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Old 11-14-2012, 04:36 PM
Sara from Minnesota Sara from Minnesota is offline
Junior Member
 
Join Date: Nov 2012
Posts: 34
10 yr Member
Sara from Minnesota Sara from Minnesota is offline
Junior Member
 
Join Date: Nov 2012
Posts: 34
10 yr Member
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I am very thankful to hear some response. This is where things get confusing.... In early Oct. about 2 weeks post surgery is when I was diagnosed with PCS by my neurologist at the Mayo Clinic.... they then referred me to the Brain Rehab group at Mayo. This group consists of OT, PT, biofeedback (how does this compare to neurofeedback)...anyways.... AND I see a neuro-psychiatrist. They recommended slowly stepping back into life.... pushing myself on days I do not feel well and holding back on days I feel well. I never feel well so I have never had to "hold myself back".... but after spending some time on the boards I think maybe I have been doing too much. They said because I was so long post accident that "rest" was not recommended but more of a light schedule where I try to add more in.

My days are usually as follows.... get kids off to school (I have 2 kids ages 10/7)... come home and try to do some light picking up/laundry etc. During that time I usually get so dizzy that I have to lay back down. I also have been trying to walk a mile a day in the neighborhood. In addition, all my doc appointments are almost like a full time job in and of themselves.... and walking around Mayo is EXERCISE.... At 3 I pick kids up and try to help with dinner/homework routine.... I get nauseous just reading the homework at times. I usually fall into bed around 10 near tears that I live a life of being SO ILL. I cannot even describe how ill I feel throughout the day.... I feel like I am tipping to the left at all times and the dizziness and nausea are constant. I only have headaches on occasion. They are always on the top of my head and also cause nausea. I honestly did not know someone could be this sick and not dying.

On the weekends, I try to attend my daughters indoor soccer games and I go to church. Other than that I usually have to lay down and rest.

Could I be facing a life of this? I know everyone is saying I am very early on in my recovery but each day feels like a month. I would rather have headaches than nausea.... ironically the few times I get headaches I am ON balance.... I do not get it.

So... in addition to Amitrip. 20 mg, I have been taking fish oil, Vit B, E, and D.
I am in total despair and feel like my life is over.... also, people want to come visit and sometimes drop off food (which is nice) BUT that is exhausting as well.... sometimes it is hard to converse with people.

My husband is wonderful but very frustrated with me.... says I need a better attitude . I keep telling him he has no idea what it is like to live this way. I have to be honest that I am at a low LOW. I can't imagine ever recovering OR living like THIS. I am so thankful to all of you and definitely need support and HELP. By the way.... the Mayo clinic has not been helpful at all. I know people think "oh the Mayo Clinic".... well... let me tell you, they know nothing about TBI ... Dr Staab my Psychiatrist is a leading expert (I guess) on dizziness in the WORLD and has written some books but HE is the one who tells me to keep upping my Amitrip... which I refuse to do (I have enough issues without drug side effects)..... and he says nothing about the dizziness I have constantly,... except to have my husband shake his head back and forth then try to do something so he can see what it's like.

Has anyone else just wanted to DIE they have felt so awful? If God held out his hand to me I would accept it in a heartbeat. I NEVER thought I could ever write something like that with 2 kids etc. BUT it is the truth
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"Thanks for this!" says:
Theta Z (11-14-2012)