MomtoGiuliana

I've wondered the same because my worst flare ups have been in the spring also.  I do not get runny nose, sneezing etc.  

I have never heard of this symptom related to dysautonomia.

Could a nutritional deficiency be possible?

Hopefully someone w experience can answer your question but I wanted to refer you if not or if helpful to our physician list.  There may be someone listed who would be helpful to you.  I am unsure if Mayo would treat you or just do more testing, and if you are diagnosed, you do need treatment probably.

https://www.dinet.org/physicians/

From my knowledge, many POTS patients do not do well in heat bc the vasodilation increases symptoms.  Some patients take midrodrine which causes blood vessels to constrict, improving symptoms.  I know that I do not tolerate hot/warm showers when I am in a flare--and typically feel faint during and after showering (for example).

But it is also true that with dysautonomia there is rarely a one size fits all approach.

5 hours ago, Jeanee H said:

I’ve had a weird positional rapid heart beat for twenty years. It happens when I bend down then straighten up, but only lasts a few minutes. All serious heart stress tests show my heart strong and normal except a slight MVP that has not worsened over the years. I was treated for Hashimotos 

Interesting.  This can happen to me too (bending over can trigger a rapid heartbeat or palpitations--or any rapid change in position).  I've always chalked it up to POTS (or a highly sensitive vagus nerve response?) since I also have had a variety of testing and see a cardiologist annually and he is unconcerned by the symptom.  I also have Hashimotos.  I've had it for over 20 years.  I take synthroid daily.  I have not heard of a one time treatment.  I do wonder sometimes if synthroid exaccerbates palpitations for me, but my TSH is always in the normal range when tested.

22 hours ago, Jeanee H said:

 I’ve never had this bad of a flare and I’m scared.

So sorry you are feeling poorly.  And so sorry for your loss.  For me flares typically come on suddenly.  Can you see your doctor? 

When I am in a flare I increase fluids and salt greatly, as well as potassium rich foods.  IV fluids can help a lot to at least allow me to stand up and walk without dizziness.

So sorry you are so unwell.

Have you been evaluated by a rheumatologist or maybe endocrinologist?  You may have other condition/s such as another autoimmune condition that is causing some of this.

Also wondering if you have been prescribed IV fluids.  Many of us benefit from IV saline.  For me when in a flare up, IV saline can at least get me from having to lie down to being able to sit up fairly comfortably and move around a little more easily.  As Pistol said, too much lying down can only make dysautonomia worse.  It's something I did not understand until I was diagnosed and researched the condition.

When I am not in a flare I am able to stay upright all day.  In a flare I can be everywhere from somewhat disabled (if I keep up with fluids I can manage to work and do most basic tasks) to almost completely unable to stand up without severe symptoms such as dizziness, weakness, tachycardia, fatigue, nausea, etc.

So sorry.

Hope you recover soon.

Definitely it is very hard for people who have not experienced it to grasp just how severely disabling POTS can be.

So sorry.  Unfortunately POTS does cause so many symptoms.  I agree that even drs well versed in POTS don't seem to be aware of all the possible symptoms.  Importantly you need a dr willing to try other treatments besides extra fluids and salt and exercise.  I've had doctors order soo many tests, and nothing came up positive for me (fortunately!), other than a tilt table test.  I did have low B12 a few years ago that I think contributed to a bad flare up. 

I hope you can get better care.

Welcome to the forum.  It's not clear to me in your post that you have a definite diagnosis of dysautonomia.  Have you seen a specialist?  Have other causes of your symptoms been ruled out?

If this is dysautonomia--what works for me is increased salt, IV fluids, increased fluids in general, high potassium low sugar diet, small more frequent meals and more protein especially in the early part of the day.  Also reducing external stimuli.  When I am in a flare, even having the TV on can be too much.  I need quiet space.  I minimize looking at my phone, computer etc.  Reading a book I can sometimes handle depending how symptomatic I am.  Fresh air can be helpful, for me, as long as it isn't too hot out.  Also I try not to lie down too much during the day bc for me lying down a lot just makes me eventually feel even worse when upright.  As you mentioned, good rest/sleep at night is important.  When I am in a flare my sleep can be very disrupted unfortunately.

I also take a beta blocker and increase the dose when symptomatic (advised by my dr).  There are other medications that can be prescribed that can help.

I was also told by a doctor to reduce/eliminate salt.

Of course the worst advice, that many of us have gotten, was to see a psychiatrist.

On 12/31/2023 at 10:13 PM, little_blue_jay said:

Well that's good news! Glad for you! 

But not for me lol  I'm only 47, my mother was still menstruating at 53 so I've potentially got years of this left before I get relief 😅 

Age 48 and age 50 I had some of the worst most disabling flare ups of my life.  I was not technically in menopause until this year at age 55.

I wish I had advice in retrospect but I don't know what would have helped make it better.  

On 12/27/2023 at 9:28 PM, little_blue_jay said:

Do you still get these severe crashes every couple years? 

Did you ever identify any trigger(s)?

I have not had a crash since 2020 (knock on wood).  I have had episodes of feeling poorly but nothing like the relapses of the past.  I think it could be hormonally mediated.  I am now in menopause.  And honestly feel better than I have felt in years.  I know many people (generally) complain about menopausal symptoms but for me it's been a relief from some symptoms.

Mine has on occasion frightened me (when in a flare).  I don't know that a smart watch is considered medical grade.  I wouldn't rely on it to be entirely accurate.  I would talk to your dr about whether it's useful for you to use it for the purpose of tracking hr and bp for POTS.

DGL has worked for me for occasional heartburn.

I am so sorry for all you are going through.  Grief does take a toll on the body.  Try to take care of yourself physically.  Let people take care of you if they ask.  Eat healthy foods even if you don't feel very hungry and stay hydrated.  Rest.  And as Pistol says, let yourself go through the grieving process.

10 hours ago, Amyschi said:

 Interesting on the heartburn - is that when you lose your appetite, or can it happen with flares only??  

Yes the heartburn is during the flare when I have also lost my appetite.

Something goes on w my digestive system but it's never been anything diagnosed beyond "POTS".

Yes when in a bad flare I lose my appetite; I also experience nausea and sometimes bad heartburn  I've never been diagnosed with gastroparesis. I typically lose 5-10 lbs within a month, which is a lot for me bc I am thin to begin with.  

When the flare eases up my appetite returns.

I'm so sorry.  What has kept me from going to the ER with horrible flare ups is my PCP now understands I need IV saline when in a flare up.  She is aggressive with ordering it and getting me an appointment at infusion center asap.  This has helped so much to tamp down severe symptoms, but it's been years in the making,.  It's frustrating that more doctors at this point are still not aware of our condition and things that can help.

I have had that symptom.  In general I feel weak all over when highly symptomatic.  

When I am in a flare up that is so bad that I can't stand up or move around fairly normally my dr orders IV fluids.  It is subjective.  

Sorry you are having a hard time.  I second IV fluids.  It makes a huge difference for me when I get in a bad flare.  My dr orders two bags 3X a week, administered over 4 hours.

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.

It's typical for POTS patients to feel worse when warm or hot--blood vessels expand and there is more pooling.  Compression hose helps many POTS patients for this reason.