Don't wait! If you feel something is off get it checked out and take it easy....

In August I suffered my 6th recorded head injury by september I lost my job, my november I withdrew from school, since, all has gone down hill...

I "ignored" my symptoms, after so many head injuries (from soccer) I just brushed 'em off kept telling myself I'd be fine just a few more days but things kept getting worse. Now 11 months later imy symptoms have gotten a lot worse. So don't ignore it, don't brush it off and keep on pushing. Take a break and slow down. Let yourself rest before you keep going. I've hurt myself worse now because I didn't stop. I was told 3 weeks I'd be better yeah well that wasn't true....

Listen to your body and do only what you can without pushing yourself.

Still learning, but wish I Kwen this a month ago...
 

** Limit your computer time for only 10-20 minutes a day. It will be even better if you forget computer/iPad/smartphone for a while, specially on the first month or so. When you do feel ready to use the computer, make sure to readjust the brightness to minimum. Also helps to wear sunglasses while you are online. **

BTW, maybe this thread should be a sticker one?! I think people joining in could get to this info more easilly if it was a sticker.

concussion
 

I am looking for help for my son. He has such an array of symptoms. Is there any assistance for him. He is 19. He had 5 concussions in 14 months. 2 bad ones. The first an accident at school and the last one was a car accident.
He was diagnosed a variety of different mental disorders. Please, is there anything to help him?

I am taking sevral herbs althogh some might be suspicious about it. I heard large dose of fish oil can help, just started. But I would recomend Brahmi (Bacopa Monnieri) for mental problems, it is unexpnsive and widely used in Ayurveda for mental problems and improving memory. Many years ago my EEG became normal for first time in my life after taking it... previously I was diagonesd with epilepsy, although never had an epileptic fit, doctors ar sometimes amazing. There is also one other product, Divya Medha Vati, just google it.... first it helped me a lot, I mean Brahmi,but I had another small concussion which added to previous, anyway, these herb, from my experinece, and what I heard, can make big difference.

Try to contact good homeopath. Try aslo acupuncture.... Important is avoid further injuries... and try to find natural way to treat his mental problems.... with minimum allopatic medicines.

Goods luck to you and your son.

A double blind randomized study was done in Australia about Brahmi. The NIH has the results.

" The results show a significant effect of the Brahmi on a test for the retention of new information. Follow-up tests showed that the rate of learning was unaffected, suggesting that Brahmi decreases the rate of forgetting of newly acquired information. Tasks assessing attention, verbal and visual short-term memory and the retrieval of pre-experimental knowledge were unaffected. Questionnaire measures of everyday memory function and anxiety levels were also unaffected."

What this basically says is that if the subject can learn the new information, the later forgetting of this information is lessened by the use of Brahmi.

It sounds like its value is on long term memory functions but not immediate or short term memory functions. Most with PCS struggle with short term and immediate memory functions.

honestly this made me cry, thank you so much on behalf of everyone who read this and everyone who will read this!

Post- Concussion Syndrome
 

Hey everyone! I need help. I know that I haven't dealt with PCS as long as most people on here, which is only 4 months and a few weeks. But it is hard to think that this is ever going to get better. I am only 16 years old and I struggle everyday. I feel like I am not a normal kid and that my whole life revolves around my head and what I can and cannot handle. I feel like people don't understand because there is never any light shown on PCS. Most people think that you get a concussion and your better in a few weeks at the most. I know this, because I was one of those people. That is what is so hard for me. Knowing that I am in this by myself. The struggle is only felt by me. If anyone has any hope or advice, now would be a great time for me to hear it because I am not so sure how much more pain I can take.

Mark, great post.

I am dealing with hubby's medical info and you are so right on the nose with your advice, you need a great big THANK YOU FOR SHARING award!!! :hug:


QUOTE=Mark in Idaho;723686]I take exception to Marilee's recommendation of getting to a neurologist. While this may sound like the logical thing to do, Marilee was very fortunate to find a neurologist who has some level of understanding of Post Concussion Syndrome.

I have been seen by many neurologists. Only 2 out of at least 12 or 15 had a decent understanding of concussion. The wrong neurologist can start a medical record that can follow your quest for help and get in the way of future help. The riskiest neurologist in my opinion, is the one who works in a large multi-specialty group practice or HMO.

I am talking of the clinics of group that share access to medical records. If the family practice and ob/gyn and neurologist, etc. all have access to your complete records, the wrong label or diagnosis can block you access to further care.

In my case, one doctor diagnosed my as somatoform disorder. This can mean three different things. His symptoms are unexplainable, his symptoms are likely made up (psycho-somatic or hypochondriac) or we recognize his symptoms but can not reach a definitive diagnosis. The first two can leave you in limbo land or worse. The last can hopefully leave a chance at further diagnostic work.

After one doctor in my HMO diagnosed me as somatoform, my access to further help shut down. I spent my own money to get further diagnostic work but even then, my health care company (HMO) refused to even consider my private doctor's diagnosis.

So, if your are going to see a neurologist, get a referral to a neuro who has a true understanding of concussion. This will be a difficult but important task. If litigation is involved, do not do this wiithout the advice of your attorney.

My recommendation for early on is to learn to recognize your symptoms. The TBI Guide is a good startat helping you understand them. Telling a doctor that you don't feel right or feel dizzy or confused is too subjective. If you can better define the specific symptoms (but not in medical terms), the doctors can put a better picture together. Using medical terms creates a risk of being rejected by doctors who do not like patients doing self-diagnosis. The modern term for this is cyber-chondriac.

Instead, say:

I get stuck trying to find a simple word. I might know what I want to say but can't get the word to my lips. This has never happened to me before as often as it happens now.

The bright lights overwhelm me.

The voice of multiple people talking at the same time causes me to become disoriented.

If I try to watch TV, I can not pick out the dialogue from the common noises in the house like the heater fan, etc.

Try to define any specific situations where your symptoms get worse. Morning, at the mall, after trying to read, etc.

It also helps if you can bring a family member with you to explain what they observe. They can also take notes for later reference.

And, DO NOT SOUND LIKE YOU ARE WHINING or grumbling. A journal can help take the whine out of your presentation of symptoms to the doctor.[/QUOTE]

Don't be afraid to medicate
 

Back to the original idea of the thread (things you wish that you'd known, which might possibly help others who have just had a concussion):

I am now taking pregabalin (Lyrica) - 100 mg a mealtimes (three times a day) and 150 mg before bed. That seems to work well and I am feeling a lot better on it, mainly greatly reduced pain.

I wish that I had been prescribed more medication initially. Of course, you can't just get whatever you want over the counter. You have to rely on the doctors and someone newly concussed isn't in the best place to know what to ask for. However, I do think that if I had started taking something earlier then it might have been easier to get through a really horrible period and cope with a lot of pain.

You have to get to know what works for you, how much to take etc.. That all takes time; years in my case. I haven't found much relief from over-the-counter medication, ibuprofen, aspirin, acetaminophen (paracetamol) etc.. I have found that only daily medication for a period had any effect. Just taking a couple of aspirin seems to do nothing at all.

There can be a problem regarding over-use and side-effects. With amitriptyline I found that there were some side-effects but once you have been on it for a period of time it is really difficult to come off. I have had to cut down by 2.5 mg at a time and then stay on the new dose for a while. I have reached a dose of only 2.5 mg a day now, but that is after a year of gradually reducing the dose. I think that this drug is known for this difficulty, so I would recommend consulting a doctor before reducing the dose.

It is a real drag being dependent on medication but for me it is worth it for the beneficial effects of the drugs, pregabalin for me (I think that the effects should be very similar to that of gabapentin, which I have not tried, because the two drugs have the same target). Somebody else might do better with a different drug. I hope that something works for you.

CS

So,

For people with post concussion symptoms over a month, the first Dr. appointment you should make is with a neuroopthamologist that can prescribe tinted/prism glasses. I would've saved myself a year of suffering if someone had told me this right away. Instead, I bounced around from neurologist to physical therapist to chiropractor and spent thousands of $ when the issue all along was my convergence insufficiency.

My eyesight was fine so I never thought about getting it checked but the way my eye muscles work and team together was messed up big time.

There is a reason that when Hillary Clinton got a concussion she was seen wearing these prism glasses. People well off get the health care they need right away but it's up to the rest of us to figure it out on our own.

From my own experience I feel that a lot of the physiological PCS symptoms such as noise and light sensitivity, insomnia, headaches and sensory overload are exacerbated by the psychological symptoms and vice versa. It was only when I was prescribed the antidepressant Cymbalta at the four month point of PCS that all of my symptoms reduced. The medication combined with quiet rest got me on the road to recovery.

What I've Learned 1.5 months in PCS
 

1. I can't drive yet. I don't trust my perceptions. It is OK to ask for help.

2. Use Advil or its active ingredient for a headache -- not Tylenol or acetominophin

3. I will have good days (not so dizzy, not so light sensitive) and bad days or days where I OVERdid it and symptoms come back.

4. Vestibular therapy is helping me.

5. Take good vitamins. See the vitamin thread.

6. Eat good food. Not much junk food and limit or really try to quit caffeine

7. This message board is amazing the people are willing to help and share here. I am blessed to have found it.

I Wish I Had Known
 

I wish I had known that I had a concussion from the start!:thud:No M.D.'s or hospitals would tell me!They said soft tissue:eek: After a year and half of my own battle with PCS & M.D.'s I finally made it to the person I needed BOOM neurologist and a neurosyc test that gave me my DIAGNOSIS!!!:cool: YA I KNOW GREAT STORY HUH LOL

Things I wish I would of known...
 

I, like Mia went a long time (years) before getting the correct diagnosis of PCS also. I am amazed after telling lots of different doctors about my concussion history from passing out and hitting my head on concrete so many times that they did not send me to a neurologist long ago. Especially after the MVA.
I wish I would of known to see a qualified neurologist/movement disorder specialist. I wish I would of known to get neuropsychological testing done. I wish I would of known of this support group and that their are others out there who understand and are going through the same thing. I have gotten the best advice on here and so much support and help with feeling not all alone in the world or like I am just extremely weird or mental. I wish I would of known about earplugs and white noise. I discovered sunglasses and meditation for myself. I especially wish I would of known not to take Tylenol and Lortab or Lortab and extra strength excederin together because it will cause you to overdose on Tylenol and cause liver failure. I wish I would of known to see a back and neck specialist and had MRI's done of both as well as my brain while I still had insurance. I wish I would of known about pain specialist doctors before. I wish I would of known what was going on with me and how to explain it properly to my family so they could help me because I was unable to help myself.
I am very grateful for all I have learned and how far I have come.
Brain :grouphug:

Thought I would bring this thread back as it explains a lot for new members. Any chance the moderator could stick it up?

thank you
 

Thank you for this thread and this forum.
Today is a rough day but I'm finding hope in the things I'm reading here.

My traumatic brain injury caused visual issues (midline shift syndrome and post trauma vision syndrome). I wore bifocals before the concussion and assumed I just needed new glasses to correct the blurriness and double vision. I went to eye doctor after eye doctor before I stumbled across an eye doctor who understood it was my brain not my eyes that was the problem. THE doctor to see is William Padula in Guilford, CT. He has patients who come from all over the globe and is the best in diagnosing and treating these conditions. The other suggestion for PTSD/TBI is Hyperbaric Oxygen Treatment. There is a national study taking place right now (I just completed the treatment). It is amazing the results - it is non-invasive and no drugs are involved. I saw improvement in everyone in the study and think this is where treatment for a head injury should start. It works on healing the brain. It's used all over the world for head injuries - we're slow to the party thanks to the drug companies :(

I am glad HBOT worked for you. Studies show it to be of minimal if any benefit for the vast majority with PCS who do it, even after 40 to 80 treatments. It is a very expensive treatment before any benefits are even recognized.

Personally, I had high hopes for HBOT.

I also wish I known
 

I wish I new I had a concussion first off.Second I wish I had direction and help instead of using alcohol for pain.Alcohol and cognitive impairments made my cognitive impairments severe:(

Multiple Impact Syndrome
 

I wish I had known that having more than one concussion can be a real game changer for brain recovery.

If you have had more than one concussion -- I had one when I was 9 or 10, then you're at risk for more problems.

I can't articulate it, but multiple impact syndrome is at stake for you, and then PCS too.

Take care of your brain and take care of yourself!!

Shop for great doctors! Neurologist, neuropsychologist, vestibular specialist, Neuro ophthalmologist.

Get an advocate if you are alone.

Listen to your body. Write down all your symptoms even if you think it may not be anything important.

Find a support group or a neuropsychologist to talk to that will understand what you are going through.

My suggestions
 

1. Don't go to just any neurologist. If you can't research it, ask someone who loves you to do it for you. Mine was okay, but told me several things that are not true, didn't get me to see a neuro-opthamologist, and just didn't seem to offer me very much guidance. I really had to fight for my treatments, and because my brain function was compromised, I struggled to do this for myself.

2. Ask for help. From everyone who loves you. Help with car rides, emotional support, making appointments, paying bills, child care, etc.

3. Try to get the people you love to understand what you are going through, but if they don't understand, limit your exposure to them or if you can't do that, then take them to therapy with you or to the doctor with you, so that maybe someone else will help them understand.

4. Bring someone with you to as many doctors' appointments as you can. I wish I had done this! You may not be able to advocate for yourself or remember the information you are told.

5. Keep seeking answers until you find them. I had headaches from three different sources – neck injury, head injury, and vision-related issues due to the concussion. It took different treatments to address these three different issues!

6. Denial can kill. Looking back, it doesn't seem possible to me that I didn't figure out what was going on for so long. After my second concussion, I just didn't want to have another medical issue. (I'd just been diagnosed with hypothyroidism.) I didn't want to be a burden to my husband. I didn't drive for three weeks but then determined I was fine. Eight months later, my cognitive symptoms led me to crash my car, which served as a reality check but also worsened my symptoms.

7. Don't trust your doctors, not any of them, not fully. I had a few good doctors, but even the best of them made mistakes. My overworked PCP (whom I loved) sent me to the wrong doctor, so though I thought I'd been given the okay from a neuro-Opthamologist, I'd actually seen a retina specialist but it took me a few months to figure out. My neuro-optometrist actually triggered my biggest setback by putting me through some rigorous tests the day after my vision therapy. An emergency room doctor neglected to tell me about an anomaly in my upper vertabrae that, as it turns out, was causing my headaches. I only found this out by requesting my medical records several months later. By then, a new physical therapist had already figured out and fixed the problem! Doctors are fallible. They are people. It is important not to put blind trust in any of them.

8. Don't push yourself. Don't push past the pain, not even if it's a doctor or therapist that's pushing you. Learn from my mistakes. Take a stand, and don't let anyone talk you into doing something you are not comfortable doing. I've had three significant setbacks, and I've only recovered fully from one of those setbacks. I'm still struggling to get back to the more manageable level of eye pain, strain and photosensitivity I had in February. As of right now, I can't read, write, drive a car, or use a computer without feeling significant eye pain, and I can't go outside without sunglasses and a safari hat. I can't seem to lower my activity level enough to really heal. It's very frustrating!

9. Keep a journal to track your symptoms. It will help you figure out what helps and what hurts you, but most importantly, you'll be able to see yourself getting better over time. It has been very helpful for me!

10. Don't lose hope. I'm still trying to make myself follow this piece of advice, because I am scared that my vision will never get better, but I have to believe that I will be able to read a book and go outside without a hat on a year from now. That would be progress. Those are my goals, and anything beyond reaching those milestones would be a bonus.

I wish I would have known that there are some people, even professionals and loved ones, who just won't get it. And even more importantly, that stressing about them "not getting it" and feeling all defensive and indignant, was NOT worth the energy. It took away my sense of peace, which affected my healing.

I wish I would have gone easier on myself because although it seemed like an eternity off work, it now seems like it was a blink of an eye. Shorter than a maternity leave. And stressing about it did me no good.

I wish I would have known how to disengage from the anxiety caused by this injury.

But overall I wish I'd learned sooner how to live in the moment, and be grateful. I'm thankful for some suffering to teach me these things, and I pray to never forget.

I'm indebted to this place, the advice found here, particularly from the committed members who never give up on us newbies (that's you Mark... Thank you!) and I praise the invention of the ICE PACK! :)

Healing and Beyond
 

Things I wish I had known and I now share with everyone who asks:

1. Be present - all of us who have suffered head injuries know that the present moment is incredibly painful. I remember longing for the past when i was in the shape of my life and projecting myself into some greater future. Instead, I learned, in time, to accept where I was right now. Breathing, being. Appreciating the moment as it is.

2. Clean up my diet - I now do not consume sugar (except fruit & raw, organic honey), alcohol, caffeine in any form, pesticides, and gluten.

3. Light exercise can be beneficial - the Buffalo Clinic just came out with a new, conclusive study about the benefits of light exercise after a certain period of time (I believe 30 days) of being Post-Concussive. I look forward to my walks and yoga every day.

4. Change your thoughts, change your world. Where you put your thoughts is incredibly powerful. Choose to put them where you want them to be.

5. Meditate - Once I started to meditate and do visualizations of how I wanted my life to be, I started to heal. I started to read again.

6. Laugh - I went to improv comedy shows to help with the depression. Now I take classes!

7. Know that the body can heal from anything. You are not the exception to the rule. You just first have to believe that you can.

With so many healing wishes,

Amanda
*admin edit*

I wish as a former professional writer I knew it could take me a week to come up with this list. :winky:

1) Get an Advocate - Find a good advocate to take with you to all doctor appointments: friend, spouse, parent, older child, co-worker - anyone that is willing to be your voice when you can't find your own AND will fight for you. This person should:

• take notes,
• educate themselves on tbi/pcs to know what questions to ask,
• know your symptoms & your progress,
• ask for copies of your records to keep for the future,
• coordinate your healthcare when you cannot,
• won't take "no" for an answer and do anything it takes for you to get the best care available.

2) Find specialists in TBI/PCS - Do your research to find specialists in tbi/pcs. NOT all doctors are educated, experienced or specialize in the nuances of brain injury or PCS.

• I never thought to ask a local tbi specializing attorney for their doctor referral list, but hindsight allows me to see they know the right specialists to see for tbi/pcs. It doesn't hurt to ask even if you don't need an attorney.

3) Contact your local Brain Injury Association - if in America here is the link where you can find local resources - http://www.biausa.org/

4) It's Okay to ask for HELP!

• Asking for and allowing someone to help can be a humbling experience. It's hard, I know.
• Allowing others to help you can empower them with a sense of purpose which also empowers you.
• Be as specific as you can regarding what help you require.
• Communication is complicated when you can't find the right words to ask for your needs to be met in the first place. It's a learning process on both ends. Keep asking. Don't give up until your needs are met.
• Understand that loved ones might fail you when you need them most. It happens. Let it go and move on.

5) 10 steps forward, 11 steps back -
My neighbor discovered and made me aware of this process at work watching me over the first 2 years post-injury.

• As the brain rewires itself making new neural pathways: some symptoms might improve while others regress.
• It sucks.
• It is frustrating.
• Don't let this discourage you. It's part of the process.

6) Humpty Dumpty Syndrome - All of the king's horses and his men actually can miss some pieces when putting you back together again.

• You might feel: broken, that you lost yourself, confused, hollow, missing all your puzzle pieces, like an alien in your own body, not know who you are anymore, like you have memories of another person's life that is no longer your own AND are stuck in a strange body without the benefit of a users manual on how it operates. It is a surreal sensation.
• This sensation is more common than I thought.
• You are not alone.
• If you feel this way - Welcome to the adventure of a lifetime! You get to discover a new you. Hold on to this thought when depression envelopes you.
• I wish I could see this sensation as a gift of rebirth when it hit me, but I had to go through the grief process to accept the loss of the former Kristy to see this new one is just as good, if not better.
• Stop the negative thoughts and replace them with positive ones. My son put sticky notes on the fridge to remind me.
• Fake It Until You Make It - does in fact work.
• You will make it through.
• Coping Tools: Antidepressants, counseling, friends, family, furry friends, co-workers, classmates can pull you through - if you let them.
• Friends remind us who we are when we forget.
  
• Coping Tools II: Find new traits, abilities, skills, interests about you NOW to fill the void of loss.

7) Laughter IS the best medicine! Find humor in the small things, big things and ordinary things - laughter can pull you through. My humor can border on inappropriate, dark and twisty. I own it. It's mine. If other's don't understand, it's their problem. (My son nicknamed me "Brain Damage", my mom was outraged, but I laughed until I cried. It felt great!)

• Laugh at yourself.
• Laugh with others.
• Laugh with joy at your progress.
• Laugh with tears if you regress.
• Laugh when you cannot find your words - it beats frustration. Literally.

8) Silver Linings - Call it a playbook or embracing your inner Pollyanna, but find your silver linings.

• Seek them out anywhere and everywhere - especially when you don't want to. Fight for the positive. It helps.
• In order to accept losses, it helps to fill the void.
• List your progress so you remember how far you've come. I forgot, the reminders helped.
• Make a list of the bad and find a positive that came from it. Update the list. Sooner or later you will see the positive outweigh the negative.

• * I lost: my car, career, house, income, lifestyle, ability to walk & talk, my brain doesn't do techy geek anymore.
  

  BUT

  * I gained: the ability to draw, a profound inner peace I never knew, deep compassion for the suffering of others, inner strength, learned how to live in the moment, I learned how to really listen to others, I still have something to offer, I'm more knowledgeable about tbi/pcs than some doctors, I'm an excellent massage therapist that specializes in brain injuries.

9) Coping tools! Sensory overload and beyond...

• Fatigue - sleeping is ok. You're not lazy, you have a brain injury where sleep allows your system to repair damage.
• Brain Fog - Bodywork like: Massage, Shiatsu, Reflexology help ground you in your body. WARNING: sometimes our body is in so much pain it copes by altering awareness. Once fully grounded in your body, you may become aware of how much pain you're body now feels. The pro is the pain can now be addressed.
• Light sensitivity - Sunglasses. Try different colors and levels of darkness for inside and outside use. Go cheap and buy several for each purpose and multiple locations.
• Noise sensitivity - Noise canceling earbuds, plugged in to music or your pocket help filter out ambient noise. See an audiologist who can diagnose if you have physical ear damage or possibly hyperacusis where your brain can't filter the noise - musician ear filters can be prescribed. The filters run about $80 US/ear. Earbuds are an alternative if you can't afford the custom filters.
  

  * Close your eyes to listen - Many times sensory overload prevented me from being able to hear conversation directed at me. I learned by closing my eyes (effectively shutting off visual sensory input), I could hear and better comprehend what was being said. It was a Duh! moment. WARNING: I advise explaining your actions to others before shutting your eyes as... ahem...they find it rude unless they understand what you're doing. ;-)

• Focus - My neurologist (also ADD/ADHD knowledgeable since he's experienced misdiagnosis of ADD w TBI) stepped out of the box to try ADD meds. It took awhile to find one that worked. This is the closest to feeling clear minded since my accident 6 yrs ago. Not all doc's approve of this treatment, but hey - it's worth a discussion.
• Limits or Boundaries - Learn your limits. Others might try to tell you not to set limits because you're setting a mindframe of limiting yourself. Limits are more like boundaries that change as we do: they are flexible, they expand, they contract. Limits are good. Limits DO NOT mean you are limited. Limits are a stop-loss boundary: They tell you where you need to stop before you find yourself drained, emotional lability sets in, you over exert your physical body, you drive before capable, you do damage, etc.

10) Acceptance

• Does not mean giving up! - Accept where you are so you know your limits for your own safety. Reset the bar constantly to move beyond.
• Change happens: your brain constantly rewires itself, relationships come & go, you may lose and find yourself over and over again. It's all okay. Change is the constant! Make it work for you.
• There are NO RULES - regardless of what doctors might believe.
• "No" is not always the final answer.
• TBI/PCS does not define you.
• Others will not understand. It hurts. Let it go what you cannot change.
• Others will want you to be who you were before. Life experiences change us, we cannot go back. Move forward even if others cannot.
• Education on TBI/PCS is needed - become an educator.
• You might never get the life back you had before PCS. Make a new one that suits you.
• Anger can be a great motivator - use it constructively while not lashing out at others.

While long, I hope my experiences can help another. Best wishes on your recovery.

~Kristy

Just because a doctor has never seen a symptom before means just that. HE has never seen it. It doesn't mean it can't or doesn't exist for you and others.

Shop for the best doctor for YOU.

Make a binder with calendar pages to keep track of appts. Make a section for each doctor, therapy, medications, and a daily life section to take notes about your day. Take with you to every appt.

Since it is so difficult to find a good doctor, it helps to take charge of your own recovery. If a vestibular specialist is helpful, great. Just don't expect every specialty to be able to help.

Concussion and mTBI symptoms are not treated as a group. They should be addressed individually. Some, if not most need time.

Don't rush! Everything takes a LOT longer to do than before. Rushing will only exacerbate your symptoms, so take a chill pill and relax.

Be honest about how you feel to anyone you trust. They might be able to spot a problem before you even realize it is one.

If you feel like you need to take a day off, do it. Listen to your body and your mind. If you don't feel right then don't push yourself. You won't do yourself any favors.

Hi, I am a first-time poster! What I did not know to go along with you and Mark in Idaho is that most neurologists aren't familiar with concussions, and it is absolutely ESSENTIAL to get a good Neurologist and Neuropsychologist if you suspect that you have been misdiagnosed. My first Nuerologist was going to return me to work 2 months after my injury (rear ended while stopped in traffic), stating my mental confusion and inability to talk was due to "the meds I just discontinued." Now, almost 1 year post-injury, I have seen 2 other Neurologists and the second of the 3 was convinced I did not have a "severe head injury because I was never in a coma" and said I was " behaving" like I was more injured than I was. I had no choice but to believe her, and tried desperately to "behave " better, but still experiencing speech problems, light and noise sensitivity, daily headaches, extreme fatigue, huge overstimulation issues, and I was a clinician and public singer/speaker prior to my accident who never had trouble with communication or crowds of people!
Finally, I was referred to a Neurology specialty practice in Akron, OH. where I was given a Neuropsychological test(s), which showed moderate to severe cognitive deficits.
The road to recovery is still ahead, but I am grateful it was finally properly daignosed, and I continue on...
I will be entering a brain injury program soon, thanks to the Neuropsychoplogy tests and their recommendations.
P.S. Let your family?spouse/friends be your advocate!! They know you best, and can often see things you can't. Good luck to us all, and keeping you in my prayers!!!

not new to the symptoms but new to the community
 

Grieving the old me. Wish I knew more about realistic recovery expectations. I think I would be farther along if I had understood more about recovery. It is all so immediate and most care providers try to be cheerleaders as opposed to be mentors in a long and often inconsistent process.

Do you know of a good neurologist in the Boise area?

Helpful Information
 

You made some good points. I too experienced the frustration of going to the wrong medical professional. He was a more of a psych-neuro guy and not a neurologist. Unfortunately I wasted 4 hours taking tests that did not really add up to much. He seemed more interested in diagnosing me with depression or stress induced anxiety and completely discounted the fact that I experienced my second diagnosed concussion in a year. I work in a demanding job with a lot of responsibility so of course I experience stress but I like stress, it helps push me to achieve. My doctor fortunately seemed to support my views of the missed diagnosis however he has not been able to come up with a good treatment to help alleviate my lingering symptoms of poor balance, poor memory and sensitivity to noise. And to make things worse its now 2 months later and I hit my head again and was diagnosed with a third concussion. This one has made the lingering symptoms worse and my reaction times and vestibular deficiencies have lead my doctor to restrict me from driving. It sounds as if you may have an understanding of the issues from concussion symptoms that last a while. Have you made any progress in recovery?

Consider's Guide of PCS
 

Things I wish I had known when I had post concussive syndrome:

1) Doctor intervention is important. Getting to the right doctors always makes a difference. Headaches and anxiety were treated, plus Occipital Neuralgia.

2)Keeping a diary of your symptoms every day is important. You can look back and feel good about progress, also it is a great tool to show to your doctors and therapists.

3)"Rest? What rest? I can't sleep! I am lucky if I get sleep at all!". This is the very thing I said to the doctors, and was later prescribed on mirtazapine, which controlled sleep, nausea and appetite. 4 months later, I successfully tapered off of mirt and have beautiful sleep. Do what you can to get rest. I can't express that enough.

4)Nutrition is important. Mark's Vitamins and Supplements thread helped me a bunch. I still take the vitamin regimen every day, and to be honest, even though I have recovered, my ADD brain performs better and I can calm down when frustrated.

5)Avoid going out into crowded places. The stress, nausea and pain from going out actually make me run back into my car, plus it takes a bit of time to recover from a place called Wal-Mart. Now, I can go into Wal-Mart without problems now that I have recovered.

6)Remember that song It takes two to make things go right? Well, that is correct. In fact, sometimes more than two people is great. People need support from other people, especially during PCS/TBI. I can't express how great it was to have my friend watch over me everyday. She supported me during my dark times and understood my triggers, and on good days, we would do low stimulation activities such as art.

7)"Being normal" are two bad words during PCS, and should never be used. You will never recover to "normal". It's not possible. During healing, the brain changes so much and ever so slowly, and during your PCS journey, your personality does change. Mine changed for the better, I feel more grateful towards life and I am no longer afraid to ask for help when I need it. However, the hot-headed stubborn part hasn't changed. lol! I am still 98% recovered with symptoms of Occipital Neuralgia since April of 2013.

8)An anti-depressant helps sometimes in some situations. During my PCS journey, I was extremely anxious and depressed. My brain was screaming for help as I felt I had lost everything in my life and wanted it back. This caused major depressive disorder caused by both my ADHD and PCS. Having both didn't help plus being anxious all the time didn't help, I got on board with Paxil. I have not tapered yet since it helps me with my troubling ADHD symptoms since childhood, such as depressive episodes and some anxiety.

9)"I'm having a good day, can I watch some television?" Absolutely not. You need 2 weeks of good days to determine if you feel better, and even then over-stimulation should only be increased little by little daily to see what you can handle. I was an avid gamer before my PCS and it killed me to not have gaming in my life. 2 weeks passed, and I slowly got into video games slowly. Proteus and the game Flower was very easy on my brain, and so was brain training games like Lumosity. I went into increasing by 5 minute intervals each day.

10)Life is full of ups and downs. This is a down that will soon become an up. I promise, its gets better from here. You will improve in some way. Take care of you during this time. I felt grief and mourning over my life during PCS, which later turned into acceptance and happiness after a while.

I really hope this helps you all as this comes from a PCS survivor. If you have any questions, drop me a message. I will be happy to help. Brain injury awareness is important and the support is lacking.

Warm wishes to you,

Elisa (Consider)

spacing out
 

I didn't really think of it like that - but spacing out is exactly what I've been doing and it is very helpful.

I often follow a guided meditation to get there and then just lay around relaxing as much as I can.

thanks
el

Margarite,
Thank you for your words of inspiration. I am currently a senior in college dealing with PCS and have found your words encouraging. I have always been a spontaneous girl who like extreme sports like soccer, snowboarding, horseback riding, etc. I am only in month 3 and know I may have a long road ahead of me. I am trying to get through the rest of this semester so I can go home and fully rest over winter break. It is difficult dealing with constant fatigue, nausea, dizziness, and loss of time. The emotions have taken a greater toll on me though. I get anxiety wondering when this will end or if it will. I wonder if my boyfriend will continue to love me if I cant be that same spontaneous and fun girl. I wonder if my friends will still accept me as they have already drifted as I have given up drinking. This makes me sad and that feeling can be overwhelming as I just want to be back to "normal." I have hope I will get better as I get gleams of hope here and there when I dont experience symptoms for a few hours. I have given up sports and drinking as I do not know how they affect the healing process. Ive also given up the gym for now for the same reasons. I want to give my body time to heal but it is difficult in this fast pace life while I am trying to finish school. My faith has definetly helped me through this process and I am trying to find positives every day and be my sweet fun loving self even if it takes all of my energy. Thank you for your encouragement and if you have any other advice for a fellow college student trying to overcome this PCS, please let me know.

Kacee

Thank you for your words of inspiration. I am currently a senior in college trying to make it though my last semesters. All of my life I have been the girl who loves a challenge. MY passions include soccer, snowboarding, wakeboarding, surfing, horseback riding, hiking, and all of that fun stuff. Now, Ive had one too many concussions and am here dealing with PCS. I am only in month 3 and have given up sports for the time being and am trying to give up the gym for a little to see if it helps. I have nausea daly, fatigue, dizziness, and all that fun stuff. The anxiety and depression have taken a toll on me as I feel like my brain is precious and I am upset in myself for hurting it and pray that it will be better one day. If not, I mus learn to cope with this new me and I need to come to terms with that because like you said it could be way worse. I can still walk and smile and im alive on this earth. I know soccer and snowboarding and other activities may be done for me for good which is saddening. How long did you give yourself to heal before you started participating in simple active activities? I feel as if Im okay to handle the gym and outdoor activities, but I also do not want to rush the healing process. The gym helps with my anxiety though and that is why I am stuck at a cross road. I know the recovery road will be slow, and I may never be back to where I was, I just hope the people in my life accept me for that. Thank you for your encouragement and I hope your path continues to improve for you!

Kacee

I am also in the early stages of PCS as I am just passing my third month. I understand your frustration as I have had numerous concussions that I have been able to just shake off. Now however its different. I wake up nauseous every day, get dizzy, light headed, lose track of time, find it hard to concentrate, find my reaction has slowed, and my emotions have severly changed. I get extremely anxious, depressed, and anti social. Not being able to participate in sports has also taken its toll on me. I have found this site to help me as every time I have an anxiety attack about the future, I read these stories of people who have been experiencing PCS for years and are okay. Even if I never fully return to normal, I am coming to terms with the fact that I can make this make me a better person or a worse one. That is up to you. When I get on here and vent, it helps with the emotional toll, and for the physical I take everything day by day. I am trying to rest my best, recconect with my faith, and understand this is out of my hands, but I can help the healing process. Keeping a journal of my symptoms each day has really helped me as progress isnt daily but rather monthly. When you are feeling down, know that you are not alone! hope this helps, stay strong

Kacee

TBI guide?
 

Where do I find a copy of the TBI guide?

searching for advice
 

I am a 21 year old suffering fro PCS and am looking for advice

I hit my head about 3 months ago now and the recover process seems to be a roller coaster ride.

At first, I didn't know I was injured so I continued with my life and pushed myself far too hard. After I relized something was wrong, I was finally able to take a step back and rest. Now I have been resting for about a month avoiding working out or anything to strenuous. However, I have been using the TV and computer a fair amount to keep me occupied.

I know youre suppose to avoid these things in the first 2 weeks, but since my recovery process was delayed should I attempt to step bak and cut those out to help me heal? Or try and progress? I am able to do light workouts here and there but try to rest as much as possible.

I guess since I had a late start to the recovery process I don't know if I should start over the healing process or continue to progress. My symptoms are not triggered when I work out or use technology, but they do come back on randomly and strong and I feel as if I am starting back from square one.

I would appreciate any advice on how to handle the recovery process

I probably wish I didn't listen to the first physician I saw at the ER.

This is what I was told

"Concussions are very common, and heal very fast, try to work your way up and if you get headaches stop, exercise is fine but do not hit your head hard again"

I went home and played soccer for a few hours, felt fine. Hung out with friends, wrestled a bit, fine.

Next day I wake up with a horrible headache, and that was it.

I will probably never be able to completely trust a physician again.