time, time and more time
 

I dont know how many of you are sick of hearing this phrase. I know it takes time. I've giving eight months of time. All I do is sit here day after day while life moves on around me. I see a neurologist, neuropsychologist, neurosurgeon and a therapist. They all say the same thing. I see them once a month only to be told come back next month. One of my neuro's said he didn't know what to do to help me so we do nothing. Script more meds and see me back in about three months.

I'm not sure if enough is being done. I still have this awful whooshing sound and head pressure. Today I woke up and my left eye hurt so bad. (new to me) I had a headache but the eye pain concerned me. I thought it was going to pop out. I layed down and when I woke up it's better but still hurting. I wonder is something else is going on with me. When I ask they say I'm anxious. Well who wouldn't be. I'm an active, take charge and get er done type of person and now I'm forced to be inactive and take a wait and see approach. Is there more than I can do?

I have no answers for you, but I can empathize. That's what they're saying about my son too. He is undergoing more tests today and going for all results on Wed. The doctors just keep saying relax, wait, it just takes time. Pretty soon they'll be drugging me, bc I like answers. Try explaining that to a 14 y/o athletic social bug who hasn't been in school for 5 months!

:hug:

By far the worst part of PCS is the waiting. It is magnified for those of us who are go-getters. We tend to be far more anxious, too.

I am fortunate in that all of my problem symptoms are managed well with Paxil (60mgs) for the anxiety and looping thinking and gabapentin for the body jerks and need to relax my mind to sleep. Neither effects my cognitive performance.

When I was on clonazepam ( a benzo like Xanax and Ativan ), my days were miserable. I was foggy too much.

The Paxil took a while to get used to but it was worth the effort.

I am a firm believer in minimal medication due to the myriad of side-effects from the mix of too many.

It helps me immensely to find simple tasks to do with my hands. It keeps my brain occupied without over stressing it.

We just squeak by financially but that is OK. When I look at the families who are struggling worse than us and have no disability, I know we are OK. Now, If I can just get my finger to spell "know" properly. They are determined to spell it knwo. But, I have to let those little annoyances go. They are not a battle worth fretting about.

Try spelling/typing this word: amitriptyline.
If you spell checker underlines it, check the suggested correction. If it does not underline it, spell it with an error and see what the spell check suggests.

My spell check suggests I am trying to type 'pantyliner.'

Now, how does a sophisticated computer program make such a glaring error? When we complain about our own brains, just remember spell check. At least we don't speak the errors like spell check suggests.

I misspell words so often that my spell check is clogged with the misspellings because I erroneously clicked on 'add to dictionary' when I was trying to click on the correct word. I ahve to routinely edit my spell check dictionary.

We can go on even if our brain's fail us from time to time. There are many people with healthy brains that struggle worse than our injured brains. I see them driving and texting on their cell phones at the same time. Who said they can have the whole road?

My best to you all.

I'm like you - a git 'er done kind of person. A-type.

I would suggest finding a way to get off the meds. I didn't get on them at all and have survived without them. Also find a way to do "therapy" by playing games, doing puzzles, doing things you've never done before (that are safe).

Plan for times with activity, and times with rest. Gauge yourself every week or two to see if you've progressed or have someone gauge you.

I tried to wean off and relapsed. I hate being on meds! I feel like im stuck.

What meds did you wean off and what were your relapse symptoms?

Some symptoms can be caused by the need to adjust to being off the meds.

I disagree with bh_pcs about doing self-therapy. I suggest finding activities that keep your mind marginally busy, more like 'occupied' to help you through the boredom. Challenging your brain with taxing tasks may be too much right now. Better to get to a stable position before working on regaining cognitive and memory skills.

The goal is to get past the uncomfortable and disorienting symptoms before working on challenging the brain to regain skills.

It is very easy to regain skills compared to getting recovery from the physical symptoms.

Mark,
I tried to wean off my amitriptaline. I weaned off very slowly. I got down to three days of 25mg, coming down from a hundred. Now I just started lexapro and day two intense left eye pain with headache. I also got nausuas. I want a baseline off meds to
see where im at.

I certainly understand what you mean. I've been waiting for over a year now for my symptoms to go away. Today was a TERRIBLE day. I had a dizzy spell similar to the one that came right after my injury. I also tried to start a new full time job today and realized I am not ready at all! I came home and cried...I'm still extrememly sad and depressed.

Nitro,

Im so sorry you are still having these issues. It truly is the most frustrating thing ever. I haven't been cleared for work yet. And I think if I tried I'd be in trouble. Hang in there my friend.

Wow, crystal. The eye pain sounds horrible. Has it gone away?

Trying to get to a no med baseline sounds like a worthwhile idea unless the symptoms get too rough.

My best to you.

I'm assuming you know what your brain can handle. I'm not telling you to overexert yourself, Crystal. People who are motivated get tired of people telling them they can't do anything to help. So why not do it yourself?

No one will help you unless you help yourself. And in this case, No one can actually help you because they don't know either.

I swear, there really needs to be some sort of system that can be developed to handle the emotional and cognitive components for recovery. Neurologists can only do so much.

My eye pain has lessoned. Thankfully. It was awful. Im gonna ask about weaning when I go back.