It is a known thing that ALS patients have problems with a good sleep – of course not only them. These problems arise from multiple reasons. I have also experience with this right from the ALS battlefield as my mother had ALS and then I had some strange nasty ALS like health issues which I resolved. With more advanced stage of the disease it is usually getting worse. So why can all this be happening?
Lack of physical activity
First is the most obvious, for a good sleep you need to be little bit tired – everyone knows that. However if you lay on the bed all day long you cant get tired as healthy person. This is relevant when patient is already in advanced phase of the disease – please don´t forget I am trying to educate people here through this website as there are things to do which can help people so they don´t get here. It is super ambitious but I know it is possible despite it is highly individual and many factors including luck and timing play role.
Lack of comfort
Second is that physical discomfort when already seriously affected. If patient cannot control muscles then he/she cannot do anything regarding the position. I remember how we had to re-position our mother very frequently, move pillows, wake up numerous times during night etc. Healthy people take all this as granted but ALS patients logically are unable to help themselves and this makes them to sleep/lay in uncomfortable positions and that is not good for a good sleep.
Overexcitation of nervous system
Third reason is of a neurologic nature. The problem is that ALS patients have seriously elevated glutamate levels in brain (CNS) – but glutamate is neurotransmitter. It function is to excitate neurons to enable neural activity. This phenomenon is most likely behind those infamous muscle twitches. Anyway from the sleep point it again works against relaxed and calmed state needed to fall asleep. The overexcitation of nervous system just does not allow it. The patient could describe this like if his brain is hacked or overclocked as CPU unit in some computer where some program runs and does not allow the system to go to idle mode. Please read more about glutamate factor here.
Fourth reason is that ALS patients are far from homeostatic state from endocrinal system point. Today hormonal disbalance is relevant to many people as we face too much of that daily stress but that is nothing compared to what ALS patients need to face (terrible diagnosis takes its price!). This all is like domino effect but lack of hormones like melatonin again work against good sleep. Every stress whether psychic or physical or that oxidative stress (highly relevant in ALS) is very negative and moves the organism out of balance, out of homeostatic level. I would suggest consulting endocrinologist whether melatonin could be recommended etc.
As an independent ALS researcher I also suggest numerous things including radical diet and supplementation (please contact me in case of interest; all consulting free, of course). But the most fundamental and safe thing to try for improving sleep is dosing magnesium because it has broad function in the whole organism and surprisingly in many ALS highly related areas (anti-stress, promoting endocrinal stability, detoxification, etc.). Please do a small study on magensium. You can find out the link between adrenaline and lack of magnesium because adrenaline means certain stress and once these stress hormones are produced magnesium is required to do a cleanup and restore normal state. Too much of stress (like living with ALS diagnosis; imagination of dying) can deplete magnesium quickly and whole organism falls into bad state with many problems and unpredictables issues.
There is even scientific study which found magnesium positive effects among ALS patients. It can help but everyone will need to find how much in his/her own case – this is only one thing out of tens which can be done to fight ALS health condition. If people get the right motivation and manage to achieve massive synergic effects then I know even real miracle can most likely happen – the experimentation is the key. I suggest also reading my article on ALS patient immunity where magnesium role is also highlighted. Bill Riffle is able to walk despite living with ALS for 29 years – what is part of his own unique protocol? Magnesium … and of course not just that.
Additional tip to try 😊
Certain relief enabling better sleep can have special teas. I need to say that strong home made Ginger tea (+ lemon, raw honey etc.) or lemon balm tea (+ thyme, coriander, fenel), home made broth from the herbs, ideally) actually helped – I got relaxed more and kind of tired and slept well. Also my ALS ill mother complained she gets sleepy after lemon balm tea – now I already know why, but at that time I did not have any knowledge. The disease caught everyone unprepared, inexperienced and that is why it ended not well 😔
Please note this answer is part of FAQ page containing 45+ amyotrophic lateral sclerosis (ALS) related questions. It can be also viewed as single post which may look little bit odd. For example search engine like Google or Bing can direct you at such view. If you are missing a context check the parent page and perhaps also other questions. Do you know ALS Experimental Theory? Are you aware of ALS 1KD Challenge? Have you read results of my ALS investigation with really controversial conclusion?
Fight against ALS disease needs to be lead by employing below generic tactics (details are part of this website too):
- Stabilization of PH across all body fluids
- Excretion of heavy metals (mercury, lead, cadmium) and toxic metals (aluminium) from body via natural chelatation and detoxification procedures
- Supporting immune system using all known means (supplementation, natural immune boosters)
- Supporting ALS ill organism with radical diet ("Kernel mode diet") with rich antioxidant and quality nutrition components
- Putting special focus on resting, breathing exercises, regulated sun exposure, keeping healthy and positive morale
- Support from other people who need to be also positive and believe in real improvements, words like fatality, incurability are forbidden and forgotten words
- Avoiding all strenuous activities and focusing on regulating all types of stress as much as possible (physical stress, psychic stress)