NeuroTalk Support Groups - PCS or permanent Brain Damage?

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- Traumatic Brain Injury and Post Concussion Syndrome (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/)

- - PCS or permanent Brain Damage? (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/179710-pcs-permanent-brain-damage.html)

Hi,

I would like to add here if I may.

I, for one, agree, with Mark on the 6 segment YouTube called "You Look Great." Nicely put together, and worth the look, listen and family watch.

I also do not agree with Mayo's approach on pushing it.

Its your body and brain - listen to it - do not overdo.

I do not have the contracts for the child care, but over the past 2 1/2 years from my injury I had the contracts with self to deal with patient care, obligations for family responsibility to provide for them, and work, and provide for my supervising physician's patients' care in a hospital setting, both in the hospital rounding setting and in the surgical suite - surgical assisting. Pushing became a literal nightmare and symptoms became so bad that I was forced by my own responsibility to pull out of settings and limit myself to the point of being worthless to the patients, the physicians and the employing hospital - needless to say I was terminated.

My Neurologist upped my meds repeatedly to no avail, and eventually, when out of work, and finally settling into not working and actually RESTING, new meds began working when we found the right dosing - headaches (daily) resolved to a much more tolerable level, other symptoms settled into a more tolerable level, only few cognitives remain and are being addressed.

Please, continue your vitamin , mineral, herbal regimens; listen to your body; REST; back off to the point that your body is satisfied - even if its cutting back on what you are doing by greater than 50%.

Find that restful music, that restful state, and let yourself have that time to begin the real healing process.............it will mean that your docs will have to listen to your schedule, that you set, including resetting your therapy schedule.........they don't get to push you, you set the pace.

Be Good to yourself, and give your body the time it wants for healing.

Quote:

Originally Posted by Sara from Minnesota (Post 931515)

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 :(

I am similar to you and have two young kids, professor, etc. it is hell. But it gets better! I was exactly like you at that stage and am now 14 months...starting to see glimpses of a better life. It happens gradually. I had to miss my kids' activities for a year...and now able to attend some. Please hang in there. I hated amytriptylinr and loved amantadine (check it out). Stopped amantadine due to insomnia though. Church will not be good for you because too much noise, too many people. Your god will forgive you and in fact will want you to do what you can to heal. You will get better. Hang in there.

Sara...

I can COMPLETELY identify with everything you are feeling.

I am a 33yo mother of 3 kiddos 3, 5, and 6yo.

As mothers we have no choice but to push through. Especially when there a low support system.

June 26, 2012 is when I was at a red light and rear ended due to him not even seeing the intersection and hitting me at 50mph...
I was looking over right shoulder into back seat upon impact.

Diagnosed as whiplash...blah blah..

Close to 5 months later...I am not doing well at all.
I have lost 18 lbs due to absolutely NO interest in food.
My BA is in health and wellness and pre kids was a fitness instructor/trainer.
I know how important it is to eat and I LOVE food...
but the thought turns me off...
Late in evening I have moments where I can eat...and choose something high fat (like ben and jerry's, hehe) to maintain.

As I sit here typing this to you...
the nausea is building..the head pressure is setting in and my ears are plugged adn aching...
My headache is coming on.....on the really bad days..its all over head, all day..
Good days..just stays in right temple.

My 3 yo keeps asking for snacks....and its is really setting me off...causing me ridiculous anxiety! All symptoms are hitting me hard right now.

I wake up pretty decent in the morning...and have small windows of "feeling good"....
As day progress and with certain stimulaiton or stress...I get hit hard with all the icky stuff.

Ugh...I am super nauseated just thinking about it.

I am so thankful to have found this group...and also the amazing PCS group on facebook.
Are you a part of the group? Are you on FB? I can send you an invite if your not apart of it yet. (or anyone else interested).

Feel free to email me.
Its nice to be able to connect with others...to feel less alone and less crazy.

big hugs to you!

Sabrina
Maine Mamarazzi

Dear Sara,

Wow you are blessed here with so much help! People have taken a real liking to you. I am pleased we can all help each other. Firstly I feel for you I really do. I am so sorry you have been so "Low"! It must be awful for you to try and get your head around a whole new life pattern when you are clearly a talented woman in your own right.

When I first came on this site I was told "recovery needs patience". The word patience conjours up horrible visions for me of waiting at the end of the queue for dinner in junior school when I'm hungry. No one likes to wait for something they need.

You will be fine. You will!! You are alive, you are being a mum, you are a wife, you can see, you can type.
But - You have lost an incredible amount, I can see that. I am so sorry for your loss. However you are the only one who can decide how you will choose to go on.

You cannot go on for anyone else, not even for your two children. You must choose to go on for you. When someone gets cancer and they are having chemotherapy and their hair falls out, they get support, understanding and love. You have an invisible horrendous disorder. Do not underestimate how terrible this is to live with. But being invisible means you will not get support, understanding and love. This is your battle.

You have this web site, you have the love of your husband and your children, but you must devise a plan in your mind and the plan must be this :
I DO NOT KNOW WHAT TOMORROW HOLDS, I DO KNOW I GOT THROUGH TODAY AND I CHOOSE TO SURVIVE TOMORROW. I ACCEPT THIS IS MY NEW WAY OF LIFE FROM TODAY ONWARDS AND IT WILL GET EASIER.

I did not say it will get better, because you do not know what tomorrow holds. It will and does get easier.

Tell your husband that you are a hard working mother and he must accept that when you say you need quiet rest or time you MEAN it!

Lots of love to you, keep in touch and good luck.

I am so thankful for all of your thoughts and uplifting words. It is so good to have all of you out there who KNOW what this is like! In a split second your life changes and it is devastating. Today I managed to go outside for a short time and put tree tops in my front pot..... amazing how in the past that would not be something I even thought twice about, and now it was an exhausting endeavor!!

I spent time at Mayo clinic again on Friday and met with someone I actually connected with.... and who was very understanding and had some good advice about how to structure my days. She was an OT who has been in the Brain Rehab group for over 20 years.

I would love to hear more about each of you and look forward to connecting on a regular basis....

XOXO.... Have a great Sunday everyone!