents.

Trevor,

Welcome and sorry you are part of the club so to speak!

As Mark says don't over diagnose, it is very counterproductive. I hope you saw my line up above to Nick..learn to pay attention to symptoms, causes, patterns etc. without obsession. It is a very important line to learn.

Obsession kills motivation, it destroys our hope to improve and leads to constantly searching for what doesn't exist. Proper objective observation helps us to make the gains we desire when they are finally possible and how big a step to take, it exercises our minds creative and analytical abilities.

Take Care,

Bud

Hey Trevor,

I would appreciate keeping in touch. You're right, it seems we have a lot in common.

Frustrating beyond belief to feel like we've been taken out of life when it's just beginning. I've already taken this last year off, and I suspect I may not be able to go to college this coming fall, either. But I'm staying hopefully. If not next fall, then next fall.

The good news is I have read/been told by doctors that younger brains are more resilient/neuroplastic, and have supposedly better times with recovery.

I'm beginning a new rehab program that supposedly yields good results. The walls of the facility are lined with signed thank you photos upon signed thank you photos of High shook and college athletes who recovered and returned to their sports. Granted, I'm sure there are plenty who don't. But hey. I'll let you know how it goes as time progresses

To Mark and Bud, really appreciate the helpful advice guys, I definitely agree it seems the more you obsess the worse it gets. Had a pretty bad coughing fit a couple hours ago (felt pretty jarring), instead of obsessing like I usually do I just put on a podcast and took my mind off it and seemed to not have any symptom increase. Nowadays I can manage my stress level as long as nothing catastrophic happens (like a fall or a significant jarring). I do wonder (not obsess) how it is near impossible to find any website or neurologist that will acknowledge how people that are dealing with PCS have heads that are ultra sensitive to any kind of inertia or movement. I imagine the neck has something to do with it but there has to be something else going on. Do you guys have any ideas what it might be? Thank you and God Bless

To Nick, we definitely do have a lot in common man and I really appreciate your reply. I so feel you about the college thing, I'm having to hang back at the moment too, taking an online class at the moment but that's it, simply too much going on in a campus environment for our condition right now. That's some good news about the neuroplasticity. How is your memory doing? It seems despite the concussions my memory and speech are pretty unchanged (although short term unimportant thoughts escape me faster and academic tests are more difficult it seems). I did some memory and balance/reflex tests with a neurologist a couple weeks ago and I passed them all relatively easily, so much so that she wouldn't take me seriously about how sensitive I was to movement. I imagine like myself your main concern is this extreme sensitivity to movement or any type of inertia, makes outdoor life somewhat of a dangerous encounter unless you are monitoring your every move. I will keep you posted bro, I'll let you know how I'm feeling after I get a few hyperbaric appointments done (although the 20 minute drive each way might be counter productive) Ill talk to you soon man, God Bless

Sincerely, Trevor

My memory and speech are really bad, unfortunately. I have a lot of cognitive difficulty. My speech isn't very good. I don't slur words, but I don't fare very well in conversations. I struggle to convey thoughts. This drives me *crazy* as I used to be a conversationalist. It's really frustrating, especially with the random increase in symptoms I'm having. I really hope that goes back to normal someday

Granted it's only been 5 months since my last injury

Trevor,

If the HBOT treatments help, you will not usually notice a difference until after you have had 40 to 60 treatments. But, maybe you are highly suggestive to placebo effect and will see improvement. If your memory and cognitive functions are good, I wonder what symptoms you are seeking treatment for.

I really think you should spend your effort getting a vestibular assessment to see it that is the cause of your movement sensitivity.

Nick,

I'm going to repeat myself about speech.

Stuttering became a big deal for me, like you I spoke easily and due to my moms influence I have a nice vocabulary....stuttering bothered me and made me withdraw and become quite.

The withdrawal eventually became unacceptable and I had to figure out:
1. How to work around it.
2. How to not worry about it.
3. I eventually began to let people know when I was having a stuttering episode why and to bear with me, if I felt it appropriate to the situation, not to be used as a crutch though. Mostly this set my mind at ease and gave me the freedom to be patient with myself during the conversation.

My work around became slowing my mouth down and THINKING before I spoke, something I actually value greatly now...I had to plan somewhat what I was going to say. At first it was embarrassing though I was the only one that was aware of it!

I actually put my foot in my mouth less now, even eloquence whenmisspoken is still a foot in the mouth.

My point is search for the bright side and make that a strength. Don't look at what you see now as a loss, make it an opportunity.

Give yourself time, you are pretty early in the recovery process, you will recover and move on but take advantage of the learning opportunities, you want to go to college, you are in it right now, the college of life!


Eventually my speech has mostly returned but I now catch myself, at times, before I say something eloquently stupid.

Take Care,
Bud

Maybe sometimes when I explain my symptoms I sometimes play them down a bit (I think I do this for myself to keep my outlook high) when I said my memory wasn't really changed I was more referring to long term memory. As far as short term memory and learning new things and remembering what people say is definitely a struggle. Sometimes I will listen to my tutor talk for about 5 minutes and when I think back and its really rough to even recall anything she said. Sometimes I will walk to a part in the house and it will take me about 10 seconds to even remember why I went there. As far as speech I can't sound normal when I am on my A game, but if I am tired I will most likely slur a bit if I'm not paying attention to it. I was hoping the hyperbaric treatments would help heal whatever is making my head so sensitive. I know last night I was walking pretty quickly and tripped on a comforter, granted I didn't let myself fall but when I stumbled my head went forward and jerked it up as I caught my fall and I had to run it out for about 5 heavy steps because my body had so much moment from the trip. I wonder if those big impacts from my feet pounding n the ground did damage to my brain? I am not obsessing but am genuinely concerned. After it happened I had a weird pressure on the back of my head, luckily I didn't get a headache and was able to go to sleep about an hour later. Definitely felt a bit word after it happened I definitely could feel some pressure on my head directly after that stumbling instance happened. Is it possible this did any damage or could make me any more sensitive to movement? Also just went to Whole Foods and picked up the 365 everyday value vitamin b50 complex (thank you mark for recommending the b50) . Also is it bad to smoke a hit of medical marijuana before bed? I don't use lighter fluid I light the bowls with organic hemp rope, was wondering what you guys thought of that. And to Nick I would say keep your positive attitude and time is definitely on your side. My speech and cognition have seemed to improve a lot since I was when I was 5 months out from getting my last concussion in 2015. I also recommend you use this magnesium I just got, guy at the HBOT place told me it is one of the only patented magnesiums that is able to cross the blood brain barrier, it is called XYMOGEN OPTIMAG NEURO. Literally seems to be helping sooo much with headaches, basically have none now that I'm off the antibiotics and am taking that magnesium daily. Love hearing from you guys, were all in this together. You are all in my prayers.

Sincerely, Your Friend Trevor

Thank you for this bud.

Yeah I try to remind myself that I'm still early on, and have tons of time for improvements. It's just scary having multiple injuries under the belt. Really praying for a full (or at least 90-95%) recovery, and it can be unnerving when doctors pause wide eyed and go "that's a lot of concussions for a person to have" and "yeah that's going to make things a lot more complicated."

Like when I had my first PCS rodeo, during my second concussion, I wasn't that worried. Took 6 months and was frustrating, but I had 100% belief I would recover. And I did. 99-100 percent.

But Now that I'm at 4, that thought just lingers in my brain. What if you've done too much damage. What if it's too late.

That's a really, really good point about the learning aspect of it. WHEN I do get to college, I'm going to be a much much much more mature man than I was had I not hit my head that third/fourth time (Hopefully I can still get some of carefree-ness back too, tho! Just with a little extra emphasis on protecting my head hahaha)
Just have to remind myself that the day will come where I can live freely again, eventually.

Last reply still bing approved while you posted that last one nick. You will get to that desired point of recovery bro, your so young, your dedicated to recovering, time is absolutely 100% on your side. Especially that you are only 5 months in your brain has soo much time to heal. I know it's super tough right now but it will improve with time if you listen to your body and let yourself heal. Much love- Trevor

Sorry meant to put "can sound normal when I'm on my A game" not "can't"

nickd,

4 concussions is not such a big deal. I had over 8 by 20 years old. I had some struggles in college but I was also entirely self-sufficient since graduating high school. I've had 14 concussions by 46 when my more serious issues started manifesting. My second concussion at 10 years old (1965) was a severe concussion. Hospitalized 3 days due to slurred speech.

There was no help understanding concussions until 2000 or so. My neuro at 16 just told me to stay away from alcohol. I just had to tough out everything else.

My strong suit was nobody was scaring people about concussions with things like CTE, etc. There was no anxiety about every bump. Just a caution about taking risks.

So, count your blessing that you have only had 4 concussions and know to reduce your risks. But, don't worry about the little bumps. Of my 14 concussions, I have not counted any of the little bumps. Only those impacts when I knew I had rung my bell.

Move on. Stop looking for symptoms. Take things slow when you feel you are pushing too hard. And, try to learn how to do as much as you can by working around your limitations.

You will get much better. Often, improvements come when you stop paying attention to your symptoms and limitations. You have 'ah ha' moments when you realize "I have not experienced symptom 'xyz' in weeks."

Thank you to all of you. I feel much, much more at ease now

Trevor,

I see You mentioned medical marijuana? I myself have actually begun experimenting with High CBD/low THC marijuana concentrate (62% CBD, 3% THC) through a vaporizer I acquired at a dispensary. The vaporizer and concentrate is nice because it eliminates the nasty chemicals. No psychoactive effect either due to low THC levels.

How has your MMJ experiebce veen? What kind of strains do you use?

Actually haven't smoked last couple of days, seems whenever I smoke at night I make some type of quick movement or trip up a little bit and run into a slight setback. But when I smoked I would smoke indica only or at least indicate dominant hybrid; king Louis OG, sky walker OG, Girl Scout cookies were some strains I would often get. How are things going with you? Sorry haven't been on forums in last couple days been struggling to get solid sleep gonna try to get the sleep cycle back on track to tonight, I hope things are going good with you man.

Sincerely, Trevor

Everything I have read points to CBD as the beneficial part of cannabis when one suffers from PCS with THC only beneficial in micro doses. Indica is THC dominant. Few indica strains have a good ratio of CBD to THC. 5:2 would be a starting point but 20:1 CBD to THC is considered better. Remedy, at 15:1 is helpful for some.

Don't expect to find lots of CBD dominant strains in most dispensaries.

Does anyone know anything about nocturnal seizures? I've been having weird occurrences in my sleep.

Last night I woke up in the middle of the night and I felt very dizzy and all my muscles felt exhausted. I also felt like my feet/leg muscles were spasming a bit and I couldn't control it. I tried to get up to use the bathroom and everything felt very, very spinny and nauseous. Vertigo?

Today I don't feel spinny anymore, but it was pretty frightening.

I also often have sleep paralysis. I've never had that in my life till this last concussion. I read this can occasionally indicate nocturnal seizures.

Sometimes I also awake from sudden neck spasms in my sleep

It's probably nothing, but I'm a little spooked.

Have you been researching these issues online ?

I had some of these odd symptoms that I resolved by learning a straighter sleep posture. No thick pillows. No head twisted during sleep.

Trying to research it, but I find a million different answers.

I've begun using this fancy pillow for my neck that has improved my sleeping a bit/helps my neck posture a lot. Still have weird occurrences though

Researching health issues online often leads to an over-exaggerated belief that one is experiencing those symptoms.

Buying a fancy pillow means nothing if it is not doing what your head and neck needs.

What does this fancy pillow do ?

What position do you sleep in ? Back, side, front.... head straight forward, tilted to the side, tilted forward ?

https://www.necksolutions.com/wp-con...eck-pillow.jpg

this similar to what it looks like.

I sleep on my side (head propped on one of the pillow ledges). I have a bad habit of leaning my head forward when I do. Been working on that

Nick,

My sleep got real different after my accident...nightmares, wild dreams, loss of sleep and eventually turned into crazy fear of even laying down.

Eventually it all smoothed out and back to normal. Try your best to stay calm about it.

Bud

I can empathise with your situation. I too cannot tolerate simple conversations, even within my family. Extraordinarily frustrating.

I'm not sure what the answer is to getting better as I've yet to find it. However, after 3.5 yrs of trying, I do know that the "push it" philosophy is a sure road to hell. On two separate time periods, I've tried the immersion philosophy/approach to desensitizing myself, and in both scenarios it has taken months and months to recover. During this time, I have reduced tolerance, increased headache intensity, and a host of other things.

I bring this up because there is a lot of talk about anxiety. I think for some people, this is discussed from the wrong perspective. Anxiety is not the cause of our problems, though it can exacerbate concussion-related symptoms. For me, anxiety is the result of over-stimulation and generally occurs during the early phase of recovering from a given event. If I am pushed during the time-period, the anxiety gets worse; if I recovery and am careful, the anxiety dissipates. At my basal level with no overstimulation, anxiety isn't ever an issue.

Overstimulated brains have altered physiology, which leads to a host of various things... worse symptoms, darker mood, anxiety, depression, etc...

I guess the key is to find that boundary that lets you attempt to push things but not get over-stimulated. For me, this seems virtually impossible but I've come to accept this and seem to be getting by.

So, I've been doing vestibular therapy stuff for a few weeks now. One of these exercises involves bringing a stick with a red bead on it to and away from my eyes in a figure 8 pattern.

I hadn't done it in a couple days, but the last time I had, I was largely able to do it without any significant problem.

Yesterday and today however, I am now completely unable to converge my eyes and focus on the bead when I bring it close to my face. It's like my ability to converge has suddenly disappeared. What the heck.

Why is this? Is this normal? Should I be worried that I can no longer focus my eyes on things close to me? I don't remember getting any new injures or anything....

This is just the roller coaster ride of PCS. It does not usually mean anything but maybe a poor night's sleep or overdoing it.

My eyes give me the most trouble in the morning but sometimes I will struggle at other times. I just move on and things change.