Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 02-18-2018, 03:52 AM #11
Mark in Idaho Mark in Idaho is offline
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The is a big difference between the exposure as therapy protocol and the moderated return to life that most suggest. Few support the idea of a dark room and retreating from stimulation.

Most, especially here, understand that concussions increase the tendency for anxiety and depression. The challenge is that many are predisposed to anxiety and depression prior to their concussion. These people have a serious struggle. They often are reluctant to accept the negative impact anxiety has on their recovery. When they accept that their depression and/or anxiety needs attention in order to move forward with recovery, recovery usually starts to happen. Getting stuck in the mud of depression and/or anxiety not only prolongs recovery but it can make symptoms and disabilities worse.

Many doctors and other professionals see concussions as an industry and want to over treat. OT, VT, ST, and PT can be over prescribed, often in a shotgun method. The challenge is the common goal of therapists trained in using metrics to chart improvement or lack thereof. This can be anxiety inducing. Many in the concussion industry push the idea that every symptom needs to be treated versus many symptoms need to be allowed time to heal.

Our modern day impatience of 'Doctor, fix me, now.' only makes recovery more of a struggle. Many of the best recoveries come when the person has learned patience. They have ah ha moments when they realize, 'Ah ha, I haven't noticed xyz symptom in N weeks.' or 'I forgot my ear plugs and was able to handle the noise of that restaurant.'

Journaling, whether personally or having a therapist or doc continually ask about symptoms can get in the way.

As I often tell people. Stop checking to see if you have any symptoms. But, therapist usually start every session asking about symptoms.

Other than being a form of hand holding for the concussion patient, there is not much evidence that shotgunning therapies improve recovery times. But, the concussion industry knows they can bill for these therapies.

Taking a slower and individual approach often pays more recognizable dividends. Vision can cause balance issues that get a vestibular therapy focus. Without resolving the vision issues first, the vestibular issues can persist and become frustrating.

If you spend some extended time reading about the experiences many NT posters have with 'concussion specialists,' you would see why a generic referral to OT is just that, generic. OT can do more to help a patient understand that their symptoms are real and to not fight them than to provide a healing therapy. Many with PCS are confused as to whether they are some sort of crazy or they have valid dysfunctions.

Experts have found that accepting and having a basic understanding of what these strange symptoms are so that one does not fight against them but instead moves forward by moderating them is the best way to improve.

btw. I have had PCS for 53 years. I have been under a doctor's care for concussions since 1994. I have been researching concussions seriously since my last in 2001. I have seen hundreds struggle with doctors and therapists, especially the shotgun approach. The common experience is less therapy is usually better. Understanding our symptoms so we can seek targeted therapy is usually best. Baby steps are often needed.
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Old 02-18-2018, 10:05 AM #12
TomAce994 TomAce994 is offline
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Mark,

That is a great post. I wish I had seen that in the early stages of my injury.

I was not over-prescribed therapy initially. I was quite the opposite in that I saw doctors who didn't really give me much guidance other than "time". I was not told how the injury affected me, and at the time I did not understand the anxiety associated with it. That is why I shared the article.

It has been my experience, that more people tend to be under-treated than over-treated. I can't imagine where I would be right now if I had followed my first neurologist's advice. But I agree with your comment about "shotgun therapy".

I could not agree more regarding being too focused on one's symptoms. That has been a challenge for me... how can I not focus on my symptoms when they're in my head?! But I have had a few of the "aha" moments you described.

I've spent a good deal of time reading messages on this board before I even posted. I'm sorry for what you've been dealing with for so long. Clearly you are very knowledgeable on the topic.
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Old 02-20-2018, 04:18 PM #13
Katiess1128 Katiess1128 is offline
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I understand that he needs to complete his therapy and I am doing what I can to convince him of that but at the end of the day I cannot force him - I'm looking for other advice and resources please.
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Old 02-26-2018, 02:31 PM #14
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Quote:
Originally Posted by mfurest View Post
I'd love to hear other's experiences with all of this.
Hi. I'm new to the forum and haven't ever really talked to anyone about my TBI experiences. It's definitely been a long road.

I got my TBI when I was a teenager, and was unconscious for quite a while and then developed chronic migraine and depression after. I spent a night in the clinic and got my face closed up and they woke me up every half an hour, but after that I went back to schoolwork and sports the next week, which we now know isn't what you are supposed to do. Unfortunately, I'm pretty stubborn and love to be active, so through sports, I managed to sustain 3 more concussions before I stopped being so active. If I could say one thing to people who have gotten a TBI or a serious concussion it would be to take the advice of their health care providers seriously and take the time off after the first brain trauma and also protect their heads and stop getting more concussions in the future. I didn't get another TBI, but I definitely messed my head up.

I have been pretty religious about trying to stay in shape, exercise, eat well, and do what I can. That said, since the TBI I have suffered from depression, low mood, and chronic migraines. The migraines most often center around where my TBI was. I am on preventive therapy for them with topiramate and emergency therapy with some mild pain medication and triptans when needed, but due to work I rarely can take the latter ones. I try to stay hydrated and exercise. For sleep I tried sleep meds for a while but they messed me up so now I use melatonin instant dissolve tabs every once in a while.

I have a hard time focusing and sleeping, and can be a bit moody. I am an ENTP (myers-briggs) which means that with that personality type I am a direct and un-emotional person anyhow, but I think that the TBI may have worsened some aspects of my personality. It is hard to say - I definitely am not risk-averse and am pretty direct and emotionally blunted.

In terms of meds, I would say be completely candid with your husband's doctor, and don't be afraid to "start low and go slow" especially with mental health and sleep medications. Often prescribers push straight to higher doses when lower ones would work with less side-effects. Also, don't be afraid to push for medication changes if some meds don't work well or have bad side-effects. There are lots of options out there.

I have started neurofeedback and TENS therapies which are interesting. I felt especially from TENS immediate changes, but not permanent. I need to go back as I didn't finish the treatment.

It is frustrating I think to not function at my highest level. It is also strange because when I have migraines I can't think or function, so I am on the topirimate, but as a side-effect it causes cloudy thinking, so I'm not at my mental best. But of course without it I'm not at my mental best. With the TBI I'm not at my mental best, but would it be better without the topirimate? I went off it for a while but the headaches were almost debilitating. Hard to know. People tell me I'm smart but I feel like I am a pretty muted version of the self I would be without the TBI. Not that I can rewind though.

Anyhow, sorry for the long post. Nice to meet you all.
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Old 02-26-2018, 05:43 PM #15
Mark in Idaho Mark in Idaho is offline
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Sehah,

Welcome to NeuroTalk. If you have any symptoms that you could use some help with, please feel free to ask. You can start your own thread is you want.

As you have already experienced, migraines are a big challenge. Some have found there can be an upper neck isue that can trigger migraines.

My best to you.
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