Dear mbrook,

I am so sorry for all that you are going through. You definitely are not going crazy! You have been through so much.

At times it can be hard to have faith when you are feeling so desperate, helpless, and in tremendous pain. Please do know and believe that you are still healing. It takes time. Continue to fight for your recovery and it WILL continue to get better in time.

I am sorry that friends have not been supportive. Unfortunately, many cannot understand an injury that they cannot see. When you look well and speak well, some people just don’t get it. That is frustrating to say the least.

Suggestion above to share TBI Survival guide with family and friends is a good idea. There will be some who still don't get it but others will have the ah, ha moment Mark mentioned. Awareness and education is a good thing to share.

It is my daughter who suffers with PCS. We have felt a lack of kindness, support, and understanding at times from some. Truly does add insult to injury. It can be hurtful although I know it is based on ignorance. I have to believe that one day they will understand. There is no point in dwelling on those that aren't supportive.

On the other hand, others will be very compassionate and understanding. I strongly suggest that you reach out to support groups as others have suggested here. It may help you to speak with others who are or have been in your shoes. You are not alone in this.

You mentioned that your doctor suggested anti-depressants and/or anti-anxiety meds but you were reluctant to take them. Honestly, I would listen to your doctor. It may help you significantly and is worth a try. It doesn’t mean it is forever, you are continuing to heal.

Try to focus and think about the positive things going for you and feel encouraged by your progress. You said that you are reading and driving again and that is HUGE progress. Look how far you have come! You will continue to recover and heal in time.

The great thing about joining a support group is that it not only can help you but can help others at the same time. You have a story to tell that may help others.

For example…initially, my daughter had trouble reading and that was absolutely terrifying. We were afraid she would never be able to read again and she was such an avid reader. It would have helped us tremendously to have spoken to someone like you who could say….”I was not able to read either but now I can read and drive, etc”.

Please keep fighting for your recovery. Be patient with yourself. You have been through so much and have come so far. You are healing and you are getting better.

mbrook.

I am with you about meds. I am on a SSRI and anti-seizure med. The SSRI has serious side effects. I take it to help with my mind getting stuck in repetitive mundane thoughts, what I call looping.

Anti-depressants are commonly prescribed for PCS. Often by well meaning doctors who are ignorant about PCS.

My SSRI causes postural rigidity (muscle tension) symptoms.

Amitriptyline is commonly prescribed in small doses ( 10 mgs per day) to help with some of the PCS symptoms.

Anti-seizure meds can also be over-prescribed. Have you had seizures that are being treated or are the seizure meds a preventative measure?

It helps with the frustration when the PCS patient takes some control over their treatment. By learning as much as possible, the PCS patient can make decisions about meds and other treatments from a position of knowledge. Just letting the doctors take shots in the dark as they try to treat the PCS can make the situation worse. Very few physicians have any true understanding of PCS. They tend to treat the anxiety and depression symptoms without much, if any consideration for the PCS.

The best physicians will listen to the patient and confirm the symptoms that are from the PCS. The patient often needs to know their symptoms are PCS caused and that they are not 'going crazy.' The TBI Survival Guide helps with this 'am I going crazy" issue.

Try to get to know and understand the new you. Then you can say, "This is just the PCS talking, not my mind going crazy. "

Believe me, we have all been there.

Have you had a neuro-psych assessment? It can help with understanding your symptoms.

Again, let us know about your specific symptoms. Someone will have gone through the same symptoms and learned accommodations or work-arounds for dealing with them.

My best to you.