Krissy21

Have you ever done a 6 minute walk test? I've done them with patients in the hospital before during nursing school clinicals. Basically you just walk down a hallway for six minutes at your own pace with a pulse ox on and they watch your o2 saturation and heart rate. In my experience, if the patients o2 dropped to 88% or lower they would repeat the test with oxygen on and if they improved, they qualified for home o2. Not sure if this criteria is different for different insurance companies or not. Maybe you could ask your doctor about this if your stress test didn't give them the info they need. I hope you are able to get the o2 that you clearly need.

I agree with Raisin, I was also happy with my testing at the Cleveland Clinic. I had a TTT which showed POTS and NCS. No catecholamines we're drawn for me either. I also had a QSART, autonomic reflex test, and a blood volume and hemodynamics test.

Anything lower than 90/60 is considered hypotensive but it depends on the person how low they can go before having symptoms or passing out. I think I was at 84/48 on the tilt table when I started to lose consciousness.

Yes I've had a lot of improvement with exercise. My doctors strongly recommend exercise for POTS patients because it helps improve symptoms in addition to all the other health benefits. I use a recumbent bike and resistance bands for arms and legs. I also do some ab workouts. I can do this and walk on flat surfaces with no problem but stairs and steep hills make my heart rate go up too high. I also have trouble with weight lifting because bearing down makes my heart rate drop suddenly. I still need a beta blocker to control my high heart rate but my blood pressure is much more stable and I have less blood pooling in my legs. I try to exercise 3-5 times a week but it depends on my schedule and how active I've been that day.

Smish, I have taken both for POTS. I currently take atenolol 25 mg twice a day. It does a great job controlling the tachycardia and doesn't make me depressed. I took propranolol in the past. It didn't make me depressed either, just tired. It worked well for a while but I was eventually taking it 3-4 times a day because it would wear off. The atenolol is usually only prescribed to be taken once a day but my dr has me taking it twice for more even heart rate control. It gets out of control if I let the medication wear off at all. Different meds work different for everyone but atenolol is prescribed for POTS. ask your dr about trying if out and if it doesn't work for you, you can always try a different beta blocker. Krissy

If you have high or normal blood pressure, having a lot I salt is bad for you because it causes or worsens high bp. Then high bp leads to heart disease and all kinds of other bad things. But for people with low bp, like many pots patients have, salt is a good thing. Like Becia said, it raises bp by drawing some fluid into your vascular system. The amount of salt that we consume cannot harm us like ocean water can. Ocean water is about 3.5% sodium. So in 1 liter of ocean water there is about 35 grams of sodium. This much sodium is dangerous because it essentially draws all the fluid out of your cells into your vascular system. That leaves your cells with no fluid to function with and could kill you. Compared to a liter of normal saline that you would get in the hospital, that 1 liter bag has 9 grams of sodium in it. So even if your doc is telling you to have 5-10 grams of sodium a day (people with normal bp should have no more than 2.5 grams a day), you're not even coming close to the amount of sodium in ocean water. So no worries about it harming you.

My doctor kept me on my beta blocker too. He wanted to know how I would react while on it. I still tested positive for POTS and NCS and he said I would have felt worse and would not have made it very long had I stopped taking it.

I'm just guessing here, but maybe she meant that it was negative for neurocardiogenic/vasovagal syncope since your heart rate didn't drop and you didn't pass out? When I had my tilit table test I was diagnosed with both POTS and NCS. My heart rate went from 72 laying down to 116 upright and they said I was positive for POTS because it increased more than 30 bpm. Then about 10 min into the test, my heart rate dropped from 115 to 48 instantly. At the same time, my blood pressure also dropped from 102/68 to 84/48. I was just barely conscious at this point so they lowered the table and ended the test. Because of the drop in BP and HR, I was also positive for NCS. I was taking propranolol when I had the test done and they did not use the medication to induce symptoms. My doctors told me that the only criteria needed for a POTS diagnosis is an increase of 30 bpm when standing so I would clarify your results with the doctor that ordered the test.

I take a beta blocker (atenolol) to control my tachycardia. I take 25 mg twice a day (8am and 8pm). Without it, my resting rate is 95-110, standing is 130, and walking for more than a few minutes and walking up stairs it's 170+. With the atenolol it's in the 60's resting, 90's standing and walking around and about 110-120 with exercise. Exercise was pretty much impossible withouth the medication.

I have had a blood volume and hemodynamics test done that showed mild hypovolemia and moderate to severe blood pooling in my legs. I can't remember the exact numbers. All my blood counts have always been normal. I've never had my renin/ angiotensin/ aldosterone levels tested. I drink and urinate a normal amount.

NSAIDs decrease the beta blockers ability to reduce blood pressure. So if you're not using the beta blocker for this purpose, it's fine to take them together in my opinion. I take them together as I am on the beta blocker to lower my heart rate, not my bp. I've never had any problems with this or had any doctor tell me not to combine them.

I have lost about 10 lbs since my pots started and now borderline being underweight. I weigh about 110lbs now but I struggle to keep it there and am not able to gain any. I try to eat small frequent meals that are high in protein and calories. Milkshakes are lifesavers. I hydrate with regular Gatorade as well to get the extra calories from that. Some days I am hungry non stop and others I have no appetite at all. I was told the same thing that Jackie M said about the sympathetic nervous system and fight or flight response affecting appetite and digestion. Basically, the autonomic nervous system has two parts, the sympathetic and the parasympathetic. The sympathetic is your "fight or flight" response so blood is directed away from the digestive system and to the muscles, heart, lungs, etc. Your heart rate increases while digestion slows down. The parasympathetic is your "rest and digest" response. The opposite effect happens here and you are able to digest food better. I was told that people with autonomic dysfunction spend a lot more time in sympathetic mode. This is why we have a harder time digesting food and actually feeling hungery since our bodies are not in the right mode for eating and digesting food. I hope that explanation makes sense.

Yeah v-tach is when every beat is a PVC. In other words, the heartbeat is starting somewhere in the ventricle instead of the SA node in the atria like it should be. So yes it feels like a constant flip flop with no normal beats in between.

It pretty much just feels like a bunch of PVC's in a row. The longest run I've ever had was only 10 beats of v-tach. Scary but harmless. You could have had a run of SVT like Jennifer mentioned. I had runs of SVT pretty frequently before I had an ablation 2 years ago. It does seem similar to what you are describing.

I get this too. I've had short runs of nonsustained v-tach caught on an event monitor. Dr says nonsustained v-tach is harmless if you don't have any structural heart problems like valve disease or cardiomyopathy.

Everyone is different, but exercising has helped me improve a lot as well as a few others on this forum that I've seen. I use a recumbent exercise bike for my cardio/ leg strength training. I bought one about a year ago and it is so much more convenient to have one at home. I believe it is what has helped me improve the most. The only thing exercise hasn't helped is my high heart rate, I still need medication for that.

My symptoms started at 16 and slowly got worse until age 21. Then I seemed to turn around after seeing a dysautonomia specialist and finding a treatment plan that works for me. Now at 22 years old I'm definitely better than I was a year ago but not 100% back to normal either. My doctor said that 80% of his pots patients do get better by their late 20s so I'm really hoping I'm part of that 80%. My BP has stabilized and I've been able to cut back on the salt intake in the last few months but I still really rely on a beta blocker to keep my crazy heart rate under control.

I completely understand how terrifying it is. I am still afraid to work out alone since I have passed out during exercise before. I get the chest pain and palpitations too if I push too hard. I've had three exercise stress tests and the doctors say my heart is fine and it won't kill me so I just try to push through it. It does get easier with time, but I understand where you're coming from. For me, this pots stuff is hard enough to deal with in college, I can only imagine how exhausted you are with 3 kids and a full time job on top of the pots. I hope you can change your meds around and find something that works and doesn't add to the fatigue.

Hi, welcome to the forum! I think I can help you with some of your questions. Like you, I also had pots and atrial tachycardia. I also had an ablation that got rid of the atrial tach but I'm still left with the dysautonomia. Beta blockers can definitely make you tired but this can improve after being on the medication for a while. You may also need to try different beta blockers to find one that works best for you. For example, metoprolol never worked well for me. Too many side effects and didn't control my heart rate enough. But, for me, atenolol works great and the side effects are minimal. Exercise is very important for pots patients. It has helped me improve a lot. I had to start very slowly at only 5 min on a recumbent exercise bike at a time. Now I can do 30 min on the bike. Doing an exercise that involves sitting down, like a recumbent bike or rowing machine, can make it easier. Feel free to ask as many questions as you want. There are a lot of very knowledgable people here for help and support. Krissy

I had mono when I was 16 which is when my symptoms started. However, they progressed very slowly over time instead of happening suddenly like typical post-viral pots. I was officially diagnosed at age 20 by my EP and he referred me to a pots specialist. My symptoms continued to get worse until about nine months ago when I was finally able or see the specialist and get on a treatment plan that has really helped. Now at age 22, I'm feeling much better. Definitely not 100% but I am improving.

Hi Jennifer, I have gotten the flu shot every year, including this year, and have never had problem with it. I also have POTS and arrhythmias and the shot never makes my symptoms worse. I am required to get it to work in the hospital but my doctors also encourage me to get it. I've never had the flu but I can imagine it would make dysautonomia symptoms much worse. Hope this helps. Krissy

21 now, 16 when symptoms started

I had results very similar to yours and they diagnosed me with both POTS and NCS. I'm not sure why he didn't diagnose you with POTS since your heart rate increased so much.

You're welcome! I'm glad I could help. I hope he can give you some answers about what's causing your dysautonomia and start some sort of treatment to help you feel better.

If you are willing to travel to Cleveland, OH, the Cleveland Clinic has several doctors that specialize in dysautonomia. Dr. Shields is a neurologist that specializes in dysautonomia. I have not seen him personally but I have heard good things about him. I see Dr. Jaeger who is an electrophysiologist that specializes in dysautonomia. I have been pretty happy with him so far. I have had all the autonomic testing done there and have a treatment plan that seems to be helping. I still have some symptoms but no where near as bad as they were a couple months ago and my blood pressure is under control now.