What do you do when you've been feeling better, then have a major flare up?

[MTRJ75]

Haven't been around much because I've been feeling better in recent months (and also because I've been preoccupied with COVID), but am not sure exactly what the cause for the improvement is (and if I had, I'd make sure to let you all know). That's not to say I've been feeling normal, just not nearly as bad. In fact, I'd call the last two-three month period my best since my initial POTS/dysautonomia attack a couple of years ago.  I was even considering starting light workouts next week. 

I've still been dealing with muscle pain (severe in the mornings) and stiffness. I've begun stretching a more lately, then yesterday it was beautiful out, so I was outside walking around with the dog for quite a while. Came in, started dinner, then I felt a lot of muscle pain and numbness. Put off cleaning the yard for the lawn guy until this afternoon. Got some help with dinner. So I felt this coming on yesterday, but still had to clean the yard before the guy came to cut the lawn today. Did that, ate a bit of lunch, then WHAM!

Severe muscle burning and aches, burning & sweating in the chest and stomach area, but freezing arms and legs. Nausea and a digestive system that just wants to empty out all day long. The really terrifying thing has been that even after lying down for a couple of hours, just sitting up on the couch is wrecking my entire nervous system again. 

This is incredibly frustrating to go from a feeling of making some progress to right back to all my beginning symptoms. I'm guessing I need fluids, but I refuse an ER trip at this time. 

What else can I do for myself? What might my body be missing? 

Do those with some experience with periods of some recovery think this can be a simple blip because whenever I've had these symptoms in the past, it's been a couple of weeks of not even being able to sit up for long or eat much. I can't be knocked on my butt again for an extended period. My mother had been helping me out a lot, but hasn't been feeling well lately herself. I'm supposed to be helping my parents out at this point in life, not the other way around anymore. 

There is some good news I've been hanging onto here. My heart rate doesn't seem that out of whack with only some PVCs when my body feels like it's really heating up. I've had to take less than a handful of beta blockers since February. 

 

[Pistol]

@MTRJ75 - I am so sorry!!! This is absolutely typical for POTS! I have been so well that I honestly thought I was cured - just to get knocked back down to bedrest again within a matter of one day! It sounds to me that it probably was the fact that you could tell it was coming but had to clean the yard anyway. For me something like that is the straw that breaks the camels back. Yes - it IS frustrating, every time. And for me IV fluids are the only thing that helps me get over it really quick, so if you CAN get fluids I would get them. Otherwise just do the usual - rest and careful exercise and do not push through. 

2 hours ago, MTRJ75 said:

What might my body be missing? 

It could simply be temperature changes and barometric pressure fluctuations as we are going into summer. Also the fact that in the warmer temps we need more fluid when being active and we often do not accommodate for that. Allergies do it to me, especially when doing outside chores ( histamine is a vasodilator ). Freezing arms and legs along with diarrhea are included in my flares as well and come from excess adrenaline. As I said - IV fluids fix that for me. But I can totally understand that you are concerned about having to go to a facility to receive them, risking COVID. I am sorry you are so unwell and I hope you can rest until it's blown over!!!!

[MTRJ75]

Thank you @Pistol

I've never gotten to the point where the words cured or even fully recovered have entered my mind, but I have had many delusions of more normal functioning recently. It's just such a smash in the face to get hit like this again (not that there's ever a good time). 

It's good to hear that it doesn't always drag you all the way back to the beginning. I'm now at the point where i don't think I have to worry about fluids immediately, although it's still somewhat coming and going. 

I think being outside and slightly active in the sun the last two days did it. It's actually been in the 70's here without humidity, where as the few days before that hotter and humid, so I mostly stayed inside or in the shade. Add to all that, I decided to take a shower this afternoon too since i was already feeling kinda bad. Figured I'd make it one bad day because showers usually inhibit my ability to physically function even further for a couple of hours. Figured if I get all out of the way today, I'd be able to do a bit more tomorrow.

I guess I overloaded and instead of suffering some of the inconveniences, I got full whammied. 

The adrenaline thing again makes sense. That's exactly what it feels like is going on in my digestive system (fight or flight). (Edit: It's not even a diarrhea situation, fairly normal, just a constant emptying need, so at least I'm not losing additional fluids I guess.) Wonder if it has to do with the inability to sit up without muscle weakness/shaking too. 

We had a conversation a while back about the fluids too when I had mentioned the doctor was hesitant about doing that while I was in the hospital in December. We talked about the potential for veins to collapse.  I wonder how often one could safely get IV fluids without concern for that complication. Say I only needed it once every 4-6 months? At what frequency would something like that become a concern? 

[Pistol]

7 hours ago, MTRJ75 said:

I wonder how often one could safely get IV fluids without concern for that complication. Say I only needed it once every 4-6 months? At what frequency would something like that become a concern? 

@MTRJ75 - Before getting a port for fluids I had a prescription to get 1 L fluids over 4-6 hours weekly as needed. When I would get bad I would go to an infusion center and get them ( needed to be scheduled the day before ). Sometimes I needed them once a week for several weeks. My sister gets them weekly for the past year and her veins are getting bad. The surgeon that inserted my port said that anytime you need IV access for IV medication weekly or more often a port is justified, but that is always a matter of risk vs benefit. If you get IV fluids only in flares - and that is not every month or so - you should be fine. Many people get stuck for lab work every week and their veins are fine. So I don't think you need to worry about your veins getting bad if you get fluids even every couple of weeks. 

I know how much my POTS and my ability to live without the fear of passing out or taking seizures have improved since getting IV fluids weekly and whenever needed through my port. I am not advocating getting a port - just that IV fluids help me ( and many ) to quickly get over flares. So if you are in a bad POTS spell and have the ability to get fluids then I would do it as soon as possible. I not only improve quickly with them but actually feel better than before every time I get a bag. 

[MTRJ75]

That's good to know. It's likely I'd benefit from weekly fluids. Who knows, perhaps even be close to normal, but I don't feel like it's a dire need nearly that frequently. Not that it matters, because as you said, with the COVID, and then the difficulty of convincing the hospital doctors that fluids are what I need, it's not something I can just pop in and get. Although, I think I'm going to bring this up with the neuro & cardio and ask if I can just have the hospital contact them next time I'm in need. 

Was also wondering last night, if adrenaline is a major culprit, as suspected, why my heart rate wasn't elevated too much either.  Why would the fluids help with adrenaline too? 

I feel like I'm doing slightly better today. Just getting over the morning pain, which was significant today. But I have that noticeable apprehension of crashing if I attempt to do anything or even sit up too long today. It's a feeling I haven't had in many months, which I have been very grateful for. Flares like yesterday and PVCs are really the two anxiety causers with this condition. 

[Pistol]

3 hours ago, MTRJ75 said:

Why would the fluids help with adrenaline too? 

When my adrenaline rises it causes vasoconstriction, this causes symptoms that cause more adrenaline which causes more vasoconstriction … the IV fluids keep the vessels dilated and also maintain blood volume - both of these measures prevent the release of adrenaline in an excessive way. 

[MTRJ75]

Thanks again Pistol. 

I wish my actual doctors would explain things like this. I find it greatly benefits me to know what's going on inside my body both in terms of being able to find solutions and to ease concerns. 

[Pistol]

3 hours ago, MTRJ75 said:

I wish my actual doctors would explain things like this.

Well - I think that they probably don't know. I am like you in the way that I need to understand what is going on with me, or else I feel out of control ( literally! 😉) I researched my symptoms and dysautonomia in general for years until I understood the ins and outs. When I did not understand something I would ask my specialist or study the physiology and anatomy until a symptom made sense to me. This illness really taught me how to be in charge of my own healthcare, the importance of informing ourselves about our symptoms and being able to make informed decisions about our treatments. Since so many physicians are either uninformed or misinformed about POTS we HAVE to know about it, simply to protect ourselves from doctors in the wrong!!!!!

[MTRJ75]

Yesterday was a bit better. Was hoping to be back to my new normal for the last few months today. Seemed like it might be the case, but I got whammied again, actually while I was on the phone with the disability lawyer. I was sweating profusely with muscle weakness and shaking, could barely hold the phone up and answer the questions. Barely got through without excusing myself to use the bathroom. 

All I did today was sit out in the back with the dog for about 10-15 minutes and make myself a berry & kale shake. 

[MTRJ75]

Thinking out loud here as the levels of pain and dysfunction remain intolerable this week and can't get to the neuro for a couple of weeks:  

Morning pain has been excruciating (arms & legs) last few days. Can we explain some of this by vasoconstriction and too much adrenaline during the night? Certainly dehydrated completely in the morning. 

Take Sjogren's meds, wait another 20-30 minutes to get out of bed and take CBD oil + turmeric + electrolytes. That's been the routing for over a couple of years now, give or take a supplement or two. 

I've noticed the last few months when feeling better, I've had an appetite for the first time when I wake up or even in the early afternoon for years. I've even gained more weight than I've wanted to. Not the last week. Nausea and then if I do eat, my digestive system immediately wants to empty all day long. When I feel the "surges" it's the first thing my body wants to do. (Adrenaline, stuck in fight or flight or whatever?)

My digestive system has even been making the squishy, gurgly noises all day long along (all the way through, top to bottom) with the burning feeling throughout the last week (especially after eating anything substantial). Could that be effect of adrenaline and not enough blood flow/hydration? 

However, about an hour after getting out of bed, urine is very clear, so does that mean hydration is not the problem any longer? If the continued cramping (feels like every muscle in my body has burning last few days all day long, especially my arms) and nervous system mis-directs (sweating to freezing, shaking, digestive issues) can't be helped with hydration, then what? 

There has been a weather change. It was really hot and humid, but the day all this started was the day it cooled off 15-20 degrees (from near 90 to near 70) and has been so every since with more wind. I thought the heat was intolerable, but could this weather actually be causing something worse? Maybe allergies are making messing with my system worse than usual (as mentioned somewhere above a few days back). October - December have been my worse months the last two years. The weather this week has felt like mid-fall, but also like early spring and didn't bother me March-May. 

NEUROLOGIST: says that salt will complicate dehydration because it pulls water away, so this won't help me immediately in the morning at least. When's the best time to take the salt tablets? Not when I feel like the moisture is being sucked out of me? (Can't think of a better way to describe this feeling.)

CARDIOLOGIST: believes the Sjogren's medication is contributing to neurological issues, but I can't exist without it. The dryness and dehydration without the meds is unbearable and would probably cause additional issues. 

ENDOCRINOLOGIST: I have adrenal nodules, which have been known about and tested since 2013. She assures me they aren't excreting anything they shouldn't. I've asked her about these inappropriate adrenaline surges, but she has no answer for it or any idea what additional testing can be done. 

Mentally, I'm just trying to separate "flare" and something I will recover from, rather than something that might be progressive or more immediately nefarious.  Of course, when feeling your worst, that's when you mind goes to the worst places. 

I've also mentioned in the last week that I believe in neuroplasticity and that you can use your brain to change your body, but how can I mentally change body chemistry, even if it is the brain sending out these erroneous signals? 

I don't necessarily expect additional answers, but I wanted to write up something I can come back to for my next doctor's appointment. I even called Dr. Tullo's office yesterday to see if they are doing telephone appointments for new patients. Hopeful and waiting to hear back. 

[MTRJ75]

Thought I was going to be posting some encouraging news tonight. Felt better over the weekend, but I refused to do much, just resting on the couch. Decrease in morning pain has been a major positive. 

Attempted to do some light cleaning around the house, but stopped when I started feeling...not right? (tough feeling to describe). A few hours later, I was feeling closer to my normal of the last few months. Once the yard was covered in shade, I went out with the dog and played with him for a few minutes. Came in and about a half hour later, I realize that I'm still drenched in sweat and my heart is skipping. I'm about 130-150 standing/110-120 sitting and 100-110 lying down. 

All the other stuff going on with this new flare since it started, this is the first time tachycardia has been involved, so now I've gotten back a little of everything. Took a beta blocker for only the second or third time in months almost an hour ago. And some electrolytes. Heart rate still hovering between 95-105 while reclining on the couch. 

Frustrating. Whenever I've taken it the last few months, which hasn't been often because I haven't felt like it was out of control, it's been below 90 while seated, generally around 80. Maybe I've had other elevated events and just not noticed it, but considering that I can still usually feel my heart pounding all the time, I don't think so. 

I'm gonna need this thread to remind me what to tell the doctor about because the symptoms have been so inconsistent. Nothing new that I haven't dealt with in the past couple of years, but almost every day has brought something different. 

[Pistol]

@MTRJ75 - do you only take the beta blocker when needed? I am surprised b/c it is not usually prescribed like that. In my case I need it every day ( and have been on it for years ) and if I would take it only as needed my ANS would never find balance. Maybe if you would take it daily ( at least while the flare lasts ) it could help you improve quicker?

[MTRJ75]

@Pistol There had been a lot of trial and error with beta blockers. I always felt they were causing just as much trouble as they were solving (increasing exhaustion along with other meds & making Sjogren's symptoms of dryness worse). Eventually we settled on 60 mg Propanolol since there was no difference in side effects with any of them and then I asked about lowering the dosage. She gave me a 10 mg prescription and I would take them 2-3 times per day, then more recently I had realized that I wasn't even taking them in the evening with no real changes most times. And like I said, last few months, I haven't really felt the need to lower my heart rate more than a handful of times. I guess I could ask to go back on the 60 mg daily or increase the 10 mgs to 2-3x daily if this continues, but meds always seem to cause at least as many problems as they solve with me. 

I don't know what I did different tonight. I waited till it cooled down and stayed in the shade. Maybe because I ate dinner right after coming in? My system couldn't handle digestion + any other processes at the same time. It was really weird just sitting there a half hour after coming in and sitting down being drenched in sweat with my heart racing on the couch like I was exerting myself even more than when I was outside. 

I've found this happening often when I've done anything physically exertive the last couple years. I'd end up sweating heavily with a racing heart long after the activity, but it hadn't happened the last few times. A couple of weeks ago I had to carry a table and some other things across the lawn to a dumpster and I was fine except for some heavy breathing for a few minutes afterward. I was so encouraged. I don't know what happened. 

[Pistol]

9 hours ago, MTRJ75 said:

. I always felt they were causing just as much trouble as they were solving (increasing exhaustion along with other meds

Beta blockers do cause tiredness in the first few weeks, this is normal and usually improves after a few weeks. It is recommended to take them daily as prescribed in order to have a steady level in the system. Remember - we are fighting an IMBALANCE - so skipping doses will cause more imbalance. Especially with medication sensitivities it is important to take all medications as prescribed. Believe me - i have done my fair share of self-experimentation and always found that meds work best for me if taken regularly. My doc did tell me to take an extra BB when my HR races from a flare but this rarely is needed. 

 

11 hours ago, MTRJ75 said:

Attempted to do some light cleaning around the house, but stopped when I started feeling...not right? (tough feeling to describe). A few hours later, I was feeling closer to my normal of the last few months.

Good job of listening to the signals your body was giving you. I am no saint and push myself beyond these signals at times still ( some things just can't wait for an impatient person ) but generally speaking I have learned that stopping when prompted by my body will prevent a few days of problems. I call it the " Stop, drop and rest" maneuver 🤣

[MTRJ75]

I was taking them regularly (60 mg) for several months, maybe even a year, until making the change. 

I wish it were as easy as being able to listen to my body and do what it demands. I end up having to fight with the family because I don't push through and fight it. I too easily give up. They all have problems they fight through, so why can't I? 

I give. I'm putting too much of a burden on them, especially my mother, who does have her own problems. This needs to be done on my own without bothering anybody else anymore. I can't get to the best doctors. I called the only specialist in the state last week (Dr Tullo), but can't see him because I can't travel and he's not doing new patient phone visits. I'm still fighting for disability, which would only be SSI because I now don't have enough work credits for the last ten years (missed by just 2). It won't be enough to live on. It's just a feeling of such helplessness and frustration on top of the anxiety the symptoms can cause at their worst. 

That's the end of today's rant. 

I'm assuming that having my heart rate run between 120-150 for quite a long time isn't as dangerous as it feels like it should be because I was once sent home from the ER even though my rate jumped to 130 every time I stood up. This is actually a good question I guess. 

Someone else recently posted about elevated heart rate after eating & I really think that's what might be going on here. My biggest symptom flares since this begin have been not too long after eating. Blood pooling. My system can't handle digestion anymore? What is one supposed to do about that? 

[MTRJ75]

7 hours ago, Pistol said:

Beta blockers do cause tiredness in the first few weeks, this is normal and usually improves after a few weeks. It is recommended to take them daily as prescribed in order to have a steady level in the system. Remember - we are fighting an IMBALANCE - so skipping doses will cause more imbalance. Especially with medication sensitivities it is important to take all medications as prescribed. Believe me - i have done my fair share of self-experimentation and always found that meds work best for me if taken regularly. My doc did tell me to take an extra BB when my HR races from a flare but this rarely is needed. 

 

 

I just totally skipped over part of this in my mind the first time I read this. Is this what they do though? No doctor has ever explained it to me like this. I know they're used for tremors (thought it didn't help in my case), but I've only been told that they block adrenaline to the heart, lowering heart rate and blood pressure. Doctors have never told me they have a neurological balancing effect overall. 

I've actually been asking every doctor for a trial of LDN for years (unsuccessfully) because, as I understand it, it balances the nervous system. 

[Pistol]

15 hours ago, MTRJ75 said:

I know they're used for tremors (thought it didn't help in my case), but I've only been told that they block adrenaline to the heart, lowering heart rate and blood pressure. Doctors have never told me they have a neurological balancing effect overall. 

The explanation your doctors gave you is correct. Betablockers work in the ANS by blocking adrenaline signals to Beta-adrenergic receptors and they reduce the stress response, therefore lowering HR and BP and calming overexcited electrical activity in the heart ( PVC's ). Read more here:

https://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/beta-blockers/art-20044522

For people suffering from an ANS IMBALANCE, such as POTS, it is very important to take these meds as directed - which is usually daily or twice daily, depending on the medication. They work directly on the mechanisms that cause many of our problems, and therefore we need a constant level of them in order to create the balance within our ANS that they are meant to address. You might want to talk to your doctor about taking them only once in a while. In most people it takes a few weeks before the side effects of feeling tired go away.

[MTRJ75]

After realizing that I wasn't sweating the few minutes I was outside yesterday, even though it was very hot, I feel like I'm getting closer and closer to understanding what happened the other night. 

I'm thinking perhaps I was not sweating as I should have (I sweat plenty, but rarely when it's appropriate) while playing with the dog outside and then I also came in and ate something hot. My body never had a chance to cool itself down as it's supposed to. So my heart rate spiked and then I started sweating.

I'm actually wondering now if I was close to heat stroke. I'll have to be careful and vigilant when going outside when it's over 80 degrees now.