@Gingergrrl Yes, your post was very helpful -- thanks. I can't imagine how awful it would be to have a heart rate as high as in the 160's and 170's while sleeping. The worst mine has been at night (recorded by a pulse oxymeter) was in the 140's. Recently, my "in bed" maximum has been in the 90's -- that was bad enough.
@Old Bones Thanks and am glad it was helpful. Yes, the super high tachy was unbearable and was the first sign that anything was really wrong back in Jan 2013. My highest HR captured was 177 bpm in my sleep. It would wake me up every time and at first it was a few times per week and then it was happening multiple times per night and often took days to recover from it.
I saw a cardio and we captured multiple episodes on a Zio Patch (like a holter monitor but better) and it was all in sinus rhythm and I was diagnosed with IST (inappropriate sinus tachycardia.) That cardio said that she had seen IST in females in their 30's & 40's who had mono/EBV the prior year (which was me!) and that it should resolve in 6-12 months and put me on a BB. I continued to work full-time until the end of Feb 2014 (another full year) while taking the BB and believing it would completely resolve but it didn't.
Unfortunately during that period, the tachy shifted over to POTS and instead of happening in my sleep, it happened with positional changes. I would stand up from a chair and my HR would jump up to 120 or 140. My blood pressure would drop really low (80's/50's) and I noticed that my breathing was getting worse. First I could no longer walk a few flights of stairs and it just kept getting worse until Oct 2014 when I got a wheelchair for longer distances. Now I use the wheelchair inside the home, cannot climb a single stair, and my shortness of breath occurs any time I stand/walk even when my HR is perfect (on the BB.)
I no longer see that cardio (even though I liked her as a person) b/c she failed to tell me that I had ischemia on a treadmill test b/c she decided it was a "false positive." She told me my issues were autonomic and the severity was outside of her expertise so she referred me to my current cardio (who is not great but is more knowledgeable than her IMO.)
If I'm really diligent with my pacing, if nothing interesting is happening in my life, (and if the stars and the moon align properly!), my resting heart rate is in the high 50's/low 60's, even without a beta blocker. So, I'd be concerned about it going too low on medication. At times, it seems I need the high heart rate to be functional. At other times, I feel exhausted and out of breath at the same heart rate. So, I'm really variable.
Pacing doesn't help me and I will explain why. I have no shortness of breath when I am lying flat. I could rest in bed for an hour or I could rest in bed for weeks/months but the moment I stand, the dyspnea is immediate. I can usually walk from bed to bathroom (my legs are fine) but if I push it much further, I get extreme shortness of breath and chest pain. It feels like a belt is tightening around my chest and back. The only thing to regain my normal breathing is to lie flat again.
If the episode was minor, I can regain breathing in the supine position fairly quick, but in a bad episode, it can take hours. I have no delayed PEM and my autonomic and breathing issues are immediate and severe. I do not have a motorized wheelchair but this is where it is headed. If I am home alone and need something in another room, I either skip it or face the consequences which are severe. I cannot walk to the elevator of our bldg let alone to the lobby or garage and completely dependent on being pushed in wheelchair to leave the home.
My HR is only in the upper 50's to upper 60's with the BB and without it would be in the 70's or 80's so I have never had it drop too low. On a 15 minute TTT my BP very quickly dropped to the 70's/40's but in a regular day it does not drop that low. With Midodrine it now stays in the 90's/60's and my breathing gets a slight improvement so I know there is an autonomic component. Several docs think the Midodrine is bringing more blood perfusion to my lungs and heart when I stand and I agree with this.
The confounding variable is that I have failed four PFT/spirometry tests which show a "restrictive pulmonary physiology." A lung cat scan ruled out any intrinsic lung issue so this means that the restriction is caused by something "extra-pulmonary" like diaphragm weakness or 5-6 other potential causes. This is what I am currently trying to solve and I am laser focused on this issue b/c if I could breathe enough to stand and walk, I actually feel normal. But I am so impaired by the breathing issue that I am completely dependent on family for help.
The pulmonologist described my lungs as passengers on a train and even though the passengers are healthy, if the train is broken, the passengers are not going anywhere. He also described a lung restriction as feeling as if a tight belt is around your chest and this is what I feel every time I stand up but never when I lie flat.
Your comment about BB's and MCAS was especially helpful. Although I haven't been diagnosed by a specialist, I have 39/58 symptoms on a MCAS checklist, and my reactions to the triggers, food and other, are consistent and quite severe.
Am glad this was helpful and MCAS had been the other thorn in my side since March/April of 2015. I also looked at the Masto society check list and matched on like 30 of 50 symptoms like you including things like life-long allergy to aspirin, allergy to food dyes, severe period cramps, unexplained bruises, histamine surges, and things you would never think of. BB's are on the absolute "no" list but all my docs including my MCAS specialist who is phenomenal does not have an alternative for me. My MCAS is now better than I ever dreamed of (while still on the BB) but I don't know if this is a temporary reprieve or permanent.
I sincerely hope your appointment with the autonomic specialist next month provides some answers. There is a new POTS clinic in my city. With an undisputed ME diagnosis, I hesitate asking for a referral until I know they are aware of this complication.
Thank you so much and I will keep sharing the details hoping it will help someone else. I thought I had an undisputed ME diagnosis as well but now am not as sure. The autonomic docs I have seen were both cardios but the one I am seeing in Feb is a neurologist and am hoping he will look at my total picture with a fresh set of eyes.