yogini

This dr should have explained better. Maybe you should have a follow up appt? It sounds like he believes your symptoms; at least He doesn't say you are making it up. My guess is that he doesn't gave bad intentions but just has no idea what to do next. There isn't enough medical knowledge and testing isn't accurate, not just for POTS but for so many conditions. I know this from my experience with a misdiagnosed inner ear condition. What does it mean when a test says it's 75 percent likely that you have a condition? Should be a simple yes or no answer, but no such luck. With no knowledge, there are few drs who will take ownership to help us sort this out. Very frustrating as a patient.

By the way I lost weight too when I tried gluten free for a month!

It sounds complicated - you may want to talk to a dr. Recommended calorie intake would depend on height/gender/size/age/etc. No gluten means limited junk food options (cookies, cakes, etc.), so may help with weightloss. But you could easily measure out the calories he eats now and eat the same number of calories with gluten free foods. I will admit I gained a couple of sizes when I first had POTS. It came off again over time when I got back to a more normal level of activity. If you can improve the POTS it will be easier to resolve the weight, or may resolve on its own...unless you think the weight is causing the POTS, that would be a different story.

I clicked through to the book and it is only $5, so at least not a ton of $. The part about eating certain foods makes me scratch my head, because I see posts about different diets that work for people on the forum that don't fit this description. Different strokes for different folks. No one program worked for me. I do know that when I overexercise/overdo, I get worse. The trick for me has been avoiding cardio, so walking with bursts of intensity would not have worked for me.

It is definitely personal, so your dr will know best. If you are not feeling well, it could be your BP, your POTS or the fact that you are getting adjusted to bystolic. From what I understand, though, bystolic is one of those betas that least lowers your BP. If your dr decides your beta blocker is lowering your BP too much, you may be able to stay on it with another treatment BP.... there are lots of options to boost your BP...like compression hose or midodrine.

do you have a human resources department you can talk to?

I tried it and found it didn't do much

I think there are a ton of people here on the forum who have NCS or a form other than POTS. I researched this condition 10 years ago when I got sick, so I am not up on the very latest. But last I'd heard the treatment for POTS and NCS are largely the same. I don't know whether Dr. Levine's protocol is specific to POTS , but it sounds intimidating to most of us.

I don't have a protozoa. My POTS is about as "simple" as they come. Mine was post-viral, I have improved over time (before trying a sauna) and don't have any co-conditions. I think the sauna helps to relax muscle tightness improves my circulation and makes me fall asleep. I am always freezing cold, so it feels nice to warm up! So the idea may not be as crazy as it sounds.

I have constant neck pain even though my POTS is much better. I wonder if giving the dogs a bath triggered your symptoms? It sounds like you got the headache right after. When I was really sick I had trouble giving myself a bath let alone anyone/anything else... lol!

Alcohol intolerance is a common issue for POTS because alcohol lowers BP and is dehydrating. Most of us need more fluids and higher BP, so many can't/don't drink at all. I wouldn't be worried about a separate genetic issue unless you had any other reason to think you had this issue I didn't drink alcohol for a year or two when I was at my worst because I didn't think it was worth it. Now I can have couple of glasses of wine without any side effect.

Funny, I have started going to saunas too. I was on vacation with some friends in a cold place, and went in and out for a few mins to warm up. I didn't have any problem. I then started going at the gym - working my way up,to longer times. I keep my hair and clothes wet and bring water in with me, so I don't overheat. I put my feet up on the wall so that blood goes down to my head. I do sometimes feel dizzy, lightheaded when leaving but it goes away in an hr or two with no lasting side effects. A handful of times I have spent the afternoon in a sauna/steam bath type place. For the past week or so I was having a mini flare. I had already made plans to go to the sauna with a friend, so I decided to go yesterday against my better judgement. I went armed with extra meds, etc in case I got sick and was actually surprised to leave feeling much better than when I arrived. The worst of my POTS has been behind me for several years. I did not try the sauna until well after I was stable. I still have symptoms and am on a low dose of Paxil. The sauna helps with my circulation, muscle tightness and extreme pain in neck and shoulders. It is also good for my skin. If I do it right before bedtime it helps me sleep. I would have never imagined that going to a sauna would make me feel better. It is counterintuitive and am sure it would make many people with POTS worse, but not me. It just goes to show that there are no "rules" with us.

I am mostly recovered from POTS but when I have a flare up! I have these symptoms. Lots of others here have them too. they don't always mean that you have long term damage. I suspect in my case it is bc not enough blood is going to my brain. This resolves itself when the flare up resolves. The migraines also may be related to your POTS

Dave, doctors and patients are still exploring the relationship between exercise and POTS. Most people seem to at leSt agree that moving around (if you can)) can help with POTS. It also takes time and the right kind of meds. Many with POTS have exercise intolerance. Drs want to encourage you to push thru some of the pain, and get on your feet, and get your blood pumping a little. I think something like 30 mins 3-4 times a week would be a huge accomplishment for many. You may want read posts on the medically suggested protocols, which are considered controversial/aggressive. It sounds like you are exceeding the protocols, and doesn't seem you need to do anything more; you may even feel better if you give your body more recovery time.

It sounds like it could be dysautonomia related, ould be an irregular heartbeat or BP issue. It's good that you felt better right away. Not sure what the weather is like where you are but we had a terrible storm here last night. Earlier in the evening I felt a couple of dizzy spells, and I realized the cause after the storm hit. I often have symptoms before and during severe weather.

High HR was my worst symptom. Paxil helped the best, but I also tried flornief, midodrine and atenolol and they all helped to some degree. What is happening to your BP in general and also when you are standing? Do you wear compression hose? Sometimes it's the combination of meds does the trick. I would not assume that reducing your Beta will mean you can reduce your midodrine. Medicines act together in complex ways, and maybe you just need the combination of 2 meds to feel better - this the case for lots of POTS patients. You can also try other beta blockers; another one might work better for you. I took atenolol for years. The fatigue is the worst feature, but I got used to it over time, and also learned to take it at night so that I was tired at night. A great side effect for someone who can't sleep! Your doctor can advise on what is best.

I would rest/lay down as much as you can and call your dr ASAP. If you were vomitting, maybe you are dehydrated, which can cause a high HR. Try to drink some fluids.

BP constantly fluctuates in healthy people and it's also normal for it to increase with any movement. That is why the 24 HR test is helpful - b/c it shows your BP over a long period of time. I am guessing that your dr was looking at numbers over the whole day and may not have been focused on any one point. When I first got POTS I found it helpful to take BP couple of times a day and write it down in a notebook. I also wore an HR watch every day for years, until I got to know my body enough that I could sense if my HR and BP were off without the machines. Numbers are helpful, but I would encourage you to focus on how you were feeling. You can have normal HR and BP and still feel awful! (or the other way around, be off but feel OK). It's good you are under the care of a leading doctor to help you sort this out.

The number is in the range of normal. What is your baseline BP? You can feel awful with POTS even when your BP and HR are "normal". I had to "practice" going into stores after getting POTS. I would walk in, stay for 5 mins and leave. Same with restaurants, movies, etc. It took a while getting used to all the stimulation. It is upsetting and scary and makes you want to stay home. But glad I didn't. I eventually got used to it and these symptoms went away for me after a year or so even though other symptoms lingered. and hope they will for you too.

Thanks. This is my third time trying to go off Paxil and this has been the easiest time I've had by far...fingers crossed. I am still sleeping well!

I am in the process of weaning off my SSRI. I noticed I am falling asleep and staying asleep much better. I've had insomnia since getting POTS. I didn't start taking Paxil until 4 years into my illness. My POTS has gotten a lot better over time, but the insomnia has gotten worse. I was wondering whether anyone had worse sleep on Paxil/SSRI? (In case anyone is thinking of trying an SSRI, overall the SSRI helped a ton. Even with the insomnia as a side effect, it is totally worth trying)

You can definitely get the flu after getting a vaccine. Vaccine only protects against some strains of flu.

When you get into the higher range it's important to check with your dr to make sure you don't have supraventricular tachycardia (SVT). POTS involves sinus tachycardia which is generally a lot safer than SVT - but you can have both. Sinus usually involves a lower HR. When I ride the bike at the gym and my HR goes to 150 I get migraines/side effects for a few days after. If your HR goes to 300 and calms down after swimming and you feel back to "normal" that's great!

I think it depends on the person, as to whether this is OK or not, so you need to talk to your dr. If it goes away, that is much better than having a sustained heart rate that high.. I would also make sure you are counting your pulse and relying on the monitor b/c the signal can get screwed up. It's interesting, because swimming is in the horizontal position so I am surprised that your HR would get that high from it. I have inappropriate sinus tachycardia, so I get a higher HR from swimming, but not nearly that high. I could see (and have had) a 200 HR when trying the eliptical machine - which is why I don't do it anymore!

Interesting. I am guessing this person is or was a member of our forum. Good for her!