The Long Road
 

Hello. I was in a car accident over a year ago. A month later I was diagnosed with PCS. I was told that symptoms clear up with in 6 months to a year. I ignorantly looked toward both the 6 month mark and the one year mark with the big hope of "well, this must be it."

My GP sent me to a neurologist after things not getting better after four months in. The neurologist put me on amytriptyline. Things got better after many weeks and I would say I had about two months of almost feeling like myself again. Then in December I slid backward. She upped my dose from 100mg to 150mg. It took me twice the time to balance on them, and just as I started to feel hope in feeling better again, I've slid farther than before.

My neurologist doesn't listen to me. The last time I saw her, a months ago, was for ten minutes. I told her about my balancing trouble and the severe depression I was experiencing. She said she was so glad I was feeling better and she didnt need to see me for another four months.

I walked out determined to find someone new to help me. Since then, I have stilled gotten worse with the amytriptyline. I want to get off it. I have not found someone else to go to. And now, my neurologist won't return my phone calls or make an appointment with me because of the medical debt I have not been able to get out from under.

I am uninsured, unhealthy and really really unhappy. Finding this forum today has been amazing. I wish I had found it a year ago. I have started to read the related posts, but I can only push myself to read so many before I just can't. . . well you all probably know about that.

I have four specific questions I would like to ask, then I'll resume filtering through all of the information already posted.

1) Is is smart to stay on the amytriptyline? or should I ween off like I very much would like to do?

2) I was a runner prior to my accident. I have missed it and started to get back into it slowly over the past few weeks. My back to fitness coach and physical therapist were both supportive and helped me set up a plan. It has been difficult. Am I only hurting my progress with such physically demanding exercise?

3) I sense of taste, and my food preferences changed dramatically. And almost instantly. Couldn't eat anything rich or sweet for a very long time. This has gotten better. More than anything however, I crave salt. Has anyone else experienced something similar? I've been told that its not a symptom of PCS, but cant imagine it being anything else.

4) I have discovered certain foods seem to have a beneficial effect on me. Red Grapes, Strawberries, Almonds, Red Bell Peppers, Lime, Powerade. And again anything with a high concentration of sodium, like Velveeta. Has anyone else discovered similar responses to food? Any food advice out there?

Sorry so long, but I am so excited to have the opportunity to talk to other people who are experiencing or have experienced what I am going through.

Oh! and Mark in Idaho? That TBI survival guide is beyond fabulous.

Your dose of amitriptyline is unusually high. Amitriptyline is usually prescribed at 10 to 20 mgs for PCS. I would seriously consider tapering down to a low dose.

Check online for tapering down guidelines or ask your pharmacist.

PCS can cause serious taste changes. It appears you have quite a change to your taste buds. Craving salt is usually your body telling you need salt. You may be consuming less salt with your change in taste preferences. I know that sodium and calcium can get messed up in how your brain uses them with PCS. Maybe this is a cause.

You need to learn how to read your brain as it reacts to you exercise and other tasks. You want to reduce your effort before you cause a rerun of symptoms.

Let us know how you are doing.

My best to you.

Hello, oneid1hrn, in Minnesota -
How's it going this weekend for you? I hope that you have been able to get some helpful info from the community forum here to help your next direction to take. As Mark in Idaho said, let us know here how you are doing and what help you may need.

I know it can take quite some time over several different days/weeks to read-up on all the postings here. There is a wealth of information, well worth the time and effort --- just don't over-effort to do so.

Take good care & keep in touch.
Theta

Hi and welcome to NT!

I got my PCS in a car accident three years ago, so I know the frustration you feel when you don't get better when you're "supposed" to. Doctors even seem to blame you for this and treat you like a malingerer. Sadly, doctors are not well versed in concussion and bad experiences with neurologists seem to be the norm.:(

I'm not too well today, so I'm just going to address one of your concerns: exercise. I was a super jock before my accident and changing my routine wasn't easy - but it was critical.

Running is not generally a good activity for folks with PCS. Each time your foot hits the ground, the impact travels through your body and gives your brain a little shake. (Your brain probably can't take even the smallest shakes, right now.) There are special shoes that can help absorb the impact, but I still think you'd might be better to take up swimming or yoga or something else that isn't jarring.

Additionally, you might want to be careful about increasing your heart rate as this can trigger headache in some PCS folks. I worked with a trainer to develop a routine that was PCS friendly. I do find that exercise helps me deal with my other new PCS problem, depression.

If you're not seeing a good therapist for depression, you should consider it. PCS can be life-altering and it's not something most folks can adjust to without help.

Cheers

One other thing...
 

If you haven't already done so, you might want to contact the Brain Injury Association of America www.biausa.org They might be able to help you access financial assistance and locate support groups and better physicians in your area.

Your local BIA chapter is:
BIA of Minnesota
Board Chair: Paul Godlewski
Executive Director: David King
34 13th Avenue NE, Suite B001
Minneapolis, MN 55413
Phone: 612-378-2742
Toll Free: 800-669-6442
Fax: 612-378-2789
E-mail: info@braininjurymn.org


Cheers

Just a word about the amytriptyline....it's very powerful. You shouldn't make any changes to your dosage without consulting your doctor. If both of you agree that you are you are going to go off it, take Mark's advice and taper off. Go down by 5 mg at a time with lots of time in between.

Hi im new to this site just reading your post and yes my taste changed i couldnt eat chocolate milk ketchup for five years it was all bitter. But am now starting to enjoy it after six years still cant drink coffee . Same here with specialist they think im putting it al on as all my test results were within mormal range . I have to be careful with excercise too as it can trigger bad headaches . Do you have any trouble with noises like being in a restaurant multipleconversations . It has left me from doing anything social .. am trying to find some good ear plugs .. i hope you get your medication sorted .

Hi
 

I'm in Minnesota too. Plymouth. Curious who your neurologist is? Not thrilled with mine, but she's ok. I had a hard a time finding a doc that wanted to take a workers comp case. Long story. I only take topomax. I also go to the dizzy and balance center.

I agree that you should connect with the brain injury association that the other poster posted. Let me know if I can help.
Su seb

Su Seb,

This thread is 3 years old. Only katesh has posted to to this thread since May 2010.

katesh, Is there anything we can do to help you ?

Hi
Welcome, sorry you having problems, I too suffered with taste changes at the Begining. I am 10 months in . It was really weird didn't like wine,garlic bread, or anything spicy, even.Certain program's on TV I started to dislike. Weird !! And my sense of smell changed too.
After around 6 months things started to slowing return to normal. I lost over a stone in weight. Regarding medication I would consult with you Dr on that.
I would suggest you donot run or put your body under any physical stress. and try to rest often . Take up some meditation or yoga. I found my symptom s improved greatly after starting yoga twice weekly and continue too. It also helps with depression and anxiety.
I wish you well in you recovery. But it is a slow process so donot be too hard on yourself.
Cx