Pistol

@MikeO How are your symptoms? The numbers are good, but how are you feeling, and are you still passing out? For me the pivotal point at which I realized that I am doing better was when I stopped passing out.

@MTRJ75 I think you are onto something, but your presentation cracks me up!

@JennKay do you mean crying as in sobbing, or more the teary eyes? I often get teary eyes to the point that tears are running down my cheeks when I first get up in the morning. I do believe that this has something to do with the ANS, although I have not yet pinpointed what exactly is causing it. I imagine it could be from sympathetic activation, meaning it could be part of the Fight-or-Flight response, but that is just a speculation.

Yes, when I was at my worst I found it tempting to "wallow in my misery", and that can easily lead to us making our illness all-consuming. But as you mention - keeping the glass half-full and keeping things positive can keep us grounded!

@Sarah Tee thank you so much for sharing this information with us! No doubt this took a long time to research, so it is wonderful that you can share it! Very interesting indeed!

@Sarah Tee this thread is so funny to me, and you are spot-on with your observations about nurses! Before getting sick I was an RN in a hospital and whenever I watch hospital shows I cringe, because they are NEVER like the real deal. And as far as I know POTS does NOT cause heart attacks, unless the Film studio sponsored a brand new study ...?

@MTRJ75 What is your theory? I would be interested in hearing about it!

Yes, @beccaj10 I experience irritation and "a short fuse" at times when I am in a flare. It seems to correlate with the times I have overdone things, or overreached my limits. And Yes - I too want to be alone at those times, simply because I need to calm down my nervous system! As for the blurred vision - I know of other persons that have dysautonomia and experience the same thing.

This is actually a "normal" response of the body to counteract the sudden loss of fluids from diarrhea and/or vomiting. When there is not enough fluid in the vessels the heart has to pump faster to distribute the thicker fluid through the body, which then also requires more pressure to push the thicker fluid.

Oh, my dear @Sarah Tee, how often I wished for this place! But in all reality - even IF we could go to a place like that as soon as we return we would be in bed again! ☹️ However - to comment on your question: whenever I find myself bedridden I try to do the following steps: 1) Exercise in bed and try to get up every 30 minutes, no matter how hard it is. 2) Entertain myself with whatever means possible ( reading, movies, knitting, painting etc ). 3) Eat a healthy and diverse yet easily digestible diet. Frequently rather than in one sitting. 4) Fluids, however you can get them. 5) Talk! This may not be easy for everyone but it does help to keep depression at bay! 6) Remember that it is just a Flare and occupy yourself with planning ways to fill your future "Better Days". And believe me - they always come!

@Machair I can only tell you that I experience the same thing at times. I have HPOTS and have a recorded history of having overactive bowels during high-adrenaline times, and also suspected gastroparesis during other times ( as per gastroenterologist ). The only thing I know to do is to adjust my eating habits to whatever "mood" my body is in at any given time. And what helps me the most on any day is avoiding large meals and carbs, but instead eating six to seven snacks a day. This has helped with the GI symptoms as well as the HR and BP problem ( in addition to meds and other treatments of course ) .

@diamondeyes Over a year ago I was hospitalized with COVID pneumonia and my D-Dimer was elevated. Directly following the hospitalization I developed a severe auto-immune reaction ( reactive arthritis and vasculitis ) as well as sepsis. I was under the care of an excellent rheumatologist who continued to monitor my labs even after getting better. My D-Dimer stayed elevated along with my inflammation markers for quite a long time but dropped to normal once all of the inflammation was gone. When I researched this I read that D-Dimer is often elevated during inflammatory events despite the absence of clots, and the rheumatologist conformed this. Currently there is more and more proof that dysautonomia can be related to problems with the immune system - whether it is auto-immune or from the innate immune system is unclear. So I am wondering if maybe in your case the onset of POTS and the elevated D-Dimer could have been triggered by an infection or inflammatory condition? Maybe you had COVID and did not know it? I am just speculating, of course.

@supertired I would ask the infusion company about needles, they may be able to order specially made ones. I also use an infusion company for IVs and am allergic to silicon, which is in most supplies. When I asked they were able to send me silicon-free dressings.

@bizbiz I experience the exact same things when I am "done for the day"! The only thing that may help me out at that point is lying down and wait until I get better!

@Sarah Tee You are brave for trying it, and courageous to stick it out! Thank You for sharing your experience! --- Personally I would be careful after developing the rash. Skin rashes and itching are listed under the precautions for albumin infusions and need to be reported immediately to the prescribing physician. If you are planning another infusion I would definitely make them aware of this reaction before the infusion! Even if it was unrelated to the albumin - it COULD be an allergic reaction to it, and that can be fatal!

That completely depends on WHY he faints, and it sounds like they have not yet found the reason.

@Steveno welcome to the forum, and I am so sorry your Dad and you have to go through this! Syncope ( Fainting ) can have many causes, dysautonomia being one of them. Often dysautonomia is triggered by a viral illness and can cause fainting. However, even if it is dysautonomia it can have different mechanisms and causes. Dysautonomia syncope can come from a sudden drop in BP upon standing, an increase in HR upon standing or even a decrease in circulation to the brain. If you tap on the Information Resources tab on the top of the main page you will find a directory of articles and informational sites, click on NCS to find more info about dysautonomia and Syncope, and also under the POTS tab there will be some mention of fainting. Another possible cause could be an irregular heart beat which does not have to be related to dysautonomia. Have they done a holter monitor on your DAD ( a device that is worn for several weeks that records the heart beat and alerts the patient and the doctor if there is an arrhythmic event )? A good cardiologist should do this anytime there is syncope. I had fainting and seizures from dysautonomia and it took several years for the doctors to pin point the cause. It was found to be related to dysautonomia after I had an event while hospitalized on an Epilepsy monitoring unit. They hooked me up for days to both an EEG recording device and a heart monitor, and a faint proved the cause to be dysautonomia. I am not sure where you live but I would try to find a syncope clinic. If you live in the US you could start by contacting your State University hospital or any major hospital near you. You can ask his PCP or cardiologist to be referred to a syncope specialist, or even check with his insurance. You can also click on the Physician tab at the top of the main page and see if there is a doctor listed near you, this is a list of doctors world wide that see dysautonomia patients. I hope they will come to the bottom of your Dad's problem soon, and please make sure he is safe! Syncope itself is not harmful, but the injuries we sustain from the falls can be! Please keep us informed on your Dad's progress!

@MTRJ75 I have had several EGDs that required NPO status without any problems, but they always gave me IV fluids prior to the procedure. I have done fine with colonoscopies as long as I got IV fluids as well. I did have one of those send-out tests instead of a colonoscopy before but that will not apply to you if you have a family history of colon cancer. The only thing I know they always d for me ( because of my dysautonomia diagnosis ) is IV fluids, so you may want to suggest that prior to the procedure. Best of Luck!

@Sea otter my sister, who also has dysautonomia, suffers from eye symptoms such as you describe. She was told they are from dysautonomia, but she also has a condition where one eye slightly points into another direction ( I forget the name, but its a real thing ). She wears glasses that dim day light to avoid overstimulation. When she reads or is on the computer for a while her vision gets blurry and the eyes "zone out" as you say. All of these symptoms worsen when she gets overstimulated, and I think it coincides with sympathetic overcompensation causing an adrenaline dump. That is my theory at least. The Fight-or-flight response directly affects the pupils by dilating them to allow more light to enter, so this is a possible reason for vision problems when the SNS is activated

@Misty4280 I do become very ill ( including nausea, tachycardia and extreme fatigue, even passing out ) when I push myself, despite being disabled, homebound and optimally medically controlled. I could not even imagine doing anything for seven hours, seated or not ( well, definitely not standing up ). One thing that you may not be considering is that many dysautonomia patients respond with extreme stress to ANY overstimulation - which can involve talking. listening, noises, lights, standing - sitting - standing, even reading! I do not know your situation, but could you possibly ask your employer to be able to work less hours in a day, and maybe not at certain hours? Maybe you could do the work one hour at a time, take a break, and do some more?

@Bailee that is correct. They need instructions as to what is wrong. For example Range of motion exercises after knee surgery. Your doctor wrote legstrengthening and conditioning exercises due to POTS - that SHOULD be enough, whether they know what pots is or not. The PT should be able to understand dysautonomia. Either way, the need for therapy is in what your doctor wrote.

@Bailee I was prescribed physical therapy to prevent deconditioning when I was at my worst, and mostly bedbound. The PT at that time was very knowledgeable about the ANS, although he was not necessarily informed about dysautonomia. However - physical therapy is geared towards keeping muscles and joints at their best, so all the Ins-and-Outs of our condition are not necessarily a MUST to know, at least IMO. I learned exercises that I still, years later, come back to because they work to keep me from becoming stiff and lazy when I am not feeling good. Physical Therapy can be a GREAT tool for us to manage our symptoms, whether the therapist knows all of the intricate details of dysautonomia or not.

@Knellie I did have a barium swallowing test done years ago, and I didnt have any problems swallowing the contrast. I dont remember how long it took, though.

@Sarah Tee wishing you all the best for your upcoming surgery! Remember that we take longer to recuperate than Others, so be patient, and be kind to yourself!

My autonomic specialist already knew that Modafinil was not approved for the use in POTS and supplied me with a list of canadian pharmacies where I could fax the prescription to!