yogini

You may have to experiment a bit. If the doctor told you to take this and it keeps giving you a headache, I would let him know. It's also not enough to drink the water just with your medicine. You will have to drink all day.

I didn't like the taste. Chicken broth works best to keep me hydrated.

I don't disagree - but I'm just not sure the public will get that. These days people talk about the mind-body connection to say that you can improve medical conditions like insomnia and blood pressure through things like yoga and meditation. It implies there is a mental component contributing to the condition. That isn't the case for POTS, at least for me - and many of us are trying hard to fight that misconception.

I agree. It also makes sense - why put harmful chemicals in your body!

The whole 30 diet sounds interesting though! I may give it a try.

There can be many reasons. Sugar and gluten can affect us, but carbs also tend to be filling and pool blood to our stomach. Pots patients are told to limit carbs to help with postprandial hypotension.

Interesting. I wonder if MS or Parkinsons would be classified as a mind-body disorder? I think people generally get that they are physical conditions, not controllable.

Hi Sylvie, It's pretty common for people with ANY chronic/serious illness to have anxiety, depression or other mood disorders. Think about it - it is very emotionally difficult to think about mortality, to lose your mobility and not be able to live like a "normal" person. If you once were "normal" it a great loss. In our case many of us experience this at an unduly young age, where none of our friends can understand it - many of our families also can't understand. We miss school and work and can't take care of our families. We also struggle to find treatment as you point out. But a patient with cancer might face many of these same issues, or a person with Lou Gherig's disease. POTS is no different. I agree there are some chemical and physiological factors in POTS which can contribute to mood disorders. There is unfortunately a stigma to having a mood disorder - but again that is not unique to POTS patients. I hope we can help one another to acknowledge and seek treatment for for our emotional issues without calling our condition a mind body disorder. I hope doctors don't start referring to it that way. It just makes it sound like it's in our heads and can be controlled.

I'm not sure it's helpful for POTS patients to call our disorder a mind-body disorder. To a layperson, it makes it sound like something we can control. It isn't.

Is your HR or BP off when this is happening? Are your arms falling asleep or just weak?

It is awful. No one else can understand what it feels like unless they have a debilitating, chronic illness. Everyone think's we're healthy because we look healthy. Healthy people don't like to think or talk about illness. This forum is really special place where we understand each other and freely share our experiences about being ill. I hate to say it, but I think many of us feel crappy and just suck it up and keep moving forward. The scariness and the ups and downs you get used to over time. If your parents are doctors, could they help you come up with a treatment plain tailored to you? That's really how you get better - figuring out which meds work for you and which exercise you can handle. It takes time and patience, but when you find the right treatment, you can exercise more and be more active and you will gradually get better.

Are your symptoms orthostatic - worse when you are standing? If you have a sustained drop in BP 30 when you stand, that may be another common form of dysautonomia. The symptoms that people have from POTS/dysautonomia overlap with many other disorders - that's why many of us get misdiagnosed. A doctor can tell you best, but if you don't have the orthostatic HR and/or BP issues, you may want to look at other illnesses. Although some people have occasional irregular heartbeats, most people with POTS have normal sinus rhythm. If you hare having palpitations that is probably something to investigate

I had a 24 hour HR/BP monitor when i was first ill . My HR and BP both went very low. My dr told me this was normal. If you think about it, it makes sense - you need less blood flow at rest lying down. When I took oxygen once my HR went low, so that may also be a factor here. It's always good to check with your dr to confirm - especially if you may have other medical conditions besides dysautonomia.

If you have heard really good things about the Dr and he is experienced in dysautonomia, I wouldn't worry so much. Maybe you could call the nurse and ask if any info would be helpful? You may want to write down your history, symptoms and questions -- just so you don't forget when you are talking to the dr. The truth is that your treatment plan will probably take multiple appointments and be figured out over time. You may have some tests and it isn't unusual to try a few different meds before finding the right combo. It is encouraging that you have a dr that other people have wonderful things to say about. There aren't too many of those around!

I have dealt with this issue through beta blockers. A beta blocker will slow down your HR and also help to put you back to sleep. Maybe ask your dr whether this is appropriate, You could also keep a diary of what happened during the day - I found that this symptom happened right before my period, or if I exercised too hard or from dehydration. You can identify and learn to avoid triggers. Also, remember that it is scary but a common symptom and usually not dangerous. Anxiety makes it worse, so it is important to calm down.

I have the acupuncture mat. I like it as s yoga prop but don't think it had helped with symptoms

I buy a brand called better than bouillon (sp?). It is organic and comes in a concentrate/paste. It's about $6 for 30 servings. You just add it to hot water. The best!!!

Lily, I would continue to go with what works for you. Many people have exercise intolerance. Going slow was the only thing that didn't trigger my symptoms. I think many people try exercising hard (for example the Levine protocol) and are disappointed when they can't handle it. If exercising hard doesn't work, slowing down can be a good option. If faster works for you, it might make sense to just stick with it as long as your dr doesn't object

When are you measuring your BP? If after sleeping the numbers you report may not be unusual - hypotension. BP generally drops during sleep. If you just started midodrine and it is not increasing your BP enough, maybe you need to talk to your dr about adjusting the dose? Also, it might not be the right medicine for you. The challenge with POTS is that many of us have more normal BP when sitting or lying down. Midodrine increases your BP in all positions - so maybe your Dr was concerned about the midodrine making your BP too high when you were sitting and lying down.

The biggest thing for me has been to build up to exercising. Pick a very small amount of time - like 1 minute or 5 minute and see if that triggers your symptoms. If it doesn't do it every day, then increase in small increments. This really worked for me. Another big thing when I did cardio/exercise bike was monitoring my HR. Even though I can physically ride at a higher level, I noticed my HR increased too much. I wanted to keep my HR below 120 so stayed at level 1 on the bike. Other things that help: exercising in a seated or lying down position, making sure to warm up and cool down, trying exercise which aren't cardio (like yoga), drinking plenty of water before during and after exercise. I never checked with a dr but have also worn compression hose while exercising and this has helped to keep my HR down.

Organic broth. High salt, easy to drink, no sugar or calories and cheap. Works miracles for me.

Low grade fevers aren't unusual for POTS - I remember it coming up a few times on the forum before. There are many different reasons - some people have co-conditions and others don't. If you're having stomach problems it may be helpful to keep track of what you're eating how much and when you're eating. You may also want to search ld posts for read stomach related issues - as these are common. There is helpful discussion on getting a diagnosis and different dietary changes you can try. Many of us also find that eating smaller meals is helpful, to avoid post prandial hypotension I would ask your doctor about whether it makes sense to take medicine for a low grade fever. I never did.

That's funny - I listen to audiobooks too. I really try to listen to the book but always wind up falling asleep. The doctors tell you not to do anything in bed but sleep, but the audiobook thing really works!!

Did the doctor give you any diagnosis following the TTT? Your doctor can tell you best. I think most people with dysautonomia would have either a sustained increase in HR of 30 points or a meaningful sustained drop in BP upon standing. Does your HR change when standing? The BP numbers you describe don't sound like dysautonomia to me.

You should check with your doctor but what you are describing does not sound unusual. The HR increases with any kind of activity, even for normal people. For people with POTS, the response might be exaggerated. The good news for you is that your HR goes down when you stop the activity -- and it seems to do so very quickly. At my worst POTS, my HR would never restore to the baseline after activity. It can be helpful to monitor your HR with POTS - but there is also the danger of worrying too much about each fluctuation. It probably does not make sense to be concerned about the numbers you are reporting, unless your doctor says there should be a concern. Draven, the fitibit HR numbers are not accurate -- this has been in the news lately. A polar HR monitor with a strap (or another ECG accurate device) would be a better measure.