Pistol

@Outaker - I too used to get these rushes, even leading up to seizures. In my case medications and weekly IV fluids eliminated them as well as limiting activity and overstimulation.

@outofadream - I too suffer from severe GI symptoms from POTS. At my worst I had espophagitis, Barrett's esophagus and duodenitis from it. I am now much better - once my POTS got somewhat under control so did the GI issues. What has helped me in the past - in addition to PPI twice daily, which I still take - was GI cocktail ( Phenobarbital, Mylanta and viscous lidocaine ) as needed, Carafate suspension, several nausea meds and - most importantly - dietary adjustments. I eat 6 snacks day instead of 3 meals, avoid all raw fruit and veggies and all acidic foods. Since then I had 2 EGD's and all is well, my GERD has greatly improved. I hope you get better soon - I know how hard it is to live with these symptoms!!! Be well.

@JimL - regarding the vasculitis: my M-I-L has autoimmune issues ( Sjogrens ) and lymphoma and was just diagnosed with this form of vasculitis: https://en.wikipedia.org/wiki/Henoch–Schönlein_purpura It is caused by autoimmune process. I thought maybe this could be of interest to you?

@KiminOrlando - I know of other people who react this way to Benadryl, they become restless and insomniacs on it. Not sure the reason for that, so you might be right with the gene theory. Sorry I can't be of more help.

GREAT NEWS @Sushi! nd thank you for the update, I am sure this will be of interest to a lot of other people suffering from MVP. I hope your improvement is permanent and your recovery fast!!!!

@firewatcher - I am glad you pointed this out - it is NORMAL for the HR to go up with exercise ( and actually a desired effect ). The problem comes in when our HR goes up b/c we simply stand up.

Dear @whoami - this is a question you need to ask your doctor. All people experience changes in BP and HR with position changes, that is normal. It is also normal for your BP and HR to change during the day as you go about your business. The problem with POTS or NCS is that when we are upright we experience severe symptoms b/c our bodies are not able to adjust to the upright posture. So - to answer this question: Yes - it is possible that your symptoms are something other than dysautonomia. But the only way to determine that is by seeing a physician experienced in dysautonomia and undergoing testing required to diagnose it.

@whoami - allergies do not equal MCAS. Here is a link explaining MCAS: https://www.mastcellaction.org/about-mcas

@RecipeForDisaster - have your doctors ever considered appetite-stimulating meds?

@whoami - I sympathize with your feelings. What you experience is grief and everyone deals with that differently. The most grief I experienced was the death of my father and loosing the ability to work from POTS. I definitely went through all of the phases. Especially when you go through grief for the first time it is important to talk bout your feelings. Have you considered seeing a counselor? I was lucky enough to have a very supportive family and group of friends who listened to me and guided me through it. Being alone makes it a lot worse. I do believe that any stress - physical or emotional - can set off POTS symptoms if you have dysautonomia. I also believe that depression and anxiety can mimic some dysautonomia symptoms which would be another reason to consider counseling. These feelings are real and understandable and only show that you are a human being. be well!

@whoami - they all look pretty! Do they get along or do you have to keep them separate? --- I have a friend who had an iguana and took him on walks on a leash!

I agree with @Scout

@whoami -we get freezing cold winters here - I live in eastern USA at above 3000 feet elevation, Appalachian mountains. We have soooooo many snakes here - including Rattlesnakes and Copperheads and TONS of non-poisonous snakes. We also have watersnakes ( very aggressive ) and little ring-neck snakes. Last year I saw a snake give live-birth!!!!! It was horrible - but to someone who likes snakes it would have been awesome.

I have several garder snakes under my house and a toad under my front steps, as well as a black snake in my shed and several newts from my creek. They are all wild - and I don't name them because I don't like them!!!! I also have seen very rare blue mountain mud crabs in my creek - they are federally protected, so we don't touch them.

@whoami - the diagnosis criteria for POTS can be found in this link If you do not meet these criteria it may not be POTS but a experienced physician should be able to determine that. Hopefully they will be able to pin point what is going on with you!

Before proper treatment my HR would be 160 - 180 just standing while on monitor - no arrhythmia, just sinus tach. They also caught several syncopal episodes and seizures while on monitor - all just sinus tach before and during the episodes. I had an implanted loop recorder once to see if my HR ever drops ( so I could get a pacer ) but it never did, just always sped up.

Hello @Janesays - I am so sorry you are dealing with this again! First of all - syncope IS true fainting. I sympathize on several issues you brought up in your post. First of all: whenever I overdo something I will pay by hving a relapse, sometimes full-blown. You mentioned you did not eat and then ate too much - Diddo! Although I rarely faint anymore I just had that happen to me. I had not been eating a lot and then had Pasta and Pizza in one meal and after 30 minutes passed out. --- I am suspecting that by being out all day and enduring heat, possibly not drinking enough, you my have gotten a bit dehydrated. That alone will cause tachycardia as well as low BP ( which will make you feel like fainting ). --- My experience with this is that REST and HYDRATION are the only way to get over this. Both of those will improve the tachycardia. And then - once you feel better - slow reconditioning. It may take a while but it works. Be well! --- And thank you for pointing out that we CAN improve!!!! Best wishes for speedy recovery!

@bombsh3ll - just a really bottom-of-the-line one I got online for cheap. I did not want to spend too much money before trying it out but it is good enough for my limited abilities. I started with just 15 seconds once a day but now am up to 1 minute twice a day, trying to increase more than that once I no longer get short-of-breath.

@bombsh3ll - no, I do not do the Valsalva during my exervises since I am still on the lowest resistance setting. I could totally see how advanced rowers might utilize the Valslava to get extra strength for rowing. My machine has 8 settings and I am using #1 - it uses all of my muscles and joints, including core, but without too much effort. For me it is perfect - and I got the idea from this forum!

Thanks @FileTrekker - I miss understood.

@Chiara - here is an older post that deals with visual disturbances and dysautonomia. Maybe it is helpful? https://www.dinet.org/forums/topic/2388-blurred-vision/

@whoami - OI is a SYMPTOM of dysautonomia, not a diagnosis. Here is some more info on autonomic disorders https://www.dinet.org/info/dysautonomia-disorders-diagnostics-info/

@whoami - an echocardiogram simply shows an ultrasound of your heart, it visualizes the structural components of the heart. Like the muscle, chambers, valves etc. It does not exclude or diagnose dysautonomia - it just shows if there is anything structurally wrong ( enlarged muscle, leaky valves - any anatomical defects or changes ).

@yogini - yes, I do the leaning-against-the-wall exercise when I need to prepare for any upright situation. I used to get PT for orthostatic exercises - they could not get me above 2 minutes standing while holding on to something without becoming severely symptomatic. Even after 6 weeks of in-home targeted exercise. But - I no longer take seizures or have syncope, my BP is controlled and I am able to do the rowing machine - all thanks to meds and IV fluids. The exercise definitely has helped my insomnia and appetite, as well as cognitive issues. I think it is b/c of the improved circulation. Plus - I feel proud of myself afterwards!!!!

This is from the internet The normal human body temperature is often stated as 36.5–37.5 °C (97.7–99.5 °F). This article defines fever: https://www.bmj.com/rapid-response/2011/10/27/definition-fever