[pbob10]

Hi everyone

I believe I came accross this forum several months ago when searching for information regarding concussions and my symptoms, and have just done the same but this time decided to sign up, post and maybe ask some questions...

I've had PCS for a little over a year and it kicked in roughly a month after my concussion. For many months I had the apparently common 'foggy' sensation which was boardering on dizziness at it's worse, but basically felt like my head was fuzzy all day every day. I think it has improved but it's not completely gone. If 100% was the worst the fogginess got, I'd say it is something like 50% now, possibly lower, it's really hard to tell. Excercising makes it worse.

I also had headaches to begin with, but this soon subsided and it's possible they were just due to tension and stress as I get headaches regularly anyway. Also some mild tinnitus which seems to have gone, but noise sensitivity is still an issue. I had a lot of fatigue but that was the first thing to reduce and is now gone as far as I can tell.

Perpahs the most troubling of all the symptoms is the feeling that my brain is moving around whenever I shake my head or make any significant movements. This doesn't seem to be a reported symptom of PCS so I find it quite worrying. It is worse when I am tired and especially bad when I've had a long sleep. As the day progresses it typically reduces a lot. I'm quite a compulsive person so I got into a habit of shaking my head a lot to feel this weird sensation, but I try to avoid that as much as possible for obvious reasons.

I haven't had any obvious problems with vision, personality or memory. I've done online short memory tests and performed well. I do technical work and am able to perform much the same as before.

I went to the doctor a couple of times when all this first surfaced, but very little was done, I had some blood tests for unrelated illnesses and my suggestions of PCS were ignored. I gave up with the doctor but I'm thinking I should go back because of how long this has been going on. I'm in the UK so it's harder to get things moving in terms of seeing specialists and getting therapy, I'm not even sure how available this sort of thing is.

Is is likely that all this will clear up one day? I'd like to think I could do some intense excercising again one day. Also is anyone here from the UK who has any idea if I can be helped on the NHS?

Thanks for reading.

[BeccaP]

Originally Posted by pbob10

Perpahs the most troubling of all the symptoms is the feeling that my brain is moving around whenever I shake my head or make any significant movements. This doesn't seem to be a reported symptom of PCS so I find it quite worrying. It is worse when I am tired and especially bad when I've had a long sleep. As the day progresses it typically reduces a lot. I'm quite a compulsive person so I got into a habit of shaking my head a lot to feel this weird sensation, but I try to avoid that as much as possible for obvious reasons.

Hi Bob, No, it isn't just you. I have the brain moving around/jarring in my head as well. I'm five months into the pcs. If I'm barefoot I walk on the balls of my feet to decrease the jarring. It's not as bad when I'm wearing shoes with some padding. Same problem when I go over a bump in a car or move my head too much. I sure hope it will go away eventually! I'm sure one of the more experienced posters can help with that question. Good Luck!

[Mark in Idaho]

pbob,

You are experiencing a common symptom of PCS. You have reached that threshold where you brain has become sensitive to movement. Many of us experience the same symptom.

We may struggle with shaking our head "no" or have problems riding in a car on a rough road.

Some will have a difficulty jogging due to the impact of the foot plants.

The only way we have learned to deal with this is to stop doing it.

No more head shaking. This will take some serious discipline. I've done it. I know how difficult it is.

Riding in a car on a rough road can be better tolerated if you sit forward with your shoulders away from the seat back.

A back that is rolled forward, especially at the shoulders will absorb far more vertical impact than a erect one. I use this shoulders forward posture to snow ski. Without it, I would never be able to tolerate the bumps om a ski run.

Good shoes help, especially if you do any running/jogging. A good way to sense the impacts of a foot plant is to try some foam ear plugs. This will magnify the impact to your brain. By changing your foot plant (the way your foot contacts the ground), you can reduce this impact. A good running foot plant might start with an outside heal contact with a push off from the big toe. Try different shoes.

The foam ear plugs should be with you ate all times. Then, when you unexpectedly encounter a noisy environment, you can put them in. The yellow cylindrical foam plugs work best. Avoid the ones with a string connecting them. The string conducts noise to the ear plug.

They can be easily reused. Turn on the bath sink faucet and let if get hot. Leave the plugs in the stream of the flow and it will tumble them. They will come clean. Or you can leave them in the pocket of a pair of pants. This works too. LOL

Hope this helps.

Don't be afraid to ask us about your struggles. Likely, many of us have already experienced the same thing.

Bob,

Most likely you have damaged your vestibular - visual - cerebellum systems. These all work in concert to tell your brain and body where it is at all times in the universe. When this gets disrupted, your brain has no idea what is going on when you are moving. So, a small jostle to your head or extremely light bump will set off symptoms because your brain has no way of gauging the severity of the jostle or bump - it thinks that all movement is severe and sets off the inflammatory cascade. Depending on how much damage was done, you can actually rehab this. I am currently undergoing vestibular/cerebellum rehab for this where I have to slowly desensitize my brain back to "normal." It is a very slow and somewhat painful process since it sets off symptoms every time I do it, but so far I have seen improvements. If interested in doing this therapy, google search: "vestibular rehab, brain injury" and you'll find someone in your area to go to. You really don't need to go to an E.N.T. first because a lot of physical therapists now have doctorate degrees and can prescribe therapy. This will save you some money going this way.

[Mark in Idaho]

**

The least expensive way to get to a good vestibular therapist would likely be a hearing and balance center (hearing aid center). I have been assessed for this kind of therapy, too.

Those with the most profit to gain will push it the most. Those without a big profit bias will often give you the best referrals. A hearing aid center that works with balance issues can do the basic diagnostics to determine if their simpler therapies will help or if you should see a more specialized therapist.

Good luck with your search.

[vini]

Hi BOB

London calling its a bit tricky getting any kind of help from the NHS unless you have been diagnosed with a brain injury and thank your lucky stars you have only got the pcs

thats not to say its not a big issue for you, all you will hear from even specialists is rest and time

, there are some meds that people say have helped, but how you would get prescribed them on the NHS, I know not ,its good you feel you have improved, I wish I could say the same over 2 yrs out, but its all a mater of degrees with this

all I can suggest is omega 3/6 supplements keep hydrated try to do more activity but not to the point of head pain this maybe only be opening old wounds so to speak

I think PCS is more likely to set in if rest is not got directly after the injury

this is also been proven with more serious injury in the form of what is termed second insult injury the body basically destroys surrounding structures in the brain the rise in antibody's of certain type have been observed doing this,

but this is only in the early stages, well I think it can happen later with white matter scarring too but thats just my opinion ?

sorry mate I am twittering on a bit


slow progress is a result , welcome and keep us posted

[pbob10]

Originally Posted by BeccaP

Hi Bob, No, it isn't just you. I have the brain moving around/jarring in my head as well. I'm five months into the pcs. If I'm barefoot I walk on the balls of my feet to decrease the jarring. It's not as bad when I'm wearing shoes with some padding. Same problem when I go over a bump in a car or move my head too much. I sure hope it will go away eventually! I'm sure one of the more experienced posters can help with that question. Good Luck!

Hi Becca. Although the sensation is and has been very prominent when I make sudden movements, I don't recall noticing it when walking. I feel anyone's pain who's experienced this but no doubt some people have more severe symptoms than me. Good luck to you too.

Originally Posted by Mark in Idaho

pbob,

You are experiencing a common symptom of PCS. You have reached that threshold where you brain has become sensitive to movement. Many of us experience the same symptom.

We may struggle with shaking our head "no" or have problems riding in a car on a rough road.

Some will have a difficulty jogging due to the impact of the foot plants.

The only way we have learned to deal with this is to stop doing it.

No more head shaking. This will take some serious discipline. I've done it. I know how difficult it is.

Riding in a car on a rough road can be better tolerated if you sit forward with your shoulders away from the seat back.

A back that is rolled forward, especially at the shoulders will absorb far more vertical impact than a erect one. I use this shoulders forward posture to snow ski. Without it, I would never be able to tolerate the bumps om a ski run.

Good shoes help, especially if you do any running/jogging. A good way to sense the impacts of a foot plant is to try some foam ear plugs. This will magnify the impact to your brain. By changing your foot plant (the way your foot contacts the ground), you can reduce this impact. A good running foot plant might start with an outside heal contact with a push off from the big toe. Try different shoes.

The foam ear plugs should be with you ate all times. Then, when you unexpectedly encounter a noisy environment, you can put them in. The yellow cylindrical foam plugs work best. Avoid the ones with a string connecting them. The string conducts noise to the ear plug.

They can be easily reused. Turn on the bath sink faucet and let if get hot. Leave the plugs in the stream of the flow and it will tumble them. They will come clean. Or you can leave them in the pocket of a pair of pants. This works too. LOL

Hope this helps.

Don't be afraid to ask us about your struggles. Likely, many of us have already experienced the same thing.

Thanks for the advice Mark. In terms of sound I've only had an issue when someone bangs cutlery which I can't really predict lol. Other than that the only time I've noticed the sensitivity is at a sport event with a loud crowd, this really sent my ears wild but wearing a wooly hat and pulling it over my ears seemed to filter out enough to stop any discomfort. I'll get some plugs too now.

Originally Posted by mhr4

Bob,

Most likely you have damaged your vestibular - visual - cerebellum systems. These all work in concert to tell your brain and body where it is at all times in the universe. When this gets disrupted, your brain has no idea what is going on when you are moving. So, a small jostle to your head or extremely light bump will set off symptoms because your brain has no way of gauging the severity of the jostle or bump - it thinks that all movement is severe and sets off the inflammatory cascade. Depending on how much damage was done, you can actually rehab this. I am currently undergoing vestibular/cerebellum rehab for this where I have to slowly desensitize my brain back to "normal." It is a very slow and somewhat painful process since it sets off symptoms every time I do it, but so far I have seen improvements. If interested in doing this therapy, google search: "vestibular rehab, brain injury" and you'll find someone in your area to go to. You really don't need to go to an E.N.T. first because a lot of physical therapists now have doctorate degrees and can prescribe therapy. This will save you some money going this way.

Thanks for the reply. I have googled that but it seems to mainly refer to dizziness, I guess our problems can be treated similarly?

I'm sure I've read a post in another thread where someone said the inflammatory cascade causes further damage, is this the case? Am I doing damage every time I shake my head? If I am that's worrying, I've been doing it for a year When you say 'set off symptoms' what are you referring to? I don't think shaking my head and feeling this sensation has ever invoked any other symptoms.

Do you find that it's at its worst when you wake up in the morning and it tapers off throughout the day? It's like my brain has to desensitise itself every day and after several hours of being awake I can shake my head and things feel nice and rigid (lol). But if I sleep for a long time or I'm tired throughout the day I don't think it tapers off as much, so maybe fatigue impacts the ability of the brain to desensitise... or something.

Originally Posted by Mark in Idaho

**

The least expensive way to get to a good vestibular therapist would likely be a hearing and balance center (hearing aid center). I have been assessed for this kind of therapy, too.

Those with the most profit to gain will push it the most. Those without a big profit bias will often give you the best referrals. A hearing aid center that works with balance issues can do the basic diagnostics to determine if their simpler therapies will help or if you should see a more specialized therapist.

Good luck with your search.

I see, so you think a hearing aid center would be worth visiting for inital diagnoses, in order to save myself from being ripped off my a profit driven company?

Originally Posted by vini

Hi BOB

London calling its a bit tricky getting any kind of help from the NHS unless you have been diagnosed with a brain injury and thank your lucky stars you have only got the pcs

thats not to say its not a big issue for you, all you will hear from even specialists is rest and time

, there are some meds that people say have helped, but how you would get prescribed them on the NHS, I know not ,its good you feel you have improved, I wish I could say the same over 2 yrs out, but its all a mater of degrees with this

all I can suggest is omega 3/6 supplements keep hydrated try to do more activity but not to the point of head pain this maybe only be opening old wounds so to speak

I think PCS is more likely to set in if rest is not got directly after the injury

this is also been proven with more serious injury in the form of what is termed second insult injury the body basically destroys surrounding structures in the brain the rise in antibody's of certain type have been observed doing this,

but this is only in the early stages, well I think it can happen later with white matter scarring too but thats just my opinion ?

sorry mate I am twittering on a bit


slow progress is a result , welcome and keep us posted

Hi Vini. I'm interested as to why you think PCS is more likely if the individual doesn't rest immediately after the injury? I basically curled up and did nothing for a few weeks after the injury. Due to feeling absolutely fine and being ignorant to the damage I'd actually suffered, I did go out and consume alcohol a few times towards the end of the first month, but nothing wild and no bumps or falls.

The PCS coincedentally started right after I attained some information about the severity of how my injury happened and how long I was unconcious for, which made me really stressed out and anxious. I even considered the possibility of this triggering it off, but it may just be coincidental.