Gingergrrl
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** Before anyone reads this, I want to add that I wrote the original post in 2014 and it is not current. This thread often gets revived and when people read it, they think it is new or current and send me PM’s with feedback, advice, and concern.
I feel badly that people are spending their time and energy doing that so, I wanted to clarify upfront that this is a very old thread (from 2014) and the issues I wrote about at that time are totally resolved. Thank you to all!
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Here is the (unedited) thread from 2014:
When my entire ME/CFS started (about 10 months after severe mono from EBV) I started having unexplained tachycardia during REM sleep which would abruptly wake me up with HR as high as 177 bpm. It took about a year and a half but I got this under complete control with Atenolol and haven't had an episode in about six months. I've still had POTS episodes where during the day, I could stand up and HR goes between 120-140 but these are not as bad b/c I am awake!
Well, last night I was exhausted and went to sleep around 7:30 pm and then around 9:50 pm I was awoken from a dream (not a nightmare, just a random dream) with HR of 164 bpm. When this happens it is very scary and confusing and I can't breath or talk plus my hands and arms are numb (I guess b/c the blood is trying to get to my heart.) All I can do is wait it out and my HR goes back to normal within a few minutes. I took an extra 1/4 Atenolol after the episode but it takes me about a full day to recover.
I didn't do anything exerting yesterday or change my Atenolol dosage (prior to the episode) so I was trying to figure out why this occurred. I had very severe menstrual cramps for two days where it literally feels as if a knife is stabbing me in the stomach and back (I am so sorry for the TMI- especially for the men ) and trying to figure out if this was the cause. I had to take pain pills for the cramps but I have done this for many years and nothing new or different. When I took a shower (using shower chair) I was so dizzy, it was the first time I thought I could faint if I didn't have the chair.
I am now going to increase my Atenolol from 1/4 pill at night to a 1/2 pill at night (and can actually increase it further per my cardio at my last appt.) I just hadn't b/c it wasn't needed and I don't want to lower my BP which is already low but the tachycardia is by far worse. And just to clarify from multiple tests over a three year period, the tachycardia is all sinus tachycardia and no arrhythmia.
What is the most discouraging and frustrating to me is that the extreme tachycardia in my sleep is by far the worst symptom of everything I have experienced. It was such a relief when it stopped that I was then able to say to myself (no matter what else was going on) that, "Well, at least that is gone!" and it felt safe to go to sleep or take a nap without worrying about being woken up with my HR in the 160's and 170's.
Now today I feel as if I have been hit by a truck and it feels like my heart and chest are bruised. For whatever reason my pulse pressure is really low (closer to 20) when it had been 30 or even above for weeks.
Has anyone else had this symptom and did I do something wrong to make it return? I know it is pure dysautonomia but did I do something to trigger it to come back that I am not aware of? I feel so discouraged b/c if the tachycardia in my sleep is not better, then literally NOTHING is better and I am back at square one.
I feel badly that people are spending their time and energy doing that so, I wanted to clarify upfront that this is a very old thread (from 2014) and the issues I wrote about at that time are totally resolved. Thank you to all!
—————————————————————
Here is the (unedited) thread from 2014:
When my entire ME/CFS started (about 10 months after severe mono from EBV) I started having unexplained tachycardia during REM sleep which would abruptly wake me up with HR as high as 177 bpm. It took about a year and a half but I got this under complete control with Atenolol and haven't had an episode in about six months. I've still had POTS episodes where during the day, I could stand up and HR goes between 120-140 but these are not as bad b/c I am awake!
Well, last night I was exhausted and went to sleep around 7:30 pm and then around 9:50 pm I was awoken from a dream (not a nightmare, just a random dream) with HR of 164 bpm. When this happens it is very scary and confusing and I can't breath or talk plus my hands and arms are numb (I guess b/c the blood is trying to get to my heart.) All I can do is wait it out and my HR goes back to normal within a few minutes. I took an extra 1/4 Atenolol after the episode but it takes me about a full day to recover.
I didn't do anything exerting yesterday or change my Atenolol dosage (prior to the episode) so I was trying to figure out why this occurred. I had very severe menstrual cramps for two days where it literally feels as if a knife is stabbing me in the stomach and back (I am so sorry for the TMI- especially for the men ) and trying to figure out if this was the cause. I had to take pain pills for the cramps but I have done this for many years and nothing new or different. When I took a shower (using shower chair) I was so dizzy, it was the first time I thought I could faint if I didn't have the chair.
I am now going to increase my Atenolol from 1/4 pill at night to a 1/2 pill at night (and can actually increase it further per my cardio at my last appt.) I just hadn't b/c it wasn't needed and I don't want to lower my BP which is already low but the tachycardia is by far worse. And just to clarify from multiple tests over a three year period, the tachycardia is all sinus tachycardia and no arrhythmia.
What is the most discouraging and frustrating to me is that the extreme tachycardia in my sleep is by far the worst symptom of everything I have experienced. It was such a relief when it stopped that I was then able to say to myself (no matter what else was going on) that, "Well, at least that is gone!" and it felt safe to go to sleep or take a nap without worrying about being woken up with my HR in the 160's and 170's.
Now today I feel as if I have been hit by a truck and it feels like my heart and chest are bruised. For whatever reason my pulse pressure is really low (closer to 20) when it had been 30 or even above for weeks.
Has anyone else had this symptom and did I do something wrong to make it return? I know it is pure dysautonomia but did I do something to trigger it to come back that I am not aware of? I feel so discouraged b/c if the tachycardia in my sleep is not better, then literally NOTHING is better and I am back at square one.
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