Pistol

@Pattie I actually think that compression underwear could be superior to abdominal binders because they also cover the pelvic area as well as the buttock muscles. If you think of gravity - this area would serve as a "cup" to hold all the volume. So if we compress the entire lower trunk it should also prevent more of the pooling.

@Sarah Tee I "suffer" from all of the above also, but in my case I am able to maintain a healthy weight because I do not eat three meals a day but rather eat six small meals/snacks. I cook extra on good days and freeze in small portions. I also avoid carbs with meals and eat protein and veggies for meals. I do the carbs as my snacks - especially pretzels and crackers. Nuts, cheese, whole grains, fruit etc are good snacks for me also. AND - a big one - I avoid sugar. Also - I buy healthy low fat frozen meals for days I cannot get off the couch, that is an easy go-to. I hope this will help you achieve your goal - keep at it! You may find that your upcoming surgery may help you also. Maybe you could ask to consult with a nutritionist while in hospital?

@Sarah Tee I am really not sure how they have been tracking cases of POTS. But I know that now - here in the US - POTS has a ICD code, that means that anytime someone gets that code as their diagnosis they can "count" that person. But then there are always the many people that dont have a diagnosis, or don't even know they have POTS! There are so many people that have mild to moderate symptoms and just cope. Therefore I DO believe POTS ( and other dysautonomias ) are much more prevalent then we think.

i would like to mention that according to the NIH there are 500,000 to 1,000,000 people diagnosed with POTS in the US. that is 0.2 % of the population. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7046364/#:~:text=The prevalence of POTS is,United States have the disorder.

@MikeO Well, I guess I should just stop all my meds and find out ... if you dont hear from me in a while you will know why ...

Well, I achieved SOMETHING - yesterday I had a "bad" day, with pounding heart, tachycardia etc. Went about my business. This morning I realized that I had forgotten my am meds ... well, I did WAAYY better than I thought I would have ! I have not went a day without meds in many years!

@Derek1987 Was this physician aware of your history? The faintings, the fatigue. the exercise intolerance? Does she expect you to stop all of your other meds and add those new ones, or does she want you to stop your other meds? I am not in a position to question any physician - but IMO this is a bit bold of a statement, even for a specialist.

Have you looked into NCS - neurocardiogenic syncope? It is a dysautonomic dysfunction. If you check under the information tab on the top of our homepage you can find some info on this.

Dear @kmichaelson here is an article and a excerpt from it explaining that there are very typical changes in a EKG related to hyperkalemia ( high potassium ). https://emedicine.medscape.com/article/240903-workup#:~:text=ECG changes have a sequential,%3B and ST-segment depression. ECG changes have a sequential progression, which roughly correlate with the potassium level. Early changes of hyperkalemia include tall, peaked T waves with a narrow base, best seen in precordial leads ; shortened QT interval; and ST-segment depression. With the fact that you had a syncopal event, EKG changes and low BP it would have been realistic to take you to the ER for evaluation, blood work and yes - IV fluids.

@Sea otter from what explained to me is that POTS is actually quite common, but you have to understand that there are different types of it. Often it can show up in teenagers or young students in college and eventually they get it under control, or it even goes away for years. Then there is POTS triggered by certain events, like pregnacy, illness or surgery. POTS that is triggered by EDS obviously would be relatively common, since EDS is also common. HPOTS is a rare type of POTS because - in addition to typical POTS symptoms - it has additional characteristics, such as elevated BP and cold hands and feet, tremors etc from excessive vasoconstriction, as well as elevated norepinephrine levels. As per literature only 20 % of patietns have this type of POTS. And - in my case - HPOTS seems to be genetic, since three generations of women in my family have it. There is also POTS caused by SFN, where the autonomic nerve fibers do not work properly or are even missing. That is rare. And then there are all the people that have all of the POTS symptoms but lack the tell-all symptoms pf tachycardia. They suffer everything POTS patients experience except the tell-all symptoms of tachycardia. So they usually just get a vague diagnosis, such as autonomic dysfunction. No doubt this is just the tip of the iceberg, and there are more categories for POTS-type dysautonomia. I will have some digging and find out about all the sub-types!

THAT is NOT a small achievement! 👌

@Abe Whenever I hit my Low I wallow in misery for a while and then I pick myself up and think about all the good things that are in my life. Essentially I count my blessings, literally. Sometimes it is simply the realization that there are birds singing outside and I am able to enjoy them. Thinking positive is a great medicine!

@Sarah Tee I second @MikeO in this statement. Throughout my journey I have learned that we have to be PATIENT with any new meds, or even adjustments. Consider that we are trying to re-establish new ways for our ANS to work stable. This takes time. Switching from one med, or dosage, to another too rapidly defies the purpose of stabilizing an out-of-control ANS. Now - if there are serious side effects we should always stop the medication and seek emergency help, or call the prescribing physician. But after many years of trial-and-error with treatments for HPOTS I have learned that - for me - it is best to start low and slow, and give my body a fair chance to adjust.

@Looking_for_light I would like to remind you that this forum is not a professional forum, so we are just patients and care takers that share our experiences. The questions you ask may be better addressed by physicians, or specialists?

@Macho319 thank you for the link!

? Now you got me confused.

@MikeO Yum - a roast and some nuggets! No, its a really nice sighting! I used to live in the country and saw and heard them often.

@BettyD Is it correct that the difference in tachycardia from IST is that the resting HR is elevated, in POTS it only occurs while upright?

@Sarah Tee Are you wearing compression hose? That may help with the edema

@Looking_for_light @Sushi I had several big and also minor surgeries since onset of HPOTS 15 years ago. I had several anesthesia complications occur during these surgeries, including seizures ( I have autonomic seizures from rapid vasoconstriction causing sudden loss of circulation to the brain ) as well as high and low BP. All of these complications were managed well by the anesthesiologists, who ALL were knowledgeable on POTS. This is because the anesthesiologist that did several of my procedures educated herself on it and posted instructions in my chart. Once she did not want to put me under because I was very unstable but needed the surgery, so she did a spinal while I was supine ( usually done sitting upright ) to avoid a sudden drop in BP. She also managed another time when my BP dropped dangerously low by administering appropriate medication. All this was documented, so the other anesthesiologists are aware. It is also noted in my chart to administer IV fluids before and during surgery to prevent complications.

@Looking_for_light there are several articles online regarding this subject. here is one that is very detailed https://ispub.com/IJA/27/2/13170

@MaineDoug yes, IMO that would be an indication for a port. There are other long term IV access methods also, such as a PICCline that gets inserted into your antecubital ( elbow ) and threads up to the subclavian vein. --- Whenever I needed surgeries that required me to be npo they would always have me come in at 6 am and immediately started fluids, even if the surgery was later in the day. I know knee replacement surgery takes a lot of rehab later, so I wish you the very best. All my friends that had it done were like brand new people afterwards because of the improved activity level and improvement of pain, may it be the same for you! 🙏

@Sarah Tee Yes, and Yes. Both apply to my case. Since my SNS overcompensates for BP fluctuations I have ( always had ) problems with cold feet ( Raynauds diagnosis ) as well as Prinzmetal angina ( constricted coronary vessels ). Both these diagnoses were confirmed by angiogram and heartcath. The excessive constriction causes me to not have adequate bloodflow to the brain, and the CCB in addition to IV fluids improves this.

@MaineDoug When compared to how often I ended up in the hospital before the port ( hub ) I am so much better! I have had a port for the past five years and my POTS related hospitalizations since then are three. Compared to every 6-8 weeks before! The surgery is a minimal procedure and you might be slightly sore afterwards. I have a nurse come once a week to change the needle ( this needs to be done in a sterile technique due to the high risk of sepsis ) but I do the infusions myself. Sometimes I need a bag every 2 days and sometimes every 4 days. Now, there are risks involved. My doctors, including my wonderful POTS specialist, were very reluctant to let me have a port because of the risks of infection ( the port has a tube that goes right up to your heart, so if it gets infected you could die ) and blood clots. I am on my 5th (!) port in as many years, they are supposed to last 5 years each. Everything that could go wrong wiht one happened to me - the first one was inserted sideways ( boo to the surgeon ), the second one malfunctioned, the third one got infected and I ended up with sepsis and the fourth one clotted off. This is highly unusual though. Despite the risks in my case the benefit clearly outweighs the risks. My quality of life would be pretty much nonexistent without the IV fluids since I was bedridden and passed out and even had seizures several times a week. That is dangerous too, so now I am able to have a life. What is the reason they are considering one for you?

@Sarah Tee when my specialist first prescribed diltiazem he chose it because it comes in low doses that can be divided over the day. I started with 1/2 of the lowest dose twice a day ( lowest dose is 30 mg ) and once we saw that I tolerated it he increased the dosage slowly over several months. Once I hit my optimal dose ( 180 mg ) he switched me to the extended release and I only take it once a day. Noteworthy is that in the fall ( september ), when the weather changes, my BP starts to creep up, so I increase the dosage to 240 mg, and I go back to 180 mg when spring comes. The months that I need to change dosage are always the same - September and may.