I need help. My wife has PCS and now 2-3 months into it she is still dealing with mental fatigue. This is still an issue b/c if she gets too overwhelmed her symptoms (headache, nausea, neck/shoulder pain, light senstivity, etc) returns. She still can't return to work. She tried part-time and it was too much.

It seems that tasks or activities that require mental concentration brings on fatigue. An extended nap/rest does seem to help.

So my questions are...

Is there anything else to help with the fatigue?

What therapy/techniques are there to help with her increasing her mental capacity? Does light exercise help?

What is the outlook of her recovering based on people's experiences or studies?

Thanks

Mike in Maine

Dear Mike,

I can only answer based on my experience. There are others who will probably respond that are much more knowledgable. PCS is not something you work through, push or stretch yourself to aid recovery. It is the opposite. You need to rest and do less than you think you can so you don't overextend and relapse. The fatigue is your brain telling you it needs rest.

It is very difficult, but by giving your brain the rest and quiet it needs your recovery will progress better. I've learned this through trial and error. If something is exacerbating your symptoms stop and try again later. Don't expect too much of yourself, you'll just get stressed and frustrated which also slow your recovery. Caffeine or other stimulants strain your brain and will slow your recovery.

You don't have the same capacity you had pre-injury while you're recovering. The sooner you accept that, the better things will be. I'm not saying you'll never get better, the recovery rate is different for everyone, but most people get better eventually. It's taken me almost a year and I'm probably about 80% of my pre-injury capacity.

There some good books around that are helpful, Brainlash is one. There are quite a few posts on good nutrition and supplements to aid your recovery. Many, myself included, have been helped by upper cervical chiropractic. Others have found other therapies that were helpful. I've had to go to several different providers (good neurologist, good neuro-otologist, physical therapy, chiropractor) for different symptoms to get help. Time is a great healer, patience is critical. (but hard to come by...)

My husband has been wonderful in helping and supporting me but I know he's been overwhelmed and frustrated at times as he tries to do and be everything, but he's held steady. We have three children (4, 7, 11 at the time of the accident), it's been an opportunity for them to learn to be more self sufficient and patient and helpful with a disability. Not that they've enjoyed the process! ;-) I'm not trying to downplay the fact that this has been extremely difficult for all of us, just that there is some good that can come out of it.

Be patient with your wife, as Mark mentioned somewhere else, she not only feels terrible physically, but also feels the guilt, anguish and frustration of not being able to be the person she wants to be for her family. It is very difficult to cope with it all. Having your brain not work right is different than a sprained ankle, it effects the core of who you are, how you think of yourself. Your love, patience and care for your wife and children right now are the essence of true love. You can come out of this stronger as a couple and family if you handle it well.

Best wishes,

Becca

Becca,

Thank you for your advice and story. We still have hope that my wife can return to close as normal as possible. Normal in that she can still work and spend quality time with the family.

It has only been 2 months but it has seem to be forever. She is progressing every week. The recovery has been a little slower the last few weeks though.


I'll take a look at the supplements and nutrients posts. She is currently taking fish oil (2x daily) and a daily multi-vitiam .

We have hope for a "full" recovery so she can maintain the life style she had previous.

Mike

My daughter suffered a ton of fatigue - both mental and physical. Time was probably the biggest healer. I also have her seeing a NUCCA chiropractor. I think this helped with the engery level. After she started seeing him, she was also able to start light exercise without an increase in symptoms. This helped a great deal too.

Keeping stress levels down and going slow is also wise. If my daughter did too much or had too much stress, things were much worse.

Nacys.....

Do you mind the type & duration of your daughter's exercise? We were thinking about trying the treadmill or exercise bike. Of course very light to begin with.

Rest does seem to help with the fatigue. If my wife gets too fatigue or stressed then her symptoms return so she has to be careful.

Thanks

Mike (spouse of wife with pcs)

My daughter rode an exercise bike. I also had her wear a heart rate monitor. Initially, I think she road for like 5-10 minutes keeping her heart rate around 120. She then slowly built up to 30+ minutes - still keeping her heart rate in the same range. We then worked on increasing her heart rate - nothing crazy - up in the 130 range. We'd back down anytime she had an increase in symptoms. After the NUCCA chiropractic adjustments, she had few instances of increased symptoms.

My daughter is about 10.5 months post concussion. The shift for her really started to happen around 6 months. The morning fatigue - i.e. getting up in the AM is the thing that has lingered the longest for her. This wasn't a new issues for her but the severity of it was worsened by the concussion. We still battle with it now.

Most of the head injury related books I have read haven't been really helpful with this issue - other than saying rest and don't over do it. I started reading about Fibramiagia and CFS and there could be some cross over into the PCS. The vitamins & etc that Mark talks about are discussed in great detail. They also talk about other supplements that are helpful. The one that has sparked my interest is SAM-e - it works as anti-depressant and is good for arthritis. After reading about it, I decided to try it myself. I have noticed a big difference in my engery levels during the day. I don't have the same sense of low level fatigue. (Being the parent of a kid with a head injury is definitely stressful and exhausting!) I haven't tried my daughter on it as her doctor doesn't recommend it as there aren't studies done with it's effectiveness with kids. If still continues to struggle, I may revisit it with her doctor.

My daughter just passed the one-year anniversary of her injury. Exercise was a big trigger.

She stopped exercising altogether for a couple months, then started on an eliptical machine at 2 minutes. After five days or so at two minutes, without symptoms, she increased to 3 minutes, and so on. It seemed to take FOREVER but she is now able to ride bikes, run, play frisbee, swim, etc., with only an occassional and short-lived headache or nausea.

This return to exercise gave her a sense of control over her own healing that honestly did more to help her than the actual exercise.

Ditto NancyS...6 months seemed to be a huge turning point for my daughter cognitively and with physical symptoms (fatigue, nausea, headaches, lightheadedness). Once the daily symptoms started to subside somewhat it was easier to chase down potential causes for individual symptoms. In my daughter's case it was damage to optic nerve. It was all muddled together before 6 months so it was hard to differentiate.

All the best to you-