Hi

I wrote a post here a while ago about going back to grad school or not with the symptoms I had then. Unfortunately (but maybe not surprisingly) I had a relapse soon after that, with the most difficult symptom returning at full force: mental fatigue.


I have since then been diagnosed with Diffuse axonal injury(DAI). The doctors are carefully optimistic- one literally.knocked on wood and said he thinks I should get better but it will take a long time. Reading up on DAI makes me depressed - it looks like I am unlikely to fully recover. I also haven't seen to many posts on those who experience fatigue as the most troubling symptom here - or are people just taking for granted that this is a problem and focus on their other symptoms?

I have been home at my parents place for the past five months, not working or studying, take a nap around 3pm every day and sleep a lot - 10 hrs or more at night. Whenever I feel.more energetic and try to get out of the house for more than half an hour I am sure to have a setback the next day. Socializing is very tiring so I dont do that.

Can anyone sympathize with this or give me any advive on how to proceed recovery? I feel like I am stuck - I have been at this level of energy for months now. I get terrified that I will never have enough energy to have a family or resume my studies.. I am 25 years old. But I know these thoughts just aggravate things..

I will say that I found a way to control.my headaches - they originate from the muscles behind my ear and neck, and I massage that area and use a TENS electric impulse.machine to reduce the headaches. acupumcture works well.too.

Any advice on vitamins to take, treatments, and ways to think to not fall into despair are warmly welcomed. thank you!


Safina ( bike accident in April 2012. Symptoms are tension headaches and FATIGUE)

I am about 16 months out from my injury. You ask some very good questions. I can only tell you how my injury affected me. I do know mental fatigue and I am still tired alot but not nearly as much as when I was first injured. Your comment about going out being to much is a common complaint. I'm better off staying home because most times it makes me foggy after an outing. I keep trying though. I think it's important to have some social interaction. That being said I recently started to go to a support group run by the brain injury alliance group and I am hoping that being around other people who are going through this will help me in this process.

Is there a support group in your area? Maybe little steps will lead to leaps and bounds.

Your not alone and it's hard. You are very young and I hope that will benefit you in your recovery process. Mark in Idaho posted some real good advise about vitamins and dietary information to help your injured brain. I would look it up.

I hope this helps. Take care.

Safina wrote: " I also haven't seen too many posts on those who experience fatigue as the most troubling symptom here - or are people just taking for granted that this is a problem and focus on their other symptoms? "
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My own experience is that mental fatigue/cognitive fatigue remains highly characteristic of pcs.
It is something ongoing we must work to be proactive, to be preventative, e.g. whenever we are going and/or doing.

crystal mentioned, it is good to allow yourself 'safe' opportunities for being social, e.g. a TBI support group.

It's wise to be protective of yourself as well, e.g. your choosing to not go out with friends in a usual way.
Perhaps 1:1 easy walks together or such may be better.

You are young and that is on your side, re: making a good recovery.

I would highly recommend to your attention for brief, easy reading sessions,
Dr. Claudia Osborn's book Over My Head.

Hoping all the best for you in your recovery, Safina.

Theta

Safina,

I can certainly identify with the fatigue that you are talking about. It is one of my most troubling symptoms.

I think, perhaps, that people don't write about it because there are other symptoms - like horrible headaches - that stand out so much more at first.

There are two books that I would recommend. One is Brainlash by Gail L. Denton, PhD. She has one chapter in the book called, "Stamina, Fatigue and Energy". The other book is Coping with Mild Traumatic Brain Injury" by Diane Roberts Stoler, Ed.D., and Barbara Albers Hill. They also have a chapter called "Fatigue".

I don't think that anyone who has not had PCS can understand the fatigue of PCS. I also cannot do anything without thinking about the consequences. If I want to go out to dinner, I have to take a nap beforehand and make sure that we are going someplace quiet in order not to be sick for a couple of days afterwards.

You are young and you have that going for you. As one doctor told me, "Don't give up hope."
I have found acupuncture and Chinese herbs helpful. Another thing that has helped me to cope with things is Mindfulness Meditation. You can look it up online. There are classes given all over the country. It helps you to cope.

I am sorry that I don't have answers, but I really believe that your young age will help and you will get better. In the meantime, continue to rest as your body requires.

Please let us know how you are doing.

All the best, ShellyK

Safina,

It sounds like your greatest need right now is to get your upper neck injury resolved. The head aches that manifest from your neck and back of your head are classic injuries that go undiagnosed and treated. An upper cervical chiropractor can help. www.nucca.org and www.atlasorthogonality.com can direct your to local clinics.

Do a search for my posts with 'magnesium' and you will find my vitamin and supplement regimen. It takes a month or two to start to see an improvement.

I would not get anxious about the diagnosis of DAI. It does not mean much. It is just an educated guess. Many with PCS have a DAI. Whatever you read about DAI that upset you is likely over-blown.


Most who recover from DAI like brain injuries do it with a combination of learning new life skills and work-arounds and being patient to let the brain heal. I personally find 'Brain Lash' to be too anxiety ridden. Diane Stoller also has a unique personal experience that she tries to claim with fix anybody. Her brain injuries were focal injuries, not global/diffuse injuries.

Please, try to find someone who can help with your neck. Any time you have sore muscles, etc. behind the ears points to an upper neck injury. They can cause miserable head aches. Being active in a way that causes you to turn you head from side to side can cause these head aches to roar to life. I need to be very careful about neck position when I sleep or nap or even sit and talk calmly with my head turned to the side.

My best to you.

Hi Sarafina,

I'm sorry you are going through this. It has got to be tough to back at your parents house, ( no matter how great they are!). It is really hard not to worry about the future, but almost everyone gets better and the younger you are the better your odds. I'm 50, had my injury 2.5 years ago and I can say I am much better. I also had very intense mental and physical fatigue which was very scary. For me this has gotten much, much better with time. Also, last year I was diagnosed with sleep apnea. Apparently, there is a correlation between sleep apnea and brain injury. After my injury I no longer could get into a deep sleep because I would stop breathing and wake myself 18 times an hour to breath. I was unaware of all of this, but the two sleep studies showed what was going on. I now sleep with a C-pap machine and I find it makes an enormous difference. Now it is one, maybe two days a week that I have that physical fatigue and frankly it correlates to the nights when I haven't used my c-pap all night. And it is not as intense as it use to be. I would fall asleep anywhere on a dime.
As for the mental fatigue, I find that on my good days I can now sustain intense concentration at work for about 6 hours. Up from about 4 hours a year ago. And when I really need to perform at work, I rest up before hand and it usually takes a day or two to "fully" recover. I hope this isn't depressing because I imagine with your age your recovery will be speedier!

I am pulling for you.

Fatigue is a major symptom with PCS. I am at month 5 also and have returned to work. Not my choice. **** poor nueros decision. Every day is tiring and by the end of the week I am generally feeling all the effects. I.E. symptoms increased.

I do not feel the total exhaustion I did at the beginning. But I tire very easily and have to take frequent breaks. Prior to my injury I was very active. 60+ hour work weeks. Gym 5 to 6 days a week with 2 hour work outs. ...

I am no where near pre injury but I am confident that my quality of life is in my hands. Focus on healing first, then carefully and slowly addressing your issues one at a time. Be patient, be kind to yourself, this is not a race. You will get there.

Thank you all for you kind support and replies.

I am happy to hear that you emphasize that most of us do get better, thank you for sympathizing and being so supportive! It does help.

Typing is really my worst enemy and bring the headache right back immediately. I really dont understand the connection between typing or writing by hand, and the headaches. Anyone have any ideas?

Regarding Mark's advice on going to a NUCCA specialist,I am keen om giving it a shot. One problem is the lack of such practitioners here- I live in Sweden. But I am doing my best to find one. Are there any serious risks involved with NUCCA manipulation?

I have boosted my.vitamin supplies! Thanks Marrk in Idaho for the advice. I am also.looking into going to medical yoga and a mindfulness class. Really doing all I can to get better and to feel OPTIMISTIC about this.

Thank you all once again. I really appreciate the support.

Safina

You sound like you're not getting quality sleep. I have a similar problem. Your doctor might prescribe something for this. Brain injuries can disrupt the brain stem, which regulates sleep. You may be "sleeping" for 12 hours but not getting into deep REM sleep. It stinks, I know. But is something to look at.

Safina,

You may be able to find a physical therapist or physiotherapist who can do some gentle traction and manual manipulation to help with your neck. Some osteopaths have skills for working with this. Others are just too forceful. Most generic chiropractors are too aggressive. A NUCCA chiro uses very gentle and precise treatments that are not a risk.

Some have been prescribes a cervical collar to help support the head as the neck heals.

Hope you can find the help you need.

My best to you.