JuneFlower

most people who go gluten free will say a month is long enough to see a difference. Not sure about the meat thing. Yogurt is another whole category. Not sure what diet you a re following but good luck. I tried the gluten thing twice but with a family, it is hard. June

Anastasia, OK thanks, It seems you take it primarily to raise your blood pressure. Her neurologist mentioned it in relation to blood volume I think. My daughters pressure is already somewhat better with midodrine and nadolol. But she still has all the problems of POTS-migraines, nausea, abdominal pain, fatigue, insomnia… So I am not sure Florinef will help with all that. Maybe it is still worth a try? June

i'm a big believer in vaccines. I do not think they cause illness. However, people with chronic illness should ask their dr if an individual poses any risks for them. I am not that familiar with the Shingles vaccine. Why are you considering getting it? June

Well the local doctors won't try anything other than what she is on. (Midodrine and nadolol). Both of these help but we have a long way to go. I am hoping a specialist will at least suggest other treatment based on the types of POTS they discover. I don't know what kind she has. Yeah I don't hunk a simple TTT is very useful from everything I've read. But we'll see about the other tests. June

Sorry I can't help as I am also new to this diagnosis (my daughter has it). But I am curious about the Florinef. Do you have any side effects? A dr recommended this and I am hesitant when I read the potential side effects. Personally I would research and find a specialist in Dysautonomia for yourself. A cardiologist or a neurologist is usually appropriate. I think there are 3 types of POTS and one has low blood volume. (I have to read up on this). Welcome! June

Yes I have posted before that we are taking her to Wisconsin to the Children's Hospital. They have a few specialists in POTS there. Hopefully we will get more care. At the very least maybe some understanding of her condition and how debilitating it is. We fly in May. June

Ashley, I'm so sorry. I'm its not as bad as you think. The make up can help too. My daughter only looks bad when she feels bad. It is very weird and sudden sometimes. I'm so excited, her nausea lifted and she is doing homework now!!! June

TCP- thanks for our interest. She has a cardiologist and a gastroenterologist and a neurologist. None of them know much about POTS though. So they each just shrug and say things like, "Once she gains weight, she'll feel better. Or, She just needs to manage her stress". Ugh, Sigh. I know my daughter and she used to love school and she is so unhappy to be home and be sick. June

Amy- thank you. I know this is hard for her and even sometimes I do it because I am so frustrated that she doesn't ever go to school. I know she must have some anxiety about going back and I can't always tell if she is really feeling sick or she is saying it to avoid school. I try to believe her all the time but I don't want to let her school years slip by with no effort. Its a hard balance. She can't even work on stuff at home cause she is so sick. Right now she is so nauseous she can't eat. TCP-yes my daughter also gets red and flushed and warm to the touch. I don't know why. June

It seems a drug like midodrine works by: "Midodrine is a prodrug which forms an active metabolite, desglymidodrine, which is an α1-receptor agonist and exerts its actions via activation of the alpha-adrenergic receptors of the arteriolar and venous vasculature, producing an increase in vascular tone and elevation of blood pressure." It doesn't seem to work on nerves but more on receptors for the neurotransmitters. My daughter is also on Nadolol. This drug slows the heart to allow it to fill properly thereby increasing blood pressure only when used concurrently with Midodrine. This is my understanding of it al. June

yeah I'm not sure what makes my daughter pale and sick looking. But people still tell her that her problems are all in her head…Thanks everyone June

Rachel-I'm so appalled that even a specialist clinic would treat you and your son in such a deplorable way. But I am not surprised. As I wrote I just came front the second doctor who said straight to my daughter's face that her lack of stress management is causing her severe low blood pressure and all her other symptoms. I think doctors say this when they have no answers. I am taking her to a POTS specialist who also has many other disciplines at her disposal. We will have some of the autonomic tests done and hopefully get some clarification and maybe more information. She does get many infections but her nutritional status at the moment really explains that. So I don't think I need to take her to an immunologist. If she gets better nutritionally and still keeps getting sick, then we will explore that. The specialist she is seeing is a neurogastroenterologist and POTS specialist. June

amy in ny- that sounds worthwhile. was it? did they have better treatment? June

wouldn't a POTS specialist be able to find the underlying cause?? She has a cardiologist who has done orthostatic blood pressures, (lying, standing). That's the testing she had. I'm not sure what the standard tests are? She had average bloodwork (chemistry, CBC, diabetes screen, addison's test) and its all normal. That's it so far. June PS-I don't doubt POTS dx but want to find out why her blood pressure is so dangerously low and she has such trouble maintaining her weight. She's almost been hospitalized twice for a severely low BMI.

my daughter has similar numbers (actually a pulse pressure of 10) and her cardiologist is not worried. But I would not advise anyone to ignore that without speaking with their personal physician. I don't like seeing such a narrow pulse pressure. But is it dangerous? I don't know. June

Libby- well I actually have no doubt that she has POTS with low blood pressure. I wish they would find out why her blood pressure is non existent. Her current dr doesn't seem interested in finding out why. Also she is still very debilitated. So I guess what you are saying is there is no treatment? Cause right now, she is no better. June

thanks everyone! Sorry you are all experiencing this distressing side effect. It must not feel great to hear people comment on your appearance. Amy in NY- well my daughter has GI problems, weight issues, migraines and severe low blood pressure in addition to POTS but most of that is part of POTS from what I read. I don't know anymore. So maybe I shouldn't worry so much. June

I just worry so much because my daughter is so pale and just appears ill. I worry they have missed something more than POTS. I know you can't know what is going on with her but do any of you get pale and look unwell? She also has very low blood pressure but the meds are helping. However, she still feels awful. Thanks, June

my daughter gets this way sometimes. Not sure why.I hope you feel better. My guess is that it has to do with neurochemicals and not you but that is only my opinion, June

Thanks Christy- Yeah she hasn't tried Florinef yet. Midodrine helps but only with the Nadolol. Her b/p is better but she still feels sick all the time and is still out of school. June

cardiologist already said she has POTS with overlying severe hypotension. She's already on 2 drugs. We are considering Florinef as recommended by the same neurologist who in the same breath said that stress management would cure her. She is scheduled for the autonomic testing (sweat test, tilt test, and something else I think). She is seeing a specialist in POTS for these tests and this will be her 1st visit to anyone who really knows autonomic dysfunction. June

Daughters neurologist said today that there is no reason for autonomic testing. He said the treatment won't change and nothing will be learned. What do you all think? Already have appt but can cx. June

my daughter's pulse pressure without meds is usually 10. Very bad. But on medicine it is better but she still feels very sick. Don't have any explanation. June

Becia-my neuro says it is dangerous to get it from any place other than petadolex . Com . They only make it without the liver toxic components. It's not cheap but I broke down and ordered some for both of us. I read some actual studies that showed it was an effective prevention. I'll let you know in 3 months if it works. Wish if worked faster. I've tried everything else. June

The neurologist said to try this for me. I have terrible chronic migraines. But my daughter also has them too. I know they may be caused by her POTS. Does anyone out there use Butterbur for migraine prevention? June