Changing stroke rehab and research worldwide now.Time is Brain! trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 523 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

My blog is not to help survivors recover, it is to have the 10 million yearly stroke survivors light fires underneath their doctors, stroke hospitals and stroke researchers to get stroke solved. 100% recovery. The stroke medical world is completely failing at that goal, they don't even have it as a goal. Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It lays out what needs to be done to get stroke survivors closer to 100% recovery. It's quite disgusting that this information is not available from every stroke association and doctors group.

Sunday, September 12, 2010

Stroke fatigue

This is one of the least understood side effects of a stroke. While I was still in the hospital if I had 10 minutes between therapy appointments I would fall asleep. I was also on the general muscle relaxant, baclofen, which was supposed to lessen my spasticity. It didn't do that at all so I was left with the side effect of extreme fatigue. Finally talked my doctor into trying something else. Zanaflex, which was no better, also a general muscle relaxant.. Since there was no diagnosis on what was causing the fatigue I self-diagnosed myself that I had sleep apnea. It was proven correct after going thru a sleep study in which I would quit breathing 6 times an hour. This was a fairly mild case of sleep apnea but I did convince my doctor that I wanted to get a CPAP machine. What a mistake. With the positive air pressure going into my nose constantly, I had to actively concentrate on my breathing to make sure I could exhale against the pressure. It worked for about a week but I did not get any lessening of the fatigue. I finally quit using it during the second week when one night I spent two hours concentrating on breathing thru the mask. At that point I decided that living with the apnea was more restful than trying to use the CPAP machine. I have no idea what waterboarding feels like but that is how I would describe the feeling of breathing against the CPAP machine.
I have heard that our brain is about 2% of our body weight but uses 20% of the energy, so the speculation is that the brain is rebuilding as it recovers and needs that much extra energy.. If I want to function at work I have to have a large cup of coffee. On weekends I can sleep for 10-12 hours or take 2 hour naps during the day. Personally I think there is a chemical imbalance in the brain after a stroke and researchers just need to focus on that. Recovery could occur so much faster if we all weren't battling fatigue all the time. For myself I am still quite cardivoascularily fit, resting heart rate of 53 at age 53 puts me in the athlete category. If I am an athlete, why am I so fatigued all the time?

This article basically says I don't know
Why am I so tired after my stroke?

Its a tossup between spasticity and fatigue as to which I consider worse and neither one has any understanding of even how to approach it. With a stroke survivor in charge we would at least come up with some ideas rather than washing our hands of it.

5 comments:

  1. Hi yes but must we choose fatigue or spasticity? I wonder if the 2100 Mg of Gabapentin I take ( for spasticity) is making me too tired to get fit and do things.

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  2. i would look at the side effects at
    http://www.drugs.com/sfx/gabapentin-side-effects.html
    Back pain; changes in vision (double or blurred vision); clumsiness; constipation; diarrhea; dizziness; drowsiness; dry mouth; nausea; stomach upset; tiredness; vomiting; weight gain.
    if it is similar to either baclofen or zanaflex the fatigue was stupid, lets make everything tired in the hope than the specific muscles you want to work have enough energy to overcome their agonists.

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  3. I have been given so many reasons for the fatigue, with the majority blaming me (because I am depressed), from the brain is working hard to repair itself (22 years c'mon) to that I am having to expend so much energy because I have to consciously force my body to move. I looked at all my defects and figured that my hypothalamus was either wiped out or severely damaged, and this part of the brain controls the production, dissemination and utilisation of virtually all neurotransmitters, so goodbye to endorphins, dopamine and noradrenaline for boosting my energy. Occasionally I do have a good couple of days, and this overwhelms me, but I know that I could not go back to a genuinely busy life and still be able to keep going.

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  4. My neurologist subscribes to and preaches that the mental fatigue is the brain working to repair/heal itself (??) Whatever...
    My pattern is to be fully energized in the morning when I first wake up until about 1:00 in the afternoon. It is during those 4-5 hour window that I do my exercises, walking regimen and/or Therapy sessions. Around noon I eat my fruity brunch and then go into a deep rest/nap mode....sometimes I just fall asleep where I sit, not realizing that the exhaustion fog is quickly flooding my brain. Often during this "exhaustion" sleep I find I dream about events of my youth long buried in my memories. Visuals, sounds,people and even occasionally smells are recollected so vividly.
    When I first awake it takes me a few seconds to realize where I am (most usually at home) and,sadly, not in the long gone
    locale of my youthful recollection. The dreams are so strong that I wish I could return to that state of dreaming. I feel that since my stroke 2.5 years ago, that a pathway has been opened to long stored memories & experiences that I had forgotten or vaguely able to recall.
    On another note following the nap I find my energy level is restored to about 75% of my morning level whereupon I do some more exercising with reduced spasticity.This refreshed period gets me through dinner time when I again get fogged in following my eating dinner.

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  5. My ex dumped me 22 years after the stroke, and I was obliged to go back to live in my own apartment house, alone. Many times before the actual move,I was very worried because I figured that, with the ever present fatigue, I would be spending all my time lying on the bed, resting.
    But the first I year, I was living here, I found that it was not so bad as I thought. I found that I could walk so much closer to "normal" than I had done in the years following the stroke. My calves did not ache with fatigue, and I could walk briskly over, for me, a reasonable distance. I was not feeling the need to lie down at least once or twice a day, and my memory also improved. During that year we had a number of Covid lockdowns, and my ex, who had joined several social groups in the 5 years before he told me to move out, found that his best laid plans of always being out of the house, and with somewhere to go, with people around, so that he would not be left alone in an empty house were destroyed. Consequently he regularly visited me, and was happy when I dropped in to visit him, when I had an appointment out his way. I was feeling so well, that I was considering getting a voluntary job, at least, but was hampered because I had brought my young dog with me, and I knew that she would not be able to handle being left alone. Before I had to move out, my research had lead me to believe that I was suffering from Adrenal Fatigue, brought on, a lot, by the negative way my ex was acting toward me. WhenI moved out, I was no longer in that stressful situation, and I felt that this had enabled me to "recover" my ability to walk, control the neuro fatigue, and fix the memory loss. So a year passed, relatively happily and hopefully. Then a woman set about getting her claws into my man, and she succeeded. So since then, he no longer visits here, and has made it obvious that he does not want me in his house, certainly there have not been any overnight stays. And my legs have started too ache again, and I can no longer walk briskly or tirelessly as I had been. I usually have to lie down and rest at least once day, and I have often misplaced items, or missed appointments, which I was not doing during the first year alone. My figuring is that I am having to live with the fact that I have permanently lost my ex to this b!tch and this is causing me stress, and Adrenal Fatigue which has brought back the symptoms I was showing during the last 5 years of living with my ex, but cleared up when I was no longer living in that stressful situation.

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