Finding a specialist - super discouraged
 

Today it's been a week since I went off my pain meds. I've had a headache ever since. The lowest it goes is 2, and it's been up to 7 several times. I also have sciatica and between the pain from my head and my back, I'm not sleeping well which I'm sure is making things worse.

My family doctor's only other recommendation is acupuncture, which I have tried in the past without much success. My neurologist has no recommendations for pain management but would like to see me IN AUGUST "if you're still having problems." I question whether I can survive until August. Sometimes it is a struggle to get through an hour at a time.

I am trying so hard to get better and I am so frustrated. I am trying vision therapy and also spine rehab. I'm not sure if they're making things better or worse. I keep trying to find someone who specializes in post-concussion syndrome but can't find a directory or anything. Does no one exist, or do I just not know how to look?

Just feeling very down and discouraged and in pain this morning. Any positive thoughts welcome, and also suggestions on how you found a doctor who was actually helpful.

Eowyn-

It sounds like we have a lot in common. I am also an educator, in a special needs school, and spent 3 weeks at home doing grades, lesson plans, etc. I really think that is what prolonged everything so much. I too hope to return in the fall, but I'm not sure if I'll be able to either. I completely understand how frustrated you are... it is just awful.

As for your pain, I understand there too. Still struggling with migraines. My neurologist basically told me that they happen sometimes and to come back in a month, no meds no suggestions, etc. This, and some other problems, have me seeking a second opinion. My PCP didn't think my neck injury was a big deal after the accident, however, I think this is contributing to a ton of my problems right now and hope to get this checked out too.

Having that much pain, and having your life so restricted, and Drs who don't understand, is really depressing. I've really struggled recently with all that I'm going through and can imagine why you are so frustrated.

Who had you on pain medication? Perhaps you can call them and explain that you have gotten worse and need help until you are seen again. It seems to be where I live, the squeaky wheel gets the grease. I'm not that kind of person by nature, but I've learned to whine and cry until someone trys to help me.

Wishing you the best.... we're in this boat together

ugh... as an educator, it kills me that I STILL can't type things, say things or think things, without some sort of processing error.... "trys".... ugh... should be tries

Hang in There
 

It sounds like you are going through a hard time right now. I will keep you in my prayers and I just know that there has to be a way that you can get a second opinion. I wish the best of luck to you and I hope your pain goes away too.

Take care,
~Jenna :)

I'm currently seeing a specialist and am wondering if it's even worth going. I see him twice a month. Each time I go I complete a survey of how my symptoms are in the past 24 hours. I've been told to avoid things that bring on symptoms; which are reading, watching television/movies, using the internet, talking on the phone, sunshine, walking/exercise, getting excited, anxious from doing nothing, lack of good sleep at night from napping during the day, and sex/masturbation.

Bottom line from the specialist: Don't do things that bring on symptoms.

I'm almost 5 months now and still can't believe this is my new life.

If we were all Buddhist monks PCS would not be that bad.

I do started thinking about a monk life where you go into a stance and forget any worldly/materialistic/bodily matters. Interesting you mentioned that. I do Meditation called Transcendental meditation and briefly (like few minutes) I forget my symptoms.

Besides that my symptoms are there every single minute (except when I sleep) and been there for 2 years. Just sitting/lying down quietly with no stimulation does nothing to bring the symptoms down either. Do I have to go into a coma?

I live an isolated life and hardly talk to any one since talking itself bring the symptoms. I saw a new Neurologist this week and he listened to me for an hour of all my complaints. He wants me to slowly push through it. Exercise, yoga, tai-chi, eye and neck exercise etc., If not he thinks I end up like this forever. He also prescribed a very low dosage of Topomax. He only said let us try. He didn't give any false hopes. Finally I met a Neurologist who can think and realistic about PCS.