MomtoGiuliana

I've had two - plus a prep for surgery bc cancer was found (everyone should get a colonoscopy when recommended it can save your life!). I didn't feel as badly as I expected although it wasn't a walk in the park. I told my dr about POTS. They made sure to start me on IV fluids as soon as possible when I came in for procedure. You are on IV fluids during and after the procedure as well. They gave me more time in recovery, drinking fluid as well as IV fluids. For me I think having the procedure first thing in the AM was best. I think you can be drinking fluids up until a few hours prior. So I was drinking a lot of fluid up until I went to bed and when I got up during the night--I do not believe I became technically dehydrated during the prep. It's not great getting up in the AM and unable to drink fluid, but to me, getting up and going straight to the procedure (and have someone to help) was preferable to sitting around for several hours at home unable to drink anything. Overall it went OK for me. Hope all goes well for you.

Interestingly there are several articles about this sensation and possible causes here. This may be helpful: https://www.medicalnewstoday.com/articles/menthol-feeling-in-chest https://yourdoctors.online/what-causes-cold-icy-feeling-in-my-chest/ Since you've been diagnosed with dysautonomia or at least sfn I believe, this might be of interest to consider with a doctor, if other serious causes have been ruled out: Nerve Irritation Irritation or inflammation of the nerves in the chest wall, known as intercostal neuralgia, can cause localized chest pain and unusual sensations, including a cooling feeling.

I have not had a flare up of POTS symptoms after any vaccine. I have had POTS for over 20 years and have had many vaccinations including annual flu, COVID etc. If I get sick with something I do tend to have an increase in POTS symptoms.

IV rehydration is very helpful to me. I would question some of these medical claims. Personally I would not want anything (vitamins etc) except the rehydration without consulting my dr.

Yes it is true that sometimes after IV fluids I have had it tested and it was low. This happened while in hospital recovering from operation and they gave me potassium supplement. I know the timing of the draws has varied over the years, and definitely have had slightly low readings without having had IV fluids. My specialist told me that overdoing salt can deplete potassium but he also said some people have borderline potassium anyway. In any case, I have never had low K when feeling well.

Sorry that people are so mean. These people are not worth your energy. I would just try to ignore it and go on with your day. Most humans do care about others, give others the benefit of the doubt, so try to keep that in mind when one of these outliers shows themselves to be other than that.

High salt diet can deplete potassium. Also for some reason when I am in a flare my potassium tends to go low. Not sure why.

I second the IV fluids as well as trying hard to stay as upright as possible during the day. Have you been able to see a specialist or your prescribing dr since your symptoms worsened? If the tachycardia is severe, a beta blocker may help. My experience with POTS flare ups is that they come on fast. One week my life is pretty "normal" and the next I can barely stand up. Fortunately for me as I have gotten older I have longer periods of feeling well. Hopefully for you this will also be the case, and you will recover from this flare up within days to weeks. For me, IV fluids really help. At least I get enough relief that I can stand up and move around with more ease and feel a bit less miserable. I also increase my dose of beta blocker if needed (under dr's supervision).

High salt, high potassium (from food), minimized high glycemic index foods, small more frequent meals, lots of fluids generally.

Maybe this article is helpful? https://www.medicalnewstoday.com/articles/321512

Thank you for sharing this!

Thank you for sharing this!

I have pretty distinct episodes of flare up. They usually start with some mild symptom such as mild fatigue or I start noticing more rapid heart rate on standing. Then within days I have the whole suite of standard POTS symptoms. I try to get starting on IV fluids as soon as possible. My dr is in agreement and is aggressive about it. She wants me to get them 3x a week when my symptoms start to get bad. I have not had a significant flare up knock on wood for over 3 years now!

When I am in a flare up standing is very difficult and too much standing can quickly lead to a cascade of worsening symptoms. I also get high bp on standing, and this is greatly exaggerated, as everything is, when in a flare up. I have learned however when in a flare that trying to at least sit up, as much as possible during the day, is important also to avoid worsening of symptoms. Lying down for too long only increases my OI. IV fluids help a lot. I can go in for fluids in a wheelchair and walk myself out several hours later. The benefits can last for about 12 hours. And at least during that time I think it greatly helps prevent a worsening of symptoms bc I can be upright and even moving around more than otherwise.

narrow pulse pressure is not uncommon in POTS. If you search for this you will find other discussion on this topic. Collected data of his bp and hr can be helpful for when he sees a dr. Good he will be seeing a specialist but that sounds like a long wait? Is there a local electrophysiologist who could see him sooner?

Welcome to the forum. We maintain a list of specialists here: Physicians - Dysautonomia Information Network (DINET) You can also search in the forum eg "Kansas City" This topic might have helpful information: https://www.dinet.org/forums/topic/25956-new-to-the-forum-from-kansas-city/ in case you don't get any other replies!

So agree with what the others have said. Part of the problem is that our society highly values productivity. Another problem is that this illness is not always recognized by the medical establishment including how severely disabling it can be. I know when I have had flare ups and especially before I was diagnosed correctly, I thought also it was a matter of will and that I wasn't mentally strong enough, or if I just were not so "lazy" and pushed myself more and exercised more I would feel better. In my experience when I am in a flare up the things that help are more fluids, salt, IV fluids, increase in beta blocker dosage, avoiding lying down too much during the day, moving around a little (as much as I can tolerate), small meals, more protein, less carbs. It's very hard. Hope you start to feel better soon.

I've not experienced anything that dramatic, but when my hands get cold I do lose some coordination/dexterity. I think tho that is normal--although maybe it is more pronounced in some people/POTS patients. The nerves in the fingers and arm do not function as well when cold.

Welcome to the forum. You have been through a lot. Glad you have a diagnosis and are able to get helpful treatment and guidance. Here is more info about treatment that may be helpful: https://www.dinet.org/info/pots/pots-what-helps-r100/

Hi StaciF welcome back! Sorry you were locked out of account. If you were away for awhile that may explain it. We did have at least one major overhaul of the forum since 2005. So sorry you are having trouble finding the help you need from drs.

My specialist has said this too--that POTS is not rare but rarely diagnosed. He has said that many people who have POTS have mild enough symptoms that they never aggressively seek diagnosis or treatment. True I don't know how he knows this.

Welcome to the forum. Your questions about others' experiences are on point for this forum. Our guidelines are here, for more information: Guidelines - Dysautonomia Information Network (DINET) Yes nausea is a common symptom with POTS and other GI symptoms not unusual. We typically seem to experience a constellation of symptoms. Here is a fairly exhaustive list of POTS symptoms: POTS Symptoms, Diagnosis and Prognosis - POTS - Dysautonomia Information Network (DINET)

Have you been able to try IV fluids? That helps me at least stabilize a bit when I am in a bad flare up. I also avoid triggers. A big one for me is warm showers in the morning. I can feel absolutely horrible after one. I only shower at night when I am better hydrated and whatever else it is that makes me feel better in the evenings than in the mornings. I avoid sugar, and increase protein and smaller more frequent meals. A large breakfast or anything sugary or carb heavy can trigger worse symptoms for me. I try to sit upright most of the day (may not be possible all day--but when I can at all tolerate it). Too much lying down seems to cascade to worsening symptoms for me. Even tho I at first feel better lying down. I agree about finding something small you enjoy or that even distracts you for some short time at least. I need quiet (TV etc is too much when my symptoms are bad). But I agree that hearing nature can be soothing. There are apps such as the Calm App that contain nature sounds or other gentle sounds or music if going outdoors is not possible. Fresh air though I find is helpful (as long as it is not severely hot out). I know, the symptoms can be overwhelming.

This is similar to what I experience when in a flare up. And it also happened to me during pregnancy and post partum (when I finally got a correct diagnosis). Beta blocker, compression, fluids and salt have helped me the most. Salt may sound counter intuitive, but my BP drops to normal or lowish if I am well hydrated and have had adequate salt intake.

So sorry you are in a relapse after many years of feeling better. I've been there too. What always helps me most is fluids, salt and compression. Smaller higher protein meals, also rich in potassium and magnesium. Also I find that forcing myself to at least sit upright most of the day is important. Otherwise the OI just gets worse.