Heat has brought on severe muscle aches/exhaustion, near constant sweating

[Pistol]

15 hours ago, JennKay said:

The only thought I had was that when walking around my leg muscles compensate for the poor vascular response. However, when I sit down, my leg muscles are no longer contributing and the blood pools in my pelvis.

@JennKay - I am in the same n-boat, wlaking short distances are OK, but sitting or standing will bring on the buzzing pressure in my legs and head heaviness with brain fog, so I have to sit with them elevated. Your theory sounds probable to me, since I too figured that there is blood pooling going on that pulls the blood from the brain and settles it in the legs. 

[JennKay]

@Pistol -- To add to that theory, I have been wearing a Garmin watch lately and more than once I have noticed that my pulse sometimes drops to the low 50s when I start sitting. This is often, but not always, followed by a round of PVCs. I think this fits the idea that upon sitting the blood just isn't getting back up to the heart - hence the drop in pulse and batch of PVCs. I'm thinking the PVCs are a consequence of the body trying to compensate for the sudden drop in heart rate...maybe a sharp increase/dump of adrenaline/noradrenaline to try and get things going again by constriction and speeding up the pulse?... I'm not sure there is much we can do about this except keeping up with fluids and wearing compression garments.

[MikeO]

@JennKay relying just on heart rates IMO is not enough. I would really stress getting blood pressure readings (how do you know that your bp dropped without numbers) to go along with your symptoms along with some lifestyle notes.

Here are some of my notes i just sent off to my team.

[MTRJ75]

I find that wearing these devices only heightens my stress levels. If I'm not feeling it, I don't immediately worry about it. It's helped. 

In other news...

Mama mia!!

[JennKay]

@MikeO - True, I should try to get BP measurements at the same time. I noticed you get lightheaded when your BP drops to around 100/60-ish. That is me on a regular basis!!

@MTRJ75 - we may have you beat down here in south TX! It is hot even for us...

[MikeO]

1 hour ago, MTRJ75 said:

In other news...

Mama mia!!

Glad to hear you are handling the heat well.

[MikeO]

16 hours ago, JennKay said:

True, I should try to get BP measurements at the same time. I noticed you get lightheaded when your BP drops to around 100/60-ish. That is me on a regular basis!!

the Low diastolics and little change in heart rate is what gets to me. (feeling a bit neurogenic lately) I suspect we will trial Mestition (pyridostigmine) again or make a drug change 

[MikeO]

21 minutes ago, DysautonmiaMatt said:

Last night my HR was in mid 50s before eating dinner,  Ate dinner and shortly after PVCs started. So annoying as they are not comfortable. 

Sorry to hear you had some upticks in PVC's. Even though they can be annoying for the most part they are benign. Beta-Blockers do help but from my experience are not the cure-all.

Anxiety can also spark off some of these. Just food for thought. 

[JennKay]

@DysautonmiaMatt -- sorry to hear about your episode!! I ABSOLUTELY hate when I'm in bigeminy, trigeminy, whatever-iny...nothing is as upsetting as frequent, repetitive PVCs. I can deal with all my other symptoms, but the PVCs are the most troubling to me.

Have you tried a beta blocker before? If so, how was your previous experience? I've tried metoprolol and atenolol, both beta1 selective drugs. I didn't do very well on either, but metoprolol was particularly bad for me. I didn't start propranolol until April of this year after, my long QT episode. It helps with the PVCs, but sometimes they just keep happening anyway. I've also been offered corlanor, which I've heard may help with ectopics. Can you ask your primary care to start you on propranolol? I take half a normal dose b/c I'm so sensitive to the associated drop in BP. 

[JennKay]

@DysautonmiaMatt -- Makes sense that it would be related to the Lexapro then. I hate trying new things since they can make things get out of balance, but I guess we have to try b/c we never know if it will help until we give it a go! Hopefully they subside soon. Mine seem to get triggered by hormonal changes. When they do get set off, sometimes I have to wait another 2 weeks for my hormones to change again. Oh the joys of being a woman! 

It is interesting that yours were set off by eating. My initial episode of PVCs that occurred about a year ago also started when I sat down dinner. I didn't know this until recently, but apparently eating is a big stress on our bodies. See here for how it impacts heart rate variability (HRV): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5882295/

Anyway, I just started wearing a smart watch to help me track things better, a Garmin, and this particular watch has a "stress" indicator. The watch measures your stress by monitoring your HRV. Low and behold, my stress usually shoots up when I eat a meal!! Before I started propranolol I would sometimes get tachycardia with eating and I guess this is why...

[MikeO]

@JennKay does your bp drop about an hour after eating?

[MikeO]

16 hours ago, DysautonmiaMatt said:

They do increase my anxiety which creates a feedback loop

Funny you mention this. I know when i first purchased my home heart monitor i would obsess over every beat and then my PVC's would start kicking in (I am sure sometimes we are our own worst enemy). My PVC's normally come with the compensatory 2 beat pause (i can tell because the tinnitus in my left ear stops and i feel the thump). I have learned to just ignore them unless i get a rash of them which normally is a precursor to a orthostatic event.

There are other lifestyle contributors that will cause PVC as well. I would chuckle when i was in Cardio Rehab because a few of the folks would come in from time to time (known drinkers) and have a rash of these Busted!

16 hours ago, DysautonmiaMatt said:

Unless I get chest pain or some new symptom with them I am not going back to the ER to throw away more money. 

I have learned this one as well. While i can't tell anyone when or when not to go to the ER i just don't for a few PVC's.

16 hours ago, DysautonmiaMatt said:

Before eating 120/87 HR 58

After eating with PVCs

138/102 HR 86 3 skipped beats

149/84 HR 80 3 skipped beats

155/99 HR 84 2 skipped beats

147/104 HR 88 2 skipped beats

These don't look too bad outside of the skipped beats. I would be happy with them. My blood pressure drops after eating and i get only a small increase in HR if any.  

[JennKay]

@MikeO - I don't know what my BP does after eating, but I'm curious about it now! I've been struggling today so if I have similar symptoms tomorrow I will definitely take my BP an hour after eating.

@DysautonmiaMatt - Honestly, none of the betas I have tried have completely eliminated my PVCs. For me, they mainly help with my random bouts of tachycardia. I didn't do as well on the beta1 selective drugs for whatever reason, but you should give it a go! Maybe it will help and you can get some relief finally.

[MikeO]

25 minutes ago, DysautonmiaMatt said:

Metoprolol seems to be the favorite among cardios.

Well you are correct that Mainstream Cardio likes Metoprolol/lisinopril cocktail or even atenolol. I have had problems with both. I do have one of the best Cardiologist in the state he would not even consider either of the drugs mentioned. He also would never suggest popping a beta-blocker as needed, make no sense.

[MikeO]

Well did not take long. Just ate lunch (a baloney sandwich) at the start:

12:30 pm 130/79 hr 89

12:39 pm 127/76 hr 91

12:51 pm 108/58 hr 88

This blows but it is what it is. At least i have some predictability that i can latch on to. 

[Sushi]

2 hours ago, MikeO said:

Well you are correct that Mainstream Cardio likes Metoprolol/lisinopril cocktail or even atenolol. I have had problems with both

There is a fairly common genetic variance (CYP2D6) that makes Metoprolol contra-indicated. I have it and there are a number of common cardiac drugs that will give you problems if you have this genetic variance.

2 hours ago, DysautonmiaMatt said:

IF this ends up not being Lexapro and keep getting these I will push to get ablation or whatever its called to correct this for good.

I will be getting an ablation for Afib in the next couple of months and my electrophysiologist will also be ablating the autonomic ganglia in the heart with the goal of treating Dysautonomia. Ablations require enormous skill and the most important factor in the success of an ablation is who does it. I am a member of 2 Afib forums and the experienced patients there say that you don’t want to have an ablation with an Electrophysiologist who hasn’t done thousands of them. It is an extremely delicate procedure and operator skill is imperative, not only for a successful outcome but to avoid side effects and further problems afterward. 

[MikeO]

16 hours ago, Sushi said:

There is a fairly common genetic variance (CYP2D6) that makes Metoprolol contra-indicated. I have it and there are a number of common cardiac drugs that will give you problems if you have this genetic variance.

so are you a slow metabolizer?

[Sushi]

4 hours ago, MikeO said:

o are you a slow metabolizer

Yes, a poor metabolizer so medication can build up to toxic levels in the body. This happened recently with the antiarrythmic Flecainide and I developed complete heart block.

16 hours ago, DysautonmiaMatt said:

IF I have to go that route I would go up to Jax and find the best doc to do it and have family I can stay with there. I would never do it where I live now. Please let us know the outcome of your procedure. Hoping it all goes well for you.  What is the risk of ablation of the autonomic ganglia? 

The EP I am traveling to has a lot of experience with ablating the autonomic ganglia but says that some of the procedures that are being reported now in medical literature are too experimental and he would not do them without more research. I will have a zoom appointment with him soon to discuss what he thinks it is safe to do. And yes, a center like Mayo in Jacksonville is a much better option for ablation than what most of us have available locally, but still it would be important to fully research the EP before committing to it as there are only about 25 really elite level EP ablationists in the country. One thing to check is whether they are fellows of the Heart Rhythm Society.

[MikeO]

1 hour ago, Sushi said:

Yes, a poor metabolizer so medication can build up to toxic levels in the body.

Thank you! even my PCP suspected this but, seeing i have been doin well with current med i may not get any testing.

1 hour ago, Sushi said:

Yes, a poor metabolizer so medication can build up to toxic levels in the body. This happened recently with the antiarrythmic Flecainide and I developed complete heart block.

The EP I am traveling to has a lot of experience with ablating the autonomic ganglia but says that some of the procedures that are being reported now in medical literature are too experimental and he would not do them without more research. I will have a zoom appointment with him soon to discuss what he thinks it is safe to do. And yes, a center like Mayo in Jacksonville is a much better option for ablation than what most of us have available locally, but still it would be important to fully research the EP before committing to it as there are only about 25 really elite level EP ablationists in the country. One thing to check is whether they are fellows of the Heart Rhythm Society.

Somewhere i did complain about ablating with my local cardiologists. They do suck. I think the ***** was about the folks with afib that were in cardio rehab talking about how the procedure did not work. 

[Sushi]

4 hours ago, MikeO said:

Somewhere i did complain about ablating with my local cardiologists. They do suck. I think the ***** was about the folks with afib that were in cardio rehab talking about how the procedure did not work. 

The reason that the success rates are so poor is that most EPs doing ablations, shouldn't be! It demands extreme levels of skill and experience. Think about it--the EP is using a radio frequency "torch" to burn scars on the inside of your heart--and they are doing it using imaging only. Not only skill and experience are necessary but inborn hand-eye coordination. It is also very possible that the patient could come out worse than when they came in. It is also very common to have to go in later for a touch-up procedure as, though they will try to provoke the problem during the procedure in order to zap it, there may be hidden sources that don't respond to the provocation. Every cell in the heart has the ability to generate an electrical current, and that is the problem as, when areas other than the sinus node send out a signal, you get chaos.

The guy I am going to has done more than 10,000 ablations--that is why I have a long wait to get a date. People travel to him from all over the world. 

[MikeO]

So are you having 32,000 of these in a day? I would also be careful taking two different at one time. That is contradicted. As always if you are not sure go to the ER. 

[Sushi]

19 hours ago, DysautonmiaMatt said:

Woke up with PVCs today

Are you sure it isn’t Afib? If you palpate your pulse in your wrist you can often tell—Afib is “irregularly irregular,” usually with an elevated heart rate.

[MikeO]

9 minutes ago, DysautonmiaMatt said:

@Sushi I sent in multiple 30 sec EKG captures to multiple docs including a cardiologist and they all told me its PVCs.  When I went to ER my HR was all over the place and they put me on monitor while I was there and did 2 full hospital grade EKGs and told me PVCs.  Yes my HR goes all over the place when these episodes happen but typically under 100 bpm but that could be due to beta blocker slowing the heart.  My BP is also all over the place as well. My personal EKG should tell me if its Afib but for PVCs generally says arrhythmia. I do not have chest pain but it is an uncomfortable feeling. My father had afib and remember him telling me his HR went in the 100s and had to goto ER. They did ablation and that cured him of that.  He drove 40 mins in this condition as he lived in the country.

What symptoms do you have when you have Afib? What do you do to stop an episode? 

Just found out from the cardio that is local to me I need a referral before they can even schedule an appointment. They have a lot of new front desk staff I was told. Earliest is in 3 weeks which is too long to wait. I will just have to goto the ER again and again as that is all I can do.

So did you have an issue with PVC's before you started your med changes?

[Pistol]

@DysautonmiaMatt - when I first became ill with HPOTS I had tons of PVC's - single ones, a few in a row and every other beat. I used to work 12 hour shifts as a cardiac nurse, so they would put me on a monitor while working and we could see them while I was standing there. I also had several 30-day monitors and eventually an implanted loop recorder for three years. they showed sinus tachycardia and PVC's. I used to pass out a lot, and before and after the episodes my HR would shoot up to the 180s. However - the PVC's ARE harmless, despite how uncomfortable and frightening they feel. In my case I tried many beta blockers ( Metoprolol, Propanolol and Bisoprolol ) but none of them really did anything. Then my autonomic specialist switched me to Carvelidol, which is alpha- and beta active, and that pretty much stopped the PVC's and helped control the HR. 

I do know that anxiety can cause PVC's, so I wonder if it is possible that Lexapro may have caused you to be more anxious and therefore the PVC's became worse? 

You may want to discuss this with your physician and ask if a different beta blciker might be helpful in your case. 

[Sushi]

22 hours ago, DysautonmiaMatt said:

My personal EKG should tell me if its Afib but for PVCs generally says arrhythmia

Yes, I have a Kardia and if it says Afib, it is almost always right. But it isn’t so good at identifying other arrhythmias.

22 hours ago, DysautonmiaMatt said:

What symptoms do you have when you have Afib? What do you do to stop an episode? 

I can tell the minute it starts and stops: pounding, irregular beat that is very uncomfortable, all my Dysautonomia symptoms are worse—particularly OI and fatigue. Heart rate registers at about 115. Impossible to do anything, including sleep, until it terminates. 

My episodes seem to be parasympatheticly triggered so sometimes I can terminate them by stimulating the sympathetic system by doing something like running in place. If that doesn’t work, they so far have self-terminated after a few hours. I’ve been on antiarrythmics for years and am now in line for an ablation. I have a FaceTime appointment coming up with the electrophysiologist who will do the ablation and I will discuss with him what he can do to help dysautonomia through the ablation.