Post- Concussive Syndrome

Post- Concussive Syndrome

Hi, I am 30 and suffering after severe back to back concussions in two auto accidents. The first knocked me out and the second knocked me out and senseless against the steering wheel. My nose was bleeding and I vomited all over myself in the second accident. I tried to go back to work and not focus on it. Ended up in the ER and I've not been the same since. Now, I have to take disability because my head spins so bad I can't walk most days and I can't remember anything new or learn new information. This is a horrible experience for someone that never needed an alarm to get up or a post it. Could do math in the top of my head. It's hard for me to walk after my concussions. I can't hardly do it. Loosing hearing in left ear and vision in left eye. I have all the symptoms magnified x10 for post- concussive. I've had 4 head/sinus surgeries and survived a tumor in my sinus behind my eye. This is where it hurts so bad. I survived a skull fracture and broken jaw at 17 from auto accident. Is all this past head history and problems making this current concussion worse?

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  • This sounds terrible. The only (possibly useless) advice I can offer is to ask to be tested for growth hormone deficiency. Head injury can damage the pituitary gland, and this can deprive you of a lot of important hormones including growth hormone. If you are short of this you can suffer 'brain fog', and replacing it can improve your ability to think clearly. Look up 'post-traumatic hypopituitarism'. There is a research article by WM High called 'Effect of growth hormone replacement on cognition' which you could show your doctor. Also, if your skull fracture was a basal skull fracture, that's a special risk factor for pituitary damage. But the pituitary is a fragile structure with a slender stalk and is easily damaged - even concussion can disrupt its blood supply. There's plenty of research to show that even if your skull fracture was years ago, it can still show its effects years, or even decades, later. I do hope this helps.

  • Thank you so much! I was reading something along these lines. The odd thing is I had brain fog after the initial accident and over came it enough to function in school and at work, but I still felt off. Then when these car accidents occurred knocking me out both times I really suffered. The odd thing is before these accidents I had a stomach and hernia repair. Stomach defect was believed to be a birth defect not detected to later in life causing me absorption and digestive issues. Other odd thing is I grew after the surgery and I had it at 30 on May 4,2016. Yes I grew about an inch. I agree something is very suspicious with my growth hormone and pituitary gland. I've dropped weight and then gained it all with no explanation. Definitely looking into this. These recent injuries to my head and around that old skull fracture caused chaos in my body. You're on to something.

  • Thank you Ballet2385, I'm glad the info may come in useful. I just wanted to add that if you get given the short synacthen test and the result comes out normal, don't necessarily believe it. It isn't a good test, it's cheap and that's why they use it, but it misses 2 cases in every 5. The tests that are likely to show it are the insulin stress test and the glucagon stimulation test, also the GHRH+arginine test is reliable too. They will measure IGF-1 levels, but again, if these are normal don't be fobbed off because they are normal in some huge percentage of people who are growth hormone deficient (you can google it). Read up as much as you can about it, it's vital to, as you may encounter all sorts of opposition from medics. They aren't encouraged to diagnose GH deficiency, sadly, money again I think.

  • Hi ballet 2385, I was interested in your post as you were the first person to write about difficulty in walking after your accident. I hit the back of my head off the edge of a concrete step and initially I couldn't leave the house as I couldn't walk in a straight line and kept bumping into walls in the house. I had to move very slowly as I felt as though I was always going to fall over. I felt I had no control over what my feet were doing and they felt disconnected from my body , a very strange feeling. Is that a similar feeling that you were experiencing? 2 years later I am now managing the fatigue and so delighted to be lucky enough to be back at a very demanding job full time but still have to watch what I'm doing and not try to pack as much into a day as I used to. Hope you feel much better very soon!

  • Kudos to you for getting back to your demanding job! This is what I want to do. I've live my life as a doer, achiever, activist, and leader. Not going to retire to quitter and bed head anytime soon. I had these VNB exercises given to me by my ENT, Ear, Nose, Throat doctor. They do help. They retrain your brain's injured part to take over and rebalance your body. If I can find a way to upload the pics of the instruction sheets I will. The exercises could be practiced by anyone that just wants good balance as well. It sound like you have a case of BPV , Benign Positional Vertigo. When you change positions the tiny crystals in your inner ear don't balance your equilibrium and you fall all over the place. Does the happen when standing sitting, getting out of bed, changing directions with your body? There are neurologist and ENTS that treat it. Primarily Neurologist. Meniere's disease is something that must always be ruled out as well. Don't live with it without medical care because it could be a sign of something more severe happening in you inner ear or brain. Check it out. There are test audiologist do that can diagnose this as well. Don't be afraid to pry for answers-it's your body and your right to live happy and healthy. I survived a tumor when I was in my early twenties. I was going blind and had a 98% blockage in my head. Emory in Atlanta one of the top hospitals in the US and world told me to go home and die with palative care. I refused pain meds and found a surgeon that took that tumor out intra nasal, which they do everyday now all over the world, Back in 2007 they didn't it was in its early stages. I wasn't going to die that young without a fight and I knew that God had a better plan. I was normal until these past car accidents. I survived a broken jaw and skull fracture when I was 17 and broke a place of my skull that is never suppose to medically break that healed when it wasn't suppose to be able to close. You will get better. Keep the faith and find a doctor that believes in you. My current jaw physician was brought in from Australia and is the best!

  • What a terrible time you've had. I afraid I can't offer much advice, it looks like you're possobky not uk based? Otherwise I'd have suggested calling the Headway Helpline. One thing which helped me a great deal is a treatment called the Epley Manoeuver. It doesn't work for everyone, I've had it several times each time my dizziness has worsened and its been fantastic. It's non invasive - just take some travel sickness pills before you go to your appointment (as long as they don't interfere with any other medications you're taking - check with your GP.) but for me it's been life changing. I've gone from not being able to stay upright at all, to being able to walk about with just a swimmy head. It can take several tries to make it work properly. With your ear problems it's possible that this might be suitable for you to try.....so ask your GP or your consultant what they think. I hope your get better soon - you've been through a terrible time, such unfortunate luck to have two head injuries in cars so soon. Take care and good luck

  • Thank you for giving me the name of the maneuver. I have had it done. No, I'm in the US, but I am thankful enough to have an Australian doctor on my team that new about this maneuver. It save my life after the first accident. I threw up all over the place every time I moved my head. For some reason, they wouldn't try it after the second accident because I have a cervical disc in my neck herniated that moves onto my ocular nerve. Causes my left eye to feel like it is going blind. My ENT uses the maneuver and the bad part for me is I have a double dizzy problem being from my benign positional vertigo and my post- concussion syndrome. After hearing loss issues it's scary to think that it could be trauma induced Meniere's disease. I need jaw joint surgery as well from messing mine up in the first accident.

  • Oh dear :( I'm so sorry.....I feel your pain....I'm being investigated for all of this currently and hoping it's not something like that. I didn't know you could acquire it through trauma. My dizziness has been greatly improved by several goes with Epley but keeps coming back. I do wish you well, so sorry for what yiure going through, bless you.

  • I hope not either. We'll stay positive! Mine kept coming back, but my head kept getting hit too. I was never a dizzy person. I was always the soloist in ballet and could spin for as long as I wanted to. All my other friends would spin out, but not me. Now I'm like this.

  • I understand - that's so difficulty for you. I've never had issues with balance either, no problems at all with theme park rides or climbing or anything requiring good balance. It comes as quite a shock. It's such bad luck that you've suffered more than one trauma, so unfair especially considering your profession. I wish you all the best with your recovery.

  • Thank you it is. I have to be strong. I was surprised that I thought better for the first time today. I slept last night to. I drank too much caffeine to sleep at the moment. I used to ride rides that dropped 13 stories over and over at Disney World. We're going to heal. I'm going to keep telling myself that. I am bummed out because I just got an interview offer for a job I want and they don't want me to work. I want to work, but struggle with these complications of post- concussive syndrome. I've had a few head surgeries, a tumor, broke jaw, and skull fracture. My worst thing to have two more accidents. I did that when I was a teenager as a passenger and messed it messed me up. I am going to be strong and brave.

  • One day at a time :) The roller coasters will have to wait x

  • hi ballet2385

    prayers and hugs for what you are going through, i am in my 50s and am also suffering from post concussion syndrome. As i read your post i can relate to allmof it. i want to comment on many parts of it as i am reading it but by the time i am finished i cannot remeber which parts or compose an intelligentreply. i have not worked since the accident as i have still not been able to find a sustainablecoping mechanismfor the fatigue. having been a snr manager in a very responsible position to struggle to remeber things now... as with you i needed no reminders... see some things can come back as i write. i have no idea what i will remember or not, have difficulty with timelines and in the last few months found walking exceedingly difficult. it has been ppointed out to me by friends who are medical professionals that my brain appears to be in permanent fight or flight mode so if i do overdo it i can end up with my immune system getting compromised so i suffer from infections or i can end up with symptoms for thyroid or diabetes. but it seems if i don't listen to the fatigue and warnings my brain is sending me it shuts me down hence the inability to walk. my friends say this makes sense as fight flight third is freeze..

    suffice to say, what i have learned in the last two years is that our brains are an amazing organ and i do believe in the plasticity of our brains so i am striving to find new routes for all the activities and skill sets i used to have to be rerouted and i believe in the hope of a future healed brain.

    ps to add this is agreat resource you have found. we are all here to help one another, with advice and sometimes just to see another post that you can relate to which says to you " i am not alone, thankmyou, i am not going mad, it is not all in my head... lol, or to show family members.. see that is me, that is what i have been trying to tell you".

    hope you get some answers to help you on the journey

  • Thank you so much, tigeranne. I believe in the fight for flight mechanism in our brains staying in over drive after surviving the accident that caused your brain injury. If I get stressed I have amnesia. I can't even remember what day it is or what I'm doing next. I get it completely. Thanks for verbalizing this phenomenon. I was just wrongfully terminated for my disability then my last paycheck stolen out of my bank account. More stress! I will be experiencing confusion with a side of brain fog today. I will remember to stay calm and get out of fight for flight. It causes panic in the body, widespread panic when we can't remember things. I feel so much better that I'm not alone. Although, so sorry you have to go through this journey of brain injury with me. E- HUG God Bless!

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