Hi Guys,

My seven month mark is coming up this week, and I know in comparison to some of you- it's not that long. I really like my neuro and feel like he has a lot of knowledge, but I wonder if I should be trying other things. I have only seen my primary care physician and my neuro regularly.

My neuro has diagnosed me with post concussion syndrome, and he sees me once a month. He goes over my meds and changes them up if they are not treating the symptoms. His philosophy is that rest and reduced stress will eventually heal me. He says that my recovery will be almost instantaneous when it happens(one day or over a couple days I'll just feel better).

He has me on Amitriptyline 20mg every night, 1mg of B12 every day when I get up, and Treximet for my migraines.

I live in Buffalo and have been pointed in the direction of this concussion clinic at UB. Will you guys check this out and let me know what you think? I've already been doing some regulated exercise at home with my Wii Fit, but I'm sure this is more involved. I do some light yoga and balance activities for about 20 minutes and I try to do it 4-5 times a week.

http://www.ubortho.buffalo.edu/concussion/clinic.html

Thanks!

Hi Kate, I have been to a day seminar given by Barry Willer (one of Buffalo's specialists) when he was in New Zealand about 1-2 years ago! If you go back over my postings you will see a new posting that I created giving a summary of the seminar.

I spoke to him at the end of the seminar and he did tell me that he did not know of anything that could be done for me. I have had PCS 8 years and I am 53.

My understanding of their treatment is that if you have a recent concussion and have had some degree of fitness then you have a good chance.

I would go for it. There is no point waiting for your existing treatment providers to come up with anything. Everything that I have tried other than the usual amitryptiline, assessments etc I have had to go out and find for myself.

Good luck

Lynlee

I just read through most of the Buffalo Concussion Clinic. It is a standard athletic trainer/orthopedist/sports medicine protocol for concussion.

It is more about returning the athlete to play than it is about long term protection of the athlete. It uses existing statistical analysis that leaves many concussion subject at risk of serious injury.

I do not see any specialty in understanding concussion in the writings at this web site.

The return to play standards are very minimal and not up to the latest standards of research and understanding.

Hi Kate,

Thanks for sharing that information on the concussion clinic. If I lived in Buffalo, I would see what that clinic has to offer. It certainly can't hurt to explore it further. Unfortunately, there are no clinics like that near me.

Now that I've just passed the one year mark, I've noticed some improvement again. I've had 10 days in a row of almost feeling normal and am very encouraged by that. The headaches have subsided, my energy is coming back, and the numbness has all but disappeared. I've also resumed my daily walking and have not experienced the exercise intolerance that usually comes after too much exercise. I think it really helped that I was off work for two weeks and had plenty of rest and relaxation over the holidays.

However, I'm afraid to get too excited just yet as I have had occasional periods of improvement in the past only to have the symptoms return again with a vengeance. Still, I'm more hopeful than ever that I might see a complete recovery.

And, thank you so much for sharing the information your doctor passed on to you. It really helped me to read that recovery can be instantaneous and that rest and reduced stress is what is needed to heal.

God Bless!

Don

Hi Kate,

My daughter is at 23 months and her neuro is now calling her a psych patient simply because she did not recover from her PCS. They told us in the beginning that there is no treatment. She has done the rest and reduced stress. I don't know if I'm more angry or more scared for her. Sorry about the bad news but I wanted you to be prepared for that diagnosis.

My understanding now is that neurologists and others do not have a clue about PCS so it is put in a box of psych case if the patient does not recover over time. It makes no sense. It is so thoughtless on their part and believe me they see you for 20 minutes and you leave they never think about you or how to help you when you are gone. They have already decided.

I almost took her to UB when she was at 6 mos but it was 10 hours from us and that just seemed at the time would put more stress on her. Although it was a hard decision. If it is close for you and your insurance covers, go for it. But take it slow because as you say doing too much can aggrevate your symptoms. I don't know if aggrevation causes more brain damage or slows your recovery. Although I don't see any recovery in my daughter - I think she her PCS is worse because of her recent non-epileptic seizures. She is much more symptomatic. They are calling these seizures emotional even though they are CLEARLY (as I have documented) a result of her exposure to the same triggers that causes her PCS symptoms - noise, concentrating, reading, light changes and physical activity.

I am looking into Daniel Amen, MD, a neuroscientist, who uses SPEC scan to determine areas damaged and then tries to correctly match the meds to that.

Also, Dr. Walker, a neurologist, in TX who uses qEEG to determine the processing speeds in different areas of the brain that are too slow or too fast. Then he uses qEEG guided neurofeedback to restore the speeds to normal.

Also, I'm trying to find a nutritionist who has a clue about healing the brain with minerals or supplements. Any suggestions?

Also, someone has said that hormones levels can be affected from the brain's being injured. It makes sense it was shaken up and it is the control center of the brain. Any info on that?

Visit brain injury law group or gordon johnson attorney - he seems to understand and explain how the medical field views this and insurance companies try to get out of covering you. But I found no suggestions for help. He has been representing head injury clients for years. I would hope some of his clients found help - so I sent him an e-mail to ask if his clients found a doctor that could help them. All I want is for her to get her life back.

How is the Wii working for you? My daughter wants to get it but I'm concerned about her using it. I know that physical activity can make her worse. She can't even walk the dog very far without getting a headache. She tried it at a friends house and it did cause her to get a bad headache and have several bad days after that. But the balance and yoga maybe that would not be too bad.

I'm very discouraged and feel helpless because no one will listen. I wish I could find a doctor who would fight to get her her life back. No one really cares and understands. She is only 15. -- Why only 1 mg of B-12 that seems very low?

Linda (mom) in CT

Lucy,

Thanks for your reply. I think it's great that they are offering something. Sometimes I just think the hope and the action of doing something might help me more than seeing results. It's a feeling of being proactive, I guess.

I'm sorry you have had PCS for so long! It's good to see that you are still positive and hopeful. It's really encouraging to me. Thanks again!


Mark,

Thanks for reading through that stuff with me. It's good to have your opinion on it. I'm worried that it might be either too intense for me, or that I will put so much into it and not get anything out of it.

I read some articles linked to the site, and it seemed like the professional atheletes were able to return to play. The regular people, however, seemed like they were still going without any results at all.

I think it's good to have something to do, but it might not be for me. I do not drive, and even though it's only 20-30 minutes away from me- it's more time my husband has to take off of work. It also seems that I would need access to some sort of cardio machine 5 times a week. That's more driving involved for my husband, and possibly a gym membership. I'm not up for any of that.

I might call and just see if I can get evaluated, but I'm worried about throwing off the treatment from my neuro. I'm seeing him Thursday, so I might bring it up to him and see what he thinks.

Thanks again, Mark.


Don,

Thanks for your encouragement! It's great to see you've had some days of close to normalcy! I know what you mean about being afraid to get too hopeful. It seems as if this PCS is good at squashing hope.

I may go and get evaluated at the clinic. If they want to use me for part of their research, it might help someone else down the road who has PCS. I don't know.... It's a tough call, because it's so much driving and I can't drive.

I see my neuro on Thursday this week. I'll let you know what he thinks about all this.

Thanks Don!


Linda,

I'm so terribly sorry that you have been dealing with this for so long. Your daughter is very lucky to have a mother like you. You are a great advocate for her.

I hope this doesn't sound insensitive, but I feel glad that my neuro doesn't think I'm a psych case. They tried to dx me with something in the hospital that my neuro wouldn't let them. I think it was associative syndrome or something... I can't remember. He stepped in and said that I have PCS.

I'm sorry your daughter doesn't have the type of doctors that I've been so blessed with. My primary care, Dr. Eaton, and my neuro, Dr. Kang, have both been great advocates for me.

I'm glad you are still looking into different treatments for her, and I pray that you will soon find relief in someone positive that at least believes you! It must be so frustrating!

The Wii is good for me. I am trying to document my symptoms and the time I'm on the Wii. I set up a spreadsheet in Microsoft Exel, with the date on the left column and the different symptoms I experience across the top. It's easy for me to just go through and x the symptoms I've had at the end of the day. I've just added a column for time spent on the Wii fit. I'll keep you posted.

I don't know if it's really doing anything for me, but at least with the Yoga, I'm not pushing myself too hard and I'm able to keep in some kind of shape. If my symptoms start to get worse, I stop immediately. If I don't stop right away, they tend to ruin my day.

The Yoga and balance games are good for me. If I try any of the other games, it's pretty rough. Some of them have you doing a lot of aerobic activity and it's too much for my head. It's a big investment for you, if you are going to get one- I think the Wii runs $200 and the balance board and Wii fit are around $80. I use mine almost every day, unless I'm feeling really badly.

I'm really sorry that you feel so discouraged and helpless. At 15, your daughter has all the potential in the world! Is she taking any meds? Has anyone dx'd her with PCS? I know at least my neuro is the leading guy for PCS and headaches in this area. If you wanted to take the drive to try and see him, maybe it would be good for her? I don't know what kind of travel you are up for, but maybe you can find someone who can at least listen and help you feel more positive.

The B-12 is dosed by microgram, so 1 milligram is 1000 micrograms. I guess it's actually a standard dose. I take an oral pill, it can also be dosed with a shot intramuscularly. I believe a person can take anywhere from 1 mg to 5 mg safely. There is a thread on Neurotalk that can give you more info about it.

http://neurotalk.psychcentral.com/thread104778.html

Keep your chin up Linda. What you are doing for your daughter is amazing! Keep coming here for information and venting. You'll get there. I'm praying for you and your daughter. What's her first name?

Thanks, Kate

Linda and others,

I posted my vitamin and supplement amounts previously. B-12 and folate can be tested by blood test. Both are important. The standard 'normal' levels are on the low side for a brain injured person. For example, the normal range for B-12 is 176 to 840. My physician likes my tested level of 1067. Some absorb B-12 easily from an oral form. Others do better with an injection. I was on injections of B-12 for help recovering from a major decompensation back in 1982.

We don't know what additions to my daily regimen has caused improvement but since adding 5000 IU's of D3, 25mg of DHEA, some testosterone, and Omega-3 fish oil, I have been sleeping much better and my wife notices a difference in my daily functioning. I added these in early October and it took about three weeks to start to notice a difference.

From my understanding, B-6, B-12, and folate are the most important for head injuries. For my 180 pound body, I take 300 mg of B-6, 380 mcg or B-12, 1300 mcg of folate, 6400 IU's of D3 plus a myriad of other pills. I take 24 pills each morning, plus a teaspoon of fish oil and a dollop of Testosterone cream on my butt.

Evidence is beginning to be collected tying D-3 to brain function. The exact mechanism is still unknown. They do know that D-3 binds to more than 900 different genes. The concern is that with a reduction of sun exposure, Vitamin D-3 is grossly lacking. The old FDA RDA (Recommended Daily Allowances) is considered to be grossly inadequate. It takes months of D-3 supplementation before the blood levels of Vitamin D-3 show improvement.

There is very little risk, if any, for these vitamin regimens so they should be considered as a first line of treatment. Any other treatments or therapy will be lacking if the brain is still nutrient deficient. It wont help to get your car tuned up if you have an empty gas tank.

There is a doc in Stamford whose credentials sound good. Dr. Sobo practices in medical and naturopathic nutrition. Might be worth a call.

Hi Kate,

I have read about the exercise treatment of postconcussion syndrome that is offered at Buffalo.

I would love to try it. Like you I tried working out regularly in a gym. I found that this did not seem to benefit my headaches and other symptoms, although it at least did not make them worse. I suppose it did improve my fitness but that wasn't why I was doing it, so I gave up. I might give it another go, now that my symptoms have improved. I would be interested to see how you get on.

Best of luck.

CS

Hi Linda,

I am so sorry to hear about your daughter. The good news is that she is young and that does help recovery.

Have you tried just a straight EEG?

I am from the UK and awareness of PCS seems to be a lot lower here than in the States, and the facilities seem to be worse. I couldn't get a QEEG done under our health system, but I did manage to get a EEG. The QEEG does a spectral analysis of inputs and separates delta, theta, beta and alpha waves. With the EEG you just get a trace from the various points where electrodes are put on your head. However, even with just the EEG slowing of brain waves, ie an abnormal proponderance of delta or theta waves can be detected. After a lot of persuasion I managed to get them to show my the traces and you could clearly see strong waves at about 5 Hz. That means that in each division of one second you can see 5 peaks and troughs. This is generally reconned to be an abnormal trace and someone experienced in looking at an EEG would be able to comment on it for you.

The bad news is that they might not want to tell you that it is abnormal because they don't know how to treat it.

However, I think that it is still a good idea to know then you can see if there are any improvements over time if you get an EEG done again.

In my own case, there has been an improvement from year 1 to year 2 and also a decrease in symptoms, although sadly they have not gone.

Best of luck,

CS

I was not able to get a

Hi Linda (again),

I think that nutrition is very important. There should be some sort of general guidance for people with PCS. It would be such a simple thing to suggest. However, I haven't been given any advice at all on this by the medical profession.

I have just been taking a general pill for brain nutrition, but I think that I should look into it more. Possibilities are creatine and omega3 fatty acids. Let me know if you come up with anything.

Regarding exercise, I have found that exercise where the head is jerking around at all doesn't feel good. For that reason I would hesitate to suggest the wii. I have found that using an exercise bike does not make my symptoms any worse. That may not be a cool enough activity for a 15 year-old though.

Best of luck.

CS