[Halfnelson]

Hi all,

I recently pushed past the 12 month mark since my concussion and took the time to check my logbook and re-evaluate my symptoms.

Unfortunately, even with physical and cognitive rest, the vast majority of my symptoms have not improved. I.e. brain tingling, difficulty reading, typing, and producing speech are all as poor as they were a year ago.

What the hell is this brain tingling anyway? What causes it?

I occasionally have a 'good day' after I am literally sedentary for >24 hours but for the most part I am the same now as I was a year ago. The dizziness has improved however.

The problem is that I avoid all types of fun to 'promote my recovery'. But at the same time, avoiding going out, exercising, and socializing etc has damaged my relationships with friends and family and I am finding myself spiraling into a deep depression.

I've given up everything that I used to enjoy; working, playing, exercising, even sex (that's right), and still no relative improvement.

So what's the point?

I exist merely to continue my existence.

So after a few recent experiments, I have found that my symptoms are no better or worse after exertion.

So what does everyone think?

(1) Should I try and slowly get back into the things I used to enjoy and stop trying so hard to recover? Just make the best of the time and limitations I have?

(2) Should I continue to limit my physical and cognitive effort in the hope that I might eventually see some improvement? Bear in mind that these limitations come at the expense of everything I care about.

[sospan]

I guess there is a middle ground where you do the things you find comfortable in doing being mindful of when you start reaching your limits. If the next day is a wipe out you have obviously done too much.

Recuperate try again doing a little bit more until you find "your level"

I always believe there is somebody worse off than you and be grateful for what you can do and achieve. It may be not what you could do before you are damaged but hey its a start

[NOS455]

I really don't know what to tell you I'm going threw the same thing you are my wife is a big support and I found this Group ..hang in there ..that's what everyone tells me ..

[rmschaver]

Sorry for your struggles. A few questions may be in order first. Your age? What kind of support and accommodations are your friends and family giving you. Also what kind of accommodations are you giving yourself.

For myself I have had three ER visits. More Dr. appts that led nowhere than I care to think about. When I was trying hardest to keep my life style pre-injury. I was literally Killing myself. My BP was going so high it was high risk of stroke.

Not wanting to risk what I had left I moderated my life style. While not the same, and I still get frustrated it is the best balance I can manage. I hate to say this but are those who care about you most understanding your struggles?
You may want to help educate them.

There are some good books. Also there is a great you tube video. You look great parts 1 thru 6. You could have them watch it and it will help them understand. There are those where I work who think I am faking it. I would trade places with them in a heart beat.

[andi]

My advise is take on new activities slowly. Start with one thing and then give yourself a rest day (or a few rest days if needed) then try a different activity, then rest...even if you feel fine rest at least the next day. I wish I had taken my own advise!! i took on a huge project and have now been recovering for about 2 months. (I'm over 2 years in) i feel like I will never get my life back again.

I think it's very important to not feel like you are just existing and not living but watch it because it can sneak up on you and a huge setback like mine is devastating. I am hoping to start adding activities back to my life in another month or so.

I tried to go to my friends house on Saturday but her 3 children were too much for me and i only stayed an hour. I'm back to just existing...I just can't handle anything more than work (which is also too demanding but I'm a single mom and have no choice.)

Best of luck to you! Let us know how it goes!

Andi~

[Mark in Idaho]

The others have given you some great ideas. The YouTube series starts at
http://www.youtube.com/watch?v=x9Xso...ature=youtu.be

Share it with your friends. If you can, invite them over one at a time or maybe two at a time if they are not prone to be too talkative.

It sounds like you may have not taken enough continuous days of quiet rest. The key is linking as many symptoms free days together as possible. The brain heals best with continuous days. Just because you feel good after a day of quiet rest, it does not mean you are ready for activity the next day. That next day can undo the good from the quiet rest day.

It helps to learn to recognize the very early symptoms of brain strain. The slightest sense of bleary eyed or struggle to understand is a signal to remove yourself to a quiet area. It can be as simple as asking someone to repeat what they said. If you did not understand the comment the first time, it was more likely your brain's struggle than your hearing.

For me, I do best with other sounds and voices completely eliminated. Turn of the TV, stereo, and have the other stop talking. Only one voice at a time and that voice should be looking at you so you can see their lips.

With some understanding friends, you can have a quiet social life until you can tolerate more.

My best to you.

[Halfnelson]

Originally Posted by Mark in Idaho

The others have given you some great ideas. The YouTube series starts at
http://www.youtube.com/watch?v=x9Xso...ature=youtu.be

Share it with your friends. If you can, invite them over one at a time or maybe two at a time if they are not prone to be too talkative.

It sounds like you may have not taken enough continuous days of quiet rest. The key is linking as many symptoms free days together as possible. The brain heals best with continuous days. Just because you feel good after a day of quiet rest, it does not mean you are ready for activity the next day. That next day can undo the good from the quiet rest day.

It helps to learn to recognize the very early symptoms of brain strain. The slightest sense of bleary eyed or struggle to understand is a signal to remove yourself to a quiet area. It can be as simple as asking someone to repeat what they said. If you did not understand the comment the first time, it was more likely your brain's struggle than your hearing.

For me, I do best with other sounds and voices completely eliminated. Turn of the TV, stereo, and have the other stop talking. Only one voice at a time and that voice should be looking at you so you can see their lips.

With some understanding friends, you can have a quiet social life until you can tolerate more.

My best to you.

Hi Mark,

Thanks again for your insight and suggestions which are always accurate and useful.

I have started watching the YouTube series you recommended and find myself connecting with a lot of what is presented.

I agree that ‘joining continuous days of rest’ is an important factor in recovering. However, the problem is that my symptoms are easily exacerbated from even the slightest physical exertion (e.g. defacating – as embarrassing as it is). Considering this, even if I make it a few days without exertion and therefore without symptoms, eventually I need to head to the bathroom and it’s back to square one, or thereabouts.

I plan to take 2-3 weeks off from work around the Xmas period in an attempt to promote my recovery. Although I don’t see how useful this will be when simply going to the bathroom causes a massive regression. I.e. how can I ‘link symptom-free days together’ when the symptoms are so easily triggered? How do you (or anyone) think I should get around this??

In all honesty, I really wish I could just be put into a coma for a few weeks to ensure that nothing aggravates my symptoms. But as we have already established, I think this is an impossible option. Unless anyone knows different?

To summarise, I do not wish to keep using up all my annual and sick leave doing as little as possible (physically and cognitively) in an attempt to recover, when really all I am doing is remaining stagnant with my condition (i.e. not recovering), and avoiding everything that is important to me. I.e. I am basically existing to continue my existence.

Knowing this, I almost feel that I should try and get back into my old routine (with ease and limitations) and just see what happens. Even if my symptoms remain, I doubt they will be worse than what they currently are, and perhaps it will at least provide me with a small sense of happiness and the chance to reconnect with my friends. Maybe this is a better option compared to just doing ‘nothing’ and still not recovering? It has already been over a year and I'm not sure how much longer I can continue to avoid all forms of activity and pleasure in the hope that I might progressively become better.

Any thoughts or suggestions would be greatly appreciated!

I have also considered explaining my condition to some of my friends and, although many of them will say "sure, we understand", unfortunately, this will only be for a while... I'm sure many others may agree with me on this.

Thanks in advance.

[Mark in Idaho]

I have bowel problems due to a spastic colon and spastic ilealcecal valve. It can cause me to strain. I can easily see how the straining can exacerbate symptoms. When I want to get my system moving good, I spend a day eating beans. I'll have Bush's baked beans heated and piled on buttered bread for two consecutive meals. It is one of my age old comfort foods that gets my system moving easily. It may be worth a try.

I have a chronic TOS (Thoracic Outlet Syndrome) condition that involves C-6 to T-2. I can't afford the physical therapy I have used in the past to relieve this problem so I just use high fiber foods to get relief.

In the past, I spent almost a year taking a spasmodic and softening laxative. The combination helped my system. The spastic colon had cause a distended colon that needed the spasmodic med to rebuild peristaltic muscle strength. Maybe you will benefit from the same long term meds. I bought generic spasmodic/softening laxatives in the Costco size container. It helped.

There are plenty of ways to get lots of fiber into your diet to make bowel movements much easier. Straining can be dangerous. Long ago, I had a friend who ruptured his aorta straining.

I can understand how frustrating it can be to have symptoms recur from just normal functions.

Do you ever get a feeling of a bloated belly between your belly button and your ribs?

I hope you can find a way to make this function less of a problem.

My best to you.

[Halfnelson]

Originally Posted by Mark in Idaho

I have bowel problems due to a spastic colon and spastic ilealcecal valve. It can cause me to strain. I can easily see how the straining can exacerbate symptoms. When I want to get my system moving good, I spend a day eating beans. I'll have Bush's baked beans heated and piled on buttered bread for two consecutive meals. It is one of my age old comfort foods that gets my system moving easily. It may be worth a try.

I have a chronic TOS (Thoracic Outlet Syndrome) condition that involves C-6 to T-2. I can't afford the physical therapy I have used in the past to relieve this problem so I just use high fiber foods to get relief.

In the past, I spent almost a year taking a spasmodic and softening laxative. The combination helped my system. The spastic colon had cause a distended colon that needed the spasmodic med to rebuild peristaltic muscle strength. Maybe you will benefit from the same long term meds. I bought generic spasmodic/softening laxatives in the Costco size container. It helped.

There are plenty of ways to get lots of fiber into your diet to make bowel movements much easier. Straining can be dangerous. Long ago, I had a friend who ruptured his aorta straining.

I can understand how frustrating it can be to have symptoms recur from just normal functions.

Do you ever get a feeling of a bloated belly between your belly button and your ribs?

I hope you can find a way to make this function less of a problem.

My best to you.

Actually I have very healthy bowel movements and do not find myself straining at all. I consume plenty of green vegies and fibre every day. However, the normal and simple muscular contraction (peristalsis) seems to cause an increase in blood pressure which shoots towards my head and aggravates the symptoms for approx 24 hours. I.e. the increase in BP probably 'shears' away at already damaged axons which take a day or so to reconnect and begin healing again.

I have desperately tried to get around this issue, hoping that perhaps my symptoms would be less easily triggered over time, but without any luck.

It is extremely frustrating to put so much time and care into avoiding physical and cognitive exertion to promote recovery only to be set back by a simple and unavoidable bodily function!

I really need a solid 'plan of attack' to get around this issue before I take more time off work and just have it go to waste, again.

My only other idea is to try an 'all liquid' diet... but this probably isn't very healthy in the long-term.

Any suggestions welcome!

[pcslife]

Halfnelson,
I know the exacaberation of symptoms after bowel movements. Pre-injury I had mild IBS and didn't affect my life anyways. Post injury it got worse and mostly like due to all the meds I swallowed (Elavil, prednisone etc.,)

Now I changed my diet a lot. No meat (except some chicken or fish twice a week) and changed mostly to Fruits, Yoghurt and Rice. Little spicy food when I get bored.

I also understand how any physical activity induce symptoms. For me even taking a shower is struggle and I get wiped out and dizzy. Even doing nothing I have symptoms settle in about an hour after I wake up. I did nothing for about an year and got very depressed and suicidal.

Now I do some activities because my symptoms always there no matter what. I work from home and nothing stressful. My stressful days are going to stores for 10 mins, doctors office all within few minutes from where I live. If i go for 10 min ride I take taxi or call a friend.

Once I went to ER my doc injected some potent morphin(dialudid) thought I didn't really prefer but she explained she is trying to break the pain cycle. It felt so good (not drunk feeling but different) for 1 day with no pain (even helped with dizzy feeling) Now I know why people get addicted to narcotics. But all symptoms came back next day.

Since you asked about going in coma which they do (not in USA probably) for chronic pain. You can search for "Ketamine induced comas". I even thought about it. I am not sure they do for some one with brain trauma.

Cheers!