Nothing here suggests that this was written up as a protocol and distributed to all the worlds' stroke hospitals. I bet your stroke hospital will do nothing with this information, they will wait for SOMEONE ELSE TO SOLVE THE PROBLEM?
Your hospital takes no responsibility for finding and implementing research that will help survivors. Ask that if you don't believe me. I bet they don't have a staff person monitoring stroke research.
I had massive fatigue immediately post stroke and continuing for years. My doctor stupidly said I needed to get more cardiovascularly fit. He never tested my cardio fitness. Three years after my stroke I had a physical where my resting heart rate was 54 at the age of 53. That means my cardiovascular fitness was that of an athlete, even after doing nothing on it for 3 years. Yet I was still completely fatigued everyday.
Statistics on stroke fatigue:
At least half of all stroke survivors experience fatigue Or is it 70%?
Or is it 40%?
Modafinil in Debilitating Fatigue After Stroke (MIDAS)
by Dr Tom LillicrapFatigue is a common, and often debilitating symptom in stroke survivors. For many patients, fatigue improves on its own over the first 2-3 months after their stroke. However, fatigue that persists beyond 3 months will often continue for many months or years afterwards. Severe fatigue interferes with a person’s ability to participate in rehabilitation activities, return to work or even just socialise with their friends and family. There are currently no proven therapies for post-stroke fatigue, but the Modafinil in Debilitating Fatigue After Stroke (MIDAS) trial aimed to remedy this by testing the drug Modafinil. Modafinil is a “wakefulness-promoting agent” which is primarily used to treat the sleeping disorder narcolepsy.
The MIDAS trial assigned patients to receive either Modafinil or placebo every day for 6 weeks, followed by a washout period to allow all the drug to leave their system, after which patients swapped treatments. This means that those who had been taking Modafinil began taking placebo, and those who had been taking placebo began taking Modafinil. Neither the patient nor the researchers knew which tablets were Modafinil and which were placebo. We performed a number of tests on patients before they started each course of tablets, and at the end of each course. These tests measured fatigue levels, quality of life and cognition.
In the results of the trial, published last year in Stroke, we found that Modafinil did effectively alleviate fatigue and improve quality of life. Even more gratifying than the statistical results (which allowed us to set up a larger phase III clinical trial) were the individual stories from patients who took part in the trial. Three patients managed to return to work which had been impossible due their level of fatigue. One of these patients had suffered his stroke after his wedding. With returning to work and having more energy, he and his wife were able to plan the honeymoon they never got to take. Another patient finally had enough energy to stay awake and leave the house in afternoon. He appreciated most being able to take his teenage daughter to lunch and to the beach, an experience she had not had with her dad for as long as she could remember.
The larger trial, MIDAS 2, is being run across multiple hospitals: The Royal Adelaide Hospital (SA), Royal Melbourne Hospital – City campus (Parkville, Victoria) and John Hunter Hospital – New Lambton (NSW). This trial may provide the evidence needed to have Modafinil listed on the PBS for post-stroke fatigue. This is an important step as the drug is quite expensive (costing around $160 per month) and for many stroke survivors, this cost is beyond their means.
The trial is registered on the Australian NewZealand Clinical Trials Registry (ACTRN12618000602224).
If you wish to participate in this trial please talk to your health care provider and refer to this information for consumers.
I tried Modifinil and used it for maybe 10 days whilst attending a square dance convention, wherein I was dancing maybe 5 hours a day for 5 days then we had a holiday afterwards. Never did I eat junk food, we self catered the entire time. Yes the "awake" feeling was wonderful, but t did nothing for my tired aching legs, but I gained over 40 pound over the period of our holiday. I will not take it again for that reason, it is too hard to get rid of weight when you have had a stroke
ReplyDeleteI tried Modifinil and used it for maybe 10 days whilst attending a square dance convention, wherein I was dancing maybe 5 hours a day for 5 days then we had a holiday afterwards. Never did I eat junk food, we self catered the entire time. Yes the "awake" feeling was wonderful, but it did nothing for my tired aching legs, and I gained over 40 pound over the period of our holiday. I will not take it again for that reason, it is too hard to get rid of weight when you have had a stroke
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