1. A clean MRI does not mean you are "OK."
If you feel that something is wrong, keep pushing for testing or have your loved one push for you. Do not trust that your GP is well versed in what a TBI means. Think of them as a gatekeeper to get you to people with the real expertise.
2. Symptoms change.
You may notice a lot of them. Don't dismiss anything and keep a journal. I originally tested negative for aphasia, but it came up a month later. Fun times. You will be dealing with so many changes that sometimes you don’t even realize that a symptom or problem is happening until another clears up and your brain finds room for identifying it.
3. Do not hide or minimize your symptoms or disabilities.
I know it's hard and almost impossible to accept how much you can't do anymore, and the only thing more impossible is trying to explain what you are going through. But hiding and minimizing only hurts you.
4. YOU ARE NOT CRAZY. You are not alone.
There are support groups, and the best resource for me was seeing a speech therapist. I didn't think I needed it because my speech was…Ok. But go. A Speech-Language Pathologist (SLP) helps with many brain injury issues including speech, language, social communication, cognitive communication, and swallowing disorders in children or adults. Go to every specialist you are referred to if you can afford it.
5. If diagnosed with PTSD, seek that help and follow up.
Throw away any stigma or preconceived idea you have about what PTSD means and call. I waited almost a year to go, and my only regret is that I didn't go right away.
6. Respect your brain.
REST. A lot. Like crazy amounts. Like newborn baby or cat amounts. And get over it if you feel lazy or see a specialist to help you sort through why you feel that way.
7. Love yourself.
8. Both you and your supporters should read Brain Lash by Gail L. Denton.
Actually, ask your doc if you should be reading first…but your loved ones and supporters can gain some pretty great insight by cracking it open to any page and reading an entry. You don't have to read it straight through which great.
9. Learn to meditate.
I thought this was such weird advice, and I still struggle with it...my brain can't handle workouts or yoga yet, but meditation is key to healing. Try a guided one from YouTube. There are guided meditations to help you sleep, and there are guided meditations to help you feel less stressed.
Comments (34)
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Anonymous replied on Permalink
I hit my head on November 7, 23 on the corner of a truck lift and cracked my head open. I saw stars and had to hold on to a door handle so that I would not fall. Had to be rushed to ER and head was glued back together. I ended up with concussion and now I get headaches two - three time a week. It's been on going for three months. Went to Neurologist and he gave meds and PT. I go back to him in 2 weeks so that he can look at my brain. How will I keep having these headaches?
Anonymous replied on Permalink
I really do not think this type of article is very helpful. How many people can actually do these things? I found this website once and then forgot about it for a year, much less being able to follow a list, or do things like journaling or meditation. I am three years out from my head injury and I still cannot do those things. The first thing I would suggest is putting a huge white bandage on your head and d not take it off. Otherwise everyone just thinks you’re fine and you cannot even make a sandwich. No one helped me at all. I was just left alone. If anyone ever hits me from behind again I hope it just kills me. It has been the worst experience of my life. I have hated myself and thought about suicide about 100 times a day. No one understands you, not even my mother. I gained 20 pounds because I could not remember if I had eaten, so I would eat again. I could not keep track of anything, if I wrote something down I would forget I did it. If I wrote a journal for each day I would be writing “I don’t remember” over and over, and leaving it in different places, and probably never find them again. We need help from other people!! You cannot take care of yourself. I laid on a futon with the lights out in 95 degree weather, could not make food, ate everything over the sink, no preparation and no plate. Just hand to mouth. Couldn’t cook for six months. Did not do laundry, each nightI would hand wash my underwear and would hang up other clothes so they would not get wrinkled. Wore black pants so they didn’t show dirt. Could not do an entire shower, just get wet and a little shampoo, rinse. Did not wash my body, it was too complicated. Just towel off. I needed help but everyone just left me alone. I do not even know how I survived.
Dianne Howard replied on Permalink
The 74 year old gentleman who is my ex-husband who I care or was it in the face and needed four stitches above is I but says he feels strange what can I do about this concussion that the doctor gave no follow-up care for except for stitches
Anonymous replied on Permalink
My husband was hit by a tree branch just over the top of his eye and needed four stitches but is complaining that he doesn't feel right what is the best thing to do for treating
Josh Johnson replied on Permalink
Hello, yesterday I suffered a concussion snowboarding. I was told i knocked myself out and started seizuring. Now my whole right leg is numb. Doesn anyone have any idea whats going on? Something similar happen to anyone? Kinda freaking out.... Thanks
Alice replied on Permalink
It could be pressure on your nerves or some type of subluxation on the spine. Please before going to far see a Gonstead Chiropractor not a regular chiropractor. A Gonstead is a specialized treatment that works almost all the time or can start helping by showing you where they problem is. They take full body x-rays. They are the best chiropractors you can see. If you want to learn more you can look up Gonstead Chiro on you tube. Best of luck.
otto burton replied on Permalink
I've had similar experiences after my wreck, I just had alot of rest, but the seizures continued until I got some treatment. Just get plenty of rest.
Suzi replied on Permalink
I fell and it knocked me out and I didn’t remember falling, but I started having severe head pain and looked at my scalp and there was a lot of bruising and some blood. It has been 2 weeks. My neck was bruised and behind my left ear, which all of the injury was on the left side. Now my left ear is constantly making noise, I did go to the ER and have a concussion. I have had headaches everyday; however, the longer I heal, the concussion site ha severe shooting pains on and off with a regular headache. Does the concussion site hurt worse as it heals? I’m 59, and have never had anything this severe. Any input will be appreciated. Thanks
Ed replied on Permalink
Hi Suzi, I had a similar experience 3 wks ago when I blacked out standing and fell backward to the floor hitting my head. For the first day or so I didn't feel much pain, no blood or bruising on the outside. But as time has gone on the pain has increased at the back and top of my head. I also went to the ER a few days later and was diagnosed with post concussion syndrome. I have been unable to drive or walk more than short distances due to dizziness caused by motion. I'm not sure how much if any healing has taken place in 3 wks because I feel just as bad now as I did on week 1.
I think patience will be needed as well as follow up with a good doctor. I am 49 years old and also have never had anything happen to me this severe. I wish you the best with your recovery.
MEETU replied on Permalink
hi Ed, How U feeling today?
I had similar experience? Not sure what to do next?
ML replied on Permalink
Thank you for the meditation tip!
ML
Anonymous replied on Permalink
thank you for sharing your experience I fall in my work got deep concussion broken my nose cut my finger I been in this for 7 months and feel all signs you have also head nerve inflamed pain in my half of head and many migraines taking 6 pills every day for the nerve in the head I,m wit WC right now but not sure if I got a lawyer help my life change feel so sad I have 39 years old
roxanne replied on Permalink
Thanks for sharing your experience. It really helped me.
Lyn replied on Permalink
I am 66 years old and do athletics to a high veteran standard. 4 months ago i was doing resistant band work and ran out too far and it yanked me back in the air and i knocked myself out on the track. I was brought around by water and did not remember my name for about 2 hours after. A week later I felt ok and ran a couple of races that weekend. 2 days later I could not see dizzy etc and was diagnosed with post concussion syndrome. Since, I feel awful still, no energy, tired all the time, headaches. How long will this last.
Anonymous replied on Permalink
You rock!! I felt all alone until I read your post... Won't last, but I feel it..lol.. Your intelligence and "tell all" attitude is the world to people like us..lol.. Ty!!!
Jonna replied on Permalink
I was able to find good advice from your content.
Call replied on Permalink
Knocked out from a high curb landed on black top at the back of head. Needed CPR to revive. Staples and told bed rest. Seems like something is missing.
Dr. Aaron replied on Permalink
Just stumbled on this .... if you're still feeling foggy ..... you need rehab ... go see a chiro or physio that does a tonnne of concussion work
Anonymous replied on Permalink
This is good info. Having a TBI is tough. It's not for wimps or the faint of heart
Natalia O. replied on Permalink
Hi, I have a mild concussion and I bumped my head a little hard a few times while I was suffering from my mild concussion symptoms, how long should my mild concussion symptoms last now?, it's been 1 month and 3 days since I started having mild concussion symptoms and my symptoms are anxiety, sadness, excessively crying, and remembering new things rarely but sometimes. Also I'm a kid but I'm in middle school. Please answer.
Anonymous replied on Permalink
I'm glad I found out about this diagnosis and online information. My main neurologist (I have had three for this last head injury) identified and supported all my symptoms but didn't give it this diagnosis.
This helps guide me in my personal understanding and self help in addition to helping my family understand.
Anonymous replied on Permalink
Water. You need water as much as you need sleep
Jennifer replied on Permalink
Why water? I’m a new and secondary caregiver to my boyfriend, and am just learning. Trying to figure out what causes his serious headaches. Haven’t figured out a pattern yet.
Anonymous replied on Permalink
I recommend botox for chronic migraines. It works better than pain medicine!
Anonymous replied on Permalink
I suffered a mild TBI in February and a few weeks later was diagnosed with Horners Syndrome. I have been through so many CT, MRIs, MRAs they found something on my collar bone I was told maybe a Pancoast tumor. This was May 6th I have not seen my GP since, I feel like I have been put out to pasture! I have to call every 30 days to get a new RX of Lortabs for the cluster headaches. I feel like I should be seeing a specialist for long list of symptoms. The Dr wouldn't return my phone calls any suggestions??
Craig replied on Permalink
Look for a new doctor.
Anonymous replied on Permalink
I am so glad I joined this group last week. It has helped me tremendously especially in realizing I'm not ALWAYS wrong like I felt. It also helped me come to terms with eliminating toxic relationships which sadly at my age included some long time "friends" and an evil sister. Thank y for helping me realize I don't have to give in and take it any longer. I am stronger already as I accept my new identity. Thanks to Craig from "second chance to live" I will keep going up, not down
Anonymous replied on Permalink
I can vouch for meditation. I first read years ago that it opened up new neural pathways; and so, I was hooked. Meditation, which I've done for years( using Centerpointe's programmed meditation soundtracks), and then yoga the last 2 yrs. Both huge in my recovery. And I truly believe that; if you can breath, you can do yoga, and sustain great benefits from it. Centerpointe.com Peace & Love!☀🌻
Anonymous replied on Permalink
Thank u this helps a lot I am a RN who had to take early retirement after a closed head injury from MVA 1 yr 5 mos ago am I am not the same woman afterward I have heat intolerance minimal patience more isolation it's hard to focus on task and insomnia so day time fatigue periodic not recognize words I share this only to say u have to know and accept the change and go forward but let u r loved know u need to care for u r self first u were hurt bad and embrace u r own healing and new self
Anonymous replied on Permalink
Helpful, please continue to share posts about TBI
Anonymous replied on Permalink
Exercise is vital as well. Initially I was told I would need 24/7 care, now I'm planning on graduating college to help others with TBI do the exact same thing. It is possible, you just need the correct tools, which unfortunately most do not. I however do.
Anonymous replied on Permalink
The fact of the matter is that doctors graduate from medical school and residencies with virtually no understanding of the long-term and permanent cognitive impairments caused by brain injury, how to recognize the symptoms, or what the appropriate follow-up would be. Even neurologists, psychiatrists, neurosurgeons, rehab physicians, and ER physicians are not adequately trained to deal with the chronic phase of brain injury. I went to the brain rehabilitation clinic at Mayo Clinic and was not offered anything substantial. I had to find what I needed (intensive neuropsychological/holistic cognitive rehabilitation) on my own, and I had to pay for it out of my own pocket. -- Maria Romanas, MD, PhD
Anonymous replied on Permalink
If I can add just one thing, it's be patience. For the caregivers and supporting family.
Anonymous replied on Permalink
Thank you for these wonderful tips! It would have helped me a lot more if they were available 22 years ago.