MomtoGiuliana

As far as going to the hospital--I know how difficult that is. Do you have a GP or specialist you can call who can help evaluate? She might benefit from IV fluids as Pistol mentioned. When I am in a flare my dr orders IV saline that I get every other day. It helps to stabilize me greatly--at least I am not on the floor/lying down constantly due to dizziness.

I am not sure if there is a connection but there have been young members here in the past with gallstones, so of whom needed surgery to remove gallbladder. Here are some past discussions that may be helpful: https://www.dinet.org/forums/topic/30214-gallbladder-removal-relief/ https://www.dinet.org/forums/topic/3522-gallstones/

Yes this used to happen to me. As I've gotten older for whatever reason this symptom is not as severe when I have a flare up. This is a very common symptom I believe. (Initially I was told by multpile drs I I was having panic attacks. Made no sense to me as I had nothing in particular to have anxiety about.) I am sorry I know how scary and/or miserable it can be.

We maintain a list of specialists here, however I think we do not have any listings in NC. Physicians - Dysautonomia Information Network (DINET)

That's great @MikeO. In my experience it took a couple of months to notice that the neurological symptoms I was experiencing entirely disappeared. I have found there are B12 groups on social media some of whom really push nearly daily shots/injections as the only effective treatment. However for me taking a large oral supplement daily seemed to address the problem. As @rondo pointed out, often the problem is difficulty absorbing the vitamin--from what I have read--for various reasons including age this can become a problem. But it doesn't mean you can't absorb it at all usually--just that large doses are needed so you can absorb some of that. (I am a vegetarian so I feel that probably played a role in my deficiency.)

I was found to be deficient several years ago when I had a very bad relapse. I don't think the relapse was entirely due to low B12 however I had been noticing odd sensations and weakness in my fingers and arms off and on, that started maybe several months prior to this severe relapse. Taking B12 for several months eliminated that symptom entirely (and the relapse ended too). My dr actually started w B12 shots bc she said I was severely low. For some reason about 24 hrs after every shot my POTS that was already bad, got worse. After several shots we went with oral supplements. I agree about supplements. Many people do become B12-deficient for various reasons. It's a good idea to ask a dr if this can be checked b/c if you are low it's important to address.

I think any environmental change can cause symptoms for us. I did OK going from sea level to Denver in the past. However, I definitely noticed the elevation (as many people do anyway). I felt slightly more dizzy (than normal!), and noticed more tachycardia. When I went to over 10K ft while there (and also on a trip to Peru years ago) I felt pretty badly--headache, dizzy, fatigue-- until after a few days of adjustment. Gradual changes in elevation are best, along with rest/minimizing any strenuous activity in the first days, to allow your body time to adjust. Also fluids are very important. It's easy to get dehydrated in a drier environment and also at higher elevations.

For me things have changed over time. As I have gotten older I don't have as significant tachycardia on standing even in a bad flare. I still have all the other familiar symptoms when in a flare up. When I was first diagnosed my hr doubled on standing when I was at my worst--from 80 to 160! I had classic POTS--easily diagnosable (one would think--it still took about a year). My hr does not climb nearly that high typically now and may not even meet the criterion for POTS.

https://www.dinet.org/info/pots/pots-an-overview-r95/: The criteria for diagnosis of POTS is: (1) a sustained increase in HR of at least 30 bpm within 10 minutes of standing (often with an absolute upright HR ≥ 120bpm); (2) in the absence of sustained orthostatic hypotension (drop in BP > 20/10mm Hg); (3) with symptoms of orthostatic intolerance for at least 6 months. In patients < 19 years of age, there is a higher HR threshold for POTS (increment  ≥40 bpm or absolute uprights HR  ≥ 120 bpm) due to physiological orthostatic tachycardia in adolescents and children (Singer et al., 2012) (Arnold, Ng, Raj, 2018) That said I would hope that any specialist would look at all your symptoms any not strictly diagnose you based on this rather rigid criterion observed or not observed in one test. I think many patients symptoms fluctuate daily, yet they still "have POTS". I know my specialist said he considers the above but also all the symptoms a patient is experiencing to make a diagnosis and determine treatment.

Unfortunately a long list of symptoms is typical for dysautonomia. And the symptoms can change daily or weekly which can raise doctors' skepticism, in my experience. Yes most if not all of the symptoms you note have been noted here on the forum by dysautonomia patients. Suggestions I have from my past experience: Write out a list of your symptoms as a reference--it's easy to forget things when in front of a doctor Keeping a diary of symptoms in general may help Identify the 1-3 most concerning/consistent symptoms you want an answer on and treatment for and focus on those don't mention internet research--so many doctors react negatively to this, even tho there is a lot of good information on the internet and you may be right about what you have concluded from the research (you may also be wrong!). Try to approach the dr with an open mind. bring an advocate with you who has observed these symptoms/observed you feeling unwell This may contain some helpful information for you: https://www.dinet.org/info/pots/patient-guide-preparing-for-the-er-new-medical-visits-r151/

The answer may not be the same for each individual of course. For me I feel the symptoms do improve gradually (I am thinking of times I have been in a bad flare up). But I agree it's more complicated. I think it is due to hypovolemia (in my case) but for some reason later in the day my body starts holding on to fluids better. I also can feel a lot worse after eating and this is especially the case in the AM. I have to eat very small amounts and protein/fat rich--not carb rich.

The theory I have heard is that we tend to be best hydrated later in the day and most dehydrated in the AM after overnight with no fluids.

I wish I could challenge the doctors who make such claims to live in my body for 5 minutes during a flare. Yes of course the mind is part of the whole body and it's true we don't well understand this connection medically. It's true for sure that your mental state can cause physical symptoms. How does this doctor explain the explosion of POTS now with post COVID symptoms, I wonder. I do think more physicians are now aware of dysautonomia and that it is a physical illness distinct from mental illness. There was a time I believe when diabetes was believed to be essentially a mental illness. !

That is an interesting question. My two worst flare ups in the last 10 years began in early spring. Could be coincidence but I have wondered if there was a seasonal reason. I do not have seasonal allergies. Generally I feel worse tho in summer and do better with cold weather.

This happened to me also. In the US you can ask for anesthetic that is epinephrine free--which I have requested since my bad experience. Apparently it doesn't last as long so is best for shorter procedures. I have had it used and it's worked well.

I think one phenomena with POTS can be sensitivity to certain environments and or a change in environment. Over the years I have seen many patients on this forum comment on worsening symptoms in stores--maybe it's the lighting or the crowds that is over stimulating? Do you bring water with you on these trips? For me I find if I am keeping myself very well hydrated I am less likely to develop a sudden worsening of symptoms. Coconut water typically works well for me, with a pinch of salt added. I know when I am in a flare and symptoms more severe having to walk across a parking lot (especially if it's hot) can worsen my symptoms by the time I have entered a store. Maybe trying to shop in the evenings and or less crowded times can be a solution too.

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My eyes tear up easily and I have assumed it's something related to autonomic dysfunction. It's gotten worse with age too tho, so IDK. It's provoked by light changes, temperature changes. Not an emotional trigger. However, when in a bad flare I do feel less stable emotionally--tend to have episodes of feeling anger, despair or sadness that are unpredictable. Maybe just bc I feel so unrelentingly poorly.

Yes I experience this and it has taken me by surprise in the past too.

They should put you on IV fluids as soon as you arrive for the procedure. I think these days they do that for everyone anyway, but if you let them know you are especially prone to problems with dehydration they should make sure to start you on IV fluids right away. I have been through colonoscopy twice plus bowel surgery bc unfortunately cancer was found on my routine first colonoscopy (total shock--no risk factors particularly). I was scared of the prep etc bc of POTS however it did not worsen POTS for me. Oh also bc they were aware I have POTS, they didn't rush me out the door either, they gave me a little more time to recover and stay on IV fluids a little longer.

Welcome to the forum. So sorry you have been experiencing severe symptoms and not getting answers. POTS is common in people diagnosed with long COVID. It's possible you have POTS or some form of autonomic dysfunction. Would be good to see an Electrophysiologist if you have not been evaluated by one. A tilt table test can provide helpful data for diagnosis. POTS can cause many symptoms and every person can be somewhat unique although the one symptom we share is increased hr on standing (at least 30 bpm). The list of symptoms at this link might be helpful: https://www.dinet.org/info/pots/pots-symptoms-diagnosis-and-prognosis-r96/ If it is POTS, one of the first in line treatments is increased fluid and salt. IV fluids can really help some patients. That typically helps me the most when in a bad flare up. I also take a low dose beta blocker. A specialist can diagnose you and help you pursue treatment as needed. It can take some time to find what will help you the most.

The thing that helps me the most with POTS related fatigue is increased salt and fluid. But good to check on vit and mineral deficiencies too. I've had low iron and low B12 in the past that I know were contributing factors.

This list of symptoms may be helpful. There are so many, and it seems each person is unique in terms of what they experience, what is most troublesome, etc. https://www.dinet.org/info/pots/pots-symptoms-diagnosis-and-prognosis-r96/

So sorry she is having these symptoms. Great news that the MRI showed nothing of concern. I assume she has been evaluated by a neurologist? Weakness, vertigo, headache and nausea can be POTS or OI symptoms. Has her B12 level been tested? I was found to have low B12 a few years ago and I was having episodes of weakness in my arms and legs that resolved with taking B12 supplement.

Good point that for some people, vitamin or mineral deficiencies may be a factor, and treating that may reduce or eliminate POTS symptoms. I was found to be low in B12 about 5 years ago. I do think that was playing a role in a bad flare up I had. I have also felt worse when my iron was low. Testing for deficiencies would be a good question to ask your doctor.