I went in to see my neurologist today and after several doctors giving me the runaround I actually got some answers and some support.

He wasn't happy that I am still having so many PC symptoms after almost a year, but he went through each one, and coached me on them. He told me to work if I felt like I could, and rest when I needed to.

He actually asked about my my self esteem, if I was feeling happy/depressed/anxious, and to gage my activities to keep as happy as possible. I told him about my migraines/headaches and the fainting and he checked my blood pressure (low) and gave me suggestions (add salt to diet, eating patterns etc).

It was just nice to have someone listen to my concerns. Other doctors have cut me off mid sentence or told me to wait until I saw another doctor and ask them. Three weeks of migraines won't bother them at all! This neurologist had even mentioned that he had gone against other Dr's that worked for insurance companies because he was more concerned about the truth.

After all of the stress I have gone through with being off work and on disability, and wanting to work, I finally feel like it is ok to just work when I can instead of trying to push through it.

Although he feels that I may not go back to the brain stamina I once had, he has at least given me a sense of peace in knowing that he believes me!


I recently read the book about a neuroanatomist who had a stroke (My stroke of luck)(?) and what she said is true, you have to celebrate the little successes.

That's awesome. It's refreshing to have someone actually listen and understand. That relieves a ton of stress.

The book I think you are refering to is: "My Stroke of Insight" by Dr. Jill Bolte Taylor. It was a good read. The other related book is "Over My Head: A Doctor's Own Story of Head Injury from the Inside Looking Out" by Claudia L. Osborn.

Thats the book, thank you for putting the name. I found it really interesting and inspiring how positive she was!

YAY! I'm happy for you JoanneBC!

I have to share a crazy story that might help the migraines. My daughter developed menstrual migraines following her head injury. They run in her dad's side of the family and the neuro said she probably would have developed them at some point regardless.

Neuro gave us Imitrex. I was nervous about side effects and just had a really bad, instinctive feeling about giving it to her. I asked my midwife what experience she had with patients with menstrual migraines. She said to have my daughter eat a little protein every waking hour with 8 oz water for the 7 days PMS.

We just went through the first cycle in 9 months without a migraine!!! I can't guarantee you it was the protein, but she had no zombie stares to nowhere, no headache, no chills, no out of body experiences! She never even needed a Tylenol. She still had some pretty serious fatigue for a day or so. We hope it works again next month.

If yours are at all related to your cycle you might give it a try.

All the best to you in your continuing recovery-

Hi Joanne,

I am so happy for you. I have never felt lower than I do today all because I am so sick and I can't find doctors willing/able to believe and support me. Reading your account has given me a little burst of hope you can't even know how much I needed.

When struggling against something as debilitating and misunderstood as PCS, it's so important that we share our little successes.

Joanne,

Isn't it an amazing feeling to have a doctor finally confirm your struggles. You finally have an advocate who does not think it is all 'in your head.'

Now you can go on like many of us with an "I am not crazy, just a bit brain damaged" perspective on life.

Good for you.

Oh thank you so much!
I truly appreciate these comments. I saw my therapist today and she is trying to get me into a group for post traumatic stress to help with some issues.

I do feel like I have an advocate now and these messages make me appreciate that even more. Now I can focus on that as opposed to my frustrations with the other doctors.

Hockey: I hope that you find a good Dr, I am sure that there is one out there!

Mark: I think that I can now work on accepting that this is just how it is for now and it doesn't make me any less of a person, just "brain damaged"!!!

Thanks again.