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

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

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

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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 :-)!!!

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!

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

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?

My son had a pretty substantial concussion in 2013 and has suffered from PCS ever since. He has had 8 relapses since the initial injury and each one is worse than the last. One time it was so severe that we raced him the the ER with complete right side paralysis and the Dr thought he has having a severe stroke.

Last night we were grocery shopping. On the way there he said he had a headache but other than that he was fine. At the store he collapsed and was drooling and could barely talk. He was numb all over had a severe headache and ringing in his ears. All of the same symptoms he has when this happens. Usually it takes weeks to recover when this happens and its devastating for him. He gets very depressed and says he wants to dye which breaks my heart.

Last night when this happened there was a DR in line behind us and she said she could help us. Her office was right next door to the hospital so if it didn't work we could be right there and go through the same nightmare we always go through with no results. My son has been through every test and treatment conventional medicine has to offer so I figured it was worth a try.

We went to her office and she brought out something called a Cosmodic machine and said the Russians developed this for their cosmonauts and that it can really help. She used it on my son and in less than 4 minutes he was 100% healed which blew our minds. How could I not know about this after everything we have been through? Most doctors say it's all in his head but when you are carrying a drooling mumbling boy who can't feel his legs or arms and has popped and peed all over himself because he's lost control I don't care what anyone says this is NOT in his head. He is a normal boy most of the time. This started with his concussion and ruined his life (in his words not mine). I cannot believe this treatment exists and he is 100% better today.

It will be my mission to spread this knowledge to help others who suffer like my son. Look into it. It's an expensive machine (prices range from $1800-$10,000) but I am buying one today and thank god I found this. The dr said it helps with a lot of things; PTSD, neurological problems, depression, PCS, nerve pain, etc. I cannot praise this technology enough as it was a lifesaver for us!!