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Will this really take a year to get better?

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Old 02-24-2018, 01:57 PM   #1
LettingMyLightShine
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Default Will this really take a year to get better?

This is my first posting of a new thread, so I'm hoping I am doing it right. It's taken me several sessions to write this as I can only work for a short bit at a time. I'll explain everything that happened to me....my main question is when does this all go away? Will it really take a whole year? I'm so over it and ready to move on with my life. I'm an active work all day- activities every evening and every weekend person...and it's all come to a complete halt!

Does laying flat help everyone? (My aunt is an RN and suspects a CSF leak because laying flat alleviates my symptoms)...Doc said it's possible, but hard to test and hard to treat.

I've had several concussion and they weren't like this at all. I can shake off concussions. I was hospitalized when I was 4 and was unconscious for several hours....and I fully recovered. Thrown off a horse at 8, concussion, and fully recovered. Large heavy box fell out of attic onto my head at 18, concussion, and fully recovered. Car accident at 21, concussion, and fully recovered. Wakeboarding accident at 35, concussion, and fully recovered (Puking and headache lasted a little longer than the others). I was raised that you "Suck it up" and get on. Thus, I was able to do all these times.

Now....40.....someone got behind my heels....fell over them backwards....landed on the back of my head on a concrete floor. Out for a bit...come to confused...difficulty walking and talking, but whatever- I'm fine. Friends call husband who takes me to ER....ER says concussion, follow up with Primary Care Doctor. No big deal. In bed, puking starts through the night and the next morning...go to primary care. Neurological tests not so good....can't pinch right fingers together, problems with speech and gait, confusion, headache, nausea, vommitted in doctor office, blurry vision, dizziness. Doc says should go away in a couple weeks.

A couple weeks?? I shrug these things off in a couple days. Tried painkillers, amitriptiline prescribed....all meds make me sicker and dizzier...side effects not worth it. Laying flat and advil help. Went back to doc 2 weeks later, insisted on going back to work. Yes all symptoms are still there, but I'm not puking any more and I can pinch my fingers, so let me get on with life. At work- holding onto walls to walk. Every light hurts, every sound hurts, every conversation hurts...soon co-worker says somehting's wrong....slurring speech, can't walk, don't remember names of relatives to call. Can't remember what street I live on when they drive me home.

Back to doc. Doc says yes something's wrong- you've had a brain injury. Diagnosed with post Concussive syndrom. Doc orders MRI- shows "leisions in white matter that may be related to brain truama"...Doc tries to get me to in patient facility for brain injury. They say no because it's not severe injury.

Friend is chiropractor- adjusts neck and brings me fish oil (1,000 DHA, 500 EPA), B-complex (50 mg Thiamine, 50 mg Riboflavin, 50 mg Niacin, 25 mg B-6, 165 mcg Folate, 50 mcg B-12, 50 mcg Biotin, 50 mg Pantothenic Acid, 49 mg Choline), 4,000IU D3, and Curcumin with bioperine.

Nerologist referall 2 months after fall. Still haven't been able to leave house due to overstimulation. Everything makes symptoms worse, sounds, lights, conversation, thinking, standing up.....having overstimulation issues, headache, dizziness, nausea, blurry vision, ear pain and pressure, neck pain, short term memory loss, confusion, insomnia, inability to multi task, slow processing and talking. Neurologist spends 10 minutes with me- said he didn't have time to look over medical records or read daily journal, but has treated concussion many times, even for football players and knows exactly what I need. All symptoms due to anxiety and magic pill called Cymbalta will make all symtoms go away and I'll be healed in 6 months. If I don't take Cymbalta, it will heal but more like one year. Sends referrral for Physical Therapy for upper neck injury, Cognitive Therapy, Neuro-Psychologist, Neur-Opthomologist. Cymbalta makes me worse feeling- like I was on chemo....or how people describe chemo....achy, didn't care to get out of bed, dizzy. Stop taking Cymbalta.

We are now 4 months out....

Neuro-ophthamologist confirms blurry vision- all other tests okay. Currently making me temporary glasses for the blurry vision with a rose colored tint for the light sensitivity. Says blurry vision will go away in 6-12 months when brain heals.

Neuro-pscyhologist test test validity "normal effort", Overall low-average range 13th percentile. WHAT????? I have a master's degree and had straight A's all through high school, college, and graduate school!!!!!!!! Working memory "Severely Impaired range". Average range for auditory comprehension, NAB Memory test moderately impaired range 4th percentile. Visual Spacial and Executive Functions average.

Physical Therapy twice a week for upper neck issues. Exercises daily.

Cognitive therapy test results impaired range 21/30 on the MoCA. Cognitive therapy twice a week.

Besides the vitamins, I do my neck exercises, light yoga stretches, and am up to walking 1/4 mile a day on the treadmill in 10 minutes (before symptoms get too bad and I can't go on), I sleep 7 hours a night. With melatonin, I can sleep 8 hours, but it gives me a headache. I have always eaten Paleo and am trying to switch to Keto.

Yes, I've seen small improvements, but not like I can go back to work and back to my life....URG!!!

So- does this really take a year to get better? I want my life back!!! I can't leave the house or my brain shuts down and I have difficulty walking, talking, processing, headache, nausea, dizziness. I go to appointments and that's all and even that takes everything out of me and I have to rest. Is there anything else I can be doing? This WILL ALL go away, RIGHT??????
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Old 02-24-2018, 04:28 PM   #2
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I think others like Mark in idaho will give you some better and more detailed/informative advice but I can tell you that brain injuries, especially after you already had a few, are serious and can take a while to recover from.

You can't rush your recovery, you'll feel better when you feel better but in the meantime all you can do is focus on doing things that help your brain, alleviate your symptoms and that make you feel better. There's no timeline on this type of thing, even a doctor can't tell you.

Being anxious and overthinking things is just gonna be bad for your recovery because they put additional stress on your brain and slows down recovery and exacerbates symptoms. Brain injuries are not something you can just brush off. It's best to just relax, keep a positive mindset and focus on what you can control and what makes you feel better. Trust me, I learned the hard way.

Hope that helps a bit and hope you get better.
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Old 02-24-2018, 05:44 PM   #3
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Think baby steps for activities, stop as soon as symptoms increase, better yet learn to stop before symptoms increase..

Some medical pros are better than others.. if you feel a lack of improvement might be worth trying another provider.. PTs and MDs..

CSF leak - we have a sub forum with more info on that -
https://www.neurotalk.org/forum78/
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Old 02-24-2018, 06:09 PM   #4
Mark in Idaho
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LMLS,

Thanks for your hard work to put this together. You did great.

Nobody can predict a timeline of recovery. Every concussion is different. The challenge you have is 2 or 3 fold. First, you have Multiple Impact Syndrome. Each concussion robs the brain of a bit of its ability to recover. You may have sensed you recovered fully but you likely had residual deficits that did not manifest until you were under stress. After each concussion, your tolerance for stress was reduced. One concussion expert complains that most doctors fail to recognize the impact past concussions have and encouraged others to properly document past concussions in medical records for future consideration.

This one issue is important to me because I have a history of 14 concussions. One severe at 10 years old, 4 serious concussions, and 9 mild concussions. My last concussion was a mild concussion but it changed my life the most.

Second, you have a rear of head concussion. They are very tough. They include a neck injury that is very difficult and time consuming to recover from.

Third, you are used to a very busy and productive life with high expectations. You sound like an intelligent Type A personality. This adds a stress component that magnifies everything.

An additional factor is your age. The brain becomes less tolerant to injury as we age, especially as we enter the 40s.

I understand your NPA scales. My visual memory is at the 5% level. My auditory memory is at the 12% level. My processing speed is at 10%. My intelligence scales range for 88 to 99th percentile.

In school I was also high honors even though I had an academic crash and seizure disorder my sophomore year due to a mild concussion from soccer.

My neuro said he had never seen a brain that was so dysfunctional. He was amazed that I could accomplish so much. He attributed it to using intelligence to work around my memory and processing dysfunctions. It takes work but we can learn to move on with our limitations.

I had the same over-stimulation problems early on. I could not endure a grocery store. I would freeze in congested traffic. Sounds were a horrendous problem. The self doubt about whether my struggles were real or imagined only made things worse.

The B-50 complex is good. You should add 1000 to 2000 mcgs of methylcobalamin B-12. All of the anti-oxidants are important to help your brain with oxidative stress. C and E are most important.
It takes a lot of curcumin to get a benefit. Many curcumin formulations have the right bioperine but not enough concentrated curcumin. Even with bioperine, the gut does not absorb much curcumin.

I would encourage you to look into anti-inflammatory diets. The keto diet has a lot of anti-inflammatory value. I think that is its primary value, not the ketosis since few ever enter ketosis.

My biggest concern is how your neck is being treated. The subtle neck injuries that are part of concussion, especially backward falls, require very gentle treatment and disciplined posture discipline. Most chiros are too aggressive. The range of motion efforts of PTs can be just as challenging.

Do you by chance have presbyopia requiring multi focal glasses? The neck extension needed while looking for the right part of the lens can be a challenge.

Have you been assessed by a behavioral optometrist? They are different than a neuro ophthalmologist. Proper visual function aids vestibular function. NORA.cc has a good database. Acuity (focus) is different that visual coordination and convergence issues.

Your quality of sleep is more important than the amount of sleep. Many try to sleep longer than the brain wants and that can actually have a detrimental effect. Breathing can be impacted by upper neck injuries. Do you dream pleasant dreams or stressful dreams?

Rather than taking melatonin, you could try 5-HTP. It is a precursor to serotonin and melatonin and the combination can help the mind settle down. I take 100 mgs every morning as a replacement for an SSRI. The brain knows what to do with 5-HTP. It usually gets it from L-Tryptophan. My doctor is in support of my use of 5-HTP. It can quickly help you with anxiety related symptoms. Do not take it with Cymbalta ( I relalize you stopped). Many take up to 500 mgs. I take enough to feel relief.

The lesions in the white matter can relate to your struggles with over-stimulation. This issue is not fully understood. This is a sign of your anxiety. BUT, your anxiety is not causing your symptoms. Your anxiety is a symptom of your physiological injury. Reducing those stimulation triggers is important. Foam ear plugs, tinted lenses, changes in environment, and such can be helpful. Yes, I realize there is only so much you can shut down in your life.

Your aunt's CSF leak issue is interesting. A spinal tap/lumbar puncture to measure pressure can sometimes indicate a problem. Some have an over-pressure issue that the spinal tap resolves immediately but returns over time.

I think the laying flat may indicate a neck injury that likes the lay flat posture. I have personal experience with this. When I am in my best posture, I sleep and wake up feeling alive. In the early days, poor neck posture would cause malaise and depressed pulse and BP and even suppress my breathing.

btw, I often get my best sleep in a recliner or laying flat. I use a very thin pillow but curl it around my ears so my head does not roll to the side. We figured this out when my wife noticed my facial expression being different with different sleeping postures. She could tell when I was going to have a good or bad day.

Where do you live? There may be some specialists in your area.

I'm sorry for giving you a fire hose of information. I suggest you print this out so you can read it at your leisure without the glare of a computer screen. You can even paste into Word so you can use larger fonts.

I have even more to tell you but......

My best to you.
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Old 02-25-2018, 12:30 AM   #5
BenW
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Quote:
Originally Posted by Mark in Idaho View Post
LMLS,

Thanks for your hard work to put this together. You did great.

Nobody can predict a timeline of recovery. Every concussion is different. The challenge you have is 2 or 3 fold. First, you have Multiple Impact Syndrome. Each concussion robs the brain of a bit of its ability to recover. You may have sensed you recovered fully but you likely had residual deficits that did not manifest until you were under stress. After each concussion, your tolerance for stress was reduced. One concussion expert complains that most doctors fail to recognize the impact past concussions have and encouraged others to properly document past concussions in medical records for future consideration.

This one issue is important to me because I have a history of 14 concussions. One severe at 10 years old, 4 serious concussions, and 9 mild concussions. My last concussion was a mild concussion but it changed my life the most.

Second, you have a rear of head concussion. They are very tough. They include a neck injury that is very difficult and time consuming to recover from.

Third, you are used to a very busy and productive life with high expectations. You sound like an intelligent Type A personality. This adds a stress component that magnifies everything.

An additional factor is your age. The brain becomes less tolerant to injury as we age, especially as we enter the 40s.

I understand your NPA scales. My visual memory is at the 5% level. My auditory memory is at the 12% level. My processing speed is at 10%. My intelligence scales range for 88 to 99th percentile.

In school I was also high honors even though I had an academic crash and seizure disorder my sophomore year due to a mild concussion from soccer.

My neuro said he had never seen a brain that was so dysfunctional. He was amazed that I could accomplish so much. He attributed it to using intelligence to work around my memory and processing dysfunctions. It takes work but we can learn to move on with our limitations.

I had the same over-stimulation problems early on. I could not endure a grocery store. I would freeze in congested traffic. Sounds were a horrendous problem. The self doubt about whether my struggles were real or imagined only made things worse.

The B-50 complex is good. You should add 1000 to 2000 mcgs of methylcobalamin B-12. All of the anti-oxidants are important to help your brain with oxidative stress. C and E are most important.
It takes a lot of curcumin to get a benefit. Many curcumin formulations have the right bioperine but not enough concentrated curcumin. Even with bioperine, the gut does not absorb much curcumin.

I would encourage you to look into anti-inflammatory diets. The keto diet has a lot of anti-inflammatory value. I think that is its primary value, not the ketosis since few ever enter ketosis.

My biggest concern is how your neck is being treated. The subtle neck injuries that are part of concussion, especially backward falls, require very gentle treatment and disciplined posture discipline. Most chiros are too aggressive. The range of motion efforts of PTs can be just as challenging.

Do you by chance have presbyopia requiring multi focal glasses? The neck extension needed while looking for the right part of the lens can be a challenge.

Have you been assessed by a behavioral optometrist? They are different than a neuro ophthalmologist. Proper visual function aids vestibular function. NORA.cc has a good database. Acuity (focus) is different that visual coordination and convergence issues.

Your quality of sleep is more important than the amount of sleep. Many try to sleep longer than the brain wants and that can actually have a detrimental effect. Breathing can be impacted by upper neck injuries. Do you dream pleasant dreams or stressful dreams?

Rather than taking melatonin, you could try 5-HTP. It is a precursor to serotonin and melatonin and the combination can help the mind settle down. I take 100 mgs every morning as a replacement for an SSRI. The brain knows what to do with 5-HTP. It usually gets it from L-Tryptophan. My doctor is in support of my use of 5-HTP. It can quickly help you with anxiety related symptoms. Do not take it with Cymbalta ( I relalize you stopped). Many take up to 500 mgs. I take enough to feel relief.

The lesions in the white matter can relate to your struggles with over-stimulation. This issue is not fully understood. This is a sign of your anxiety. BUT, your anxiety is not causing your symptoms. Your anxiety is a symptom of your physiological injury. Reducing those stimulation triggers is important. Foam ear plugs, tinted lenses, changes in environment, and such can be helpful. Yes, I realize there is only so much you can shut down in your life.

Your aunt's CSF leak issue is interesting. A spinal tap/lumbar puncture to measure pressure can sometimes indicate a problem. Some have an over-pressure issue that the spinal tap resolves immediately but returns over time.

I think the laying flat may indicate a neck injury that likes the lay flat posture. I have personal experience with this. When I am in my best posture, I sleep and wake up feeling alive. In the early days, poor neck posture would cause malaise and depressed pulse and BP and even suppress my breathing.

btw, I often get my best sleep in a recliner or laying flat. I use a very thin pillow but curl it around my ears so my head does not roll to the side. We figured this out when my wife noticed my facial expression being different with different sleeping postures. She could tell when I was going to have a good or bad day.

Where do you live? There may be some specialists in your area.

I'm sorry for giving you a fire hose of information. I suggest you print this out so you can read it at your leisure without the glare of a computer screen. You can even paste into Word so you can use larger fonts.

I have even more to tell you but......

My best to you.
Do you expanding on some of the concepts?

How does one know when they are dealing with multiple impact syndrome and how many concussive impacts does it take for someone to arrive at that point?

What is over stimulation and is it harmful for the brain or does it simply cause a surge in symptoms?

This is the first I've ever heard of lesions in the white matter of the brain. What are these and what are the implications around them?

Just trying to expand my knowledge on the topic of brain injuries...
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Old 02-25-2018, 01:59 AM   #6
Mark in Idaho
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BenW,

It is very difficult to scroll through posts that use the Reply button on the bottom right that quotes the entire post. The Post Reply button on the bottom left does not quote the previous post. It makes it much easier to scroll.

There is not a magic number for Multiple Impact Syndrome. It is more an accumulation of severe concussions over time that lead to the severe symptoms people like LMLS and I have. LMLS has quite a history of serious concussions. MIS also can have the more severe symptoms like serious memory dysfunctions and such like LMLS indicated.

Ben, Your concussion history and current symptoms do not sound anything like LMLS or mine.

The white matter lesions are imaged with Diffusion Tensored Imaging MRIs. They are just indicators of dysfunction. If they are what I have read about, they are not really lesions as much as they are areas where fluid flow is different than expected. As I said, not much more is understood yet besides the white matter signal being concurrent with anxiety and over-stimulation intolerance.

Over-stimulation just triggers symptoms such as fight, flight, or freeze.

Ben, You need to stop looking for issues that you can exaggerate and use to scare yourself. These issues do not have much application in your case. You risk creating a condition called cyberchondria. This is when a person reads about scary symptoms and becomes obsessed with the thought they have ever symptom mentioned. You should not be trying to expand your knowledge until you have recovered from both your PCS symptoms and your anxiety.

Do you know the old Indian story of the two wolves? Which wolf are you going to feed? The anxiety wolf or the getting better wolf. Google it.
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Old 02-25-2018, 11:18 AM   #7
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Thank you Mark, this is helpful.
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Old 02-25-2018, 03:23 PM   #8
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I struggle with overstimulation. Depending on the environment, it feels like my brain can’t process everything and it hurts. Some days I do better than others, but I haven’t sorted out why.

I have one white matter lesion. I also struggle with heightened anxiety. I’ve been told that mindfulness meditation can help strengthen the prefrontal cortex and reduce the size of the amygdala and thus reduce anxiety associated with a brain injury. I’ve been trying the headspace app for meditation.

Mark- have you heard if the overstimulation sensation can improve with time? I feel like I’ve stagnated with that even though I continue to expose myself to things that bother me. What’s your opinion on meditation? If meditation can reduce anxiety could that also reduce the overstimulation feeling? If you’ve posted answers to those questions before, please disregard me.
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Old 02-25-2018, 04:59 PM   #9
Mark in Idaho
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TomAce,

The first thing to do is stop looking at everything as black and white. The science is just observations, not solutions. There are plenty of studies that point to a single issue like mindfulness meditation and changes they claim result from it. But, do those imageable changes cause improvements? Everything is in shades of grey. We do best when we listen to our bodies.

Moderating stimulus can make a difference. Changing the intensity of how we take on life can make a big difference. Those who are intent on understanding every detail tend to be the people who have the most struggle with anxiety. Letting go of this need to have control over the details is important.

Over-stimulation comes from damage to parts of the brain that filter out extraneous stimulation. Those stimulations are always there. The brain lets them through without the normal filtering process.

Some believe this white matter and similar issues are the result of a break down of the blood brain barrier. This needs proper nutritional support and a reduction of stimulation to give the brain a break with less stress.

Think of it this way. It you injure a joint, you can splint and protect that joint and let it heal before starting a rehab program. Or, you can limp along for months and years because you never allowed the joint to heal.

My orthopedist, after scoping my knee and finding nothing wrong to fix but I improved anyway explained it this way. The scoping trauma caused me to give my knee a break for a month. This low stress recovery period allowed the unfound injury to heal.

We need to reduce our exposure to stimulation so our brains can get the break from stress so healing can happen.

I believe mindfulness meditation works because it becomes a disciplined time of giving the brain a break. Other relaxation systems can be just as beneficial. I changed how I was subjecting my brain to stimulation. Short periods were followed by quiet. I even rested up prior to planned stimulating events.

What people fail to understand is that these over-stimulation events are hard on healthy brains. The brain is not designed to tolerate such stimulation. People subject themselves to some of these over stimulations as a form of self-medicating. It triggers chemistry (dopamine and adrenaline, etc). Over time, this over-stimulation can lead to fatigue, anxiety, depression and more.

There should not be a goal of improving multi-tasking tolerance. Multi-tasking is stressful and harmful to the brain. Trying to do a cognitive task while being stimulated by sound, sight, feel, smell or other is multi-tasking.

The skill worth learning is Stop to think. That means stop the stimulations so you can think.

Listen to your body. Give it a break.
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Old 02-25-2018, 07:42 PM   #10
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BenW and Mark,

My understanding about DTI scans is that the very mechanism that they use is what makes it difficult to be precise about the details about a white matter lesion. As the DTI scan measures water molecules travelling along axons (correct me if I'm wrong), doctors can't specify what's going on where the fluid flow is disrupted/different from other parts of the brain. It could be that axons are damaged to the extent that signals can't be transferred over them, it could be that axons are twisted and thus are malfunctioning. Either way, it's a neural traffic jam due to (axonal) road work of some kind. You don't know what's wrong with the road, you just know that things aren't moving forward in your lane.


LMLS,

I'm really sorry to hear about your situation. In my experience, getting better comes parallell to learning more about how one's symptoms manifest themselves. Managing symptoms is key both for being able to go by from day to day and for getting better.

Reading about how you've lived what seems to be a very, very active life made me think of something: I've come to realize that before I hit my head against the ceiling, I was living in a way that was unhealthy in regards to how I was treating myself mentally. Thought patterns of insecurity and very high demands on myself triggered anxiety which in turn triggered pretty severe symptoms. I try to be more chill about things and therapy + meditation seem to be helping with managing anxiety. I'm not at all saying that you necessarily are weighed down by unhealthy thought patterns just because you've been living an active life, just that trying to chill out can be helpful when trying to overcome cognitive symptoms. There are no shortcuts. The physical recovery part can't be helped much by therapy or meditation, but you seem to be on the right track with your supplements.

People on these forums tend to be very helpful and they have helped me out a lot. 11 months after my injury, I'm back in university and I'm able to meet friends at noisy bars for over an hour now. I'm reminded of my symptoms very rarely these days. Things will get better than they are right now. Hang in there and take care.
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