yogini

Many of us get used to drinking lots of water. If you eat salty foods you get thirsty. I have a large sports bottle with built in straw - I find that I drink faster/more with the straw. I keep it next to me and keep refilling. I probably drink most in the morning and again at night.

What you read is correct. There are crashes with POTS. Usually florinef does not cause a sudden crash and takes some time to kick in, though you could certainly start feeling side effects in a couple of days. I think the most common side effects are increased BP and headaches, sometimes anxiety. Also sometimes it takes a few weeks to adjust to a drug and the strange side effects you are experiencing might go away. But we all react in different ways and if you have diabetes, most people here wouldn't know about that. If you are having side effects, it's best to check in with your doctor or pharmacist.

There are many people on this forum that have NCS/OH - the form of dysautonomia where the BP drops. Sometimes people just call everything POTS because that is a lot easier to type and pronounce than dysautonomia. Most of the advice not his forum, works for both POTS and NCS/OH. As someone else mentioned the symptoms and treatments are largely the same. I don't think you even need to say "I dont' have POTS" when asking questions in a discussion group. That probably just confuses people who aren't familiar with the technicalities.

Each person has different triggers. You may want to try eliminating certain foods and see if it helps you feel better.

I've definitely had HRs as high as you describe, but medication helped a lot with that.

Dysautonomia symptoms occur simply by changing posture from lying down or sitting to standing. IF your brother's symptoms aren't triggered just by standing or walking then it seems unlikely to me he has dysautnomia.

The good thing about midodrine is that it wears off in a couple of hours. My doctor gave me permission to take it as needed - so for example if you are having a spike you could skip a dose if your doctor agrees. Salt should not cause your BP to spike - it works over time. But caffeine can. It's complicated so think your doctor can best help you think it through.

6 weeks seems like a very long time, but in the journey of POTS (which unfortunately is a long one) it isn't that bad. POTS is a real condition. It's not anxiety. There are a lot of uncomfortable weird and scary symptoms, but usually not dangerous, unless your doctor tells you otherwise. I would just try to hang in there til the appointment. Without approval from a doctor I wouldn't change any medications (and birth control pills in particular actually help many people). If she has low blood pressure, drink lots of water and eat salty foods, rest, don't over-exert, avoid things that trigger like stairs. That's the best you can do. The 6 weeks will be over in no time.

If you are that sick and can't go to school I would definitely try to see another doctor who is more experienced in treating POTS. An experienced doctor would surely have ideas of medications to try if you are missing that much school. Personally, if I had stuck to just water and salt I may have never gotten better.

We all have increased symptoms from time to time. A "flare up" is when the increase is suddenly much worse and omens't go away quickly - like if you are sick in bed for several days. Your doctor should advise when to go to the hospital.

Postural tachycardia is POTS. It's the same thing. Consult your doctor but compression stockings help with blood pooling in the legs.

Hi, there is one doctor in France and a few doctors in Germany listed here: http://www.dysautonomiainternational.org/page.php?ID=14

Dysautomia usually isn't a spike but a sustained increase in HR or a drop in BP while standing. It doesn't have to happen every time you stand, but you will see a consistent pattern. 20 point from laying to standing would be considered normal. 30 points or more on a consistent basis is POTS. You may want to check your BP because if there is a sustained drop, that is also a sign of dysautonomia.

Has your friend been diagnosed with dysautonomia? it is important to mention these symptoms to a doctor an get a full cardiac workup. Heart stopping is a heart attack so I am guessing it is something more benign than that. A lot of symptoms happen which dysautonomia which seem scary, but aren't life threatening. You get used to them after a while.

have you tried compression stockings? if you have low blood pressure and a doctor put you on florinef you likely have dysautonomia of some kind.

The known causes of dysautonomia are here. Again it is definitely not caused by diet, although you can improve by eating in a way that doesn't trigger your symptoms. http://www.dysautonomiainternational.org/page.php?ID=150 Candida is a controversial diagnosis: https://health.usnews.com/health-news/blogs/eat-run/2013/12/10/we-all-have-candida-and-its-ok

A poor diet will make dysautonomia worse, but it isn't a cause.

POTS patients can have spikes in blood pressure. Some patients are on the high side - there should be info on hyperandrenergic POTS on the main site. But if you are on florinef that could also be the culprit in causing your high BP. I would ask your doctor if these spikes are something to be concerned about and whether florinef is the right medication for you.

Seizures aren't a symptom of dysautonomia. I went into convulsions once - when I first got sick and I think that my body was trying to bring up my BP. But that is very different from a seizure, like an epileptic seizure. Definitely mention this symptom to your doctor

I can tell you that I took vitamins and florinef together for years. You can also check drug interactions online, but it's an easy call to your pharmacist. Better to be safe.

Electronic heart rate measurements can be wrong. I agree that counting manually the pulse is more accurate. For a POTS I would check her pulse and BP 10 or 15 minutes after standing and see if it is a sustained increase. Does she feel much worse after being on her feet for a while?

It can be a lot of trial an error before finding the right treatment. Your daughter is just getting started. She is likely to feel better one she gets the right treatment. If something like playing the violin is making her worse, she could try to do it sitting down - that is less stressful than standing up. Also if she does it less - like for fewer minutes a day or fewer days a week maybe that would help. Are you measuring her heart rate and blood pressure throughout the day? I am wondering if they correlate with her headaches.

It is not uncommon for dysautonomia symptoms to change over time. I'd definitely touch base with your doctor on the new symptoms, though.

Maybe you could try 1/3 teaspoon or 1/2 teaspoon per day, so that you get some but not all of the effect.

Do you have any kind of diagnosis for why you aren't feeling well and can't get out of bed? How did you get the insurance to give you a nurse/driver? I think it is worth seeing a POTS specialist (particularly someone listed on this website) if you haven't already. Also if you have POTS, many people find that alcohol makes them worse. That might be something to avoid until you figure things out.