I have always struggled with my sleep for at least the past 20yrs. If i get 4 hrs I think Ime doing well., However over the past 4 years things have gotten worse and a bit sinister.
Every night for the past 4 years or (around 1500 concecutive nights) I have had very strong heart palpitations when I try to sleep...if I do magage to drop off they wake me up with hard thuds in my chest...it feels like my heart is actually jumping and you can hear a dull thud...it can bee very frightening and soul destroying...as my lack of sleep impacts the rest of my day....there has been no let up at all.
Over the past four years I have had EVERY possible investigation and gone through three different cardiologists....the upshot seems to be that they think it is benign PVC's or ectopic beats and have proscribed Aspirin, Atorvastatin and Bisoprolol, but non of these seem to be doing anything. However, they cannot explain why it only happens when i am trying to sleep and not at any other time during the day or even when I go to the Gym.....I get nothing.
It feels as it my heart isn't allowing me to sleep !.... all very strange. Thanks for reading....
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Mgs333
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Hi, Mgs_ first thing that comes in my mind, based on everything I learned last 4 years, would be going for a Polissonagraphy - PSG. Have you one recent?
_ in my modest opinion, good diagnostic on sleep problems, oxygen, respiration patterns, sleep patterns, anonalies, RLS, whatever moves, etc, is everything. And they all depend on PSG as a start up.
Unfortunately while it's great at finding serious physical issues like sleep apnea, seizure disorders, etc... It's pretty useless when you merely don't fall asleep or get poor quality sleep but otherwise test as completely healthy. Even when they see something is mildly wrong like micro awakenings (waking in the middle of rem cycles), too little rem or deep sleep, and other problems with the normal order or amount of various stages of sleep there is nothing they can do about it. There is no medication tested for increasing rem. In fact most sleep aids reduce rem or deep sleep making the problem worse.
It's not at all a bad idea to rule out those major issues but once you've done that I found even sleep specialists neurologists at sleep clinics were mostly useless. All they could do was recommend the usual behaviors attempted for all types of insomnia and give out the same sedating medications any psychiatrist would give even without a sleep study.
_ yes, it looks each of us have their own experiences and biases on our illness. I have mine. Four years ago (age 65) I went for my first PSG! It represented kind of rebirthing for me. Even sleeping poorly, PSG returned me a bunch of invaluable information. Last week I went for the second PSG, pretty much replicating the first one;
_ why my point on PSG?
(1) I found out I had no problem with apnea/hypopneas themselves (no stop breathing or oxygen drops) during NREM stages, however I had trouble with flow limitation (UARS), all night long, and also significant problems with hypopneas during REM stage. I had troubles going smoothly through REM stages without arousals/awakenings (> 15 seconds);
(2) I found out and confirmed I had also PLMS (some 40 moves/hour);
(3) Then, I started use Bilevel CPAP, which corrected pretty much everything, except for some residual/deleterious awakenings, mainly during REM. Life started changed for the better since four years ago. Keep studying and learning a lot, including blogs (such particularly apneaboard.com/forums/; and this one overhere);
(4) With tons of data/information from the CPAP and Oscar app (kind of PSG every night since then) I have been learning how complex are the interrelations between PLMS-RLS and arousals/awakenings (my main drawbacks);
(5) For instance, I learned that PLMS is not a significant problem for me, as I usually sleep through them without arousal/awakenings;
(6) Arousal/awakening during REM (very often truncated before ending) keep being my main problem, and appears that RLS attacks only occur when I arousal/awake for some other reason (right currently, I am studying this issue with my ENT: hypersensitive nervous system? Neurophysiologic issues, etc);
(7) In other words: should I did not wake up for some other reason, RLS would not bother me during the night. RLS would take charge only when one wakes up?!. Therefore, anything else that is able to arousal/awakening you (such as any minor sleep disorder, seen in PSG, for instance) should be the first thing to be well diagnosed and eventually disregarded or treated;
(8) Fortunately, some 1.5 years ago, I learned how to 100% stop (within some 15 minutes) my RLS crises when I wake up during the night, by using the stress reducing EFT (acupuncture without needles, combined with exposure psychology) and other energy techniques;
(9) Therefore, I have been successful on getting better sleep nights (some 90% solution these days) by using these techniques, sleeping in two stages (00;00 to some 3;30/4;00 am, and from 5;30/6;00 onward, up to 9:00 am), and adding 0.4 mg of Clonazepam (wonderful drug), which is not meant to stop RLS, but rather to increase arousal threshold, increase drive to back to sleep quickly after awakenings/wake ups, and leave a residual sleepiness to go back to sleep in the second stage.
As I said if you have a physical problem such as sleep apnea, RLS, etc.... then sleep studies will show it and then it can be treated directly without guessing. They are useful for ruling out obvious physical problems and generally best that everyone with sleep problems or daytime fatigue have a sleep study to confirm they don't have any of those issues.
However, for a very large number of people and probably the majority with sleep disorders a sleep study ends up being useless because the problem only shows up within the function of their brain and has no impact on breathing, movement, etc... Even when we can see that the brain waves are not doing what they should we don't have medications or treatments that can fix them. Not in well recognized medicine anyway. You have to get into things like neurofeedback, herbal medicine, integrative health, and other alternative medicine systems for possible solutions because all typical doctors can do is guess on contributors such as ADHD is known to reduce rem sleep or stress overall can contribute to poor sleep architecture. Then they have only 2 solutions. Sleep hygiene improvements or sedatives because most of the medical system in any country has no real knowledge of how to treat the sleep specific symptoms that result from those or other problems. We can treat adhd symptoms and help manage stress but that doesn't guarantee it will be successful in eliminating the negative patterns seen on a polysomnography.
We simply have no effective treatment for insomnia if it does not have an obvious physical or external cause even when we can see something is wrong. Unfortunately most people who go looking for help on forums fall under the group that does not have an easily diagnosed and treated sleep disorder. If they did they'd be less likely to need to ask questions because it would be easier to get an effective treatment. Many have something with an unofficial name like alpha wave intrusion(aka alpha delta sleep), things that are poorly understood like micro awakenings, DSPS, or overall reduced rem, sleep problems as a result of neurological disorders we can't effectively treat completely like adhd, autism, past head trauma, or dementia disorders, or sometimes people have general poor sleep from health disorders with groups of vague symptoms we are only beginning to figure out how to treat any part of such as cfs/me, fibro, and metabolic disorders. Again we have no knowledge of what specifically helps the related sleep disturbances resulting from those disorders and quite often doctors don't even realize those are the causes of sleeping problems. We just treat what we can of the symptoms and hope it also improves sleep.
Another issue is that a single sleep study may not show the issue that night and it can't tell you if a medication, supplement, or behavior change is helping unless you keep doing another sleep study every time you change something. You can be given a medicine that actually creates a sleep quality issue and spend months trying to figure out if it's helping or if you really do feel more tired because of that med. After years of guessing like that I found one of the most useful things is ongoing at home sleep trackers so you have many nights to compare data and can determine if a new treatment attempt truly does improve your sleep or not. The $300-$600 price tag is not worth it for those that have mild, temporary, or insomnia with a known cause that can be treated but for those that stuff life long problems no one can figure out you've likely already spent $1,000s on possible otc treatments that aren't sure if they worked or alternative medicine doctors not fully covered by either countries with national health care or those with insurance systems.
If you have those chronic hard to treat sleep problems and can't afford a sleep tracker with enough accuracy or detail and your doctor is not willing to repeatedly send you for a sleep study every few months then I recommend using free online cognitive testing websites. You can compare the values day to day and at least have something more solid than vague feelings of how well your brain is working that day. Even if it doesn't tell you exactly what the problem is you can see if your tests decline or improve in the weeks after a med compared to before it.
Trying to figure out if you slept better one night versus another is actually surprisingly inaccurate without some type of measurement due to the amount of other variables that can impact mood, energy, and alertness. You can be tired despite plenty of sleep or energetic despite limited sleep. Sleep quality is also very hard to measure without using a sleep tracker. You can sleep 10+ hours and only get 2hrs useful sleep or sleep 4hrs and be better rested than someone that sleeps 8 because they have extremely reduced efficiency of their sleep stages. That's another thing a polysomnography is bad for. I was sleeping 12hrs a night on strong sedatives but still tired all day long and wanting more and more sleep. Nothing originally showed up on polysomnography except I failed to fall asleep for 5+ hours after laying down in the dark despite meds and I had micro awakenings so they gave me more sedatives. Even trained sleep specialist neurologists didn't know anything more to do than give me stronger and stronger sedatives.
Several years later when I bought the oura ring sleep tracker it turned out during those 12 hours of sleep I was now only getting 15mins or less rem The current estimate for normal brain function is that the average person needs a minimum of 90-120mins of rem sleep and typically healthy people without sleep disorders get around 200mins a night. Every time I take a prescription sleep aid my rem time is cut in half or more because it is quite normal for those meds to interfere with sleep architecture in negative ways.
When it comes to improving or maintaining quality off label alternatives can actually be better than meds tested specifically for increasing sleep. The studies to get the meds approved specifically for treating sleep disorders concentrate on whether it triggers sleep and results in more sleep but rarely if it creates better sleep. A polysomnography can even lead to improper treatment in such cases as mine because the standard treatment for poor sleep architecture on a polysomnography is to give meds that usually further reduce the quality of sleep but doctors rarely do a repeat sleep study to see that and they don't pay attention to the studies that do show reductions in sleep quality from meds such as benzos.
With an oura ring I can actually see for myself what meds reduce my sleep quality night by night and week by week instead of trying to guess if it was the med or I'm tired for some other reason. I basically have a polysomnography every single night via my oura ring (with some slightly decreased accuracy compared to a professional setup) so I'm not relying on one snap shot of one night on one set of meds or no meds that doesn't tell my doctors or myself anything about what treatments improve my lack of rem and tendency for micro awakenings. Lately my oura ring has been showing only minutes worth of rem again while I was feeling increasingly unmotivated all day so I stopped my doral benzo temporarily until rem sleep increased again and then restarted it. I knew it reduced rem because I watched it happen when I started taking it but for some reason certain benzos do make me feel better rested if factors I have not yet figured out don't further contribute to reducing my rem beyond what that single med does.
Using the ongoing results of my oura ring data I initially ditched most meds that are typically recommended by the doctors that interpret the results of sleep studies and used my oura ring to determine what truly helped me ongoing. Seroquel, benzos, all antidepressants, etc.... I tapered off and then I started over with mostly belsomra and ADHD treatments, which resulted in adding clonidine at night. Then I added the hydroxyzine for it's combination mild sedative and immune system/anti inflammatory effects based on other health issues I had and after 8+ months of trying some supplements out as well ended up periodically adding a benzo again as needed and stopping it whenever it is doing more harm than good.
I also kept looking for a cause when doctors give up on a cause for insomnia far too quickly. They only know of obvious physical causes you see during a sleep study with polysomnography, poor sleep hygiene, or emotional causes such as anxiety, depression, or stress and that's the end of the list for what most are trained to recognize and treat. Majority don't know things like ADHD or chronic fatigue syndrome can lead to altered circadian rhythm and interfere with stages of sleep. Most don't know about DSPS at all and even fewer about alpha wave intrusions. Typical treatments for sleep even from a sleep hygiene or behavior approach can be the opposite of what's needed in some of these situations. ADHD requires some type of mild stimulation when falling asleep instead of a silent, dark room or your brain just explodes with activity. Then you are stuck awake for several more hours while you distract it into shutting up. Watching tv is the most useful thing for me to go to sleep provided I keep the light emitted from the device to a minimum and use a blue screen filter. It's not what I recommend most people try first but it's the reason why I always warn to test recommendations for yourself instead of blindly following them on the assumption they help you specifically when sleep hygiene recommendations are meant for the general population and not a specific situation.
It's actually quite lucky if you get doctors that are willing to think outside the box and try a variety of off label medications and treatment approaches to improve your insomnia when it doesn't have an obvious cause. You are far more likely to find a good, long term solution than the doctors who just hand you a benzo or z-drug without even doing a sleep study or continue to drug you on ever increasing doses of them when your sleep study doesn't give results they understand how to use.
Hi sounds arful myself I've had similar when in bed but mainly when stressed and the more you are aware it seems to happen more, and usually is just a hard strong pound but when I get anxious about it or think of a problem in life it can go funny irregular or bit rapid I deep breath and it's ok, I suffer from broken sleep but when i.go swimming it helps me sleep better hope things improve for you 🤗
I had similar and I kept going to emergency care only to have them find my heart was fine, my oxygen levels were fine, and they saw no reason for it so they'd give me a benzo for anxiety, which did nothing except get me slightly high and then a headache later, and send me home.
First make sure it's not an issue related to blood pressure such as orthostatic hypotension but I would assume they would have already checked how your blood pressure and heart rate react.
Second chronic lack of sleep will raise your heart rate and stress your body, It will make it more sensitive to everything you experience and your heart rate prone to spikes. By itself though it shouldn't cause such excessive symptoms. It only adds one more factor and the main cause is probably contributing to your sleep issues as well.
It took several years and typical doctors repeatedly doing tests that kept showing nothing but eventually I realized my symptoms were a metabolic problem. This is not an area of medicine doctors typically recognize problems with or understand very well. My body felt exactly like I'd just been exercising like jogging despite the fact I was laying down in bed. The fluids they gave me in the ER contained sodium lactate and made it worse since lactic acid is one of the byproducts of exercise that triggers you to breathe faster and your heart rate to increase in order to get rid of it. It took a lot of searching but I found 2 studies that triggered raised heart rate, brain fog or fatigue type symptoms, and increased respiration in nearly all subjects given sodium lactate IV but not when given a plain saline IV. One group had been diagnosed with panic disorder the same as they kept trying to claim I had despite the fact I'd be completely calm and even joking about US insurance with nurses and the other was a group from an allergy clinic that diagnosed themselves with the unrecognized "multiple chemical sensitivity" issue.
It turned out to be quite surprising how many things raised lactate levels or related byproducts like that. It's a common binder or stabilizer in medications and supplements. Many medical procedures such as the iv contrast for a ct scan that triggered my first episode will also increase lactate levels. At one point a doctor did a blood gas that did come back mostly consistent with metabolic acidosis (results from excessively high levels of things like lactic acid) but not severe enough to officially diagnose it so she explained away the numbers that were off by blaming my increased heart rate and respiration having used up the buffer in my blood.
I saw an integrative health doctor that did more extensive testing than a typical doctor. Even some tests that aren't entirely recognized as having a use by most medical professionals. She helped me put together some basic supplements and dietary changes to improve how well I processed nutrients and waste products from foods and medications. Especially improving protein methylation. I also stopped some sedating medications I was taking for insomnia such as seroquel that were likely triggering metabolic problems every night.
My bp and heart rate have remained sensitive and will spike or drop easily but not to the point it causes other symptoms and it goes away quickly. It used to last for hours until my body managed to stabilize itself again. Usually my heart rate spikes a bit if I'm low in electrolytes or in response to trying a new med or supplement but it's no longer a random, unknown event I can't do anything about. My body just seems prone to overreacting that way to anything that stresses it physically even if mentally I'm completely calm. Now I know how to reduce it and to look for something new that triggered it.
To improve it immediately I drink a sports drink like gatorade or a water with added electrolytes, citric acid containing drinks like lemonade can help if you lack anything with electrolytes, and take sublingual methylcobalamin(b12), methylfolate, and glutathione tablets. Recently I found NAD+ and other nicotinamide substances can also help prevent or stop symptoms when my body has gotten stressed by something I ingested, poor sleep, or just overall ate a poor diet during the past week or 2.
How food turns into all the things your body and brain needs is an insanely complex process that takes just the right amount of vitamins, minerals, and macronutrients eaten along with the right amount of enzymes, peptides, and other things created by the body to convert them. When the system breaks weird, vague symptoms can happen despite all typical tests looking normal and it's very very difficult to find exactly where the problem is. For the first few months I took a very long list of vitamin and mineral complexes, meal replacement shakes, supplemental nutrients like omega fatty acids, and coenzymes before I could reduce it down to just a few things I remained consistently low in.
Hi I had exactly the same as you and my cardiologist referred me to the sleep clinic. I was diagnosed with Sleep Apnoea and given a CPAP machine. That was 3 years ago and I've never had any problems since. You could ask your GP to refer you for testing for Sleep Apnoea.
_ I humbling suspect there might be so many people misguided/misled by wrong diagnosis and/or treatment for RLS/PLMD, which very often run hand in hand, as comorbidity, with sleep disorder breathing (SDB - even very minor ones). And, in turn, eventually, SDB could be the main culprit for bad night sleeps, and not exactly RLS themselves.
_ Dr. Barry Krakow in his book "sound sleep" says:
"SNOOZE FLASH The Link between SDB and Leg Jerks The great controversy about RLS and PLMD is their relationship to SDB. Many patients with RLS and PLMD also suffer from SDB, especially upper airway resistance events. In sleep studies in some of these patients, recent research shows that the movement occurred at the end of a (UARS event. Remarkably, when these patients received PAP therapy, their leg jerks decreased as air pressure normalized breathing. Of further interest, research also has shown the opposite result, in which a PLMD patient with SDB was treated with a medication to eliminate leg jerks, which then stabilized sleep and eliminated SDB. Chart 5 on page 262 shows examples of how leg jerks appear on the sleep test and how they interact with SDB events. Breathless Legs These SDB findings indicate that some people’s conditions mimic but are not true leg movement disorders. This conundrum requires patience to sort out at a sleep center. If we see PLMD in an SDB patient, we are reluctant to treat the legs until we’ve treated the breathing."
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