MomtoGiuliana

My blood pressure goes up when I am in a flare. Increasing fluids paradoxically brings my bp down. I do also increase my beta blocker as that helps bring both my hr and my bp down a little.

I had a very similar experience. I think bringing in a psychologist can be helpful. They are the expert most qualified to come to a conclusion about mental health and it can help a physician consider other explanations.

Yes, I get sensations like that--a feeling like adrenaline in my limbs followed by weakness. Increasing fluids generally helps relieve some of this.

Welcome to the forum. There have been topics in the past discussing specialists in Australia. If you do not get an answer to your post, you could try a search in past topics. Here is one: Do you have experience with autonomic testing or autonomic specialists in Australia? - Dysautonomia Discussion - Dysautonomia Information Network (DINET) We do have a physicians list (see menu at top of page) but it may not be helpful for you as I don't think it lists many specialists in Australia atm.

Yes this seems to be quite a common experience among POTS patients to feel worse in the AM and better at night. It's been my experience too. When I am in a flare I cannot shower in the AM--I have to shower at night. I think some of it has to do with hydration status. We tend to be a bit dehydrated in the AM and it takes some time to replenish fluids. But I remember a doctor telling me is probably also has to do with diurnal changes in cortisol levels.

I just had my 2nd dose of Moderna a week ago. In the first 24-48 hours I had a temp of 101 deg F, body aches, dizziness and fatigue. This improved rapidly in the 2nd day. I did not have residual POTS symptoms. However 4 days after the shot I developed GI pain and severe diarrhea. I don't know if this was a reaction to the shot or coincidence. That has now resolved. I feel like I am not quite back to my "baseline" but I think that is due to the GI upset and not sure what caused it.

I agree with Pistol they should have given you fluids, and you would have been justified to return. I'm wondering if you have been able to try IV fluids as a treatment. I hope you reported this driver to Uber. That is a terrible experience.

So very sorry for all you are going through right now. It's a huge stressor when a serious relationship ends. I've seen quite a few patients on the forum have symptom improvement as they got older. So you may very well see improvement in time.

Family can be hardest on us and most hurtful --they speak their minds candidly in situations where most would not, and maybe without thinking. I don't have personal experience with a port but many on the forum do and someone with experience will likely respond. But IMO as long as it is safe for you for the port to be exposed I don't feel you are under any obligation to cover it in public unless you want to. I think in our culture we often want to cover up signs of illness and it's not mentally healthy to be in denial or secretive. Hope you feel better soon.

This condition does seem to affect each person in a somewhat unique way. And in families some are only mildly impaired and others significantly.

Interesting about caffeine reducing cerebral blood flow--maybe not everyone with POTS is affected that way. But I believe that I am and this is the first I have heard this. I actually get increased orthostatic symptoms after drinking anything w caffeine or eating chocolate. It never occurred to me this was something documented in other people!

This study seems to be looking at patients taking a medication to suppress immune system. It may be relevant for some of us but not others.

Glad you are OK!

So sorry you are not feeling well. Good you have had what sounds like thorough testing and have a diagnosis. The symptoms you are describing are not uncommon with POTS. An exhaustive list of POTS symptoms per various sources is here: POTS Symptoms, Diagnosis and Prognosis - POTS - Dysautonomia Information Network (DINET) Have vitamin deficiencies including B12 deficiency been ruled out? Vitamin deficiencies can make POTS worse and cause other symptoms as well. Low B12 can cause tingling and other neurological symptoms. Some members here, including myself, have been diagnosed with low B12, and supplements did in my case help me to feel better.

Blood pooling in limbs, which can be a symptom of dysautonomia, can cause a mottled appearance of the skin. This list of symptoms may be useful: POTS Symptoms, Diagnosis and Prognosis - POTS - Dysautonomia Information Network (DINET) Has your child been evaluated by a dysautonomia specialist?

Have you been evaluated by as specialist in autonomic dysfunction? Have you done orthostatics--even informally, to see what your hr and bp are doing lying and standing? While exercise intolerance is quite common I would say it is typically a great deal more severe than you describe. However, there is a wide range of symptoms in autonomic dysfunction.

I would just add to the questions from Pistol--have you been tested for vitamin deficiencies--such as B12 and D--and also iron deficiency. These would not necessary cause dysautonomia but could make it worse--according to studies and also experiences of members here, including myself.

I agree that the most important thing an ER can provide (in my experience) is IV fluids. Of course that is assuming the patient has a diagnosis of POTS. I think understanding that orthostatic testing (hr and bp lying/sitting and standing) that might suggest autonomic dysfunction. When I was undiagnosed this was never investigated (at ER or by my GP at the time). Even tho I complained that my heart was racing when I stood. I think most drs do not understand how totally disabling severe POTS can be. So they see a patient in distress and labs etc look normal so they assume anxiety is the problem.

Oh no. I am so sorry you aer in a bad flareup. I get both severe fatigue and weakness if my flare up is bad enough.

My guess is if you've had symptoms for 10 years and they have not worsened it's not cancer. However, you absolutely need to have these symptoms investigated. I was diagnosed with colon cancer in December. No symptoms. It was found on a routine colonoscopy. I am feeling extremely fortunate it was found at an early stage when still treatable.

What I have learned is that it is possible to do things remotely or outdoors that in the past absolutely had to be indoors and in person. In general I feel I have learned more about flexibility and what is necessary in life and what is not. Truthfully in some ways some things are going to change for the better as a result of the terrible pain and suffering so many are going through right now. But in other ways, there is going to be very long lasting damage. And too much loss. HCD77--so glad you did not get sick. Yes I think going to indoor salon may be one of the more risky activities. The person who has cut our hair for decades has come to our house and cut outdoors w masks (not doing color or anything except cut). Still felt risky but not comfortable going into a salon.

I get any and every vaccine. I will be getting the shingles vaccine soon due to my age. I have never had an adverse reaction and to/for me the small risk of an adverse reaction is preferable to getting sick. When I do get sick, even with a bad cold, I get a POTS flare up that lingers for weeks. With COVID, there are just too many unknowns about long term problems, not to mention short term complications. If Dr. Fauci gets the vaccine, I am getting it too.

If you know Dr. Rowe perhaps he could refer you or make a recommendation for someone else who might see you sooner? I think it depends on what you are looking for how long you may have to wait.

27 bpm is awfully close to the official definition of POTS. If you have symptoms too, it's hard to understand why this would be dismissed. My EP has always said dysautonomia is ultimately diagnosed based not simply on TTT but also symptoms (and of course ruling out other conditions with other testing). I don't meet the diagnostic criteria for POTS every day, I don't think that means I have POTS on some days and not on others. Can you keep a record of hr at home to share with this next specialist?

I have had joint pain and GI disturbances (heartburn, general indigestion, nausea) with POTS flare ups. And I can say from moderating this forum for many years that this is not unusual for POTS patients.