[ShellyK]

Hi. I am new to this forum. Actually, this is the first time that I am joining a support group. My injury happened February 5, 2010. So it is almost 8 months since I walked into a metal pole and my life changed.

Because I am new, I may be asking something that you have talked about already, so please forgive me if I do....

I am having a really difficult time dealing with all of this. What I find the most difficult is the fatigue. It is almost unrelenting. I wake up with it and I go to sleep with it. My body aches most of the time as if I have the flu - but I don't. There are times when I can push through it and get something done. But if I do too much - whatever that means - then I am "wiped out" for days.

Is there anything that helps you to get through this? Have you been able to find anyone who can tell you when this might let up? Have you been able to go back to work?

I am (or was) a teacher, and I am not able to work yet. I wanted to try going back for some half days, but they would not accommodate me. Actually, I realize now that I would not have been able to work yet on a regular basis, because there are days when I can't do anything. However, they are not even allowing me at this point to volunteer! It's very frustrating.
I don't know whether or not I will be able to go back to teaching....

Thanks for listnening and thanks for any input you may have.

I almost forgot: I did want to mention that the one thing that has helped me has been cranial sacral therapy. Has anyone else used cranial sacral therapy?

[Mark in Idaho]

Shelly,

Welcome to NT. Sorry for your reason for being here.

Fatigue is a very common and persistent symptom of PCS. That said, you still need to rule out other causes of the fatigue. By that I mean, PCS can cause other problems that cause the fatigue. The most important issue is sleep behavior. If you are not getting restorative sleep, your days will be filled with fatigue.

It is not uncommon for a head or more commonly head and neck injury to cause sleep apnea. This can be either obstructive sleep apnea (OSA) and central sleep apnea (CSA) Obstructive is when tissues in the mouth, throat, etc partially block the breathing passageway. CSA is when the nervous system malfunctions and the motor function of inhaling is not properly regulated.

A symptom of sleep apnea is nightmares or stressful dreams, restless sleep, body jerks during sleep, Restless Leg Syndrome, waking up during the night, etc.

It is imperative for the body to get REM sleep (Rapid Eye Movement). This is when the neurons get a time to recover from the previous day's stresses. Brain cells will not heal or recuperate without this sleep. Not only will poor sleep lead to daytime fatigue, but it can prevent healing and even cause further brain deterioration.

Regarding Cranial Sacral Therapy, it is a very controversial procedure. There are merits to some of the modalities but other claims are unfounded. For example, researcher have had various Cranial Sacral practitioners (usually Doctors of Osteopathy, Osteopaths, sometimes a Physical Therapist or massage therapist) examine and try to chart their finding of the same patient. There is very little commonality between the diagnosis of the various practitioners.

There is a very good article written by a DO who teaches at one of the Osteopath schools. He even dismisses most of the original cranial sacral theory.

This is not to say that there is not some good available from a skilled practitioner. The manipulation of the neck and spine can be very helpful in the hands of a gifted healer. The claim to manipulate the plates of the skull is beyond any modern scientific method.

The more common modality successfully used by PCS subjects is Upper cervical chiropractic. This focuses on the joint between C1 and the skull and sometimes C1-C2 etc. Most general chiropractors do not have the training nor equipment to properly diagnose and treat these very minimal misalignments.

Google NUCCA and/or upper cervical chiropractic. Or do a search of this forum for upper cervical. there are past posts about the benefits.

Regarding being 'wiped out for days" welcome to the club. I overdid it two weeks ago by trying to read and understand a manual about rebuilding an automatic transmission. I was only reading two pages about the electric sensors etc. I was down for the count for two plus days. I have had efforts that put me out for up to two weeks. Now, i can usually recognize the start of the overwork and leave the task for another day.

Some common symptoms of overworking your brain are:

Eyes start to struggle to follow a line of text.
Reading the same line, sentence or paragraph over and over.
Eyes start to glaze over. This is usually observed by a knowledgeable family member. My wife is good at recognizing this in me.
Repeating yourself in a conversation.
Hearing to many voices at the same time, like at a social function with many people in different conversations.

Us old timers have found it necessary to learn to avoid these triggers or develop work-around or other accommodations to avoid being triggered.

I always have foam ear plugs handy. I wear a hat to avoid bright lights. I do not go to the mall or other busy public setting during busy times. No shopping at Christmas for me. I also will rest up ahead of a need to be in one of these triggering locations to give me more tolerance.

Thank you for posting in short paragraphs. If is very helpful to many of us.

Tell us more about yourself. This is a very welcoming group with a wide variety of experiences.

My best to you..

[ShellyK]

Mark,
Thank you for all of the information. I will have to check out sleep apnea.
As far as cranial sacral therapy, my chiropractor recommmended it, and I have a wonderful physical therapist.

He has helped me a lot. I once came in with a migraine, and he did some ear acupressure, then some cranial sacral work and then he taught me two Qi Gong exercises. By that time, my migraine had disappeared! Of course, it did not last. That night the headache came back, but at least I knew that there was the possibility that I could feel better.

I was getting terrible migraines until I started cranial sacral work. The migraines are not gone, but they are less frequent and more manageable. Yes, I do agree with you that the therapist has to really know what she/he is doing.

I too cannot go shopping in crowded places. I tried to go to Macy's for the first time since my injury. I got there, went inside and lasted all of 15 minutes before I had to get out of the store. I was dizzy and had a headache. Doesn't that ever improve?

Thank you again for sharing your knowledge in this area. I really appreciate it.

I will write more another time. I have had a really difficult day. I woke up dizzy this morning and was completely wiped out all day. It felt like I had gone back to the beginning of my healing process. It was very depressing. And then I somehow found this group. I am grateful for that.

[nancys]

The fatigue was a major battle for my daughter. I think the NUCCA chiropractor helped the most along with being able to start back exercising. She started slowly and increased in small increments. If she had any worsening symptoms, we went backed back down. I really think the nucca adjustments made it possible for her to be able to exercise.

Even, once the daytime fatigue resolved, she still had lots of issue actually getting up and moving. This finally improved at about 10-11 months. Her injury was last October and she finally was able to return to school full time at the start of this year. The fatigue was the major issue holding her back.

[Lucy]

Hi ShelleyK, this is my 9th year of PCS caused by similar events as Mark and I am the same age as him.

I can deal with everything ok apart from the fatigue. I have to keep to my routine of a half hour rest at 11.30am and an hours sleep at approximately 3.00pm or my days are disasters. It took me a year or so to establish the routine.

I tried to work too soon and for too long hours even though the hours were part time. I had been a legal executive for 20 years (kind of like your paralegal) My blood pressure went crazy about 4 years ago and then 2 years ago I had a major melt down and I am now unable to work.

My husband sees my tiredness before I feel it - just like Mark said, my eyes glaze over.


I find that I simpoly can not cope with any pressure what so ever and it is worse when I am tired. I have very little patience with my self.

My advice to you is to be kind to yourself and rest before you feel the horrid overwhelming tiredness.

Things do get better as you learn to avoid activites that soak up your energy - like noisey shopping malls, loud voices, flashing lights and the worst is lawn mowers!!!!!

Lynlee

[ShellyK]

Lynlee,

Thanks for your information. Doesn't the fatigue ever get better? I will never be able to go back to work if it continues like this. I am (was) a third grade teacher until this concussion happened and turned my world upside-down.

Unfortunately, the doctors really don't know how to help you - except to give you pills, and I get sick from most of them.

I have already learned to try to avoid noisy, crowded places. They make me sick. But it is very disheartening to think that I won't get my life back.... Although I guess that if that is true, I will have to learn to develop and adjust to a new kind of life.

It just would be helpful to know whether this will get better or not. My cranial sacral physical therapist believes that we can all heal ourselves. We just have to take time to listen to our bodies.

There is a book that he recommended that I am reading. It is called
"The Art of Effortless Living" by Ingrid Bacci. She was a successful professional who became very ill. She went to all the best specialists. No one could help her. She left her marriage, her career and everything else that she had, and she eventaully healed herself. The book is about how she did it.

It doesn't mean that everyone can succeed, but, who Knows? Maybe they can. My physical therapist has taken workshops given by her, and he says that she is a wonderful person who has helped many people heal....

Shelly

[Mark in Idaho]

There are many systems in the body that can heal to an almost like new condition. The brain is definitely not one of them. It can try to repair damaged areas but it does not grow new neurons very readily.

In my opinion, a claim like your PT made would cause me serious doubt.

Regarding getting back to a third grade teaching position. In time, your brain may heal to a level that will allow a return to teaching. More likely, you will need to find anew way to teach. Your need for a quieter atmosphere will enhance your ability to work with children with sensory overload problems. You will be just as sensitive as they except in your own way.

Sensory overload sensitivity has a great way of teaching one patience and stillness. If this is you for the current time, embrace it and find a way to use it to your and other's advantage. I have become very good with young children, toddlers especially. The calm steady pace can do wonders for young ones struggling with their surroundings.

Does California have a Vocational Rehabilitation program? Or maybe an ed school has CE courses that can get your additional certifications.

As our Big Pharma controlled public health systems get overly protective of kids by mandating every conceivable vaccine, you may find a need to work with kids who have neurological reactions to them. There is also a growing need to work with concussion subjects. You are very well qualified. Being on the inside of a concussion is totally different that studying about them.

As youth get involved in contact sports, the need to educate these Post Concussion Syndrome students will become more pronounced.

Prepare for this opportunity and you may find an opportunity to be in a more rewarding occupation.

Schools also need assessors to observe the teaching environment and make suggestions to better serve students. Most class rooms are overly made up with stimulation. Too many visual objects on the walls and too much noise.

Hope you can see this as an opportunity to grow as a teacher.

My best to you.

[ShellyK]

Mark,

Thank you for all the suggestions about how to use my teaching skills with my 'new-found' abilities. I am not yet ready to deal with all of that, but it will give me something to think about. Your ideas are very creative.

You are right about the classroom being too stimulating. I have been back in school to visit, and it is difficult to stay there for long.

I don't know whether California has a vocational rehabilitation program, but I will find out.
Thank you for giving me something to possibly look forward to. I haven't been able to do that for awhile.

Shelly

[Lucy]

Shelley - what Mark has said above has made me think - I am now a very calming influence with my grandchildren - 4 toddlers. The old me would have been very noisy kind of like the ra ra bossy person. Now I just sit quielty on the floor and we play and talk - they just love it - I love it and you know what - it is better than pre injury times - of course not with those same children.

One of the things that I have/had identified doing is volunteering at the local High School and taking remedial reading - just one on one or maximum two.

It also helps if you have something to look forward to and forward plan as much as possible - hard when you don't know how tired you are going to be one day to the next or if you get woken during the night!

Spontaneity is a thing of the past for me. Write a list of what you want to do the next day and halve it and halve it again - that was the advice of the one good psychologist I saw and if you are being hard on yourself think of what you would say to your friend if she was injured in the same way.

When you do feel like you have energy don't go rushing around like a crazed person or put it this way - it is best not to rush around as the crash afterwards is not worth it. Just enjoy the moment and there will eventually be more.

Lynlee

[July63]

Originally Posted by ShellyK

Mark,
Thank you for all of the information. I will have to check out sleep apnea.
As far as cranial sacral therapy, my chiropractor recommmended it, and I have a wonderful physical therapist.

He has helped me a lot. I once came in with a migraine, and he did some ear acupressure, then some cranial sacral work and then he taught me two Qi Gong exercises. By that time, my migraine had disappeared! Of course, it did not last. That night the headache came back, but at least I knew that there was the possibility that I could feel better.

I was getting terrible migraines until I started cranial sacral work. The migraines are not gone, but they are less frequent and more manageable. Yes, I do agree with you that the therapist has to really know what she/he is doing.

I too cannot go shopping in crowded places. I tried to go to Macy's for the first time since my injury. I got there, went inside and lasted all of 15 minutes before I had to get out of the store. I was dizzy and had a headache. Doesn't that ever improve?

Thank you again for sharing your knowledge in this area. I really appreciate it.

I will write more another time. I have had a really difficult day. I woke up dizzy this morning and was completely wiped out all day. It felt like I had gone back to the beginning of my healing process. It was very depressing. And then I somehow found this group. I am grateful for that.

Hi ShellyK,

I had a sleep study at Bellevue (run by NYU) last night, you should see if you can do a sleep study, it can't hurt. BTW, with my 6 bedtime meds, I watched a movie on my laptop then slept like a baby all night, one thing they told me was a dreamed a lot during the night. Maybe that makes the brain tried and is tied to my TBI. Results come back in a week or two.