Wearable Devices for POTS

[JennKMac]

I have POTS (triggered by a long-covid infection from April 2020). Although this has yet to be confirmed, I am fairly certain I have the hyperadrenergic version. I just started taking Ivabradine (after taking metoprolol, which gave me terrible headaches and brain fog) and have found that it does reduce my HR to some extent. However, I am curious if other POTSies have used wearable devices like Apollo Neuro, COVE, AMO+, etc. And if so, if the device brought any relief from the high HR. Thanks in advance! (I did see an older post on this same issue, so I am hoping there are more experiences to be shared since then. Or perhaps the same individual can share how the device has helped long term.) 

[cmep37]

I can't add anything on the wearable devices issue - I must confess I didn't know such things existed until reading your post.  I'll be reading any comments with interest!

However, if you think you have hyper POTS (I assume you are seeing a sustained increase in systolic BP on standing) you may get some benefit from trying an alpha-antagonist such as Clonidine.  Ivabradine lowers HR but doesn't affect BP much at all so is more suitable for those of us with non-hyper POTS who don't experience a rise in BP.  In the UK the usual beta blocker prescribed for POTS is not Metoprolol but Propranolol at low doses - 20mg a day is standard as studies have shown that higher doses don't help more but instead just worsen fatigue and other side effects.

[JennKMac]

Thanks, @cmep37. I actually don't have an increase in BP on standing, just the HR increase. I do understand that is a criteria for formal diagnosis of hyper POTS, but I also don't have any of the other typical symptoms seen in Hypovolemic POTS either. I'm hoping to see medical providers at a dysautonomia clinic sometime this year to get a clearer understanding of what exactly is going on with my POTS. My cardiologist is as helpful as he can be, I think. But without that specialty focus on dysautonomia, I know there is something missing in the testing capabilities, etc.  If I hear any more on other platforms about wearable autonomic nerve stimulators, I'll be sure to pass the information on to you!  

[cmep37]

Good luck with the dysautonomia clinic.  My POTS is secondary to hEDS - have you ruled that out as a cause of your POTS? I only ask as I was 38 before I was diagnosed with hEDS which is sadly all too common.   

I do find the idea of wearables interesting but they also seem very expensive so like you I'd need to see more evidence first! 

Have you tried Midodrine or Fludrocortisone?  I found Midodrine very helpful for lowering HR, the best drug I ever tried but unfortunately after a while it raised my BP to scary levels (at worst it was 138/125 and I felt like someone was sticking a red hot poker through my skull) about 4 hours after I took it so I was advised to stop it.  I had no success with Fludrocortisone - it had no effect on me whatsoever, but others swear by it!

[MikeO]

17 minutes ago, JennKMac said:

I actually don't have an increase in BP on standing, just the HR increase

Can i ask what meds you are taking?

[JennKMac]

@MikeO, right now, only Ivabradine. 2.5mg, twice a day. 

[JennKMac]

@cmep37, my POTS is definitely secondary to Covid. I don't fit the bill for hEDS. 

[MikeO]

38 minutes ago, cmep37 said:

(at worst it was 138/125 and I felt like someone was sticking a red hot poker through my skull)

Oh i would love to get these BP's I am constantly hitting 170's/105's. if i take any down time "evil recliner" i will drop into the 70's/50's 

[cmep37]

125 was my diastolic!  My pulse pressure was 13.  My Gp wouldn't believe me until I showed her a pic of my BP monitor then she was horrified. 

[Jyoti]

I think I am the one who wrote about the Apollo Neuro at the beginning of this year @JennKMac.  I still love it.  Just got a new band as the old one was getting kind of worn.  Like I said back in January, I had hoped it might be THE ANSWER, which (of course) it is not.  But I use it every night for sleep and it makes a big difference.  Once in a while I forget it and with the help of my bedside herbal apothecary manage to fall asleep.  Almost inevitably I will wake up at 2 and have no luck  getting back to sleep.  But then I remember---ahhh, my Apollo! and put it on and am back asleep in a few moments.  

In addition, I use it after I have overdone things and it helps bring my hyper-arousal down more quickly.  It supposedly does a bunch of other things for you, but those are the main ones that I have found helpful.  

It falls in the middle of the three devices you mentioned, I think.  It was a lot to fork over, but for me --well, well worth it.

[Pistol]

14 hours ago, JennKMac said:

my POTS is definitely secondary to Covid. I don't fit the bill for hEDS. 

@JennKMac - ANY viral infection can be a trigger for POTS. Many of us have POTS and do not know it until it becomes triggered by infection, pregnancy or other stressors. Fortunately in many ( not all ) cases of post-viral POTS it can become manageable over time. I know of several people that developed it after Lyme's disease, Mono, even a severe case of Flu - and they all have either recovered after a few years or they have been able to manage their symptoms to where it only reoccurs at times. 

@cmep37 is right: in HPOTS - which I have - there is usually a marked increase in BP along with the tachycardia upon standing. This is generally an increase in DIASTOLIC pressure ( the lower number ). And I also agree with Fludrocortisone and Midodrine as a potential treatment for POTS that is NOT accompanied by an increase in BP. Orthostatic tachycardia from POTS can often be controlled with increase in salt and fluid intake as well as wearing compression hose. Have you tried all of these measures? Also ample rest as well as aerobic exercise can help with the symptoms - just make sure you exercise TO TOLERANCE, meaning that at first you may not be able to do a lot of exercise and need to increase gradually and very slowly. 

[cmep37]

1 hour ago, Pistol said:

This is generally an increase in DIASTOLIC pressure ( the lower number ).

I did not know this @Pistol. I always thought it was the systolic that went up!  I love the fact you always learn something new on this forum!

[RecipeForDisaster]

I use a homemade transdermal vagal stimulator based on a TENS machine. I find it somewhat helpful for my HR, but it definitely doesn’t take the place of my meds. I’d love to learn about these, though, because if they’re helpful, they’d be money well spent.

[MikeO]

@Pistolwas wondering about clonidine. Supposedly helps with the high side of BP's and has some other benefits "keeping Mike focused and not Googling were frogs go in the winter"

[Pistol]

@MikeO - clonidine is hit-and-miss. It can cause supine hypertension but also is used to PREVENT hypertension. It is a VERY powerful little pill, and it can either help or turn you upside down. For me personally it caused Havoc with my system and I had to stop it after just a few days because of the severity of side effects. But I know of several people with dysautonomia whom it helped. It is one of those things that - if your doc prescribes it for you - you need to try to determine whether not it is right for you. I also know that it helps some people that take it on an as-needed basis.

[MikeO]

8 minutes ago, Pistol said:

clonidine is hit-and-miss

Good to know. Thank You!