Rough Crash - HR Monitor be damned

[SDSue]

@SOC How long did it take you to train yourself? I'm a few months in, yet still can't get the hang of it. On really good days I stay well below my estimated AT, on really bad crash days my HR climbs very rapidly and I can't do much of anything but hit the bed. And the remainder of days are somewhere in between, but I can't yet predict.

Is this due to my POTS not being adequately treated? Or is this just par for the ME/CFS course?

 

[SOC]

@SOC How long did it take you to train yourself? I'm a few months in, yet still can't get the hang of it. On really good days I stay well below my estimated AT, on really bad crash days my HR climbs very rapidly and I can't do much of anything but hit the bed. And the remainder of days are somewhere in between, but I can't yet predict.

Is this due to my POTS not being adequately treated? Or is this just par for the ME/CFS course?

If I had to guess, I'd say it likely is your POTS, but it's just a guess. I think it's a big help to get the OI under control. Are you checking your morning pulse pressure to see that you are staying sufficiently hydrated? If my morning pulse pressure is low, my day usually doesn't go well and I can't do what I do on my routine days. Fortunately, those days are very rare now because I'm very careful about staying on my OI protocol.

I don't have all the variability now that we've done a lot of work on the viruses and got the OI under control. Early on I had many days where all I could do was stay in bed. If you're still in the early days of fighting pathogens, you may have to rest more than you are.

It's possible you are still doing more than your body can handle routinely. What I can do, and what I can do routinely are two different beasts. For example, I can do a little shopping in a storefront shop without PEMing myself, but I can't do that every day.

My self-training not to go over my AT took 3-6 months. Learning what I could do routinely took a lot longer. I started with practically nothing since I was bedbound, and started adding in necessary daily activities one or two at a time -- dressing, making an easy meal. I'd stay with that for a couple of weeks and if I didn't have a bad day, I'd add in another necessary activity, wait a couple weeks... you get the picture. Eventually I got a picture of what my routine day should look like. Then I could add irregular activities here and there, making sure none of them took me over my AT.

My routine sometimes annoys my hubby because I can't afford to be flexible in many areas. For example, I've learned I can do one load of laundry a day a little at a time. If I try to do several loads in one day, then I can't do other things in my routine -- I've used too much energy I guess. I've learned that I can't reliably cook a meal at dinnertime, but I can reliably do it in parts earlier in the day and warm it up at dinner time. Sometimes, maybe even a lot of the time, I can cook at dinnertime, but I can't do it reliably, so I backed off to a way I can do it reliably. That way it's not a guessing game every day whether I'm going to be able to do this or that.

If I keep my routine down to what I know I can do reliably, life goes smoothly and I have some extra resources to do extras when I feel up to it. If I try to do everything I can do every day, I eventually wear myself down and have bad days.

 

[NK17]

Amazing, clear, thoughtful and full of practical advice post @SOC.

I'm in awe of your scientific discipline in facing the Beast aka ME.

I'll have to print it and place it next to my bed.

You're a mine of useful tips

 

[SDSue]

@SOC Best "Summary of Pacing" Award goes to you

I'm still trying to do too much when I have a "good" day. I need a babysitter lol. And I'd never thought to check pulse pressure in the am. I currently drink 24 ounces of water with a Nuun at bedtime and another of the same upon awakening, so I assume I have my fluids correct at those two times? (much more also throughout the day - it's work!!)

Thanks.

 

[alex3619]

A little anecdote about how long it takes someone with ME to learn things.

I am replaying an old computer game I have played off and on for 8 years now (Gothic 3). There is a small herb that grows in isolation that is valuable. For many years I forget even the remote location of it. Then for years I knew the general area, but had to spend even twenty minutes looking for it. The last day or so my computer character ran right up to it, I knew the exact location. It only took 8 years.

Its always good to be kind to yourself and remember that it takes time. We forget most of what we learn, but that doesn't stop us slowly working on it for as long as it takes.

 

[SOC]

Amazing, clear, thoughtful and full of practical advice post @SOC.

I'm in awe of your scientific discipline in facing the Beast aka ME.

I'll have to print it and place it next to my bed.

You're a mine of useful tips

@SOC Best "Summary of Pacing" Award goes to you

I'm still trying to do too much when I have a "good" day. I need a babysitter lol. And I'd never thought to check pulse pressure in the am. I currently drink 24 ounces of water with a Nuun at bedtime and another of the same upon awakening, so I assume I have my fluids correct at those two times? (much more also throughout the day - it's work!!)

Thanks.

Aw gee, thanks guys! It's nice to feel useful.

Fortunately, scientific discipline comes easy for me -- years of training as a researcher. The emotional discipline, now that's another story. All too often I just don't want (insert whiny voice here) to do what it takes to scratch and scrabble for every extra little ounce of functionality. Then I remember that it's do what it takes or don't get better, and I REALLY don't want to not get better, or even get worse. So, what's worse -- doing what I have to or living "like this" (whatever that currently is) for the rest of my life. All of sudden it becomes easier to do what I have to.

@SDSue, I know what you mean about the babysitter. It takes an enormous amount of self discipline to NOT do the things I want to, but know my body can't handle. I sometimes wish there was a mom around to make me do what I'm supposed to so that I wouldn't have to think about it myself.
24 ounces is about the same amount of fluid I drink bedtime and morning, but it wasn't doing me any good until I got up to the right Florinef dose. It doesn't do any good to drink it if your kidneys are just going to take too much of it out of your blood again.

 

[SDSue]

@SOC I'm going to check with my nephrologist to see if we can't sneak in a little florinef now that I'm on midodrine. It's worth a shot!

What's odd is that I don't get up in the night to use the restroom. You'd think with that amount of fluid, I would. Odd.

 

[SDSue]

A little anecdote about how long it takes someone with ME to learn things.

I am replaying an old computer game I have played off and on for 8 years now (Gothic 3). There is a small herb that grows in isolation that is valuable. For many years I forget even the remote location of it. Then for years I knew the general area, but had to spend even twenty minutes looking for it. The last day or so my computer character ran right up to it, I knew the exact location. It only took 8 years.

Its always good to be kind to yourself and remember that it takes time. We forget most of what we learn, but that doesn't stop us slowly working on it for as long as it takes.

Good point, @alex3619. Learning takes exponentially longer than it did prior to illness. What previously took one pass can now take countless.

I am currently trying to follow a TV series, but to do so means that I watch each episode 3 or 4 times before the new one comes on a week later. And even then…… lol. Let's just say I'm easily entertained these days.

Learning comes with a special delight now. When I do remember something I'm surprised and feel accomplished, especially when I remember to celebrate what remains rather than grieve what is lost - and that, my friend, is a process!

 

[SDSue]

Update: 2 days without my HR monitor (broken) and I crashed hard, with scary tachycardia and high BP along with the usual. Worst crash since using the monitor.

I could feel that I was doing too much, but without the warning from the monitor, I kept going (because apparently I'm dim-witted when it comes to learning how to pace - see above lol)

Turns out, the monitor truly is a useful tool for me and does help me regulate my pacing better…… and that's really encouraging to know.

I may kiss the UPS man's feet when he arrives with my new monitor today. (sarcasm)

 

[Valentijn]

I may kiss the UPS man's feet when he arrives with my new monitor today. (sarcasm)

Due to falling over after exceeding your limits?

 

[Mij]

@SOC I'm printing out your post about pacing yourself. I've got my own pacing routine tattoed in my brain but I want to show it to my sister when she comes to visit. She thinks I"m the only one who prepares my day or even thinks like this I get readfy at 8am to go to a hair appointment with her at 4pm She starts to laugh because it's just too bizarre for people to understand this this whole PEM thing.

I've taken it up a notch though because I've made suggestion to her to pace herself. Perhaps it's just too ingrained in my brain at this point

 

[SDSue]

Here we go again!

After many months without my HR monitor (3rd failed unit and I got fed up) I finally broke down and ordered another. It arrived today. It's now clear why I've been in a bad way for the past 6+ weeks.

My resting HR is 15 beats higher than normal and I reach my AT just putting my feet on the floor. No wonder i'm a mess. So it's back to the drawing board. One step forward and two steps back.

Can't use midodrine - BP skyrockets. Can't use florinef - kidney issues worsen. Can't use beta blockers - extreme weakness. Can't use SSRI's - bad side effects.

What is left? Is anyone using clonidine successfully?

 

[Sushi]

What is left? Is anyone using clonidine successfully?

I've heard of some patients having success with clonidine. Again, different autonomic profiles respond differently. For me it was awful, but then I don't have POTS but NMH.

It is worth a try, I'd think. You'll know quickly how you respond.

Sushi

 

[Gingergrrl]

Can't use beta blockers - extreme weakness.

@SDSue Is it extreme weakness regardless which beta blocker you try and even at a super low dose? I know we discussed this before but I do not remember the answer.

 

[SDSue]

I was bad on propranolol 10 mg so switched to atenolol 12.5. Still extremely weak so I went off that too.

Maybe I need to try micro doses? Also, I would like to try nebulized magnesium as i understand that can help?

 

[Gingergrrl]

@SDSue I have never taken Propranolol and not sure how it doses. I take 6.25 Atenolol AM and 12.5 PM which is a very tiny dose so it sounds like if you didn't tolerate the 12.5 mg then it probably isn't for you.

There are still many other beta blockers out there but not sure if your doctor would rule out this whole class of meds since you have already tried two?

I do the magnesium by nebulizer which I learned about from @zzz and is a protocol from Dr. Myhill. Either of us could tell you more about it if you are interested. If you google Sarah Myhill and Magnesium nebulizer you should find her instructions.

 

[MeSci]

I've heard of some patients having success with clonidine. Again, different autonomic profiles respond differently. For me it was awful, but then I don't have POTS but NMH.

It is worth a try, I'd think. You'll know quickly how you respond.

Sushi

@taniaaust1 takes, or has taken, clonidine - maybe she can advise.

Sorry you're struggling so much. Hope you find something that suits you, @SDSue .

 

[Debbie23]

This may not be helpful if a much lower dose makes you feel poorly but I'm on propranolol 40mg once a day, twice if needed, I've just had a chat with my GP about this as I'm having lots of racing heart etc. to do with Orthostatic problems being especially bad at the minute. I need an ECG to confirm its 'just' that as recently I've been having bad chest pains at times as well, which I'm pretty sure Is OI, because it only happens in bad days and when I've done too much moving around, or moved too quickly. I've been told I can up it twice a day on days when I'm very bad, I.e. Bad palpitations, heart racing and refusing to slow down no matter how long I lay flatter and still etc. My pulse went over thirty bpm higher after going in my wheelchair a few metres and immediately getting back in bed, it stayed upwards like that for a good hour or more while it felt fluttery etc. While it goes right up like today when I've taken propranolol the night before, doing the poor man's tilt table as much as I can,mi can't stand for very long at all to do it properly, it tends to stabilise when I sit/ lay back down much, much quicker.

I've been told I can up my dose on bad days to twice, that but my GP wants me to monitor myself very closely because I have asthma and that can aggravate it, so if my asthma worsens or I get breathing troubles worse than I get with my ME I need to stop it immediately. But I'm experimenting and I feel better on propranolol than off it. In the past I've had times when I've been very bad at remembering to take medications and I definitely get worse off it. My BP is typically normal when I've not been exerting or moving around a lot, even when I'm not taking it daily, but when I don't take it I've definitely noticed that my OI is less controlled and my pulse tends to shoot up and stay elevated for a long time afterwards if I've not been taking it. My BP and pulse still climb rapidly when moving etc, when taking it at least once daily but they don't take so long to drop back down and stabilise when I can sit back down, when I'm on it. It's like my body finds it easier to regulate BP and pulse when I'm taking it, I've also noticed the little fluttering heart rate symbol on the BP monitor doesn't come up when I'm on it as well, I was getting that a lot when I wasn't taking it daily, which I suppose means it's working.

Bear in mind however that I get orthostatic hypertension, which I Strongly suspected but wasn't totally sure till the other day when I had a chat another that with my gp but now I am. So if your BP falls rather than rising when you stand/ move etc. It might not work, or work as well. But yeah I feel better for propranolol at least once a day.

I've heard other people say they felt really sleepy, lethargic and drowsy for about a week of taking propranolol but then that stopped and they felt fine on it after that. it wasn't necessarily people with ME though and I genuinely can't remember if it affected me like that or not, or how it may have worsened ME symptoms at the time because I started taking it years ago for migraine. I didn't know anything about OI at the time, it was just to prevent migraine. I also tend to take my before bed so I suppose I would potentially sleep through any feeling poorly on it! The days when I need to take it in the day I'm generally feeling so rough that I probably wouldn't notice a worsening of symptoms I could associate with the propranolol. Sorry that's all not very helpful is it?! I hope you can find what works for you.

I'm interested in what everyone says about HR monitoring being so helpful. I had bought a mio, but I had to send it back. I really liked it though and the company were lovely in answering my questions. But this time I'm trying the new fitbit as I struggled with the buttons a bit and the band wasn't quite big enough on the mio as well as my one having a fault which meant it needed to go back anyway, I have big wrists and struggle with dexterity. I'm hoping the fitbit will be a better choice for me personally.

 

[SDSue]

@taniaaust1 takes, or has taken, clonidine - maybe she can advise.

Sorry you're struggling so much. Hope you find something that suits you, @SDSue .

Thanks MeSci! Le'ts double team @taniaaust1 so she'll weigh in on Clonidine sooner.

I'm interested in what everyone says about HR monitoring being so helpful. I had bought a mio, but I had to send it back. I really liked it though and the company were lovely in answering my questions. But this time I'm trying the new fitbit as I struggled with the buttons a bit and the band wasn't quite big enough on the mio as well as my one having a fault which meant it needed to go back anyway, I have big wrists and struggle with dexterity. I'm hoping the fitbit will be a better choice for me personally.

Thanks for sharing your OI story. You sound much like me. Because I now struggle with hyPERtension, we've had to change my game plan. My heart rate and BP were beautiful on beta blockers, but the weakness is profound. I worry that it has become long-term as I've been off the beta for a while and am still so weak it's hard to get out of a chair or open a jar. Perhaps the weakness was not due to the beta? It's sooooo confusing!

As for HR monitors, I tried 3. I finally settled into this one, which works well and comes at a reasonable price. It was previously around $100 but has come down significantly to $59. Does the FitBit give continual HR readings and sound an alarm when you go over your AT? (FitBit is certainly better looking than this Polar lol)

 

[Debbie23]

I get weakness as well. It's fluctuating, especially in my hands and arms. But when having an especially bad time like after I had surgery last year, my legs just wouldn't hold me at all for many weeks after it. I struggle to stand at all, even when having good days, for very long but it was back to using slide boards for a bit rather than standing to transfer because my legs just wouldn't support my weight at all over those few weeks. They would just buckle if I tried. That was scary and distressing, mercifully it's passed a bit now. I get problems standing when I've had to have a big few days, my legs will suddenly 'crumple' under me without warning, puts me at real risk of falling if I'm not very conscious of it. But that tends to be when I'm having a very bad day or have really, really over exerted. I use a wheelchair at all times even in home though, I would be at definite risk of falling and over exerting if I didn't, so the only time I have to make judgements about this is when I'm transferring, if that makes sense.

As I said I honestly cannot remember how my propranolol affected me when I first started taking it, whether it caused extra symptoms or not I don't recall it was so long ago, but I definitely think that I don't feel any better in myself in terms of symptoms like fatigue and weakness for having NOT taken it, on the days I forget etc. if that makes sense. For example when I had that profound weakness of literally not having my legs hold me, I wasn't taking my propranolol in any disciplined manner everyday. I allowed medication to slide because I was just so poorly after the op. I've invested a small amount in an app to help prompt me to take medications and I've been taking it daily since then and now, unless I was to significantly over do it, while I couldn't stand for very long at all, I can stand to transfer to my wheelchair from bed etc. So I don't think my Personal weakness at that time was due to the propranolol so much as the stress of general anaesthetic and surgery on my body and being just so poorly with my ME.

My GP has told me to be conscious of how I feel on it over the next few weeks and months, especially if I need to up the dose so I'll see how I go. I do hope you can find an answer that works for you. Obviously I don't know it's not propranolol or beta blockers causing these problems in your case, but for me I don't think that it's down to propranolol when I loose dexterity and grip and loose the ability to stand even to transfer etc. I definitely feel better and have my OI problems in better control the next day when I remember to take it each night. I do hope you can find the answer that works for you.

In terms of the fitbit, provided you get the new ones with the HR monitor in built, it gives 24/7 readings. I'm not sure if it sounds an alarm if you exceed your set HR zone, I do know you can set a custom zone though and see it at any time on the display, from what I've seen on various youtube reviews. And I'm hoping if it's not got that feature that they will add it in a firmware update later on, because it definitely has the ability to vibrate an alarm at you to wake you etc. The mio ones definitely are supposed to play an alarm at you when you exceed the set heart rate. I just couldn't get mine to work, the LEDs changed colours but the alarm wouldn't play despite being switched on. I have to say their customer service is very good from what I experienced, they very patiently spent ages trying to get it to work for me and in the end just said I'd been unlucky enough to get s flawed unit and to return it. I was impressed with them and the unit, it just wasn't the right one for me. I decided to switch to fitbit because I decided that if I was going to have to be aware of watching the screen if I couldn't get it to chime at me, I'd rather have the Fitbit which also tracks sleep. I would have sacrificed sleep tracking if everything else had been right, it just wasn't for me. Again not a criticism of the unit, it just wasn't he right fit for me personally.