My daughter dictated the post below to me:

I have had a number of concussions over the last year and a half and with each new concussion, my concussion threshold seems to get lower and lower. I asked a neurologist about this, and she told me that she doesn’t think that concussion threshold lowers at all, but she had no explanation for what I was experiencing. I wanted to know if anyone else has experienced the same thing. Does your concussion threshold ever return to normal? How long does it take? Are there ways to raise your concussion threshold or to make the healing process go faster?

Obviously, I have been doing everything I can to avoid minor head bumps, but they cannot always be avoided. I am wondering if there is anything you can do to minimize the risk of damage after a head bump. I have a couple of ideas I would like to share.

Idea number one: I know that it is theorized that brain damage from concussion is due to excitotoxicity caused by excess glutamate in the brain. I wonder if there is any way to reduce levels of glutamate in your brain, so I asked my father to research this for me. He only found one thing – there is a drug called NAC that converts glutamate to glutathione. I don’t know if glutathione is any safer for you than glutamate, but I tried taking NAC (N-Acetyl L Cysteine) after my last couple of head bumps, and I am fairly certain it did absolutely nothing. Upon further research, my father found that there is little evidence that NAC can cross the blood-brain barrier. If there were a way to make this drug cross the blood-brain barrier, then perhaps it could help us, or perhaps there is another drug that can absorb excess glutamate in the brain.

Idea number two: Is it possible that an anticonvulsant could help prevent excitotoxic damage by inhibiting neurons from firing? If anticonvulsants can prevent seizures, then I don’t see why this wouldn’t be possible. However, so many people with PCS take anticonvulsants that if they did anything to raise the concussion threshold, I feel like we would all know about it by now. So my question to those of you who take anticonvulsants is whether you have noticed any effect whatsoever on your concussion threshold or on the amount of damage a concussion causes.

These are some of my ideas. I would love to hear if anyone else has any others.

There is no known way to raise concussion thresholds. Research is mixed about successive concussions. Some suggests a lessening threshold but others suggest there is not a lessening threshold. From what I can tell, the threshold limits are likely genetic. Some have the genetics to return to pre-morbid levels, others do not and start a decline in threshold limits.

Extrapolating from the various research discoveries, it sounds to me like the genetic struggle with neuro-fibrillary tangles is the linchpin. Some brains can restore proper neuro-fibrillary tangle management where others do not. This fits with the concept that elderly who do not exhibit dementia by their 70's will rarely develop dementia. Most dementias are believe to have a neuro-fibrillary tangle malfunction.

The hope for the future is that they can treat the neuro-fibrillary tangle condition.

The other treatments they think would help have to be administered in those first 12 to 24 or even 48 hours. This is before many concussions present as concussions other than knowing an impact took place. It is inconceivable that every head impact would be treated prophylatically in case a concussion took place. The cost to treat every impact would be too high to justify such a protocol.

So, at the present, the most important issue is proper care in the first 12 to 48 hours after injury. It can slow the cascade of decline due to the physical and chemical stress.

The glutamate concept appears to have a chicken or egg question. Is the glutamate a result of something else or does it cause the problem directly ? Either way, it is valuable to not increase glutamate in the body by avoiding the free glutamate that is in so many processed foods.

The big question in my mind is: Why is she suffering so many concussions ? Is there a way to reduce the risk of these impacts ? The occasional bump is unavoidable but even they can be reduced by learning to move with more conscious purpose rather that sub-consciously. I know that when I am more sub-conscious with my movements, my risk is higher.

I've had to learn to stop and think about what I am doing. Over time, it has become an way of life and my accidental bumps have declined greatly. I am not paranoid of moving. I'm just more purposeful with my movements. I have used this discipline to avoid back injuries when doing heavy lifting. I stop, prepare to lift the load, then lift it safely. I do the same getting up from a chair but because if I move to fast, I may cause a moment of dizziness or clumsiness.

I hope she can understand how to use these concepts.

My best to you both.

My daughter dictated this to me:

"Thank you so much for your reply. You seem very well informed.

I don't suppose there is anything you can do at the present time about neurofibrillary tangles, is there? I appreciate the information you provided about glutamate. It sounds like what the rise in glutamate may be similar to the drop in magnesium. We don't know if it is a cause or a result. You said that what you do in the first 24 to 48 hours after concussion is important. What would you advise?

In answer to your question about how I sustained so many concussions, as far as I can tell it seems to be a combination of bad luck and a constantly lowering threshold. My first concussion was the result of an assault. My second happened 8 months later when I bumped my head. That was the only one that was actually my fault. My 3rd happened when I was on the bus and the driver hit the brakes very suddenly and my head whiplashed. The fourth was given to me by an extremely careless physician who, upon hearing my temples were swollen, sharped jabbed me in them and did not stop despite my screams of pain. The 5th concussion happened when I was on the bus and a man walking down the aisle behind me slammed his elbow into my head. The 6th happened when my mother accidentally hit me in the head with a glass pan when she was turning around.

The most troubling aspect of my decline has been the feeling of powerlessness ever since the initial concussion. I have gone to extreme lengths to avoid any kind of head bump. I have become incredibly careful with my movements, but for some reason I can't seem to avoid the clumsiness of other people. It is so frustrating to feel that there is really nothing I can do. For individuals with the innate genetic weakness that predisposes them to an ever-lowering threshold, what help is there? What hope is there that we can ever again lead a normal life or stop the decline?

I am trying to hang in there, but it gets more difficult with each successive event. My intelligence used to be all I had in the world, and now I can no longer read or write or do math or think properly or even do simple tasks like listening to music or speech without incurring a migraine. For the past several months, I have been doing nothing other than lying in bed all day trying to avoid negative stimulation. I feel like I am no better than a vegetable. I am sorry that this is all probably more personal information than you were expecting. It is just that when I think about the seemingly unstoppable series of concussions that have ripped everything in my life away from me, it is hard to feel any kind of optimism or hope for the future.

My grandmother had Alzheimers, and if what you say about neurofibrillary tangles is correct, then even if I manage to break this cycle somehow and have my brain back for a couple of decades, I cannot help but feel that my life will end in the same way that hers did. As far as I know, there is nothing that can be done to prevent Alzheimers yet. I am trying to eat a lot of curry. If anyone has any other suggestions, please let me know.

Thank you again Mark, for your input."

Mark, you didn't comment on my daughter's question about anticonvulsants. Do you have information on anticonvulsants treating or preventing PCS?

I think you may be putting too much meaning to excitotoxic damage. Excitotoxins are not good but I have not read anything that suggest they are the cause of PCS.

Some have used anti-convulsants for migraines with varied success. I take one to allow my brain to settle so I can sleep. I don't see how they would treat PCS. But, every brain responds in its own way to meds.

I am concerned that the physical force of some of your head impacts is only a small part of the cause of your struggles. An enhanced startle response can set off a myriad of negative chemistries and symptoms. Various hormone responses may be at play. Stress hormones, excitement/fight or flight hormones, and all the rest would be worth consideration.

The one thing I do know is that the brain has a system for flushing toxins that is very delicate. It does not function well with elevated blood pressure, intracranial pressure, or improper sleep.

I think I already mentioned trying an anti-inflammatory diet.

The first 12 to 24 hours after a concussion should focus on low stress with good sleep at normal times. Basically, give the brain a break. Light stimulation to encourage good brain blood flow.

Since neurofibrillary tangles have been discovered, they have become a big focus for therapies. One monoclonal antibody has already been targeted at them with some success. There will be lots of new developments over the next decade or two.

Have you been treated for PTSD from your assault ? There is reason to believe PTSD and PCS have a link and magnify each other. Even if you don't feel troubled by the assault, the effects of PTSD can still be contributing. A professional's help would be worthwhile.

There are some atypical anti-psychotics that may help. Xyprexa is one. Many are only used for a short period. 30 days of Xyprexa did wonders for me. I am not one to promote meds but in some circumstances, trying them may help.

Are you near an Amen Clinic ? Worth a call.

I am extremely sensitive to head trauma just like your daughter. I developed a migraine so bad that I had to lay in bed and stare at the wall in silence for two straight years. My doctor, who wrote the handbook on headaches, and it's one of the world's leading researchers on migraines does not believe that there is anything wrong with my brain. Chronic pain disorders can develop as functional problems-- that is problems with feet brains neurocircuitry. But that doesn't mean that there is a structural problem. From your story And the kinds of impacts your daughter has received I wouldn't be so worried that she has brain damage. Like me, it sounds like she might have a pain system that spiraling out of control. Have you seen it neurologist that is certified 2 treat headaches? It took years for me to find the right medicine but when they did I'm finally able to function just a little

My daughter dictated the following replies:

"Thank you both for your replies.

Mark, thank you for the informative response, as always. I could definitely be putting too much emphasis on glutamate because it is one of the few chemical responses I know of that is a feature of concussion.

I am on an antidepressant for my PTSD, and I will be seeing a new psychiatrist this week, so I will ask her whether there is anything else I should be doing to treat it. My sleep is a struggle. I did a sleep study a few months ago, and found that I had chronic slow wave sleep deprivation. As yet, I have found nothing that has worked for that, but I will be asking the psychiatrist about that as well.

There is an Amen Clinic near me. My mother just submitted an online information form, so I will hopefully hear from them soon. Thank you for that suggestion. I will also ask my psychiatrist about Zyprexa (Xyprexa) and see if she thinks it might help me. I also wanted to give a belated thanks for your tip about the threads on neuro endocrine dysfunction. As luck would have it, I am reasonably near Esther's doctor, so we have contacted his office and hope to hear back."

Next, to Joe:

"Joe, it sounds like we may be going through something similar. Did your concussion threshold ever return to normal? Also, where is your doctor located, as I am in southern California? I am greatly reassured about what you said about brain damage. I am scheduled to see a neurologist who is a headache specialist in August. Just out of curiosity, which medication ended up working for you? I wish you all the best with your continued recovery, and thank you for your response."

I don't know much about sleep beyond REM is when neurons heal and slow wave is when the brain flushes toxins. It sure sounds like further investigation into why you don't have slow wave sleep would be worthwhile.

I do know that for me, my sleep makes a huge difference in my day with all my symptoms.

I hope you find some understanding with these issues.

My concussion threshold hasn't returned to normal... yet. I had to leave Southern California to move back in with my mom in the Northeast because I can't take care of myself. I saw 2 headache specialist that I wasn't happy with. Finally I went to a headache Clinic and I found my current doctor that I love. Is there a Mayo Clinic in Southern California? I've heard pretty good things about their treatment of migraines. It took a couple years to find the right meds for me. Methylergonovine is what seems to be having the best effect now. But everyone's brain chemistry is different and it may take your daughter while to find the right fit. I hope that the two of you had the strength and patience to fight through this struggle. Wishing you both the best!

Joe in LA,

By any chance you went to the doctor Stuart Stark in Alexandria, VA?

They are famous for treating headaches. I met with Stuart Stark only once and he is super busy and tough to get appointment. Very nice doctor and he was honest with me that I will never get back to 100% but significantly good.

Unfortunately I couldn't follow up with him because of his busy schedule.

https://www.inova.org/Physician_Dire...ark-MD/729938/

After 1.5 years I was almost fully recovered from a concussion and then I bumped my head and the medications the doctors prescribed (torodol, ibuprofen, and an antidepressant) made my head super sensitive and then it kept getting worse and worse until I couldn't open my eyes for 7 months. Now the Nortriptyline antidepressant is starting to wear off and I'm improving.

I would get off the antidepressant and then just don't do anything to aggravate your head. Be sure to taper the dose to minimize the withdrawal effects. Because thats the reason why I couldn't open my eyes for so long.

Yeaterday I stood up for the first time in nine months so there is hope!