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Old 11-04-2013, 11:36 PM
anon72814
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anon72814
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Default Lingering questions and guidance

I've been reading posts for a few months now and still have a few lingering questions that I was hoping someone would be able to give me guidance on.

The story: On 7/1/13 I was hiking and walked or turned into a horizontal pole, I can't remember. I didn't become unconscious at the time and this was my first concussion that I am aware of. I am in my 30's and live by myself and my pup. Over the next few days I attempted to go into work only to have to go home immediately. On 3rd day had a CAT scan that came back clean. Over the next few days/weeks my symptoms became worse and I was diagnosed with PCS. The symptoms began with dizziness/balance problems, cognitive problems/confusion/brain fog/dazed demeanor, memory problems (unable to recognize ppl), extreme fatigue and exhaustion, light/noise sensitivity, headache, nausea & minimized taste/eating. In beginning of Aug I was also diagnosed with Graves' disease, which they stated was triggered by the concussion. I primarily spent July/Aug sleeping and/or laying in bed, walking my dog around the block, and doing very light reading and watching some Law&Order. In mid-Sept started to feel less overstimulated, headaches almost disappeared along with the light/noise problems, the balance and dizziness were gone and my appetite somewhat returned.

In addition, did not get overstimulated running simple errands and was able to travel out of state to see family (although there wasn't many activities and I napped daily). I truly believed that many symptoms were from the Graves' (even though my doc stated otherwise) until in mid Oct returned to work part time (as a finance manager, which I love) only to have a huge setback and have become unable to work.
I am now suffering from daily headache/migraines (quantity and severity have increased), brain fog (I feel drugged), slowed and slurred speech (new symptom), extreme fatigue, nausea, and lack of taste/eating has increased.
I had a new MRI, however it has come back clean again.

Onto the questions:
1.) When I saw a neurologist, they stated that amount of fatigue is not normal with someone with PCS and stated it was more typical with someone in a coma (which I was not). She stated that I should be sleeping no more than 8-9 hours with no more than a 30 minute nap. Before the accident, unbeknown to her, this was already my typical sleep schedule or I needed copious amounts of caffeine to get through the day.

Granted I was training for half marathons at the time, but I cannot fathom how this is even possible now as I literally need to lay down after walking around the block or performing menial errands. In addition, I was sleeping through July/Aug and I ended up feeling better. Is it better to rest when my body needs it or to limit my sleep?
2.) The neuro and my primary have not been clear but have alluded that they think the lack of taste, exhaustion, and flat personality could be from depression. When I advise that I don't feel depressed,distraught, sad, etc. (like, at all), I feel like they are trying to convince me otherwise to explain the symptoms. I currently have a healthy BMI and have stopped losing weight after the Graves' medication kicked in.

I have previously been depressed (like a 10 yrs ago due to the death of a parent) and have never had a problem eating (in fact it's usually the opposite) and really believe I would know if I was I feeling even sort of down or depressed. When I realized this was going to last longer than I thought, I made a point to see a therapist, regularly schedule outside activities and to see friends, however the latter make me even more fatigued than ever.

I have been anxious during this process due to fear of losing my career, however it has subsided once I learned that they will hold my job for a year. I struggle to be an advocate for myself (which I am learning in this process) and do what worked for me before the setback or to give into every suggestion that is made to me by doctors, even though some of it has been crazy in hindsight. Has anyone else experienced this?
3.) I know it is 6 months out until I lose my job, however I am anxious that I may not be okay to return to my previous career (which I enjoy and am modestly successful at) due to the cognitive challenges. I see that there are people who can somehow work and go to school with these symptoms. My job requires quite a bit of interaction, multitasking, problem solving, and is very detail oriented. Can you give me suggestions or what has worked for you? I do not have financial assistance after CA disability runs out and I petrified to lose my independence and have to rely on aunts/uncles for a place to live (which I think will be a stressful environment).
4.) I am scheduled for Neuro Cognitive testing, however the secretary have made it clear that it can be challenging to get approved since it is only PCS. The cognitive functions are really my #1 concern thus far. What is the best course of action if it is not approved? Has anyone else had challenges with their insurance approving it? I don't want to return to work without testing my brain prior since I don't want staff and my superiors to lose confidence in my abilities and I have already tried multiple times unsuccessfully. What else can I do to make sure I am prepared to return to work if not approved?

In the meantime, I have been prescribed:
Nortriptyline 20 MG daily
Relpax
Cambia

Sorry for the novel, but I wasn't sure how to ask these questions without the background info. Thank you for any additional guidance that can be provided!
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