Gingergrrl
Senior Member
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@ahimsa
I really wanted to reply to this thread sooner but couldn't find it! Thank you for everything you typed out.
Just to clarify, do you mean that the tachycardia in your sleep was related to autonomic dysfunction and NMH? I am not sure in my case if the tachy in my sleep was related to pushing too hard during the day. All I know is that it was the very first symptom that I had that something was really wrong and it started in Jan 2013 (10 mos after I had mono and two weeks following an unknown infection.) Did yours occur exclusively during REM sleep while you were actively dreaming?
Did you find a correlation between resting and not having the tachycardia in your sleep? I drink all the Pedialyte, Vitalyte stuff, too. I also feel better when I do not eat dinner but then I started having hypoglycemia episodes and now I force myself to eat more whether I want to or not.
What kind of co-infections do you mean? Also, do you mean that the tachy in your sleep is totally gone on it's own? Mine is 99% gone with a beta blocker but every once in a while, I will still have an episode (but very rarely.)
The initial cardiologist that I saw was a joke and I don't think she believed me that I was having tachy in my sleep up to 160 and 170 bpm. She said, "Well, I can get my HR that high in my spin class..." and I said, "But I am not in a spin class, I am SLEEPING!" Needless to say I switch to a new cardio who did a Zio Patch test which captured the episodes. She believed me and said they were IST and gave me the beta blocker. Neither mentioned dysautonomia or OI and I did not know the terms at the time to even ask. I am now seeing a third cardio (my current doctor) who knows about dysautonomia but does not know anything about ME/CFS.
I did a full sleep study in 2013 which showed no sleep apnea and normal blood oxygen levels. I had very mild CFS at that time and was still working full-time and had no idea what my diagnosis was, only that I had weird tachy in my sleep. I took the beta blocker for the sleep study (which I regret) so the episode did not occur and I barely slept the entire night and it was a waste of time.
I did not realize that at the time and am still not sure if I understand the full connection because when I am laying flat and resting or sleeping, it is the only time I can breathe normally (except for those episodes.)
When you say co-infections, what do you mean? I have EBV and VZV but are you referring to viral stuff or bacterial or something else? For me, it has been worth it to travel to see an ME/CFS specialist but I know this is a personal choice and it definitely involves time, money, energy, etc, and the travel is very difficult for me in my current state (and I only do it twice per year.) It is a leap of faith that at present I feel is worth it (for me.)
This is similar for me except that my BP is always low and not just when I am standing. Also, I have no problems sitting at a desk (or sitting anywhere) but I have major problems with standing, walking, eating, etc.
Do you mean that you actually faint? I have never fainted in my life no matter how low my BP has gotten.
This is pretty similar to me except I don't have much dizziness or brain fog and my worst symptoms are shortness of breath and chest pressure which at it's worst is chest pain that my cardio thinks are microvascular angina spasms.
I do everything you said here except for Florinef which made me sicker.
Have you ever had a Zio Patch test? I really think you could capture it on that.
Actually it was very helpful and you were very helpful in the past when we were discussing Midodrine. I really appreciate it. I relate to a lot of your experiences and the difficulty in just walking across the room. I have never had night sweats though.
Not rambling and very helpful! Glad I am not the only one who types long posts!
This got very long but I'm not sure what to cut out. I have not idea whether it will help anyone but I do hope someone gets something out of it!
I really wanted to reply to this thread sooner but couldn't find it! Thank you for everything you typed out.
As far as I can tell the tachycardia I described in this thread was related to my problems with autonomic dysfunction and NMH. The problem seemed to be related to pushing too hard during the day. I was gradually ramping up my activities (not exercise, just errands and household duties) without realizing it. At the same time, I was gradually reducing my resting time without realizing it.
Just to clarify, do you mean that the tachycardia in your sleep was related to autonomic dysfunction and NMH? I am not sure in my case if the tachy in my sleep was related to pushing too hard during the day. All I know is that it was the very first symptom that I had that something was really wrong and it started in Jan 2013 (10 mos after I had mono and two weeks following an unknown infection.) Did yours occur exclusively during REM sleep while you were actively dreaming?
So, I got serious about reducing my activities and resting more (which is VERY HARD because I hate doing nothing). I also started mixing up a homemade electrolyte mixture (something close to Pedialyte in sodium/potassium levels) more often. I drink that instead of dinner maybe 3-4 times a week. Unlike so many folks on this forum I sleep better when I don't eat dinner (no blood sugar problems).
Did you find a correlation between resting and not having the tachycardia in your sleep? I drink all the Pedialyte, Vitalyte stuff, too. I also feel better when I do not eat dinner but then I started having hypoglycemia episodes and now I force myself to eat more whether I want to or not.
It may also be that I had (have?) some sort of co-infections that got re-activated as @CBS suggested (have not re-read the thread but I think that was mentioned?). But whatever the reason for my problem it finally did subside and has not come back.
What kind of co-infections do you mean? Also, do you mean that the tachy in your sleep is totally gone on it's own? Mine is 99% gone with a beta blocker but every once in a while, I will still have an episode (but very rarely.)
By the way, none of my doctors were helpful, sadly. And the sleep specialist that I visited had not heard of Orthostatic Intolerance. What's worse, she did not even glance at the patient handout from Johns Hopkins.
The initial cardiologist that I saw was a joke and I don't think she believed me that I was having tachy in my sleep up to 160 and 170 bpm. She said, "Well, I can get my HR that high in my spin class..." and I said, "But I am not in a spin class, I am SLEEPING!" Needless to say I switch to a new cardio who did a Zio Patch test which captured the episodes. She believed me and said they were IST and gave me the beta blocker. Neither mentioned dysautonomia or OI and I did not know the terms at the time to even ask. I am now seeing a third cardio (my current doctor) who knows about dysautonomia but does not know anything about ME/CFS.
The screening test showed no apnea and excellent blood oxygen levels, which was good to know... But I was not going to bother with a full sleep test with a doctor who did not even know about autonomic problems (and who did not want to learn!).
I did a full sleep study in 2013 which showed no sleep apnea and normal blood oxygen levels. I had very mild CFS at that time and was still working full-time and had no idea what my diagnosis was, only that I had weird tachy in my sleep. I took the beta blocker for the sleep study (which I regret) so the episode did not occur and I barely slept the entire night and it was a waste of time.
I think it's pretty well known that autonomic dysfunction can interfere with sleep.
I did not realize that at the time and am still not sure if I understand the full connection because when I am laying flat and resting or sleeping, it is the only time I can breathe normally (except for those episodes.)
I doubt that I could find a doctor *locally* to do these extra tests for co-infections. And I'm not up to any serious investment of time/money/energy/travel to go to an ME/CFS specialist. I guess I just don't believe the trade-off would be worth it. Plus, there's always the risk of running into doctors who would do more harm than good.
When you say co-infections, what do you mean? I have EBV and VZV but are you referring to viral stuff or bacterial or something else? For me, it has been worth it to travel to see an ME/CFS specialist but I know this is a personal choice and it definitely involves time, money, energy, etc, and the travel is very difficult for me in my current state (and I only do it twice per year.) It is a leap of faith that at present I feel is worth it (for me.)
Okay, now I should try to describe what I think are my two different kinds of tachycardia. One kind is due to Orthostatic Intolerance (OI) -- NMH (Neurally Mediated Hypotension) and POTS. My symptoms come on due to various NMH triggers like posture (standing still is the worst, but sitting still and upright at a desk is also bad), getting overheated, and after eating (splanchnic pooling, blood pools in the abdomen).
This is similar for me except that my BP is always low and not just when I am standing. Also, I have no problems sitting at a desk (or sitting anywhere) but I have major problems with standing, walking, eating, etc.
The tachycardia is just one of the many pre-syncope symptoms that I get.
Do you mean that you actually faint? I have never fainted in my life no matter how low my BP has gotten.
It does not come alone. I also get nausea, dizziness, brain fog, fasciculations (muscle twitches), sometimes muscle pains, and others that I can't remember right now. This, along with PEM from the ME/CFS/whatever, is disabling. I am not in bed all day but I am mostly at home. I am on disability, don't exercise, spend a lot of time resting, can't do a lot of household things, etc.
This is pretty similar to me except I don't have much dizziness or brain fog and my worst symptoms are shortness of breath and chest pressure which at it's worst is chest pain that my cardio thinks are microvascular angina spasms.
This tachycardia from OI is always part of a larger set of symptoms. What helps me is to rest in the recliner with my feet up (or lie down completely), get cooler, drink electrolytes, etc. And the drugs/supplements already mentioned (midodrine, florinef, potassium RX, salt tablets, magnesium).
I do everything you said here except for Florinef which made me sicker.
When I first saw the cardiologist for my problems with ME/CFS/NMH (sorry to those who don't like this combo of terms but I never know what to call my illness) I mentioned this other type of tachycardia as part of my medical history. Because it has never been caught on an EKG (even though I've had two holter monitors since 1990) no one knows for sure what it is.
Have you ever had a Zio Patch test? I really think you could capture it on that.
I'll end by saying that I've been sick since 1990. I think having been sick for so much longer means that I don't know whether what's going on for me is going to be even remotely relevant to you. I was much sicker early on, esp. during 1991 (difficult just to walk across the room). Many of my symptoms have changed over the years. I'm not even sure I could list all the different changes after all this time. For example, I had lots of night sweats in the beginning and now these are quite rare (once every year or two?).
Actually it was very helpful and you were very helpful in the past when we were discussing Midodrine. I really appreciate it. I relate to a lot of your experiences and the difficulty in just walking across the room. I have never had night sweats though.
Okay, that's more than enough rambling from me!
Not rambling and very helpful! Glad I am not the only one who types long posts!