[RidingRollerCoaster]

http://www.nytimes.com/2015/07/05/business/effective-concussion-treatment-remains-frustratingly-elusive-despite-a-booming-industry.html?_r=0[/URL]

"Not long ago, the field of brain injury research was small. Numerous attempts to develop drugs to treat patients with significant head injuries failed as researchers struggled to understand the brain’s complexity. Little attention was paid to concussion, which is also called mild traumatic brain injury.

“The number of neurologists interested in traumatic brain injury could have held a convention in a phone booth,” said Dr. Ramon Diaz-Arrastia, an expert at the Uniformed Services University of the Health Sciences in Bethesda, Md. That changed a decade ago after reports showed that hundreds of thousands of service members were returning from Iraq and Afghanistan impaired by concussions caused by battlefield blasts and accidents. In 2007, Congress, facing criticism that the military had ignored the psychological and physical toll of the conflicts, allocated $600 million for research and treatment, splitting the funds between traumatic brain injury and post-traumatic stress disorder, or PTSD."

It makes me very sad that it took hundreds of thousands of our soldiers to get badly injured for anybody in the medical community to start studying concussions. Meanwhile there are hundreds of thousands of us out here that have been suffering for years (many long before me).

At least some new research is coming out.

Does anybody know anything about the N-acetylcysteine supplement mentioned at the end?

[DannyT]

N-AcetylL-Cysteine is the precursor to the all-important antioxidant glutathione. It is used in hospitals to detox people from overdoses of acetaminophen (Tylenol)

I have been taking 1,800 mg/day spread out over 2-3 doses for the past month after researching it. According to all resources I've read, it is apparently very safe at that dose of below. except for lowering the amount of available mucus. Read up on it first, but I would highly recommend adding it to your daily supplements. I believe it has the potential to be a powerful ally in our journey back to recovery.

[DannyT]

By the way, I think the figures in the U.S. are something like 5 million people living with a concussion related disability and millions more injuries occuring each year.

It's clearly too complex of an issue for the medical world to want to involve themselves in. They are pretty much being forced to deal with it as it is a national epidemic that no one wants to talk about. Maybe in my lifetime they will have some real treatment and medication options and no more of this self treatment and wait and see approach.

This is a clear example of how the medical industry, including the pharmaceutical companies, does not have the public's health and well-being in mind. It's all about that cheddar.

[DannyT]

Active Link:
http://mobile.nytimes.com/2015/07/05...-industry.html

Last thing, our own member dudewhohithishead has visited Dr. Harch in Louisiana and has received the HBOT treatment. He reported it being extremely helpful.

Hopefully he will see this and comment. If not and you are interested you could always send him a message.

I'm currently contemplating this treatment but it is far too expensive at this moment.

[Mark in Idaho]

The pharmaceutical companies would love to sell meds to the concussion community. The market is huge. The profits would be huge. The problem is there is a wide range of ways a concussion effects the brain.

N-acetylcysteine , progesterone, HBOT, and many other protocols have been studied. The epidemic within the veteran community means finding an effective treatment will save the VA from the need to provide lifetime care for mTBI patients.

Unfortunately, brain cells do not always heal. Neuro-regeneration is a slow and minimal process. Plus, there are other systems in the brain that get damaged that take a long time to heal when they are damaged. Younger people and those with less over-all damage have reserve in the brain that can overcome some of the dysfunctions.

Trying to blame the medical community is not helpful. Doctors will be defensive. Insurance companies want to only pay for medically necessary treatments.

So, it is important for us as individuals and as a community to seek understanding so we can advocate for our care. It is a tough and frustrating situation but we can go on to lead full lives.

[DannyT]

I don't blame the physicians themselves and would never speak like this during an appointment. I just felt that this was a good place to share my current opinion on the matter.

You're right; blaming the medical community directly would not produce any positive results. I tend to try and go with whatever they suggest as much as possible and give them credit when it is due. I've just noticed a theme of undereducation and lack of understanding on the parts of the doctors I have seen during this difficult time.

It's tough to get a prognosis of one week for recovery, then 2-3 weeks, then 3-6 months and now unknown. It certainly doesn't help with the psychiatric conditions that have developed/worsened as a result of PCS and its complete changing of my life.

[Mark in Idaho]

DannyT,

You need to not ask for a timeline. Any timeline for recovery is pure BS. Nobody, even the best specialists can give you a timeline.

Research has shown that when people with PCS stop worrying about when they will recover and accept their symptoms as real and now and try to adapt their lives to work-around their symptoms and limitations, they slowly show improvement. Those who spend time fretting about every little symptoms will take longer to heal and be more prone to developing the psych issues you allude to.

Doctors cannot fix us. Meds cannot fix us. There are some therapies and treatments that can help some people with specific symptoms such as vision therapies, vestibular therapies. But what helps one person will not necessarily help the next person. Meds can only reduce a symptom but not heal that symptom. Healing takes time and is not usually in our control.

It is PAINFULLY frustrating but it is the way things are.

We can go on and we do go on.

[DannyT]

I have been doing my best to accept the new me, but I keep getting new symptoms tacked on so I have to readjust to another new me. This process becomes exhausting and leads to a lot of anxiety and depression.

I do appreciate you explaining the best way to increase the chances of recovery. I guess I'm just paranoid of being hit with new symptoms each month, which has been the pattern the past 5 months.

Trust me, when an improvement comes along I am pleasantly surprised by it. This is my life for now and I know that. It's just hard for a formerly active student to be bedridden essentially most of the day.

[Mark in Idaho]

I struggle to understand why you are bedridden. What has been your progression of increasing/new symptoms ? I've been through this cycle many times. What symptoms make you think bed rest is required ?

[DannyT]

Late April - went from being able to tolerate podcasts to not being able to use my phone at all. This was due to overstimulation.

Early May - light sensitivity increases to its current state. Unable to go outside of a dark room without sunglasses. Not sure the cause of this. I spent some time trying to relax in the sun for 30 min two days in a row. I had my sunglasses on but maybe this was the cause? So now I'm paranoid about making this symptom worse.

June - I got hit with the Prozac visual disturbances which I'm still dealing with despite it slowly being released from my system. I think it's known as visual snow.

Mid June - Hit my back/neck and have been experiencing back/neck pain and tension headaches ever since.

I had a feeling you might misconstrue that. What I meant is essentially bedridden. I guess a better term would be couch ridden most of the day.

The extreme light sensitivity is the symptom that limits me the most. I wear sunglasses most of the day because of it. Even with dark sunglasses on, I can feel pain in my eyes and head if I go in the sunlight.

Sound sensitivty sort of goes along with this as far as limiting my ability to go outside due to loud noises like lawnmowers, cars and dogs barking. Even with earplugs these seem to make my other symptoms worse.

Extreme fatigue tends to give me only a few hours each day where I can be up and moving around. This coupled with new neck, back pain and headaches leads to me sitting on the couch hoping to heal my neck. I have seen some progress in that respect.

It's not like I'm not going to appointments, but I spend most of my free time either eating or on my couch resting because I can't really do much else due to the above symptoms.

I do go for walks when it's cloudy out as I'm afraid of the sun due to what happened in May and I cook for myself and do dishes.

Thankfully in the past few weeks my cognitive stamina and ability to use my phone have increased. I haven't been bed resting for a while. I spend most of days on the couch, using my iPhone.

So perhaps bed rest was the wrong term.