How do shingles affect POTS patients?

[Guest Julia59]

I'm posting for a friend who has POTS.

She just called me this afternoon and asked me if I would mind posting for her as she can read the posts, but has a difficult time typing.

She just found out she has shingles---and she has a pretty severe form of hyper/adrengic POTS.

Have any of you who have POTS ever had shingles, and did it make your POTS symptoms worse? What treatments if any did you receive to help with the pain, and did the medications to treat the pain make the POTS symptoms worse?

She has a form of migraine headaches also, and swimming in a warm pool has helped her out, but now she can't use the pool due to the shingles----and now blisters are forming that are going to drain, so she can't go in water that other people enter.

Thanks for any responses.

Julie :0)

[mehganb81]

Hi,

I was diagnosed with shingles in december of '04 after sucessfully controlling my Autonomic dysfunction symptoms for about 2 years without any major problems. My body is extremely tired from dealing with shingles and my autonomic symptoms are back in full force. I had to take a leave from graduate school to take care of myself due to overwhelming fatigue, palpitations, and numerous fainting episodes. Eight months later I am just starting to feel like I am getting back to myself. My doctors explained that indivuals with dysautonomias often have extended periods post-viral symptoms.

I caught my shingles very early and was able to get into the doctor for a anti-viral called acyclovir. I was lucky to only be in terrible nerve pain for about two weeks and have minimal lingering pain.

I wish your friend the best and hope she recovers more rapidly than I.

[Guest Julia59]

Any more feedback on shingles and POTS? Any of you ever had shingles?

Thanks

[Sunfish]

i haven't had shingles, but aside from when my POTS/NCS was almost in complete hibernation (those were the days ), i have not had a virus or any type of bug that hasn't set off my autonomic craziness to at least some degree...the degrees have varied greatly, and not always in proportion with the severity of the bug i'm fighting off, but shingles is generally tough for anyone so i would expect it to be even tougher for someone with POTS. having had several friends, family members, & the like who have had shingles, though, it's also good to know that there is a really wide range of how shingles "hits" people...everything from not bad at all to really ill...

here's hoping your friend gets by with an "easier" case of it...

:-)melissa

[Lob]

Hi,

I got shingles a few months back and have been experiencing symptoms related to POTS. Do any of you know if POTS can be caused by shingles?

[MomtoGiuliana]

Welcome to the forum.  I am not aware of any studies etc specifically linking POTS to shingles, however, POTS can arise after inflammation due to infection.

[Sarah Tee]

@Lob, POTS can be caused by any infection, and really any illness, so it’s possible. I searched for research papers linking POTS and herpes zoster, but nothing came up, so no particular association between these two has been found.

POTS and other types of dysautonomia can also appear without any identifiable trigger, so it can be hard to know, but there is lots of anecdotal evidence of people coming down with a virus and getting POTS soon after.

Unfortunately, this aspect of dysautonomia isn’t well studied yet. There has been evidence building recently that the immune system is involved, but nothing really affecting treatment options yet.

[Cris]

On 11/16/2023 at 11:28 AM, Lob said:

Hi,

I got shingles a few months back and have been experiencing symptoms related to POTS. Do any of you know if POTS can be caused by shingles?

Hi there. I’ve officially been diagnosed with pots for about 15 years. I’m at the beginning of week 4 of shingles. My blisters have scabbed, fallen off, and now I have the new pink skin. We caught it extremely early & started antivirals. 
 

Now, the pots flare is in full effect! It takes at least 2,000mg of sodium before I stop violently shaking & experiencing air hunger. I wake up with massive migraine pain at the base of my skull. It takes about 3 hours for the symptoms of adrenaline dumping, head pain, & vision to completely clear. I was not having these issues extreme effects pre shingles. 
 

Highest BP I’ve had in a week is 85/57

[Yt.nova]

Hi there, 

I got diagnosed with POTS about 2-3 months ago (experiences symptoms since childhood)  and am doing my best to manage those symptoms, and still learning.

I’m only 22 (F) and had a shingles flare about 1.5 weeks ago. I’m trying to figure out why. 
I’m not diagnosed with any autoimmune disorders and stress wise have gone through a bit of a tough time but nothing crazy right now. People are saying it’s just really bad luck, though I can’t help but just feel that the 2 are related some how.  

POTS hasn’t gotten the academic attention it deserves so it’s hard to find info on obscure correlated issues. Only recently have I seen that people are questioning if POTS could be an autoimmune disorder or how it may relate to other developmental disorders like adhd turrets and ASD. I personally believe that it effects more then what can be found online, whether through correlation or causation. It’s unfortunate and stressful to not have answers, then get minimal support from doctors who didn’t even know the condition existed. My best advice is track all that you can to hopefully find trends and patterns that can help understand more about how your disautonomia affects you. 
All the best guys! 

[Sarah Tee]

5 hours ago, Yt.nova said:

Only recently have I seen that people are questioning if POTS could be an autoimmune disorder

Researchers have been looking into this for a long time. I’m afraid I don’t have the energy to look up references today, but it’s at least two decades, and possibly dating back to the 90s when POTS was first described in modern times.

Names that spring to mind are Blair Grubb, Artur Fedorowski, and David Kem.

Also, I believe the connection being made between other types of dysautonomia and autoimmunity dates back even further. 

Dysautonomia International has twelve years of conference lectures that you can explore here:

https://vimeo.com/dysautonomia

Unfortunately progress is slow due to lack of funding, and some recent studies were cancelled or indefinitely delayed due to the pandemic.

Organisations such as DINET and Dysautonomia International campaign tirelessly to try to improve things. Do try to get involved if you can – I realise it can be hard when unwell – I hope I’ll be able to do more to help in the future.