Dysautonomia and other symptoms
I just woke up at midday after a much needed and appreciated 11 hour sleep, feeling relatively good, and felt inspired to start a thread on managing one of the major and most frustrating symptoms of this illness: sleep dysfunction.
Sleep dysfunction is caused by the illness and is an important part of the diagnostic criteria for CFS. For many of us, traditional sleep remedies and sleep hygiene have no effect because the underlying cause is pathological. This has certainly been my experience.
I have terrible, terrible insomnia a lot of the time, especially when I'm in "rolling"/long term PEM. Sometimes it's caused by symptoms themselves e. g. severe headache or nausea keeping me awake, but more often my body is simply incapable of entering a sleep state even if I feel ok.
I recently discovered that in order to sleep well I need to be completely horizontal and not do anything requiring cognitive effort for at least 5 hours before I go to bed. At the moment this effectively means I set an alarm on my phone to make sure I'm in a resting state by 7:30pm, and then I do nothing but lie there (maybe listen to some music or podcasts) until it's bed time. It's important that I keep my heart rate as low as possible during that 5 hours of it won't work. It's incredibly boring but wow the sleep is soooo worth it!
Hey River and People,
like most of you I've been on the sleep journey for many years.
The biggest improvement for me was melatonin. I don't think I had much naturally for years prior as I had very bad insomnia, and my sleep cycle 'crept' forward each day.
The first night I took the melatonin (circa 2007 from memory) it was like a 'swirling' sensation in my brain. Not unpleasant, but like the melatonin
was 'flowing' for the first time. I was able to fall asleep and slept fairly normally.
I've been taking it ever since. I started on 0.75mg (1/4 tablet), increased to 1.5mg a few years later.
About 3-4 years ago I swapped to 'time release' melatonin as I kept waking up at 4-5am.
This has been much better and I usually get through to 7:30am without to much waking.
I'm still on 1.5mg (1/2 tablet). I tried 3mg one night but was groggy after waking which was unpleasant.
So it's often wise to half or quarter the 'recommended' dose of many supplements etc. if you are sensitive like me.
I take the melatonin at 11pm and I am in bed at 11:45-11:50pm.
I use Natrol Time Release 3mg, 100-tablets from iHerb (USA).
Other tips I would give:
Regular wake and sleep time.
This is pretty central to good regular sleep. I know this is easier said than done. But each person is different, so if you feel better going to bed at 10pm, then do it. I find I cannot 'go to bed early', as I just lie there. So I get into bed at 11:45pm-11:50pm, read for about 5-10 mins. and then I get ready to sleep.
Light and melatonin production.
The body starts to increase the melatonin levels in the early evening as natural light reduces.
If you sit in a well lit room right up until bedtime, this will reduce your melatonin levels.
I turn off my living room/kitchen main light at 6pm, and put on on lamp (to the left of TV).
I have a wi-fi LED bulb in the toilet, and it is set to the lowest setting via the app, so this reduces 'bright lights' before bedtime.
In the bathroom I have a little LED strip (about 12cm) that I use at night to reduce bright light.
In the bedroom I have a small lamp next to the bed.
If you get up to go to the toilet, don't turn on any lights.
And for the guys: sit down to pee. Much easier when you are in the dark and half asleep!
- Mouth Tape.
This sounds crazy, but it works better than anything else to prevent snoring/sleeping with mouth open.
You buy a special surgical tape from the chemist and cut a strip about 10cm long.
You apply it to your lips, and it helps keep your mouth closed during the night.
One strip lasts between 7-14 days. So a roll lasts ages.
Before I started using this I tried a mouth guard (horrible), nose clips (painful), etc. nothing worked.
I used to wake up really thirsty once or twice a night. I'd have to get up drink water, then I'd wake up to go to the toilet, and on it goes.
Never had a decent flow of sleep. My mouth was open which causes dryness, bacteria, etc. and you wake up thirsty.
So a big improvement there.
Memory Foam Pillow.
These pillows are pretty good. They don't get hot like normal pillows.
I would recommend the shredded foam type, or in pellets, rather than a solid slab, as they mold to your head better, and you can remove extra to adjust the height etc.
Latex Bed topper.
I bought a used one from eBay as they can be quite expensive.
I got a double bed size and folded it over double thickness (about 2 inches).
Before I got this I often had sore shoulders and hips.
These sheets last a long time, are comfy, and they are warm.
Much better than cheap 'flannelette' sheets that tear after a season.
As a few of you know it's all about layers.
In winter I have the microfleece sheets, 2 woolen blankets, and a cheap polyester doona.
The blankets are staggered so the bottom one is closer to the pillow by about 30cm.
The doona is the same distance down from the top blanket.
If I pull them all up I get too hot.
I can't wear socks or I get too hot.
Every one is different but generally if the bedroom is too warm, even in winter, it will affect sleep.
Better to adjust your bedding layers and have the room a little cooler than you think you want.
E.g. I have a split system AC above and to the right of my bed. I set it to 19C for nights below 6C.
18C for nights around 6-7C, and 17C for milder nights.
These settings aren't actual temperatures of the room of course.
19C = about 20.5C*
18C = about 19.5C*
17C = about 18.5C*
- Based on the thermometer stuck on my wall.
I have had issues with hearing sensitivity so I've bee using ear plugs for many years.
I used the foam ones for years but found they weren't that great at reducing noise, and they can cause ear aches etc.
So I switched to the silicone ones and have found them to be quite good. There's still some ear ache issues occasionally but a lot less
than the dense foam type. Much better sound reducing too.
The trick is not to push them into your ears much. More of a cover for the whole space near the ear hole etc.
I make mine into a sort of triangle shape with the point being the part that sits on/in the ear hole.
Stimulants ain't what you need if you can't sleep.
I don't drink tea or coffee, and chocolate/cocoa/cacao is pretty much out too.
If you can't give up chocolate, ditch the tea/coffee.
If you can't give up tea/coffee, ditch coffee first.
If you can't give up coffee, then don't have 'strong' or 'doubles' etc. and have them in the morning only.
Caro is a great 'coffee like' drink with no caffeine.
I hope this helps.
@davoid Sleep dysfunction is certainly a shared symptom of ME/CFS and there are so many elements to getting some sort of regular pattern to at least having blocks of good regenerating sleep. I agree with your method of trying out different ways of making it as comfortable as possible and eliminating anything that may hinder the process. I put up with a crappy doona for so long and finally decided to get one that doesn't make a crunching sound every time I move! I bought 2 doonas ; one lightweight and one heavier. I also invested in good woollen blankets for winter. I have found that my sleep patterns and regular insomnia is mainly due to the troughs of PEM and the inactivity it causes. Its a double edged sword when you are inactive due to the illness and lying in bed for so long, it causes sleep dysfunction... so frustrating when you know that if you were able to be more active, then you would probably sleep better. It's around 5am and I'm up with insomnia. I only had around 5 hrs sleep and I know I didn't enter a deep sleep state. This will mean a day of sleep catch up and the cycle continues! ... This usually happens to me after a bad bout of PEM and it can take up to 2 weeks to get back to real time sleep. I decided long ago to stop watching the clock and to just go with my own body rhythms. Ironically though even when 8 hrs is achieved, I still feel like I haven't slept at all but I know that I got the sleep my body needed to regenerate. It's a common problem amongst all humans ( getting good regular sleep)... the difference with ME/CFS is you feel unrefreshed, as if you didn't sleep at all ....
@crashdummy Ditto. I’ve tried every pill out there, including Melatonin. It’s very frustrating and not a good combination to be sleep deprived as well as fatigued.
My Iron levels are always low, but recently dropped way down, not quite anaemic but close. I have been struggling with increased fatigue and tiredness for well over 6 months and it sort of coincided with the drop in iron levels.
I take an iron supplement but due to MCAS I can only tolerate small amount,s so I received Iron via an IV. Wow, the next day I noticed a difference and within 3 my tiredness had disappeared but no real change to fatigue.
I work with my GP and she checks my bloods for all supliments that I take as I’ve had issues with Kidney’s in the past.
Hi davoid, I first came here about 30 yrs ago from a 4 seasoned Adelaide. I loved the Queenslander homes built on stilts and the stunning red glow of the Canefeilds burning. They no longer burn the fields and many of the Queenslander homes have also gone. It's 21 degrees now at 9 pm our most beautiful time of the year. As we approach The end of the year and the first few months into the next the heat and humidity is really something else, many far southerners find it a bit too much here in Far North Qld. I suggest you do your homework on that one...Regards, Kalinda...
@crashdummy I can normally only go out for a drive to shop or something perhaps once a week for say about an hour max. I went to the sleep study place in the city to pick up the machine, it wasn't ready so I had to go back in the afternoon. I then had to return it in the morning , that's 3 drives ( outings ). When I returned it I was told the machine failed and I was required to do it all again. I waited a few days as I was already in a bad state from the process. I went in and got another machine and had the worst sleep ever if I slept at all, was very uncomfortable and anxious with the wires taped all over my face and chest and the nasal canular was tightly crimped closed when i took it off in the morning. I returned it in the morning which is now 5 outings to the city and 2 disastrous sleeps, results will be ready in about 3 weeks. As it was no way a representation of a normal sleep for me because I had really bad PEM due to the process I informed them I would not be taking any further action once the results have arrived. I am settled now after a few days and sleeping at my norm. You would think in 2021 they would have been able to incorporate these machines into a lightweight vest or something, they are absolutely ridiculous. I will not be taking any on-sell recommendation from the technician who specializes in equipment sales. Due to extreme PEM exacerbation I consider I have fulfilled the sleep study requirement as an exclusionary exercise ...
@Kalinda What an ordeal ... yes, you would think the process would be a lot easier and the equipment more user friendly, especially with todays' technologies. I had a similar saga with a heart monitor halter and I think I was given a well used out of date version.... I got better results from my fitbit watch! .... The process also involved pick up and drop off ... such a chore when we all know that there are better ways to do this ... One would think that PEM would mean such exhaustion that sleep would be deep and refreshing but for me it is the opposite . I either fall unconscious from extreme PEM and end up in hospital or I spend the entire PEM period unable to achieve any regular sleep pattern. Getting a block of sleep of 4hrs is usually the first indication that I am moving out of PEM and into a more stable functioning level. I do believe that I am better being the master of my own sleep process and management. I am aware that some people may need machines for other disorders such as sleep apnea and I don't know what I would do If I suffered this as well ... just another example of the broadness of trying to manage sleep whilst living with ME/CFS ... At least you went through the process to help you get some clarification and explored it even if it was under such duress.
I’m replying under this topic as I’m experiencing much more constant lightheadedness and dizziness, and pain in head and neck. ?Brainstem. So I’m wondering if I should go to my GP but a bit concerned she may prescribe the wrong meds or tests. I’ve never had any tests for POTS or dysautonmia and I’m not on any medication. Always anxious about side effects. So does anyone have any thoughts or suggestions?
river last edited by
@Glimmer head and neck pain sounds more like a structural brain/spine problem than dysautonomia (have you read about cerebrospinal fluid leaks?)
Does it feel like pressure in the base of your skull? I get that sometimes.
Personally I cannot recommend getting a tilt table test. I feel that mine permanently harmed me, I was very very sick for a year afterwards and now have to be on a cocktail of meds that weren't necessary before. After my TTT I actually developed the symptoms the TTT was meant to diagnose, for the first time ever! That said, I haven't heard of anyone else having such an extreme reaction (although long term PEM seems to be common after the TTT).
@Glimmer Hi @Glimmer .... I can understand your anxiousness when experiencing the symptoms you describe and possible causes. It is certainly not a pleasant experience to have an increase and/or new symptoms appear whilst living with ME/CFS. Where does one begin to understand all of this .... Is it predominately the ME causing the symptoms or is it another illness in it's own right or is it likely closely associated to having ME ?... I have asked these questions so many times in the past and I was not given any conclusive definite answer. I get "maybe? ...we just don't know exactly ... research shows us that these symptoms can form part of the ME illness" ... So confusing and frustrating. However I present with these symptoms as you describe on a regular basis and it forms part of my diagnosis for ME, however in 2017, an MRI done after a seemingly TIA attack, revealed that I also have a glomus vagale tumour on the vagus nerve located high in the carotid body of my neck, near skull base. It intermittently can cause facial palsy, loss of speech and all of the above you mentioned. Ironically if I hadn't had the TIA, this tumour would never have been known. Prior to it the doctors records show a history of dizziness, vertigo, lightheaded, bradycardia, gut issues ...etc etc ... the list goes on... I suppose my point is never ignore any new or increased symptoms you may experience whilst living with ME ... I think a GP check on this is a good thing to do. It will in the least give you more piece of mind. It may rule out other possible causes as well... If my symptoms increase I always get checked as there are a mountain of other illnesses out there that we may as ME patients attribute to ME but it actually isn't ME related. Symptoms can overlap between illnesses/diseases and only a professional can ascertain what is what? I hope I'm not sounding pushy... I care very much about all of us with this illness ... a GP check wouldn't go astray and even though we go to them so many times , we still have to see them for our overall health. You may not require any medications and the cause can be found and treated with other treatments. I hope your symptoms subside or completely bugger off ... take care
Thanks @river. Yes I’ve heard of spinal fluid leaks. I’ve often wondered about that. And yes I get the pressure feeling at the base of the skull, plus the ache that runs down the back of my head and continues down the cervical spine, and across the shoulders. I’ve never liked the idea of the tilt table test. It certainly gave you a hard time, so I’ve taken note of that. Thankyou also @crashdummy. I hear what you’re saying. Yes we can’t always assume that new symptoms are CFS related. I’ve had light headedness and dizziness (I get head spin sitting still) on and off since the beginning but it’s now a regular thing. One thought I had is that I did some vagus nerve and neck exercises from Dr Google (yes I’m guilty of that) and that’s when things got worse. . But I will consider a Dr’s appointment.
Hi there, I understand our symptoms can vary with CFS. Just wondering how many of you experience persistent palpitations and what your Dr.s have said/explained about it? Thanks
@New2CFS Interesting question. I get palpitations on a regular basis, but I’ve never had a medical check regarding them.
Dot last edited by
I get palpitations when I have been upright too long. I presume because my blood pressure is falling (orthostatic intolerance) and my heart is beating fast to try and get some blood to my brain.
Realising this and managing it better means it (pretty well) doesn't happen any more, so fingers crossed yours is as easily managed. Best of luck.
Thanks for the replies. Anyone also get Raynaud’s/chilblains. My toe went black/purple this afternoon. I’m new to cfs and I’m finding the symptoms disconcerting to say the least. Vertigo too.
@New2CFS ME/CFS can involve all sorts of symptoms, but if you find your symptoms aren't common in/consistent with the core diagnostic guidelines ( https://www.emerge.org.au/diagnosis ) it might be an idea to make sure there's nothing else going on as well. Sadly, having ME/CFS doesn't stop us getting other things (although I hope you don't have anything else).
river last edited by
I'm not sure what you mean by palpitations but I experience a number of things that could fall into that category:
- Skipped/extra beats (confirmed benign with ECG)
- Sensation of heart pounding even when heart rate is normal
These all get worse when I've overdone it/am in PEM. I've had many ECGs and echocardiograms and apparently my heart is healthy. People with CFS have been shown to have reduced blood flow to the brain so I assume the increased heart rate might be the body's way of trying to compensate for that. I take medication to lower my heart rate a bit because it helps with conserving energy and allows me to sleep better (my heart will keep me awake/stop me from getting deep sleep otherwise) but I have to be careful not to take too much because when my heart rate drops below 60 I get incredibly nauseous and drowsy and experience strange neurological symptoms.
Bullet point 3 - the feeling of my heart pounding - is a pretty reliable indicator of me having overdone it cognitively. It also happens after a meal if I'm having trouble digesting food. It will stop me sleeping and unfortunately my heart meds make no difference as they only change my heart rate and the pounding feeling has nothing to do with my heart rate. Doesn't seem to be related to blood pressure either. I've never asked a doctor what causes it because they're usually uninterested in "subjective feelings" like this!
JustChilling last edited by
@Glimmer hi I was diagnosed MECFS then after reading lots about dysautonomia & POTS/OI I convinced my GP to:
- do a 24 hour ambulatory blood pressure test (easy to organise)
- seperately (not during 24 hour blood pressure test) do a NASA Lean Test at GP's with their nurse (make sure the GP/nurse fully understand instructions on how to do it before doing this test, you are not supposed to talk if possible during this test as that will raise your blood pressure a bit) here's a link to instructions, it's much easier than a tilt table test and minimal impact on you compared to tilt table https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions.pdf
- send all results to a specialist who knows about dysautonomia
I did all this, and finally got to the specialist who diagnosed EDS-like Hypermobility Syndrome with secondary Orthostatic Intolerance (POTS) as well as confirming I had MECFS too. This is a much easier way for you and your GP and specialists to see what your blood pressure is doing. Once I got put onto the correct dose of meds (Midodrine, I couldn't tolerate Fludrocortisone) I found my neck and head aches are much reduced and less severe. I also am investigating structural issues, recently had a neck and brain MRI that showed foraminal stenosis in my spine (neck) and mild narrowing of spinal canal from bone spurs, so wonder if that is a possible CSF leak issue for me too, and now it's another slow referral period to see a neuro. I find getting the dizziness/lightheadedness under more control with Midodrine has been a game changer for me, I wouldn't be without it now. Previously I had tried increased hydration & salt etc but it really didn't help much, my BP drops too low and I needed medication (ended up in hospital in Feb this year with BP 100/5 and they didn't know how to help, yikes! Went home and slept, hassled small local rural hospital to forward BP readings to GP then hassled GP to forward them to specialist who finally raised my Midodrine dose to a higher dosage that works a treat. I find I have to chase up things with doctors a lot!
Start the process, it's so much easier to function when you are on the right treatment for dysautonomia/blood pressure problems. It could be a CFS leak/Chiari/etc, but start with what your blood pressure is doing, that will get you on the right track with GP and finding specialist (Austin Hypertension Clinic is good!) Hope this helps.
@JustChilling Hi! Thanks for your advise and interest. I think I’ve developed another syndrome, called Doctor’s Reluctance Syndrome. (My idea for its name, sorry). After so long with CFS I think I’ve reached a point where I don’t want to even discuss it with my GP. I would actually feel uncomfortable about it. And she never asks. I can just see me asking my GP for the OI test and her giving me a strange look, and asking why etc. yes I know I could change my GP but I haven’t the energy to start again. And the idea of starting a new medication is a no go zone. I’m just sitting back waiting for the researchers to finally give us the answer, hopefully in my lifetime.