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Post Concussion Syndrome
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Post Concussion Syndrome

On Jan 3rd, I suffered a severe concussion when I fell and hit the back of my head. I developed dizziness, ringing in the ears, bad headache, unsteadiness and nausea.
Its now going on 2 months and I'm not getting any better. My Neurologist said that I have Post Concussion Syndrome.
What's the difference between concussion and PCS and when will it go away?   I can't even drive, or work and to even go to a store, I'm afraid to go without someone with me. I have walked into walls and doors and to go down steps is hard for me.
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Avatar_dr_f_tn
Hi there. Concussion is a brain injury resulting in a bad headache, altered levels of alertness or unconsciousness, affecting memory, judgment, reflexes, speech, balance, coordination and sleep. Symptoms include altered consciousness, confusion, spaced out, nausea, and seeing flashes of light. Post concussion syndrome is a set of neuropsychological disorders including thinking, behavioral, and emotional disorders caused by traumatic brain injury or concussion. Post concussion syndrome can result from actual physical damage or injury to the brain and can become torn or sheared, crushed or displaced, can swell, bleed and shut down. You could use acetaminophen for headache, eat a light diet, light activity around the house, avoid alcohol etc.  Concussion with brain damage needs hospital care. Full recovery is expected in an uncomplicated concussion. The symptoms may continue to occur weeks to months later. Take care.

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Avatar_m_tn
I had a mild Traumatic Brain Injury 1 year 9 months ago and PCS followed.  Still suffering with all the symptoms you mentioned and it did get better only slightly.  I cannot go to work still and mostly disabled with terrible symptoms of dizziness, nausea, fatigue, head heaviness, loss of the taste and smell, tinnitus etc.,  

I cannot go to store, restaurant and even talking over the phone makes me dizzy and headachey.

I went to several specialists, tried many meds, theapies and most of them didn't work for me.  As Dr. Sharma mentioned if it is uncomplicated concussion then you can expect almost full recovery.  First find a good doctor who knows about TBI/PCS since lot of doctors don't know what to do with PCS and is poorly understood.

There are so many alternative therapies to try and I am still trying but since yours happened only last month you can wait out.  If nothing changed after 6 months then you have to start your rehab.

I wish I lost a leg or hand than go through this.  If you want to know what therapies I tried let me know.

good luck.
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Avatar_n_tn
I am sorry you are suffering so much. Both my sister and I ended up with PCS (which by the way is post concussive syndrome for sweetangel who asked if there was a difference.) I have migraines and hypersensitive nervous system because of my PCS and my concussion was in 2003. My sisters was in 1993. One thing that has helps me is staying away from certain foods such as gluten (wheat, rye, barley), dairy, nitrates/nitrites (processed meats), msg (now call unami), high fructose corn syrup (now called corn sugar) any artificial sweetener, and certain nuts. For increasing concentration levels my sister played games such as rush hour, by binary arts.

I also saw a neurophyscologist and he prescribed neurofeedback
http://www.eegspectrum.com/IntroToNeuro/
(and this also helped with my PCS)


One thing that many missed was that if you have a concussion then most likely you also have whiplash, which can also mess with the central and peripheral nervous systems. This was missed by my sisters doc and my whiplash was caught but not treated properly. We now both see an excellent chiropractor that has helped us more than any amount of physical therapy.

I hope this helps and good luck to you both,

achilles2
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Avatar_n_tn
Sorry I miss reread your post about what is the difference between PCS and concussion. Basically PCS is chronic symptoms from the concussion, and a concussion symptoms are considered acute.
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Avatar_m_tn
Thank you very much for your suggestions.  You and your sister suffereing for very long time and definetely brave.  I live in Washington D.C. area and I did tried neurofeedback.  I The psychologist who treated is very well known to treat TBI patients and she is very good understanding my issues too.  I was able to go for around 15 sessions.  It did help somewhat may be to bring down my anxiety.

My main issue is persistent dizziness,  feeling heavy headed (not headache) and fatigue.  All these symptoms are relentless and pretty much disabled me.  Most frustrating is I don't know how my day will be when I wake up.  It can be horrible or terrible.

You are right about whiplash.  I do think that may be causing lots of problems and PT helps a bit.  I am thinking who should I go to next -   Prolotherapy, Chiropractor or Craniosacral therapist.

If I see any progress I sure update.
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Avatar_n_tn
I have prolotherapy for my wrist-- it was also injured in the accident. It did help some but I will tell you the injections are painful. I cannot imagine how they would feel in the neck. I have had craniosacral and did get some relief so that it worth looking into. As far as a chiropractor the one I am seeing now is my fourth and definitely the best. I wish I knew of one for you but I am in the Midwest.

good luck
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Avatar_m_tn
Thanks again for the info.  Seems like you have pretty good knowledge about all this.  Unfortunately I was expecting doctors suggest me some of these therapies based on my symptoms but most of them I have to find out myself.

So you were able to find a good one after 3 tries.  I went to 2 chiropractors and one refused to treat me and other chiropractor not even positive about the treament!

Prolotherapy seems like painful treatment but some people had good success.  I hope there is pain and some gain.  One doctor in Dr. Greenberg in NJ seems to be a guru and treated lot of people with concussion/whip lash (he himself had headaches etc., for about 3 years before tried Prolotherapy).  As an MD himself, he went for alternative therapy for a cure.

One thing I learned is to be cautiously optimistic (non-profit Brain Injury Services member in VA gave this advice - they are very good in helping people in all aspects).

Regards.
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Avatar_m_tn
Thank You for answering my questions. I just wish that someone could tell me how long this Post Concussion Syndrome will last, because I am getting very frustrated with the dizziness headaches, ringing in my ears,the unsteadiness.
I don't think my doctors know what to do for me anymore.On the 30th I'm going to try another physical therapist , one that works with people who deal with neck and head problems.
Now some of my family want me to see another neurologist for a 2nd opinion, in one way I want to but then I trust my neurologist that I'm seeing now. So I don't know what I should do right now,
Should I get a second opinion?
Another symptom that I'm experiencing is hard to explain but my head feels like its heavy,is that another symptom of post concussion syndrome to?
I feel so alone because I don't have anyone to talk to who knows what I'm going through,its hard to talk with my family or friends, because they have never gone through something like this. Sometimes I feel like maybe I'm loosing my mind or being punished for something bad that I did.
What scares me is, what if this pcs doesn't go away, or if I can't drive car or go back to work for along time.Then what am I going to do?
Can a person file for disability then, or doesn't something like this qualify for disability?
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Avatar_m_tn
  I am still suffering with my PCS symptoms, they don't want to go away.  I still have dizziness, lightheadedness, my head feels heavy, nausea and the unsteadiness and balance when I walk.
  Last Wed. I went to a new Physical Therapist, and she did this test on me where I had to wear these goggles on my head that records the movement of my eyes. It's suppose to show if I have something called nystagmus when she put me in these different positions.
  It did show that I did, but she also thinks it could be my neck too. I'm not sure about that.
  What kind of therapies or treatments did you go through? Do you still have PCS too yet? I can't even drive my car or work right now because of this damn PCS!!!
  When will it get better, or go away??
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Avatar_m_tn
I still have most the symptoms you have.  Most disabling is the dizziness (not vertigo) and gets worse in stores, restaurants or when people around and talking.  With dizziness I get facial pain, forehead pain tired eyes, overall flu like fatigue  etc.

Seems like when head injury happens there goes neck injury too for many people especially hit in the back.  Most cases neck injury goes undiagnosed seems like since it doesn't show in MRI.  I seriously think I was not diagnosed properly even though I did tons of tests including lumbar puncture.  So don't get disappointed and if it in the neck there are many treatments you can try.  

For me right now Trigger Point therapy, Myofascial pain release sure helps.  I am also going for Cranio sacral therapy and can't say it helps.  I have been going 2 or 3 times a week for the past 4 months.  Only thing is the good effect doesn't last long but lately I see some progress.

I will be also seeing a chiropractor next week and thinking about TMJ doctor too (yes TMJ can cause lot of symptoms we are suffering from).  In a month's time I have an appointment with Physical Rehab and Medicine MD who was recommended by my PT in case if nothing works I can try shots in neck and occipital region (Prolotherapy, BOTOX, trigger point etc.,)

I know what you may be thinking.........Exhausting.  Yes it is.  I have been running around for about 2 years and so I like to share this information with you to go after PCS in case you don't want to wait.  Just consulting a Neurologist may not be enough and at this stage you sure can try some therapies I mentioned which may give you relief.  

To answer your question when will it go away - Sorry, no one can answer.  In the beginning doctors told me 2 months and 2 years gone by.  I seem to have Neuro muscular issues which won't get cured unless properly diagnosed and treated.  Your case may or may not the the same but all I can say is keep trying.

I keep you posted if I see any dramatic change with any treatments and I don't expect it overnight.  PM me if you wish.
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Avatar_m_tn
Thank You for answering me back. I'm so sorry to hear that you have been suffering with PCS this long. I'm going on 3 or 4mths (depends on how you figure it out) and already feel like I'm going to go crazy any time now.
I can't live by myself right now, I can't drive my car or even work and it *****. The worse part of this whole thing is that I can't go to the mall or even Walmart, which is what I like to do alot. I tried and it was a disaster, because I almost passed out there. So I no longer even go any place except to my therapy or Dr.'s appts.
It seems like everyday I wake up with a headache everyday, and when I have a headache it makes my dizziness and light headedness worse too.
You know the only thing good out of this nightmare is that I lost some weight lol. However didn't intend to do it this way though.
If this new physical therapist can't help me after going to her for awhile, then my neurologist might send me to the University of Minnesota for another opinion,
I just don't know what to do or where to turn to anymore, because people I;ve talked to some of them tell me that it would be a waste to go there. The doctors here in Fargo, ND are just as good as the doctors at the U of M.
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Avatar_m_tn
I stopped going to big stores, mall, airports for about a year and a half.  I live by my self with some assistance but still have to to go for some shopping.  If I go I get in and get out quickly.  Strangely for me when the car in motion I feel little ok.  Only crowds, restaurants etc., brings me dizziness and headaches.  

I have dizziness and headaches every single day for the past 2 years.  It sets in at 10:00 am and stays with me until I go to bed.  My days are horrible or terrible.  Except when I go for massage therapy then my days are just ok.  

I can write a book what all I tried but I don't want to overwhelm.  One medication helped with dizziness but I warn you this medication can be very addictive.  Many people as a last resource they go for it.  I found by change (doctor prescribed only 2 pills since I told him I feel claustrophobic in MRI machines) and it is XANAX and I felt relief from dizziness/headaches.  I was even able to tolerate stores if I take more dosage than prescribed.  

Then it stopped working effectively since my brain got used to it.  It is similar to alcohol and affects the GABA chemicals in brain and makes your brain very relaxed.  I took it for a while every day and I can say it saved by life.  I quit it a month ago.  Again I warn you is very addictive and many people go through terrible withdrawal symptoms when they quit or unable to quit.  I too went through and was able to manage it with massage therapy.

You can also check out the University of Buffalo concussion clinic and can get in touch with Dr.Leddy.  His protocol is controlled exercise without getting the symptoms.  I have been doing it for 4 months and it helps may be over all wellness.  When I started I did only for 3 minutes and thought I was going to pass out.  So DON'T DO IT unless some one watching you and get in touch with Dr. Leddy.

Not sure what U of M can or cannot do.  I went to 2 hospitals and many specialists in Washington D.C region and nothing came out of it.  you are only 2 months so there are high chances you may be ok with few months so keep your hopes up.  If you see no progress after 6 months then you really have to go after rehab.
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Avatar_m_tn
  I have started seeing a new physical therapist in Fargo who works with the head and neck, and she thinks that some of my pcs symptoms could be coming from my neck. I'm just not so sure of that, but I will try anything right now.
  My neurologist called me this morning to see how I'm doing and I told him that not much has changed, still have the bad headaches, nausea, and dizziness and the unsteadiness when walking. Well he increased the Topamax that I'm taking for my headaches and also said said that they are still waiting to here from someone from the U of M yet.
  I just don't know if it's going to be worth it going all that way and then they don't do a thing for me, then it will be another big let down for me. So, I don't know what to do anymore but how can I keep going on like this. Howw are things going for you?
  I'm just taking it day by day, my neurologist also said that my B12 levels were low but what would that have to do with my pcs. He wants to check it again though.
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Avatar_m_tn
  Well it's been 3months since my accident and I still have dizziness,ringing in ears,unsteadiness when i walk, nausea,headaches,light and sound sensitivity and my head feels heavy.
  My doctor is puzzled and doesn't know what to do for me anymore, he gave me topamax for my headaches, phenegran for nausea, celexa for depression and amitriptyline for sleep problems.
  I'm going to go and see a new physical therapist who works with head and neck, but other then that that is all that my doctor is doing for me.
  Am I still suffering from Post Concussion Syndrome or is it something else, and is there something else I could do or try to get rid of these symptoms???
  Please let me know!!!
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Avatar_m_tn
I have been taking B12, B6, Folic acid, Biotin etc., for about a year and half consistently.  I don't think it did anything for my dizziness, headches, fatigue, nausea etc.,  But for some they had some good success and if your B12 you sure must go on a supplement and some even go for shots if severely deficient.  I hope your doctor checked all the hormones - thyroid related since that may cause fatigue etc.,

You said your doctor is puzzled.  Believe me many doctors are puzzled with  Post Concussion Syndrome and its symptoms.  It can trigger anything and everything.  Even digestive problems, leg pain and all sorts of symptoms.  Not sure why your doctor prescribed both SSRI and tricylics.  If sleep is your problem try natural supplement Melatonin.  I have been in the process of quitting amitriptyline (very low dosage 10 mg) and still it proves to be tough for me.  To compensate for sleep loss I take Melatonin and sure puts me to sleep and a good one as well.

I still have all the symptoms you have and it fluctuates between terrible and horrible.  I never thought neck can cause lot of problems and doctor ignored my neck stiffness complaint.  Nothing wrong in trying it bcuz no side effects and it hurts you can quit.  Most of the time after my neck/massage therapy it is less severe than terrible.  Next day everything comes back up and I suffer.  

Don't go with any expectation with any doctors/hospitals/meds/therapies.  I learnt the hard way.  You should be optimistic and the best approach is to be cautiously optimistic.  


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Avatar_f_tn
I'm suffering from everything you are:( it ***** and I know I'm 2 months deep into pcs. If you ever need anyone to talk to I'm here. I have everysingle sympton you do.
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Avatar_dr_f_tn
8. http://www.medhelp.org/posts/Neurology/post-concussion-syndrome/show/1530529
Hi there. post concussion syndrome is a complex disorder with a combination of symptoms like headaches and dizziness lasting for a few weeks and at times months after the injury that caused by concussion. Concussion is a mild traumatic brain injury usually occurring after a blow to the head. Loss of consciousness isn’t required for a diagnosis of concussion or post concussion syndrome. Post concussion syndrome occurs within first 7 to 10 days and until 3 months. Symptoms are variable including dizziness, fatigue, irritability, anxiety, insomnia, loss of concentration and memory, light and noise sensitivity, headache varying from a tension type to cluster headaches. You need to consult a neurologist immediately. no single test can prove the syndrome and the doctor may ask for a MRI scan to detect brain abnormalities, ear pathologies need to be ruled out since a lot of dizziness is there and psychiatrist to rule out anxiety and depression. Hope this helps. Take care.


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Avatar_n_tn
Sweetangel--By all means get a second opinion it never hurts and if you can see if you can find a good neuropsychologist-- they typically know more about how this all effects the brain than a neurologist. You said U of M-- are you talking about Montana? If you are willing to go back to Montana I know a great group of neuropsychologist--
http://www.montanaminds.com/

The doctor I saw was Dr. Velin I do not know if he still treats adults, but if he does not, he would know the right person in the group for you to see. PCS is horrible and I hope that you get the right help you need.

SamPCS--
Have you ever looked into sensory perception disorder (also called sensory integration disorder)? It could be that the PCS has brought this on. I believe I have always had it to some extent but the concussion made it much worse. I hate crowd noise-- it gives me a migraine and some anxiety, my sister cannot even tap her fingers without it causing me pain. There are other sensory issues as well that the concussion caused.

I hope you are both getting what you need,
achilles2


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Avatar_m_tn
Thanks for the suggestion.  I do have sensory disorders.  My vision is weird (not sure how to describe) and sure contributing to my dizziness.  That is why I went for vision therapy but no good results.  Been to specialists and all they do is order tests which shows nothing.  Most of the doctors cannot think out of the box and they just follow the normal procedure.  When it comes to TBI/PCS medicine is in dark ages.  I cannot speak of other brain disorders.

I hate going to Neurologits, ENT specialists any more.  All they give is anti-depressants when I keep complaining about dizziness, aggravated in crowds, stores etc., which they never heard of seems like.  For e.g.  one Neurologist kept telling me I have nerve pain each time I see her !!!   Another neurologist suggested to treat in holistic way but she don't have any suggestion.  If I tell them sensory perception disorder they sure stare at me.  Not sure where should I turn to and I live in Washington D.C. metro area.  How sad is that?
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Avatar_n_tn
I understand not wanting to go to specialists. I have a nerve problem with my foot and saw so many specialists, went to a pain clinic, etc-- all they said is I have nerve pain-- duh, and wanted to put me on different drugs. (Ironically my foot was the reason I found the chiropractor I am seeing now. He said I had a chronically sprained ankle which has messed up the mechanics of my foot and was pinching a nerve. Finally I had answers and my foot is doing much better.)

Have you tried a neuropsychologist, a good one has a whole different approach (treating the body as a whole rather than in parts) than a neurologist and they cannot prescribe drugs. Also to find someone in your area that may be able to help w/the sensory issues try contacting the sensory processing disorder foundation they might be able to point you in the right direction. Here is the webpage with their contact info:
http://www.spdfoundation.net/contact.html

(Be sure to explain to them that it is for you and not a child. Usually children are diagnosed with this but many adults come across this and are able to put the pieces together about their own lives and seek help. So they now know there is another population that needs help)

Here is another page that will help give more info about sensory issues.
http://www.sensory-processing-disorder.com/


I hope this helps,
achilles2
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Avatar_m_tn
Thanks much.  I sure add to my list of things to try.  My new doctor wants me seriously do the vision therapy.  I went to Psychiatrist and Psychologist who understands what I am going thru and they also want to put me on some weird meds (Abilify - damn).  

But not to neuropsychologist and may be some day.  I heard they do some intense testing and all that and I am not in a condition to go through that.  Since driving is a big deal for me now and had to cancel appointments many times because I have no idea how I feel every day (some time every hour).  Even when I am not horrible  I quickly go out and back in 15 mins or I feel like I faint.  People were helping a lot before but they all got tired.  I have no one to drive me to places anymore.  Terrible way to live.

Just curious - did you go through PCS in your life?  you seem to know some good knowledge on this.
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Avatar_n_tn
Yes I did go through PCS and so did my sister. I now fight migraines, sensory issues, and being cold. The one thing that my sister hates is that her sense of taste has diminished greatly. My PCS was diagnosed by neuropsychologist -- yes they do some intensive testing, it was about four hours long (of course I did get about 30 min for lunch). He also had me do some neurofeedback which also helped.

I have also learned that there are now certain foods I have to avoid-- any artificial sweetener, msg (now called umami), gluten (wheat, rye, barley), dairy, cashews and Brazil nuts, high fructose corn syrup (or corn sugar) and nitrates/nitrites. I also limit my caffeine intake. All these will trigger a migraine and nerve pain. It has also helped to go to a great chiropractor who started treating my neck.

As far as amblify here is some info about it, after reading the info I do not understand why your docs would want to put you on it.
http://www.drugs.com/abilify.html

Keep fighting for your answers,
achilles2

PS I hope you can find some people to help you with rides. Can you call a church?. My church was great in finding people who give me rides (many times the appointment was 1-2 hours away) when I could not drive because of my foot.
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Avatar_n_tn
Also I forgot has anyone checked your b12, thyroid, and vit d levels? If so did they tell you the results or did they say-- "it is in range". Because the range for b12 starts at 250 yet my friend's neurologist told her that she has seen patients with neurological symptoms with a b12 in the 500's. (I try to keep mine near 1000). Also the thyroid ranges are off. Most ranges are 0.4-4.5 but doctors who are up to date on the research know that if they have a patient with symptoms and the TSH is around 2.0 then the person has an unbalanced thyroid. I was diagnosed with a TSH of 2.35. Also more than TSH needs to be tested there is also free T3, freeT4, and thyroid antibodies. The range with vit d is also off most medical personal that I have talked with like it to be near 50 (not just above 32). I was diagnosed as deficient with a level at 17 and prescribed 50,000 iu/week. I now take 4000iu/day to keep my levels near 50.

achilles2

PS if want more info about the thyroid a great book (It does not have a lot of medical jargon and is easy to read) is "The Thyroid Solution." http://www.amazon.com/Thyroid-Solution-Revolutionary-Mind-Body-Program/dp/0345429206

The doctor also has a good website at http://www.thryoidwellness.com
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Avatar_m_tn
Oops!  I forgot the check the previous messages.  You did mention about PCS.  Asking a church sounds like a good idea.  I might do that.  I had some bleeding on the brain and then PCS followed after 5 weeks.  I know the Neurologist is going to say that because I already googled before the appointment and she did the same.  I cannot go through neuropsychologist  tests since I cannot even sit in a doctor's office for more than 45 mins or feel like fainting, tired and on my last visit I had to cancel and walk out because they made me to wait for 30 mins.  Also TBI made me claustrophobic and sitting in small doctor's office (where they leave you and close the door) is a night mare for me now.

Regarding gluten I recently found out cutting them greatly helps my stomach.  so I go for non-gluten as much as I can.  all those nuts etc., I didn't my stomach hates.  For me my stomach gets upset and i get nausea.  Still learning what are the things I should avoid.

I went to psychiatrist and i guess that is what he prescribes for his patients i think.  as you know more they prescribe these drugs more they get paid from drug companies especially with these newer meds.  nowadays any medicine they prescribe and say it as off-label use.  I personally know 2 other TBI patients got prescribed Abiliify and later on they quit after few months luckily.

I did all the tests you mentioned so far 4 or 5 times and probably do it again next week  Also one Endocrinologist tested whole lot of things.  I even did Lumbar Puncture and tool 4 vials of clear spinal liquid and tested everything under the sun (including LYME).   Only thing it showed is minor Vit D and I took 50,000 IU / twice a week.  All it did was to upset my stomach more and so I try to get it naturally now.  I do take B-12, B-6 everyday even though I am not deficient.
Few things which helped was Xanax, Neuro-feedback, Meditation and myo-facial pain release.  So my guess is my brain is not calm and most of the time agitated even though I think I am calm.  One thing I don't quite understand is I start feeling better after 8 pm until I go to bed most days.  All my symptoms goes down and I even have lot of energy by the time I go to bed.  I hope some one can think out of the box and so far I have no luck with these mediocre specialists.

Thanks for all your suggestions and you sure doing all the things you can to keep up.
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Avatar_n_tn
Good luck with your new doctor, please let me know if you do vision therapy. I am curious as to what it entails. You were taking a lot of vitamin D especially if you deficient was minor. Why did they not give you like 2000iu/day? I hope you are not using sun block when you get it the vit naturally.

As far as specialist I see my neuro's P.A. in a couple of weeks, to discuss getting a diagnosis and treatment for sensory processing disorder. I am hoping she will not look at me like I have two heads. But if she does, my sister knows someone who will look for what I need. He just wanted me to try my neurologist first.

I hope you can find some good specialists,
achilles2
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Avatar_m_tn
I sure let you know if I start vision therapy.  I rather wish I can go to Debby L. Feinberg at Vision Specialists of Birmingham.  She has some unique prism lenses and helped lots of TBI patients.  No therapy or anything - just specialized prism lenses.  I cannot take a flight now so I have to wait.

I don't take Vitamin D now.  My symptoms are sure not because of some Vitamin D deficiency.  Wish it is that simple.

Good luck with your neurologist.  Sorry to sweetangel1121.  Didn't mean to hijack this thread.  Let us know how you progressing or coping with (or not)?
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Avatar_n_tn
Sam,

I know that right now it would be very difficult but have you ever thought about going to the Mayo Clinic in Rochester, MN. They have some top notch neurologist and you do not need a referral. You can just go this page and describe your PCS, TBI and such if they think that you "interesting" enough they will get you in. Just be sure to have your scans if you ever decide to try. Plus we know of a place that you can stay that is very quiet and the people will pick you up at the airport and take you to your appointments. It is a house owned by the Mennonites, and they see it as their ministry to those who go to Mayo. The cost is however much you can afford. (If you smoke they do not want smokers since they have people that are medically fragile that stay at the house.)  Also I was not telling you to get Vit D supplements I was just shocked at how much they told you to take.

Sweetangel how are you doing, did you ever get the help and answers that you were searching for?

achilles2
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Avatar_m_tn
Thanks again for all the information.  You are right, I am totally not ready for a flight now.  If I get ready all I want to try is the vision specialist in Birmingham first and Stem Cell Therapy (out of the country) next.  My trust with Neurologists is very low now.  Most of them are trained to think only one way and don't want to try different things.  I like to try John Hopkins which is 1 hour away from me - even that if I can make it. They do have the best Neurologist department. As you know it cannot be one trip and I may have to go for several trips.  PCS is a tough one seems like and millions suffer - including NFL players and even commit suicide if you watch the news.

Again thanks and if at all anything good I sure let you know.

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Avatar_n_tn
I saw the neuro's PA today. She was nice and then said they do not do evaluations here, I need to go somewhere else and get a cognitive behavioral eval. I was not happy with that answer. I know that for the most part occupational therapists are the ones who do the evals for sensory processing disorder.

So I talked with my friend who not only has sensory processing issues but is a special ed teacher. She recommended that I get a second opinion so that is what I am going to do. In August I see another neurologist. Hopefully now I am on the right path to getting the services I need.

I hope that you are having more success than me,
achilles2
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Avatar_m_tn
Hi there. I am 14 years old, and i recieved a concussion playing soccer. I jumped up in the air for a header, and my opponent pushed me onto the rock hard turf.  I fell on the back of my head, and got knocked out. I also spranged my neck, and got some serious whiplash. I have now had this concussion for 4 and a half months.  I have done acupuncture, chiropractic work, massage therapy, and got glasses because my vision was affected. I am experiencing pressure and congestion all over my head, light headedness, throbbs of pressure throughout my head, headaches, dizziness, and fatigue.  I also just don't feel like myself anymore, like somethings off.  I also play school basketball, club basketball and track, so having my sports taken away from me for this long makes me depressed.  At first, my doc told me to do absolutely nothing for two weeks, but i got even worse! My life is always busy, so when that stops all of the sudden its tough.  I was bored out of my mind and i felt like pulling my hair out.  Now my doc recommends light running and activities, but i heard that it slows the recovery, which is the LAST thig i want.  I feel like crying all the time because when you are this athletic it ***** without the sports and especially your team.  I just need help because im losing hope.  But i think many of my syptoms (symptoms) are caused by my whiplash and spranged neck, so i was wondering what chiropracter you and your sister use becuase maybe they have another branch where i live.  Thanks so much for you time :)
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Avatar_f_tn
Hey there. It's "ilovetoplaysports" again, but i just changed my email, so i had to repost. I added a few things... so please read. I am 14 years old girl, and i recieved a concussion playing soccer. I jumped up in the air for a header, and my opponent pushed me onto the rock hard turf.  I fell on the back of my head, and got knocked out. I also spranged my neck, and got some serious whiplash. I have now had this concussion for 4 and a half months.  I have done acupuncture, chiropractic work, massage therapy, and got glasses because my vision was affected. I am experiencing pressure and congestion all over my head, light headedness, throbbs of pressure throughout my head, headaches, dizziness, and fatigue.  I also just don't feel like myself anymore, like somethings off.  I also play school basketball, club basketball and track, so having my sports taken away from me for this long makes me depressed.  At first, my doc told me to do absolutely nothing for two weeks, but i got even worse! My life is always busy, so when that stops all of the sudden its tough.  I was bored out of my mind and i felt like pulling my hair out.  Now my doc recommends light running and activities, but i heard that it slows the recovery, which is the LAST thig i want.  I feel like crying all the time because when you are this athletic it stinks without the sports and especially your team.  We are also the number 1 team in the state, and we are going to regionals. I've already missed a tournament in California because of the concussion, and another tournament is coming up this spring break in virginia, and i want to go.  I just need help because im losing hope.  I'm also scared that im going to get another concussion when i come back, and i would be devistated. But i think many of my syptoms (symptoms) are caused by my whiplash and spranged neck, so i was wondering what chiropracter you and your sister use becuase maybe they have another branch where i live.  But i think that i just need to hear that what i am going through is normal and people have been going through the same thing (even though that is bad news and i wouldnt wish a concussion on my worst enemy) Thanks so much for you time :)
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Avatar_n_tn
Light running might help-- it will increase blood flow to the brain.

You might want to try coconut oil  while you are searching for answers if taking coconut oil (I think about 2 tsp or 2 tbs per day it says in the article) might help. I say that because there is a doctor who is an MD who is treating her husband's Alzheimer with it and it is helping. Here is the article that mentions that there are researchers looking at coconut oil to help nervous system disorders such as MS and even ALS.
http://www.coconutketones.com/WhatIfCure.pdf

here is her blog:
http://coconutketones.blogspot.com/

and here is her website:
http://www.coconutketones.com/

achilles2
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Avatar_f_tn
I was diagnosed w pcs from a head injury + whiplash/neck ijury, with symptoms persisting for past 7 months. My question is...Is there depession medication that won't affect sleep or make me feel like a zombie the next day? So far tried effexor and celexa with bad results.
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Avatar_n_tn
You might want to look into Doxapin. This a tricyclic anitdepressant. So it is an older drug. Or other tricyclic antidepressants. What is nice since these drugs are older they are much cheaper. (The best time to take these drugs is before bedtime.)

Someone I know that she likes it. Her doctor started her at 10mg and then increased the dose every 4 to 6 days. Her max dose is 100mg/day but you can go higher I think the max is about 150mg/day.

I hope this helps,
achilles2

P.S. Can you find a good chiropractor to treat your whiplash?


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Avatar_f_tn
thank you so much for your time. i didnt recieve the notification in my inbox, so that is why i havent replied! i still have my concussion and ive had it for 6 months, but i will definately try this out. again thank you for your time, it mean the world to me!!!!
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Avatar_m_tn
can you tell me what alternative natural therapys are available?
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Avatar_m_tn
There are very many therapies.  Right now I am doing craniosacral therapy, myofascial pain release and some healing touch.  It sure helps to get rid of symptoms but effects doesn't last longer.  

I tried Vision Therapy for 8 months (once a week) but didn't see much benefit.  They are very good but my brain didn't respond or I don't need it.  One thing helps me is I got a training prism lenses which helps me somewhat.

There is Neurofeedback, Biofeedback, Acupuncture, acupressure, Trigger Point therapy, upper cervical chiropractor (not the normal ones which can be problematic), HBOT, TMJ therapy, vestibular therapy, even mild exercise if you can etc.,

You can consult a Naturopath, try Homeopathic medicine and all B12, B6, Vit D etc., as achilles2 pointed out.  If you get overstimulated in outdoors try wearing sunglasses and earplugs.

My Neurologist even recommended Tai-chi and dancing (yeah right!) for my balancing issues.  
It is all based on your symptoms and trials.  Unless we try we don't know it works or not.  Sometime you have to get the help from medicines too.  I always have something on the list to try if the current doens't work out.  Next for me is TMJ specialist and shots in the neck for head pain.  It is a long road to recovery and still going on...............
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Avatar_m_tn
There is a hope and I am going through the same. I am in my 3rd month and I can see a light in the tunnel..be strong and patient and believe you will get better and you will...but just with baby steps...and don't get discouraged if you have a good day and then a bad day, you are always going forward...like you are climbing a ladder...sometimes you are on the step for a bit and then you climb again...! warm regards from Germany
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Avatar_m_tn
had 15ft 4x4 wet post fall on my head from 8ft,cut head and concussion..I feel awful, constantly sick,headache,stiff painful neck,numbness in face,confused,spaced out etc terrible!! 2 weeks ago this happened, cant remember much just blackness then partner calling me and feeling blood on head and face ..went hospital but didnt stay [my fault wasnt feeling right but couldnt handle the wait}then went back 2 days later had ct was clear on day 10 but still after 2 weeks feel so ill , I know its early days but pray doesnt go on much longer the pressure in my head driving me crazy, I am a woman 50 years.
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Avatar_m_tn
I have had repetitive concussions for the last 18 months.  I banged my head while entering inside my car on my way to the gym.  I took two spinning classes back to back afterwards.  I felt weired after that, went home and slept it off till the next day.  By the third day I had all the symptoms of a concussion plus severe tremors that would last for 3 to 4 minutes, went to the emergency room, had a CT scan and it was normal.  It took me 3 months to feel better.  I resumed my spinning classes even though I had felt tired and not my usual self.  5 months later, while I was talking a walk at the waterfront, and while sitting down on a high backed bench the back of my head lightly hit the back of the bench.  I got all the concussion symptoms again for 5 weeks then I got better.  4 months later I was talking to a parking attendent without realizing that I was standing underenath the parking gate.  It came down on the top of my head, but again lightly it was not a heavy blow.  it took me 6 weeks to get better so I go grocery shopping with a friend and she accidenlty hits the left side of my head with her purse while grabbing it from the back seat of the car.  It took me another 6 weeks to get better.  I had a normal MRI onn the brain but the MRI on the neck showed three bulging discs and stinosis.   I don't know what I have, I  have seen 4 neorologists up till now and no one knows what I have.  My brain has become so sensitive now to the lightest hit.  Now I have the symptoms again because my hand touched my mouth with a little bit of force  while taking some pills.  

I live in Washington D.C. too and I am very disappointed at all the neorlogists that I have seen.  No one seems to know why I am having this severe sensitivty.  I am thinking of taking HBOT therapy.  Have you ever tried that?  IF yes, where can I get that kind of therapy.  Also have you ever tried to do SPECT scans?

Does anyone out there know why my brain is that sensitive or have a similar condition?  
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Avatar_m_tn
LENS neurofeedback has helped my concussion symptoms.  I had similar injuries to the point where I couldn't drive because the vibration hurt too much.  I am much better after 15 sessions but still need more as I don't feel "normal" yet.   I am hopeful a full recovery is possible with the lens treatments since I have improved a lot so far.
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Avatar_m_tn
I was just diagnosed with this and my brain injuries came from an abusive relationship in which I was punched in the head numerous times during a 5 year relationship and never taken to the hospital to be treated. Nobody could ever tell me all these years. why I was forgetting things, getting dizzy out of nowhere lack of concentration and slurred speech. Now 20 years later I have finally got a diagnoses. I guess without meds it doesn't get any better. And now that I am on the meds I feel spaced out. I was also diagnosed with seizures. I am just hoping somebody can help me function in a normal way. I am only 42 and have 3 kids and a husband to take care of. Just hope it doesn't get any worse :(
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Avatar_m_tn
My Husband is almost 3 year into Mild TBI (post concussive syndrome) Have you heard of Vestibular therapy? It is a strange concept but made a large difference in my husbands quality of life. Also he has musician earplugs that decrease noise level and help with not getting overstimulated in public. He still has a difficult time in public and barely drives too but I am grateful he is not driving when he know it would not be safe. One big thing we did is also take out all the fluorescent bulbs in our home. Times when you get overloaded take a break and drink ice cold water the brain seems to like the cold water. We are also careful to not let him get dehydrated. The biggest thing we learned is not all neurologist are specialists at TBI when we switched it made all the difference. Any other questions feel free to ask. if we don't help each other we've suffered for nothing.
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Avatar_m_tn
I have had several, possibly 10-12, mild to moderate concussions over my lifetime. I have PCS that seems to come at intervals on a 2-3 month basis. Is that at all normal? It is like it builds up over time and then just lays me out. The really big problem is when it really hits me hard I 'black out' to the point there is time missing from my life. It's very frustrating and scary. I am starting on cyprexa today. I have had MRI and CT scan which shows the damage to the brain and neck. I have ataxia and bppv, which probably lend itself to further injury. Do you have any further suggestions shy of wearing a helmet full-time? I have headaches, tinnitus, weight loss(from a healthy 200 to 160), night sweats, memory loss, relationship problems, anxiety, panic attacks, loss of sense of smell and irritability. I tend to think people just don't get it, because I am not a complainer. It is plain and simply taking years off my life.

Dan
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Avatar_m_tn
I am glad its not just me and that there are others that understand the mystery of HEAD INJURIES AND SUCH.

I hit my head exiting a Van at work back in May and I am still experiencing Headaches, Dizziness, Nausea Irritability, Panic Attacks, No Sleep very little.

It sad when people do not believe you or a Physician cant seem to get to the bottom of it.

My CT SCAN say's everything is OKAY but I am in pain all of the time.

Low to medium grade headaches but one of the things that troubles me is the HEAVY HEAD/FOGGY FEELING especially when I drive.

I was sitting at a traffic light in my BUS stopped and I thought the thing was moving,,,,,, talking about embarrassing knowing someone saw me panicking.

I have not had any treatment/therapy if there is anything at all that can help.

I have taken so much Ibuprofen until my stomach hurts and my salavia sometimes taste like blood & Baking Soda,,, all of this from a HEAD HIT?

Tramadol makes me sick so I just take little bites to try and ease the pain.

By the way I didn't mention that now any light in my eyes drives me crazy.

I'm on LIGHT DUTY NOW but my employer has me sitting in the HOT SUN as part of modified duty but in my opinion I am much sicker out in the sun.

Cant believe people can be so cruel and insensitive.

I normally dont voice my opinions and feelings online but I needed to speak to anyone with possible remedies.
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Avatar_m_tn
Thank you for your positive, helpful post. I am in my second month of recovery from Post Concussion Syndrome. I have headaches, dizziness, nausua, and digestive problems at times. I am trying meditation, but sometimes I get scared anyway.

You are right. Some days I think I am improving and then I ride in a bumpy car and go back to square one. I do believe I will get better, so hopefully it will come true. I have done so much reading about concussion and realize that there are no easy answers.

My Mother's family was from Germany so it was nice to hear from you--sort of like family.

Wir wünschen Ihnen gute Gesundheit,

Lori
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Avatar_f_tn
Hi there, I also hit my head very hard exiting out of my van in January of 2014.

Doctors have been a joke.  I was dizzy, nauseated, and headaches, motion sick, and light sensitivity.  I had vertigo about 7 years ago which had similar symptoms so i went to Costco and purchased Meclizine which is a motion sickness pill you can purchase over the counter for less than 5.00.   I suffered for 6 weeks, taking medicine from my neurologist, that didnt work. After taking the chewable motion sickness pills for 5 days, the dizziness, nausea, and many other symptoms were gone!!!      
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Avatar_f_tn
Hi there, I also hit my head very hard exiting out of my van in January of 2014.

Doctors have been a joke.  I was dizzy, nauseated, and headaches, motion sick, and light sensitivity.  I had vertigo about 7 years ago which had similar symptoms so i went to Costco and purchased Meclizine which is a motion sickness pill you can purchase over the counter for less than 5.00.   I suffered for 6 weeks, taking medicine from my neurologist, that didnt work. After taking the chewable motion sickness pills for 5 days, the dizziness, nausea, and many other symptoms were gone!!!      
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