I looked into nystagmus, it seems to be more involuntary movements, whereas mine just happen as I move my eyes (although I do feel there is something wrong when I stare at an object, or even keep my eyes closed. I suspect this is just the fog). My time disorientation seems similar to yours, however I can put things in chronological order. For events that happened days ago however I have to think about it a little harder, but I can still remember when events happened. THe precipitating event/events are as follows:

I played heavy contact sororts all throughout highschool, but my first significant head injury came when I fell off a top bunk of a bed, while intoxicated and smalled my head ona concrete floor. I did not get knocked out (I don't think) but I vomited afterwards. The next day I was feeling groggy, but the following few weeks I felt normal. Then one day these symptoms I was describing instantly appeared out of nowhere (also developed a stutter, confusion speaking during this time). I went to the doctor, got a MRI, CT, IMPACT, and I few exotic others I don't remember, all came back fine. I also saw a neurologist, opthmologist, neuropsych, chiropractic adjustments, tested for lyme, sleep apnea, treated for depression and anxiety. Everything was negative so I just figured I had PCS and waited it out. During this time however I continued to drink and stayed active because I didn't know better and I was not feeling as bad as I am now. A few years passed I got off the antidepressant/anxiety because I either 1. got better or 2. got used to the way I was feeling and was content, I don't know which one, either way I was for the most part happy. Then a month ago I was at a bar and got sucker punched in the nose. I felt fine for a few days then the symptoms all of a sudden like a ton of bricks came back again. It was light at first then hit real hard after my flight the next day. It has been way worse than the first time as I remember, because I can't workout or anything, and the thought of drinking is very unappealing.

I dont have any STDs so I don't think it is that. I haven't had qEEG done yet. Toxic exposures maybe I work in a chemical lab but that is unlikely,
yes I passed out 1 or 2 times, I don't have any high fevers however my allergies get real bad a times (throughout my life). I don't think I have any B-12 problems because I have had many blood tests in the past years and there was no problems. Had a couple car accidents but never hit my head. One time I went to one of those oxygen bars for fun and I remember feeling really clear afterwards (before the 2nd hit). Something is wrong neurologically and I really don't know what it is.

Baseball,

I'm not sure if this has been mentioned to you or not, but you could also look into neurofeedback. The LENS neurofeedback system is especially helpful for people who have had multiple concussions. And, typically if the LENS doesn't work for you then that means you do have something else going on with you neurologically. So, it can be a usefull tool for that as well.

Regarding vision therapy, I think it would at least be worth investigating. It really doesn't matter if you visit someone who is an optometrist or someone who is an ophthalmologist because they both receive the same training in vision therapy. The main thing you need to be concerned about is their level of experience treating brain injuries and ALL of them offer free initial consultations. Also the therapist will work on training your brain's visual system and not just your eyes, which includes visual filtering and processing among other things. After some thought, I suggest you go to someone who is affiliated with NORA than NOVA.

Good luck!

I would strongly suggest you stay out of bars and stop drinking. Your concussion while drunk is like having twice the impact on your brain. The alcohol makes it so your brain is already struggling to function. Add a concussion and your brain is in serious trouble.

Has anybody here had any personal first hand experience with LENS neurotherapy?

What improvements were noticed?

How many sessions were completed?

What diagnostics were done before and after the LENS therapy?

Was the LENS therapy done by an M.D. or another kind of therapist?

I haven't drank or went out in a month. Regarding neurofeedback, I spoke with a university researcher and he said that there is no solid evidence in the literature that this technique actually does work. Only a few well controlled studies exist with few participants.

Regardless, I looked into neurofeedback therapy, and unfortunately it is not covered by insurance and therefore I am unable to afford this treatment. 30-40 treatments at $150 a piece is just too expensive to pay out of my pocket.

Mark,

As with all of the therapies I suggest on here, I have had direct experience with LENS therapy. I'm still in the process of doing the therapy and so far I have been very pleased with it.

The results are very specific to each person doing it because we all have different problems to alleviate. I have thus far seen a pretty significant reduction in symptoms since beginning the treatment. I have done around 20 sessions and the docs think I'll probably have to do close to 100 before I'm done. I have a lot of "crap" to work on... To cut down on the cost of treatment, I wound up buying the equipment for home use and my doc supervises me over the phone/skype. I am very tech savvy and have a degree in molecular biology, so getting trained on the equipment wasn't that big of a deal for me. It is very easy to use, so I'm sure it wouldn't be a problem for anyone else considering doing this.

I've had three diagnostic tests done before I began. I did a symptoms questionnaire, qeeg and a LENS map. The qeeg is to also be used for Z-score neurofeedback that I will begin in a month or so.

The person supervising my therapy is not an MD. He has a Phd. In my opinion, as long as the person has a doctorate within the health field, it doesn't matter if he/she holds an MD or not. I would not recommend going to someone with only a masters though.


A good resource of information is Dr. Stephan Larsen's book, "The Healing Power of Neurofeedback." I believe Dr. Len Ochs' office, who is the person who invented the LENS, will entertain calls. So, you could also give them a call and ask questions.

Hope this helps.

Baseball,

Unfortunately, that is the negative stereotype associated with neurofeedback. There has been research done on it with very good results but most in the medical community don't know about it. I won't get into why this is, but let's just say that the pharmaceutical companies had something to do with it. I could send you links to these articles if you are interested. And, some insurance companies will pay for it but it is like pulling teeth to get them to. Anyway, if you do consider it in the future, you should know that the LENS is currently being investigated as a treatment modality by the Veterans Administration for Iraqi/Afghanistan vets with brain injuries.

But then again, I'm not a medical doctor so take anything I tell you with a grain of salt. Good luck.

Please send me the links. I am open to anything right now. Does neurofeedback help with other ailments besides PCS. Could my symptoms be PTSD related? Is it punch drunk related? I may or may not have gotten a concussion. I am assuming PCS, however I don't have any of the classic concussion symptoms. I am just really confused right now.

Neurofeedback has been shown to be helpful for almost any neurological related disorder unless it is a result from another system in your body malfunctioning. It is very helpful for PTSD symptoms. A protocol called alpha/theta training is used and it is very effective in alleviating PTSD. Sometimes, a concussion/brain injury will exacerbate an underlying condition you may have but you were doing a good job keeping in check. So, that may be the case here. As Mark mentioned, it may be worth your while to get some lab work done. I would suggest getting a complete metabolic profile done, check your thyroid (TSH, FT4, FT3, RT3), check all of your sex hormones (testosterone, free testosterone, estrogen, PSA, progesterone, pregnenenalone, SHBG, and LH), check your adrenal glands by doing a 24 hour saliva test, check your growth hormone and B12 (if this is low, it can be an indicator that your other B levels are low). Although it is highly doubtful that you have this, you could also check for Lyme disease. The great news is that insurance will cover the majority of these tests. And keep this in mind, just because your levels are within normal range does not mean that is a healthy range for you. Some docs are so mechanical in their approach to medicine that they will only go by the ranges the lab provides and if you are within range, they will dismiss you as being fine. I had this happen to me with my testosterone and adrenal glands. Both were low but within normal range and my normal PCP said they were fine. I got a second opinion from a specialist in hormone replacement therapy and this person said I had the profile of 95 year old man (I'm 31). So, just make sure to do your homework.

Like most things related to the medical field, your average run of the mill doctor will not know to test for all of these things, nor will he/she know what to do with the results. You will have to find someone who knows about hormone replacement therapy and thyroid/adrenal gland therapy. And trust me, Endocrinologists are completely ignorant on how to properly treat the thyroid/adrenal glands, so stay clear of them if you can. I've had pretty good luck with anti aging doctors and holistic/naturo pathic doctors. You should google: "adrenal gland, thyroid, doctors" and you should find one in your area.

As far as the links go, I was going to peruse the internet and find them for you because I don't have them on this computer, but I figured you could just do that yourself. Just google: "neurofeedback, research, brain injury, hoffman" and you should find all of the articles related to this. You could also look into: "LENS, brain injury, research" and find some info on that. Good luck.

**

baseball,

Punch drunk and Post Concussion are the same, just a newer medical term. They used to call PCS/PTSD shell shock. They are slowly learning.

Beware the cost of the lab tests. Many insurance companies will fight you on whether they are "medically necessary." Mine came to over $1,000. I am waiting to see what my co-pay will be. You might want your physician to write down a strong 'medical' reason for the tests.

Mike is correct. As I mentioned much earlier, many doctors will use the broad 'normal' range as their target. This is not acceptable. My testosterone was in low but normal range as was my DHEA. My physician wanted both at the top of the range. Same for my B-12. And, endocrinologists are better at diabetes. Not much help with our issues. The hormones and D3 take a few months to see the true benefit. My six month follow up comes in April. We'll see what the tests say then.
**

You may notice that after those few months, the hair on your legs gets softer. Mine did. LOL

**

Regarding the LENS system. There is still not much info available online.

I wish Len Ochs would update his web site. He has removed a lot of information that was there just a few months ago. I talked to his wife and she was rather limited in her response.

An alternative web site states <It [LENS] is an FDA-certified Class II medical device. It is “510K exempt.” The “Class II 510K exempt” medical device classification is a less restrictive certification than a 510-K certification, meaning that it is considered by the FDA as safer than the 510-K devices — which includes most other biofeedback and neurofeedback devices. The FDA notification letter immediately allows us to market the LENS as a biofeedback device for relaxation and self-regulation. How it is used is a function of what the provider’s licensing board allows.>

An FDA search reveals only this form at http://www.accessdata.fda.gov/script...on.cfm?ID=3209

Device device, biofeedback
Regulation Description Biofeedback device.
Regulation Medical Specialty Neurology
Review Panel Neurology
Product Code HCC
Submission Type 510(K) Exempt
Regulation Number 882.5050
Device Class 2
GMP Exempt? No
Note: Class II devices the Food and Drug Administration (FDA) has also published a list of Class II (special controls) devices subject to certain limitations, that are now exempt from the premarket notification requirements under the Food and Drug Administration Modernization Act of 1997 (the Modernization Act). FDA believes that these exemptions will relieve manufacturers from the need to submit premarket notification submissions for these devices and will enable FDA to redirect the resources that would be spent on reviewing such submissions to more significant public health issues. FDA is taking this action in order to meet a requirement of the Modernization Act.
Third Party Review Not Third Party Eligible

From what I can figure out from all the information available, the LENS system is exempt by the newer FDA doctrine of the manufacturer being able to show it does no measurable harm. This is a new system used to lessen the work load at the FDA. They call this 'modernization.'

I have had PCS for 5.5 months following a fall. I did not have a severe concussion, at most it was a very mild concussion. The post concussion syndrome has been anything but mild! The first 2 months were bad, constantly tired, headaches, blurred vision, tinnitus, lack of energy, wooziness - the usual stuff. However, I seem to have made significant improvements starting at about the 2 month mark, and then smaller improvements about every month (can give the sense of plateau-ing between improvement stages). In most of the cases, it isn't that i noticed some dramatic change waking up one day, but rather one day I realized that one or more symptoms have reduced or in some cases nearly entirely subsided as i get through the day. I still have symptoms, and I still get headaches. But, rather than daily headaches that are severe, I get weekly headaches (maybe twice a week) that are milder and milder as well. My vision has gotten better as well. The biggest improvements I have noticed have to do with the reduced level of fatigue and general "wooziness". This has allowed me to return to work (phasing in slowly) which helps get one's mind off of dwelling on the symptoms all the time. At the same time, I have also had new symptoms arise that were not part of my experience in the first month. After 1 month, I developed tinnitus and also frequent nausea. Both of these symptoms have faded somewhat, but not yet fully.

I have seen very, very good neurologists for this - long practicing one that was chief neurologist for several pro sports teams and said he had seen literally thousands of PCS patients over 30+ year career. After meeting with him in detail, i firmly believe that not a heck of a lot is actually known about PCS and there are different theories out there amongst even the best in the medical community. Feedback I got was that there is no "normal' for recovery. Some see substantial improvement in a short time period, others see smaller improvements over longer time period - severity of concussion is not a predictor of PCS recovery timing. I have also spoken with several others who have had PCS, some who recovered within months, others that took more than a year. It's tough to find two like experiences with this.

My own philosophy has been to "listen to my body". If I am too tired, I back off. If I feel better, I do more things. It allows me to test limits during the recovery process.