Post Concussion Syndrome -- thoughts on alternative therapy
 

Hi --

I am suffering with PCS after taking a fall and banging my head on the ice last December (8.5 months ago). It has been, at times, debilating and I am beginning to feel like this may never go away. I had a couple of CT scans and an MRI which have been negative. I have seen a chiropractor, a cranialsacral therapist and physical therapist, and nothing seems to help. I live in Boston and went to the head trauma center at MGH, and they basically told me the only recourse for PCS is to wait it out.

I wake every day with a head-throbbing (from the point of impact -- back of my head), stiffness in my shoulders and back, and nausea. On a good day the nausea goes away after a few hours, and on bad days it is coupled with an overall fogginess that with me all day. And, to add insult to injury, I am no longer able to tolerate the smell of coffee, even if it's just someone carrying a cup into the room.

At the six month mark, I had a brief respite of feeling much, much better. For about four weeks, I felt like I got my life back. I started to work out a little, and the neurologist put me in physical trherapy to get some strength in my upper back and electrical stim for my tight neck. After a couple of weeks (and yes, probably overdoing it with projects at home after six months on hold....) the symptoms returned, with even greater intensity. Today I felt so miserable (could barely hold up my head, throbbing "heavy" head and nausea) I went into the ER. They did another CT scan, and a spinal tap to check pressue on the brain and to rule out other conditions. Both were negative.

So, a couple of questions for this group....Does anyone see any (even mild) activities that contribute to a relapse? Also, has anyone tried alternative therapies (accupuncture. osteopathic doctors) with any success? I am currently not on any meds execpt Ibuproben.

I have tried to have a good attitude about this so far, but I will admit that I am starting to panic that this is going to be my life. I don't go out at night, have not worked out in months (even riding a bike seems daunting) don't drink and basically live pretty simply. I have two young children and it is all I can do to keep the home fires burning. My spouse is wonderful and jumps in 200% if I am having a rough day. I'm just hoping for a light at the end of the tunnel.

Thanks for your feedback.

Hi goodscout, I'm so sorry that you have to go through this PCS. There is light at the end of the tunnel! I suffered from PCS after a bike vs. car accident in May of 07 and am doing much better now. I had similar symtoms as you with the morning headaches and fogginess and some nausea. Last Dec. my neurologist put me on a low dose of Elavil and that helped a lot with headaches. Then in April I found out that I had a misaligned vertebra in my neck and my family doctor sent me to a chiropractor. He did therapy with electrical stimulation and ultasound to losen up the muscles in my upper back and neck. I have to say I was skeptical, but the chiropractor has helped me tremendeously. I am still going ever two weeks. I started to ride my bike again this May and at first some of the PCS symtoms returned for a few days. Now I can ride for 1 1/2 - 2 hours without getting dizzy or foggy. I still get some headpain and tightness and use ice on my neck and do some stretching exercises. I also continue to take 10 mg. of the Elavil.

Hope this helps and you will get better soon.

I just remembered some advice from my chiropractor, he told me to get enough potassium and magnesium in my diet and to eat a small snack (like a banana) before going to bed at night. Muscles can get depleated of nutrients overnight and tighten adding to the morning headaches and heaviness. Drinking sports drinks might help too.

hi there my husband has suffered from pcs for over a year now and one day is never the same as the next .We are in the uk and he goes to a rehab centre one day a week for people with brain injury and they have advised him to take vitamins fish oils etc that are particularly good for the brain so if you have access to the internet you could look them up , my husband isnt able to work ,do you work ?take care ali

magnesium and cq-10! my neurologist at U of Pitt Medical Center put me on them and said that for some people they can make a huge difference. i didn't notice it much but she said they don't work for everyone.

Goodscout: I want to address your question of alternate therapies. I won't go into my teenage daughter's history -- you can look it up, if you want. What helped her were: (1) acupuncture; (2) homeopathy/osteopathy (we found a guy in NY who practices both); and (3) Effexor (she started on Elavil). While the meds are classified as antidepressants, the use of low doses in PCS is to help re-establish nerve pathways. Now, after 2 1/2 loooooooong years she is practically symptom free. The hardest part is maintaing a positive attitude. It's so difficult when you are consumed by misery and despair. But know that time is a great healer, and while you may never be back to the way you were before the accident, you will learn what exacerbates your symptoms and make the appropriate modifications in your lifestyle. Good luck to you.

Hi, I'm Donna

And I was in physical therapy from the very beginning of my PCS.
Reason being I had a stiff non moving neck on the right side.

But they did lots of different things to try and get it to move.
But they also thought about the pain I was in. They used
hot packs, with hot towels. Or at times we used the cold packs too.

Sometimes we used ultrasound and then sometimes we had just
a type of massage because I was just aching and couldn't take
the therapy.

But I have been having issues with a neck bulge for about 4 months.

And physical therapy didn't work, so my therapist suggested a very
good massage therapist. Who happens to be in my price range.

And honestly, I can say she is doing wonders for my neck, headaches.
And I have rocks at times for my legs and feet.

She has just started to do massages for them too.

And I can walk without having to worry about falling. Its a big thing.

Good luck, let me know through pm if I can help.

Donna

I wake every morning with pretty bad stiffness in my neck and upper back and sometimes in the night too. I've always put it down to stress as I would get the same thing before my accident at times. I stress terribly over the thought of there being little bits of damage in my brain (thanks to all these theories about PCS) and the prospect of being permanently mentally unwell. If the problem is in your neck and you experience stiffness and fogginess, that sounds much more like stress/spinal issues than PCS (whatever PCS is!!).

Hi..sorry for your pain! I practice in headache medicine and there are a couple of things I think are going on..you have moved into the chronic headache phase of post concussive syndrome since you are more than six months out..but the good news is that the sooner you get treatment the quicker the headaches will come under control. The longer you wait the more difficult it becomes..people who have this headache for a few years are harder to treat.

So what to do? Find a neurologist who specializes in headaches..until you get in ask your doctor to put you on Elavil..low dose 10mg at night an hour before bed. this is the drug of choice for post concussion headache AND treats neck pain. You might have to increase the dose slowly and give it 90 days to have the full benefit. I suspect you have some aspect of whiplash to the neck going on..start physical therapy at the same time and get off the ibuprofen. This causing analgesic rebound headache syndrome.

Over time, chronic pain results in low level nausea.

Alternative methods unfortunately don't work too well for this type of headache..medication, regular sleep (go to bed and get up same time every day) and rest is the best bet.


Good luck,
Mary Kay

Thanks to everyone for your thoughtful and insightful responses. If seems like there is some common threads and I will move forward on these. I will say that I never was a part of an on-line forum before, and this has been a really heartening. I don't know anyone that this experience with a concussion, and I was beginning to feel so lonely (and a little nuts!). Thanks again.

Goodscout

thank you for posting this lord it helps so much i heard antidepressants did not help

GoodScout

When I suffered with PCS, I found Taijiquan (aka Tai Chi) tremendously helpful.

Tai Chi is about relaxed movement that focuses on correcting the posture and keeping the body healthy.

I found doing a Tai Chi form (a series of set movements) tremendously helpful when I got headaches due to PCS.

My own thinking is that Tai Chi helps correct postural defects we build up over a life time (e.g. sitting in front of a computer 8 hours a day, 5 days a week!) by emphasizing strong overall body posture (including the spine, neck and head) with breathing and relaxed movement.

I know it is only anecdotal ,but it really did help me.

I would also suggest looking at other movement systems that help correct posture and are good for physical and mental health, such as Pilates and Yoga.

The Chiropractor in my area actually refers people to Pilates instructors as part of their treatment for various problems.

I also have a book on Iyengar Yoga where the author and founder of the system (BKS Iyengar) has a series of excercises to help with various ailments, including head pains.

There have been a ton of studies to show the health benefits of Yoga, Pilates and Tai Chi. I would look in to those as a alternative method of self help.

Good Luck!

we do tchi chi
 

hi
we do tchi chi at headway a uk head injury charity day center I go to, it dose have its benefits I have practiced Kundalini Yoga for many years but find it hard to stay focused now but, I am getting there , if headway approve it as part of there rehab program they must think its useful

thanks:Good-Post:

Hello again everyone, sorry for going on about HBOT but I felt compelled to post these findings. Neurological benefits are being proved more and more.

hbot.com/node/130

armytimes.com/news/2009/03/military_mentalhealth_030309w/

hbot.com/Veteran-Testimony

Sorry I can't post clickable links yet.

Clearly most of us don't have nearly as serious PCS/PTSD as the brave US troops. Maybe someone like me can get lots of neuro-function back with this therapy?

I understand the nighmare you're going through. I suffered a fall and a 2 inch laceration to the side of my head on 01/01, shortly afterwards I started feeling depressed, differerent (it's weird), slower, unemotional, mild tinnitus whic has lessen a bit to some degree, sleep problems, undecisiveness. Been told that progression takes time. I've had accupunture which didn't help, reflexology whic has helped to some point and gingko, vitamin b and zinc. Have you heard of 'Scenar' it's new to the Uk, which was founded in Russia in the 1980's which is a hand held device which treats the nervous system in healing the body and it's vital organs. It's costly but I'm tempted to check it out, it's also called 'Cosmodic Therapy'.

pcs
 

Hi PCSMOM,

I read what you wrote about your daughters pcs and it is so familiar. I am so frustrated. My daughter is 13 and received a concussion playing soccer. It has been over a month and we have tried a lot of things, but nothing has helped. I have tried the chiropractor and now I am thinking of accupuncture. I don't know what else to do. I thought about medication but she is so young. I am sorry for your daughter but it was nice to hear that someone else is having this problem, because I thought how can this possibly be going on for this long.

Thank you,
cari108

Rough coughings caused a PCS relapse!
 

I am panic and asking all members (starting with Goodscout and all members who so kindly responding to Goodscout) for an urgent advice: I have been having PCS since an accident to the head on June 12, 2008. As most of you, I am extremely worried and depressed thinking I may stuck with this for the rest of my life, or I may never heal, and sometimes the occasional relapses really scared me out. But 2 days ago, I have this rough coughing and I could not help it trying to get the phlegm off my lungs. Unfortunately, at one point, I could feel the rough cough got to my brain, really "touched" my injured brain, which I have been avoiding to do for fearing of relapse. Well, I have been dizzy for 2 days, and today the 3rd day, I am more dizzy than the last 2 days, and very very nauseous, even during a quick phone conversation, I felt so nauseous!!! Could this be a bad thing? Should I go to emergency room for a cat scan to see if I may have broken any blood vessel like aneurysm? As I said, I am so scared of this nauseous feeling and the dizziness. It felt like when I first had the accident. Please help me, thank you soooo much for your kind advice!

A new PCS member Needa Your Advice Asap!!!
 

Dear Goodscout, I thank GOd and thank you and thank all of you for this web site forum. I have PCS for almost a year now but kept having relapses every time I did something that "touches" my brain, like a little trotting for 30 seconds, or talk loud or talk a little more than a few sentences etc. all the weird things. But 2 days ago, I coughed real hard to get the phlegm off my lungs, I inadvertently "hurt" my brain (the cough was so rough and hard, I felt it got to my brain, I felt the vibration and the feeling it hurts the head. Now I am very dizzy with bad nausea constantly, I am so scared that may be I may have caused some "bleeding" in my brain or made the brain "loose" somehow? Could this happen? Should I go to ER? I had 2 CT scan during my last year (one after a relapse) but they were negative, but they were not caused by rough coughing. I have been feeling really bad today. Thank you for any help anyone can provide. I have been so miserable, depressed, desperate, hopeless and panic, all the things you all mentioned. I also have constant ringing in my head (24/7) but I have not seen any of you mentioning. Thank you so much for any word of advice from you all! Margle

Cough/dizziness
 

Hi Margie

I am wondering if your dizziness could be a problem with your ears. Last year I had a bad chest infection and was coughing that badly that I tore my rib cartilage. Anyway - after a coughing fit and blowing my nose something popped in my ears and before I knew it I was flat on my back on the floor with incredibly bad dizziness - needless to say it came right and I was very careful about sitting down or lying down before coughing or blowing my nose for some time afterwards.

You will note that there are several of us on this site who have had PCS for many years - mine is coming up 8 years and it takes very little to concuss me again - usually very minor bumps to the head or whip lash like jolts. I can't jog as that is too jerky but I do light cardio stretching at the gym and can walk approx 6 miles in one go. Anything further than the 6 miles brings on migraine type headaches and vomitting.

I have only developed the "ringing" in my ears in the last year. I cope by avoiding loud noise of any kind when I can, bright lights, as much stress as possible and make sure that I rest before I am tired. I can no longer work because I had a major melt down - I had a nasty few years - divorce, friends dying etc and basically had 1 disaster too many. I remind myself that in my good times I can still think, and reason etc better than average!!

When I am tired I have similar symptons to you - when I am very very tired I literally fall over. I learnt the hard way to rest BEFORE my energy was zero - it took me years to be kind to myself.

My CT and MRI were ok but my QEEG showed that I now have a learning disability etc. Unfortunately the Nuero psychs testing is always ok and above average but they don't get it that after the testing my brain feels like it wants to explode and I have to sleep which is nearly always impossible when you are over tired. My brain also has the loose feeling and my head feels like it is not attached to my spine properly. Apparently that is normal - so I have been told - ha ha - normal I think for TBI cases.

I haven't posted for a while as I have been feeling particulary grotty and didn't want to infict myself and woes on anybody. But I do hope I have made you feel better and know that there are a lot of us around!!

Lynlee

Thank you for your advice on my "coughing relapse"!
 

-----------------------------------------------------------------------
Dear Lynlee,

I cannot THANK YOU ENOUGH for your kind and prompt reply which helps put my mind at ease immediately!!!

After a very restless night, I woke up this morning at first no dizziness while lying down, but as soon as I got up, ate a light breakfast and moved around very slowly and very little, now the dizziness is back just as intense as yesterday (the 24/7 ringing in the head is louder), but I tried to rest in bed, thus not as nauseous as yesterday (but one movement like getting up to go to the bathroom brings it all back!). My head is also feeling tensed, and the tenseness around the temples and the eyes.

Your explanations made so much sense for me now. It's incredible that I am going through the same things you and so many other PCS sufferers do. Like you, I now can walk (but very slowly only) 3 miles per shot (no more trotting for even 1 second, let alone jogging -- which I used to do too), but if I overdo it, then I pay a price. May be this is the price that I paid for the long walking I did yesterday while having this relapse (which I hope it is just a relapse, nothing worse, Lynlee ??? I am praying!). I had my ears checked out after the last dizziness bout due to an earlier relapse (before this "coughing" incident) but it was all negative. With your explanations of every aspect that you experienced, I am learning from you so much about all the relapses that I have suffered and now learned to take care of myself to prevent a next relapse to the best of my ability. Like you, I have not been able to work since the day of the accident. I have too much headache and could not concentrate for more than 10, 15 minutes without a headache and a drain of all energy. I had been mostly in bed for the first 6, 7 months. I will also learn to do mild CARDIO STRETCHING as you mentioned of doing. I THANK YOU ENORMOUSLY for your kind help!!!

MAY I ASK FOR ONE MORE HELP FROM YOU and FROM ANYONE WHO CAN HELP, URGENTLY?: I don't think my neurologist is experienced with BTI/PCS. I live in Northern New Jersey, COULD ANYONE PLEASE REFER ME TO A BTI/PCS-EXPERIENCED NEUROLOGIST anywhere in the NorthEast surrounding New Jersey? My doctor so far has not pointed me to any comfort zone to understand or how to take care of my PCS at all! He shows so much confusion and baffle like me each time I see him (every 2 months average). He does not appoint me to physical therapy although I asked, nor any testing like QEEG or Neuro Pschy. like you described, nor prescribing me any Anti-depressant, nor mentioning Migraine, nor telling what TO DO OR NOT TO DO to avoid A RELAPSE ... I NEED TO SEE A PCS-EXPERIENCED DOCTOR SO BADLY! HOPE YOU ALL CAN HELP ME WITH A REFERRAL OR HOW/WHERE TO START FINDING ONE! THANK YOU SO MUCH IN ADVANCE FOR ANY REFERRAL!!!

Thank you sooooo much again Lynlee, you help me seeing my illness with a new light and more preparation for a longer term stand. This forum is the best thing ever happened to me since the fateful date 6/12/08 in my life! Needless to say, like many of you, I dared not plan a long living like my previous generation of relatives still living at 60, 70, 80, 90 and beyond. I am now living 1 day at a time. A good day for me would be a day without the relapse (so today is definitely NOT a good day!).

I am still praying that I did not cause a tear in my brain due to the coughing!?! (The pain in the head, the severe dizziness and the nausea scare me!!!)

Have a good day Lynlee and Best of luck to you and us all!
margle

Hi, I just wanted to know What is the difference between a "quick reply" and a "REPLY". I replied (using "REPLY" button) to Lynlee (LUCY)'s KIND message to me above but I guess it will take a while to be posted after being edited by the board. Meanwhile, I just wanted Lynlee (LUCY) to know that I ENORMOUSLY APPRECIATED her KINDNESS and that my long APPRECIATION NOTE is coming :-)!!!

Does anyone take Lexapro or Lyrica for PCS headache/migraine?
 

Hi, I have a question about Elavil: Many of you talked highly about taking Elavil and in case of PCSMom, it even worked well for her daughter. Someone talked about Effexor. Here in the US, some doctor told me to take Lexapro for the PCS Migraine. My own Neurologist tried to give me Lyrica. I have not taken either one bec. I read about Lyrica's side effects and am scared of them. Does anyone have any experience taking Lexapro or Lyrica for PCS headache? I am looking forward to hear your experience and thoughts on Lexapro or Lyrica vs. Elavil Vs. Effexor. Thank you so much in advance! Margie

Meds
 

Effexor and Lexapro are anti-depresants of the SSRI variety. Lyrica is an anti-convulsant for epilepsy and also used to treat nerve pain. Elavil is a tri-cyclic anti-depressant that also can help with the migraines. PCS patients have had success with small doses (10 mg) of Elavil.

The SSRI's take about two weeks to get therapeutic. They also have withdrawal problems.

The Lyrica would be prescribed as Off Label, not what is was approved for.

The Elavil would probably be the best one to try.

You might first see if you can get referred to a Rehabilitation Medicine or Physical Medicine doctor who has experience with PCS and MTBI. Most neurologists are not so great at PCS and MTBI. Look in the phone book under physician, Rehab Medicine or Physical Medicine.

New York University Medical Center has a good MTBI department.

Also, check with Brain Injury Association New Jersey at www.BIANJ.ORG or call their help line at 800-669-4323.

Do not take NO for an answer. Make a stink if you have too. You can always blame it on your PCS. It can be very frustrating getting good PCS help.

My best to you as you reach out for help.

Thank Your Mark in Idaho
 

Dear Mark,

I THANK YOU SOOOOO MUCH for your very kind and thorough response to all my questions about my PCS!!! Also Thank you so much for giving me directions where to re-start my healing process by searching for a good and helpful Doctor and therapies in the right directions! I have lost the whole year not knowing where to go, so frustrated with my neurologist not knowing how to help me, giving me very strong anti-inflammatory drug that now hurts my stomach and the GP who has no clue what is wrong with me. Oh my God, reading helps from you and LUCY (Lynlee) on this forum, I wanted to cry for the past 3 days! Why didn't I know to look up for this web site before? Well, now I found you All and this forum (better late than never), I thank God and thank you ALL for ALL YOUR KIND and WONDERFUL share of experiences and advice. I will start my searching for the right help TODAY. I will start with NYU's MTBI department.

How can I THANK YOU enough? THANK YOU also for your best wishes because I SOOOO NEED THEM!!!! And Best of luck to you too Mark!

VERY GRATEFUL MARGIE

Margie
 

Hi, I didn't get any decent help until I found a GP that understood head injury.

I hit my head 2x within 6 weeks in 2001. I kept trying to work full time as the A&E doctor kept telling me "that he knew about people like me because I used to work for an insurance company" . I thought I was going crazy and in the end my employer spoke to a friend of his who had been a doctor in the local hospital head injury unit - who then arranged for me to see Dorothy Gronwell - you will find reference to her in other threads. Dorothy then tested me and put me in touch with the local Brain Injury Assn who then referred me to my current GP - who has been wonderful as he had PCS from playing rugby when he was at Uni.

Our Accident Compensation system takes over payment and arranges your recovery - supposedly. I have learnt that if you don't like what you are told keep looking for another specialist even if you have to fund it yourself. I was constantly being told that I was achieving great results in the psych testing and therefore there was nothing wrong. The hardest part to cope with is not being able to see any physical evidence of injury when you know that your brain is not functioning as it should be and was.

I went to Australia for my QEEG which does show evidence, but unfortunately the report is not rated here!!!! I now have a psychiatrist who I trust - Dorothy Gronwell died several years ago - I was able to trust her, but the psychologists that I have been sent to have been down right rude and have even asked why I know so much about head injury - can you imagine!!!

Really all I am now wanting is to be able to stay awake all day - to be rid of the tiredness - I think that I could cope with the rest of it. You also need to retain your sense of humour - I sure find some strange things in the refridgerator!

So you will need to be pushy even stroppy in finding the specialist that you can trust who has knowledge of head injury. If you can find the right one they can probably recommend other specialists who can help you. You will notice that the best usually only deal with the best.

I am now taking the following:

Efexor 3x 75mg (for depression)
Hyzaar 1x 12.5mg (for blood pressure - as it has gone crazy post accident)
Nortriptyine 3x 10mg (for relaxing muscles at night)
Zopiclone 1x 7.5 (for sleeping - as can stay awake for days)

I have also come across res-v plus - a dietary supplement - have a look at www.abouthealth.co.nz. I have taken these for about 10 days and am thinking that I MIGHT be feeling a little more energy- the main ingredient is resveratrol.

Good luck and let us know how you get on!

Lynlee

Dear Lynlee,
THANK YOU SOOOO MUCH for providing me more information on PCS, the meds (which I will bring up to my neurologist in my next visit with him) and share with me more of your experience that are so similar to mine, as if I am the one who write them!!! It is very comforting for me to find out this whole host of communities suffering this most unfortunate health issue like me! I empathize with you and Mark SO MUCH for your sufferings as well! I WISH YOU MUCH continued success in your recovery as well Lynlee!

You are so right, a lot of time people think I am crazy too when I described to them my sufferings and symptoms, especially my gp, who is rude, narrow minded, short temper with me and always downplay my health complaints/symptoms (unfortunately I have not been able to find anyone to replace him yet, but I am continuing my search). He gave me the feeling that I made things up or I don't know how I feel! My neurologist seemed frustrated with me at times, especially when he could not explain to me why i feel so much pain on one side of my head and then it switched to the other side on another bad day!!! A second neurologist told me it's migraine and told me to go back to my gp to ask for prescription of Lexapro, but I have not done that since I am still having other symptoms that were not explained.

In terms of searching for a right doctor, just like Mark in Idaho had warned me, it has been frustrating for me to find a doctor who has experience with PCS around where I live. In the past 2 days, I called NYU HOsp, NY Columbia Presbyterian Hosp, BIANJ.org, and was given a few names, but when I called to inquire about their specialization in head injury or PCS, it was not much. Even funnier in one case, the woman gave me the name of a supposedly neurologist, but it was a lawyer instead (there is no such neurologist by that name at that location!) Isn't that funny? BUT I will continue my search as you and Mark in Idaho encourage and advise me, I won't stop my search.

But currently, I am still quite miserable with my latest relapse that occurred 7 days ago as I mentioned in an earlier posting (after the violent coughing), I can ONLY lie down and do nothing to feel ok! Any movement that affects the head, from physical moving gently (the head) from one side to another, or a gentle nod or a gentle shake, or talk a little, even a short sentence, or a thinking or a frustration feeling, or writing this note with intensity and anxiety, then come pain in the head, then dizziness and nausea, down to the eyes, including the 24/7 ringing in the head getting a little louder. A simple movement of head from left to right or vice versa (very small degree) even while resting on the pillow caused dizziness! I just took a few seconds rest, sit very still, leave eyeball resting, then feel better and can continue writing, isn't that weird? I never had a relapse this bad before ... I wondered if I have concussed myself again by that violent cough, or whether I had created a minor tear in blood vessels in the brain causing a slow subdural bleeding(?) I have been refraining myself from asking my current neurologist to send me for another CT scan although I am very tempting to do.

I will certainly keep you all posted with any new development in my recovery searching effort that I will have. Again, I feel so comforted by you and Mark in Idaho, for consoling me and giving me very very very valuable advice and directions to follow. I cannot express enough my appreciation and gratefulness to you... Will keep you posted again soon. Please take care and have a great day meanwhile Lynlee :)! margie

Margie,
Mark gave you wonderful advice.


You don't say if you have a ride or not.
Can you get to Philly? There are trains.. These hospitals can give you advice!
(I have a friend up by you, who has MS, she comes down to my doctor, because there simply Are None up there!)

If you can, get someone to drive you, call either Jefferson,
1.800.JEFF.NOW

http://www.jeffersonhospital.org/

Or,

University of Pennsylvania..
1.800.789.PENN

http://pennhealth.com/hup/


A Good University Hospital is you best bet. They have all the latest diagnostic equipment, THE BEST DOCTORS, etc.

Be sure to find the best doctor you can. Explain your circumstances.
Like Mark said,
Make Noise!
Get where you need to go.
Stop fooling around with country doctors!

This is your Brain!

Hope this helps. :hug:

Pete
Asb

Margie,
here's some more links.

This is U Of Penn's brain injury link:

http://pennhealth.com/neuro/services/brain_injury.html


This is Jefferson's.

http://content.jeffersonhospital.org...?pageid=P00785


I don't know anything about your insurance, or situation.
But, see if you can get a ride to a hospital like this!
:hug:

Pete
Asb

Dear Pete,
THANK YOU SOOOO MUCH for these very uplifting leads!!! Sounds great to me. I will start looking into these links and call up these hospitals asap! Hopefully I can get there soon! (I can get to Philly by train or get someone to drive me no problem.) I thank you sooooo much again for your prompt help! I like your term "country doctors", that is exactly my impression of these doctors where I live. I will certainly keep you all posted with any new development. Thank you very much again Pete. Best regards, Margie

hi all tai chi
 

hi all

thought I would tack this on here as its came up on another thead
at headway a brain injury support charity I attend we do one hour of tai chi in the sitting position as many of us have mobility problems I think it can help on many levels spacial awareness being one ,but also if like me and with more severe injury you can loss your ability to follow sequences it can help with this also if headway think it of use it may well be useful

http://www.chebucto.ns.ca/Philosophy/Taichi/what.html

Hi I am new to this site,

actually the only reason I signed up is because i saw your thread. Im not sure if it has been mentioned here before as I said I am new but I have been getting neurofeedback treatment for my PCS and it has been working. It takes a few sessions but after about ten or twenty you should start to feel much better. I had a mild case of PCS after a wakeboarding accident and it has helped me overcome most of the symptoms. The therapy is called EEG Neurofeedback. I was just skimming through the pages and saw your thread and thaught you needed to know about this treatment.

Good luck

Peter

EEG Neurofeedback can be helpful. It is hard to get insurance to pay for it and at $60 to $120 per hour or session, it can get expensive. Often, it takes 15 to 20 sessions to get real lasting benefits.

It works by training your mind to focus on using a different part of the brain. In some cases, this helps the brain rewire to a better area, usually adjacent to the area that is malfunctioning. This is called neuro-plasticity. In others, it just strengthens the other parts of the brain so they work harder.

Some times, our brains get lazy due to lack of use and do not have a balance that can allow best functioning. It is like offering a task to two people. The busy and energetic one jumps at the job while the lazy one lets the energetic one take the task. Over time, the lazy one gets even lazier.

If the PCS subject has such a lazy area in his brain, the neuro-feedback can help him exercise the lazy area so it picks up more of the mental workload.

Neuro-plasticity is more like having four workers who do different tasks. Two do yard work weekly, one washes windows once a month and one sweeps the driveway every two weeks. If the yard workers get injured, the task of yard work gets directed to the window washer, especially since window washing is not a weekly need. The window washers task can be handled by the driveway sweeper on one of his weeks off and he can help with the yard work on the other week.

The free time of the other two workers got put to use to make up for the injured yard workers.

This plasticity is most notable with someone who has gone blind. The sensory neurons that used to process visual information now are divided and process sound made by his stick and touch of his fingers on the braile pages.

I use this system to listen and think. I often have to close my eyes to concentrate and think or to listen intently to someone as they speak. The brain makes this adaptation quickly, often within a few days.

In my case, both auditory and visual neurons are damaged. When I close my eyes, I have enough visual neurons available to help the auditory neurons do a more thorough job.

I hope this is making sense.

At rehab today, both therapists mentioned being confused by my difficulties because of my high level of functioning. I may be able to accomplish a vast amount of tasks, but my memory is still almost useless and I can get overwhelmed easily.

Neurofeedback and other treatments
 

Hi Everyone,

I am a big proponent of neurofeedback for MTBI (and in some cases, TBI). Mark went into some very good detail on the subject, but, if I may indulge myself, more is needed.

Your brain operates on different frequency levels, basically ranging from 0 - 60 Hz (it goes beyond 60, but thus far the relevant "cognitive" frequencies scientists have found are between 0-60 Hz). These have been grouped into frequency band classifications.
1. Delta Range
0-5 Hz range. The slowest frequency band. Expressed when we are
sleeping or in areas where the brain has been damaged.
2. Theta Range
5-8 Hz range. Still a very slow frequency band. Expressed when we
are first waking up from sleeping, right before you fall asleep,
daydreaming, not focused but awake. This is most prevalent in the
ADD group and in some brain injured people.
5. Alpha Range
8-12 Hz range. This is characteristic of an awake but idol individual.
Someone who is alert, but not doing anything. When you meditate,
this range is expressed. Peak alpha frequency, which is from 10-12
Hz, is associated with high intelligence. People with brain injuries
have a hard time producing this and training often is focused on this
frequency.
6. Beta Range
13-30 Hz. This is the every day frequency band that allows us to
function as human beings. Listening, talking, reading, thinking, etc.
are all done in this frequency range. Actually, too much of this can
cause agitation, anxiety, ruminating, stiff thinking, OCD, etc. Brain
inured patients will often have high levels of delta in one area, and
high levels of beta in another to compensate for the delta.

So, with neurofeedback, usually an assessment is performed to see where your brain is out of whack. Then, the you focus your training parameters on normalizing those EEG wavelenghts that are either too high or too low.

The research that was done on TBI patients with neurofeedback back when dinosaurs roamed the earth found that roughly 68% of the subjects being tested reported getting a 70% improvement in symptoms. This, in my opinion, would now be considered conservative because the technology has come a long way since those studies were done.

Neurofeedback can be very difficult for someone with PCS because you basically have to train around the dead neurons to get the functional ones to re organize and often requires 100+ sessions. However, it isn't impossible. Also, Mark is right in that it can get very expensive if you go to a practitioner. I found a solution to this by buying my own equipment and software. There is a guy who specializes helping out home trainers and he is more than willing to get you anything you need in the areas of equipment, trainint, software, etc. I don't benefit at all if you buy anything from him, so this isn't an endorsement. His name is Pete VanDueesen, and his website is: brain trainer . com. There are also many different forms of neurofeedback equipment you can buy, so it is definitely worth it to put in your research before you purchase. The three that have been extremely effective for brain injury rehab are: 1. The Proshi BB. 2. LENS. 3. 4 channel Z score training. I'll spare you the details on them. You can google them for more info. Also, don't let any neurofeedback practioner/therapist tell you that the technology is too complicate to figure out. That is a bunch of rubbish. It will require some training, but nothing a dvd or online practicum can't teach you. All in all, you can get set up with a basic unit, software and training for around $1500 and you can train on it as much as you want.

There are also a few medications that aren't prescribed in the U.S. which have been used in Europe and Asia since 1970 to treat brain injury. These two are Oxiracitum and Cerebrolysin. They both have undergone tons of research studies and have proven very effective in treating head injuries. They also have neuroprotective properties that are supposed to protect your brain from further injuries, although this is still in debate. It won't prevent you getting a concussion, it just helps minimize the damage occurred. Those of you who have had multiple concussions may want to seriously consider getting on one of these. Although, you would have to import it from Europe, so it may or may not be affordable for you. Just google it and you'll find tons of info on it.

Also, Dr. Daniel Amen has a wonderful website on what supplements and diet you should be on with a brain injury. His office offers free consultations and what stuff you should get - with the idea that you will buy it from them. But either way, it is good info to know. So, it is definitely worth giving them a call.

Last, but certainly not least, is Stem Cell Therapy. With the lift on the research funding ban imposed by President Bush, it is only a matter of 5 years before this becomes a viable option for brain rehabilitation.

Neuro-opthmalic rehabilitation
 

[QUOTE=vini;515192]hi all

thought I would tack this on here as its came up on another thead
at headway a brain injury support charity I attend we do one hour of tai chi in the sitting position as many of us have mobility problems I think it can help on many levels spacial awareness being one ,but also if like me and with more severe injury you can loss your ability to follow sequences it can help with this also if headway think it of use it may well be useful


Hi Vinny,

If you haven't already, I would also look into doing some neuro-opthmalic rehabilitation, or vision therapy. There is a syndrome called "visual midline shift syndrome" that is extremely common in people with head injuries. Sounds like you have some spatial awareness problems, which is a classic symptom of this syndrome. I have this and a classic symptom I display is that I'm always tilting my body to one side, and I have to prop my head up with my arm when I'm sitting. With the use of yoked and prism glasses, you can retrain your brain (at least that is the idea). I begin my therapy next week. For anyone looking into this though, as with any medical practitioner you see, make sure they have experience in brain rehabilitation.

I have followed some of the brain oriented stem cell therapy issues. The embryonic stem cell issue is of no value to the brain injured. The study I read reported that embryonic stem cells are not necessarily pluripotent.

They found that there is a risk of the cells developing into non-brain tissue. They have observed tooth cells and other non-brain cells developing in the brains of test subjects.

They found that there was a greater success from stem cells developed from the patient's skin cells. This technology is advancing quickly. The autologous donation is also a great risk reducer. The technology is called induced Pluripotent Stem Cells. iPSC. The research is ongoing in La Jolla California and shows great promise.

Regarding the neurofeedback self training, my research shows that the LENS system may be the most effective. The problem with self training is that some of the malfunctions are not as evident as the promoters claim.

I was evaluated by one of the pioneers in QEEG and neurofeedback. He broke down the wave forms into minuscule time resolutions to pinpoint the dysfunction. More common problems like OCD and ADD/ADHD are the easiest to treat. The more minute errors are harder to treat. He did not offer neurofeedback for my condition.

Dr Amen has a lot of interesting ideas. Some are valuable. Others are quite questionable, especially for the brain injured. His focus is more oriented toward human potential issues. I was looking into his clinic (The Amen Clinic) before my most recent and debilitating injury. At the time, he was only operating out of his Fairfield California Clinic. He was a frequent guest on San Fransisco area TV talk shows. Since he went commercial, his claims have become a bit more extreme.

Some brain therapy links
 

http://www.arrowsmithschool.org/

http://www.positscience.com/products/

http://www.sharpbrains.com/

http://www.mindsparke.com/brain_fitness_pro.php

For every scientific article that disputes the claims against Embyronic Stem Cell research (and there are very few to my knowledge), I could show you a dozen that report it's benefits. Despite what you hear or read in the news, Embryonic Stem Cells right now are the best source for cell therapy simply because you don't have to reverse engineer them, so the process of using them is less cumbersome. That, of course, doesn't mean that new techniques aren't in the process of being perfected to make it easier to use adult stem cells, but for right now the cells of choice in many research studies are embryonic. They can also be induced into pluripotent stem cells, such as neural stem cells (NSC's). A lot of the studies I have read that talk about injecting stem cells into rats, and other lower organisms, and observing nails, teeth, etc. growing were done when stem cells were first being researched were done a few years back when the science was new. The science has evolved since then and I don't believe anyone would just inject multi potent stem cells into an organism anymore (but I could be wrong). As a matter of fact, many Universities are beginning human trials this year. Researchers have also found that the stem cells also come with a ton of nerve growth factors that induce your own stem cells to begin growing and repairing damaged tissue. Also, the nervous system is what is termed "immuno privileged" (because an immune reaction inside of your nervous system would, essentially, begin to destroy your own nerve cells, the nervous system has a very weak immune response to any foreign bodies), so when you do transplant embyronic stem cells into a nervous system, they are not rejected by the host (at least not from the studies they have done thus far). So, that takes care of the autologous question. However, immune rejection will pose a problem with the other organs of the body. The reason, I believe, why scientists in America are so busy trying to find ways to make stem cells from your own body is to eliminate the ethical dilemma of using aborted fetuses, and because of the aforementioned immune rejection response of other organ systems. So the fact that Mark has claimed that embryonic stem cell therapy is of no use to an injured brain is completely ridiculous and should be disregarded. I just don't see the logic behind it. If it is because of personal moral reasons Mark, then that is completely understandable. However, you shouldn't get into the habit of discrediting science just because you don't personally believe in the methods used to carry out the research (sorry, that is my little soap box rant from being a research scientists years ago who was constantly pestered by the P.E.T.A people for our use with animal models).
But quite honestly, the research is so new and controversial that no one really knows what will come of it. The only thing that we do know is that, as Mark put it very well, the research is happening very quickly and has thus far shown great promise. I do know that they are currently doing stem cell therapy (embyronic and adult) in other countries and are seeing some pretty amazing results from it, albeit they are all anecdotal. A great example is of a girl from Fort Collins, CO who was diagnosed with some sort of vision disorder (sorry, can't remember which one off the top of my head), was considered legally blind and was told she would never be able to drive a car. She traveled to China, received adult stem cell therapy on her eyes, and a couple of months later, got her drivers license. There are other similar stories that can be found through google.


I'm sorry to hear Mark that the person you saw never recommended neurofeedback for you. If you don't mind me asking, who was it? Also, have you even tried to do it to see if it would be beneficial or not?

Question regarding Hyperbaric Oxygen Therapy
 

Hi Everyone,

Sorry, don't mean to monopolize this thread but I'm hoping someone can share the experiences they have had with Hyperbaric Oxygen Therapy. Please let me know the good and the bad. Thanks.

Mike

thanks
 

[QUOTE=mhr4;524195]thank you
unlike the medical system in the US many of these treatments are not available here, they need to be approved by the NHS and for many the cost is prohibitive, but thats not to say they do not have merit,

my gate is slightly off, its a bit like standing on the deck of a boat . I tend to vier around and feel sick in cars and walking sometimes , I have to visually orientate myself if I close my eyes I will lose my balance
its a bit like Ménière's
http://en.wikipedia.org/wiki/M%C3%A9...re%27s_disease

I had a CSF leak and still do but it mainly go,s down my throat now. I am awaiting more tests at kings collage London it could be the leak, but it could be the TBI :confused: fluctuation in CSF pressure can affect the inner ear, I have real loud tinnitus also

All we seem to get from the doctors is learn to live with, it and wait and see

my doctors are good men, but the system is very slow, if they don,t think you are dying

I read a book
 

hi back again I just remembered

I read a book (the brain that changed its self) , there was this poor woman that lost her vestibular system completely and was in constant free fall,

a nuroplastion made a hat for her that oration vier electrode,s on her tung after six month her brain had learned to use her tung to balance and she did not need the hat

You're welcome Vinny. Thanks for the info as well.

[QUOTE=vini;524402]