Scout

Currently having a bad flare up with hyperPOTS.

I can't be upright without feeling so ill and symptomatic.

My pulse pressure is also very narrow (about 20), and salt and fluids isn't doing much.

I think I'm posting on here as I just need some positivity and support.

Hope you all have a nice day 💕

Hi everyone,

I'm wondering how people have gone with COVID?

My doctor advised me to be careful with getting another Pfizer jab, as I had chest pains after my second one. He said he'd give me anti-virals if I catch COVID (haven't had it and hope not to), and that I should be OK, but I am a bit anxious about not having a booster.

On 10/1/2021 at 12:25 PM, Shelby90 said:

I developed a bizarre situation at the base of my skull

I had this exact same feeling after my first Pfizer. It lasted maybe four hours or so and thankfully went away. I also had a POTS flare afterwards, and my specialist said that definitely can happen. So don't let anyone try and tell you "it's just anxiety".

Hi folks.

Just curious if anyone with POTS or hyperPOTS has ever needed to use an epi-pen, and whether it is safe to do so on those who already have labile BP?

I'm also trying to find an anti-histamine that is safe for those of us with heart issues and BP issues. Any suggestions most welcome (I will of course run it by my doctor, too).

Thanks so much.

Just saw this now. I'm so glad you and your family are OK @Pistol!

So sorry to hear you went through that, but I wish you the best for your recovery going forward.

On 9/11/2021 at 2:41 PM, CJ65 said:

Hi @Scout Baroreflexes buffer our blood pressure preventing wide variations in BP. Baroreflex failure can occur after neck surgery like carotid endarterectomy, radical neck dissection or radiation. Certain genetic conditions and brain stem stroke can also cause it. It is characterized by severe range blood pressures and lability, tachycardia. They can tell definitively if you have it during autonomic testing. David Robertson and Italo Biaggioni from Vanderbilt are experts.   They wrote a great article called “The Four Faces of Baroreflex Failure” which is available free on the American Heart Assn website. Baroreflex impairment is common  in autonomic disorders but true failure is rare. I have baroreflex impairment from damage to my  right glossopharyngeal nerve (CNIX) during cervical spine surgery. This nerve ennervates the baroreceptors in the carotid sinus and and the aortic arch. The vagus nerve as you mentioned also plays a role. The message in my case, from baroreceptors to brain is interrupted (afferent pathway) so my brain sends me into sympathetic overdrive, BP extremes etc. I don’t have full blown failure because my left side works but it’s still a bear to control and i can have pressures in 240s/120s but fortunately with alpha blockers, beta blockers and calcium channel blockers (ALL the blockers haha) I have better control.  Another article worth checking out is Baroreflex Dysfunction by Kaufmann et al in The New England Journal of Medicine January 2020. I hope that you don’t have true failure and I hope that you find some relief soon. 
 

**oy my brain, I just realized I replied to an old thread!**

Thank you so much for this @CJ65

Very helpful! It's strange because I have no neck injuries etc that I know of, and yet I have these surges which showed up in my autonomic testing. Either very low BP, or suddenly very high BP, originating from sympathetic overdrive ("autonomic dysreflexia" is written on my file)

I didn't respond well to beta-blockers, so treatment has been tricky.

 

Hey folks,

Just wondering if anyone who has hyper-POTS specifically, has had the covid vax, and how they have gone?

I'm likely getting mine soon and am nervous, mainly because I am very sensitive to all medications and only need to micro-dose meds to have a full effect.

Have been hearing that some people with POTS have flared quite badly after their jab (of course, I'd rather a flare than get COVID, but it's all quite tricky to navigate for those of us with pre-existing chronic illness).

8 hours ago, CJ65 said:

I have Hyperandrenergic POTS and I had Pfizer. I expected the worst and except for a little extra fatigue and a sore arm I was absolutely fine. 

Good to hear you had no reaction! Thanks for the feedback.

8 hours ago, Alex D. said:

I got the Moderna vaccination months ago, only a day or two of body aches.  I have OH, SFN, many symptoms. Digestive, migraines, CFS, brain fog, etc.  

I personally think Covid will be with the world forever.  Vaccinations will be essential, variants are stronger and more deadly.

I really don’t think vaccinations are a personal choice for almost all people.  The alternatives are more deaths and suffering.

Sorry for the soap box talk, but I had a few friends that did not survive Covid. 

I appreciate the feedback, and am sorry you lost some friends to COVID. That is very sad.

As mentioned in my post: I live somewhere where the COVID cases are very low. Nowhere near like how things are in the US or UK, for example. But with that said, I still think vaccination is absolutely important and I am pro-vax, of course.

The only reason I am asking these questions is because of hearing of some people with POTS and other chronic conditions, having really bad long-term flares or allergic reactions after the vax, and not being able to function. Unfortunately vaccines do come with some risks, like all medications, and I'm simply trying to decide what's the best course of action for my situation.

On 4/28/2021 at 5:53 PM, EH89 said:

Hi everyone,

Could someone please recommend a specialist in Sydney in Dysautonomia. I’m not really looking for a cardiologist, more a neurologist. My symptoms are more neurological. 

Thank you very much in advance.

 

Hi there,

Please check out Dr. Judy Spies at RPA hospital.

She is only doing phone consults at the moment (I think) due to COVID, but she should be helpful for you. She is a neurologist who works at the autonomic clinic.

I'm wondering if anyone here has had the COVID vax, especially people with hyper-POTS, and if so, how did you fare?

I live somewhere where covid cases are currently very low, but I am still looking at getting vaccinated. I'm pro-vaccination, certainly not against it at all, but I have had bad flares in the past after other vaccines before (flu jabs etc, that sort of thing), and am just figuring out what to do. Not worried about having a minor flare that lasts for a couple of days — that, I can cope with. I'm more worried about a severe flare that lasts weeks to months, which I know can happen sometimes when it comes to POTS (but I realise a COVID flare would likely be far, far worse, compared to the flare caused by a vax).

Will also be speaking to my specialist about it when I have a phone consult soon.

Thank you for any feedback.

Hey folks, hope everyone is managing OK over the holidays. 

I'm currently having a really difficult flare with my BP going high when I stand or sit upright. 

That had been under control for a while but seems to be happening again. 

I used to take beta blockers and didn't tolerate them well to say the least, so just wondering if anyone with HyperPOTS has taken alpha blockers and how that went? 

I definitely need a new course of action / new meds for the new year because my symptoms are just so debilitating. 

Thanks so much for the replies.

I very thankfully tested negative. 

Nin, so sorry to hear you had it but glad you're OK! 

I'm showing symptoms and getting a test tomorrow. I live somewhere (Australia) where cases are low currently, but I just found out I was exposed (very briefly) to someone who was positive and they didn't know it at the time.

Have to admit, I'm a bit nervous. I know having Dysautonomia may make us more at risk of complications.

Looking for some reassurance. Please let me know if you've had it and how you went.

Praying it's just sinuses or a cold that I have.

Many thanks 💜

Hi there,

I wonder if anyone here ever has blood pressure surges when they cry or feel emotional, even just slightly.

I know it's usual for BP to go up a bit when we are stressed or otherwise upset, but mine jumps up drastically into very high numbers (180/100 or higher), then goes back to low.

My specialist has mentioned that this can be due to my autonomic issues (and largely, baroreflex failure issues), and how emotion can trigger an over-active response.

Just wondered if anyone else with Dysautonomia experienced this and if there's anything you do to remedy it?

I have medications like Diazapam (which is actually the first type of drug usually prescribed for baroreflex issues, to calm the sympathetic nervous system). I'm just worried about getting hooked on them, but at the same time, I can't cope with these surges any longer!

Many thanks for any feedback.

Another fan of crochet here! So much fun, and one that you can do laying down in bed too.

 

Hi there,

It's been suggested to me that I have baroreflex failure.

My notes from my specialist also say I have "autonomic dysreflexia" which is somewhat similar, but common in people with spinal injuries (which I don't have).

It really is quiet a mystery.

I have read that for baroreflex failure, the main aim is to calm the over-active sympathetic response which helps stabilise the baroreflexes.

On 10/4/2020 at 12:18 AM, Delta said:

@Pistol, @cmep37, @HCD77, @p8d,

Thank you all for your responses, all of which are helpful and very much appreciated!! At this point I am inclined to not have the shot, although I am waiting to hear back from my POTS doc for his thoughts. I will post again once I've heard from him.  Thank you again!!

It's interesting you asked about the flu shot, as my specialist — who is the head of a very good medical school here — has told me that they are seeing a clinical correlation with people get the flu jab, and shortly after, getting POTS symptoms for the very first time. Apparently this is happening more in women, too.

Of course, my specialist can't make any definite statements (and I think she'd probably lose her job if she outright said "don't get vaccinated"), but she did make it clear to me to be careful and to be aware that people seem to be having flares, sometimes very severe.

Definitely advisable to speak to your specialist and do what feels right for you.

I am certainly not against vaccines per se, but I'm not going to be getting the flu jab as I've had bad flares in the past and got very sick after a set of 3 vaccinations a decade ago (when my POTS first started).

Do you have a cardiologist you can check in with Viktor?

I had times where my diastolic would do that. Thankfully it's now dropped (so dealing with the low diastolic readings) but I do think it's always good to check with your specialist, especially as the diastolic is related to the pressure in the heart specifically.

Good to just make sure everything is structurally sound / no issues with heart valves etc.

Sounds like it might be pulsatile tinnitus? Is it a whooshing? In time with your heartbeat?

I have those exact symptoms happen regularly. Had about a year or two when that would happen every night actually, but thankfully it's not every night now.

The tremouring afterwards for sometimes an hour or so always signaled that it was a dysautonomia attack, with an adrenal surge. My temperature often drops, too, and my teeth start chattering after the worst of it is over.

Please know you're not alone in what you're going through!

Hi @Ksheo,

I wish I had helpful advice but I just wanted to let you know I often have a very narrow pulse pressure.

I've had many times where it was been 20 points difference (or less). A reading such as 80/60 or 70/50. I always feel very unwell during those episodes, but no doctor or specialist has really ever been able to explain why it happens, other than it being the dysautonomia.

Also have had times where I've had a wide pulse pressure (although far less common for me).

Dysautonomia really is a wild ride!

Just seeing if anyone with dysautonomia has had COVID-19, and if so, how did you cope / recover?

I currently have a dry cough and I am going to get tested tomorrow. Feeling a bit nervous about it but hoping it's nothing.

I live in Australia and the cases are a lot lower here, but we did just have a cluster outbreak nearby.

Really hope everyone is staying safe and well 💜

I have hyper-POTS also and 'autonomic dysreflexia'. My BP is very labile.

When resting it is usually around 90/60 or lower, and then when doing anything that activates my sympathetic nervous system, even slightly, my BP shoots up with my diastolic usually around 100.

Thankfully it is very short lived and laying down flat reverts my BP back to a low reading, but it is very tiring and difficult having the readings bounce around so much.

When I did my tilt table test around two years ago now, the specialist said to me that they recorded my beat to beat blood pressure (so recorded the pressure every single heart beat using a special monitor) and she said that my BP fluctuated so vastly and she's rarely seen it in patients bounce around quite so drastically. This means the autonomic nervous system is struggling to be stable.

I hope everyone is staying safe.

It's upsetting to see how many cases there are out there. I had a bad feeling this would happen, and I guess it did. But I still have hope.

Please stay safe everyone. We will get through this.

Self-care and take things one day at a time.

Sending virtual hugs.