Quote:
Originally Posted by Mark in Idaho
JakeD,
Sorry to hear about your struggles. Glad you found this place.
If the concussion specialist is truly a concussion specialist, he should be able to explain what you are going through. Unfortunately, many concussion specialists are oriented at determining 'return to work' or 'return to play' conditions and are not much help explaining the symptoms. They are even worse at empathizing with PCS patients. You are not alone. Most of us have experienced this same problem.
There are very few procedures that will image PCS. A neuro-psychological assessment is the most common. Functional MRI can work if done by a skilled technician under a neuro-radiologist's supervision and review.
If you will tell us about your struggles, we will likely have some understanding of what you are going through. We may be able to actually provide some worthwhile help.
I would bet that your biggest problem is becoming overwhelmed. The medical term for this is 'over-attending'. It means the brain is trying to do more than it can currently handle. It can leave you exhausted and in need of sleep and quiet.
You are likely suffering from Multiple Impact Syndrome. It can cause prolonged symptoms and a severe sensitivity to even the mildest movement of the brain. Believe me, I know what this is like. I can get immediate symptoms from shaking my head 'No.'
Please stay in touch. There are many people here for you.
My best to you.
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Mark,
Thank you very much for responding. I can't thank you enough. This is a very lonely experience I'm going through as I feel insane trying to describe it to people who haven't experienced it. I read the tbiguide and it did help. I realize now there's no one cure all, and that each symptom can be addressed and dealt with individually. However, when one symptom hits me, they all are soon to follow. For example, I walk down the stairs and all of a sudden I feel a little bit foggy, spaced out; it's difficult to focus my eyes on anything. If I do the slightest bit more of any exercise (the simplest walking or any kind of exercise for that matter) I'm a mess for hours, possibly days. When one symptom comes, all the others arrive very quickly: sound sensitivity, crying, pulsating on my head where I hit it, intense anger, inability to think or remember, nausea (sometime extreme), dizziness, fatigue (sleep for 12-14 hours.) Then when these occur, they last for days, weeks, sometimes months.
I think you're right, I am overwhelmed. Because the moment I notice any of these symptoms, I start thinking, oh no, not again. I can't go through another series of days like this. I start thinking, this will never go away or it's actually getting worse, it's degenerative. I start wondering if I'll ever be normal again. Honestly, I'm scared. All I can do when these occur is to lie down for a while and they subside slightly.
For the record, 95% of the symptoms went away after about a year. But since they all came back, some even stronger, I got really freaked out. I guess why I'm on this forum is because I feel kind of helpless. All I seem to hear is that I need time to heal, but when? Another year? More? And is there nothing that can help me in the meantime deal with these debilitating symptoms?
Again, thank you for your kind response. Just hearing from someone helps.
Jake