Jan

I had my pediatrician do a "poor man's tilt table test" on my son when he was in his early teens due to what I was afraid were POTS symptoms. He took his BP and pulse after having him lay down for 15 minutes and then the same with sitting and standing. The variation wasn't alarming. The doctor said that during adolescents, especially a growth spurt, symptoms similar to POTS are common. My son is a perfectly normal adult now. Hopefully the things you are seeing turn out to be "normal".

Pumpkin, I doubt you have built up a tolerance to benzos if you still feel the effect of a tiny amount. Some people build up tolerances, some don't. A tolerance is indicated when you have to keep taking more and more to feel any effect. I know many people have been able to stop with a very short withdrawal time and no side effects. You really only hear about the people who had difficulty because the others aren't on line posting their difficulty. And one of the main side effects you hear about is anxiety, which if you are taking it for anxiety, it would only make sense it would return if you stop taking the med.

I have found Benzos are life savers. You can use them as needed or on a regular basis. I had a bad experience with SSRI's and other antidepressants. I don't have depression so didn't really like using them for a racing heart and the anxiety that comes with POTS.

Get a new lawyer and make that person do all the work so you can stop stressing. You have nothing to lose.

Articles written for "normal" people just don't apply to us. There are tons of articles on how to reduce salt in your diet, lower your blood pressure etc. that simply don't apply to us. I think the same is true about sleep. What is "average" or healthy for other people isn't the same as for us. I need 10 hours a night and I wish I could get by with less, but I just don't feel good all day if I get less. Before POTS, I needed 9 hours all my life. For every one person who gets by on 6 hours of sleep, there has to be one us us who needs 10 hours if the average is 8.

I have found that I can tolerate nose spray, like Afrin, if I get so stuffed up I can't breathe so I can't sleep. I just use it at night and spray it in one side one day and the other side the next day. I figure I only need to breathe out of one nostril to get by and then there is less chance of getting any side effects.

That's what it is like for me. Just drink lots of liquids, and try to sleep as much as you can until you get better.

I just want to warn people to be careful about associating a bad day with something they ate. I used to look at what I ate every time I had a bad day, and I could always find someone on this forum that had issues with that food. It got to the point I was afraid to eat anything. Eventually I found that what I ate was never a cause of bad days. I am not saying that people might not be sensitive to certain foods, I am just suggesting to be careful before accusing a food of being the cause. Feeling bad after eating a certain food does not show causation. Small meals are better for most of us so it could be quantity rather than content if you notice a pattern with a food. Sometimes we feel bad due to no known cause. Because of the unpredictability of our symptoms, it is hard even with an elimination diet to be sure it is the food that was the cause. And there is always the placebo effect to consider.

I thought they still had a clinic that specialized in autonomic disorders. How very odd. Let us know if it is gone.

I was given choices of dates and took the earliest offered, which was the week before Xmas. This might work to your advantage since most people don't want that time, and with your school schedule, it might be perfect. They told me to plan for a week. They tried to schedule me for an appointment the following week and I went and asked it to be rescheduled, I told them I wouldn't be able to be in town for over a week and was unable to return after I left. The really do seem to think people have unlimited time to be there. I had little kids at home. As mentioned above, some days you might have back to back tests where you are literally running to get to on time and some days, one test. I was scheduled to have my last test on the Friday of the week I came and final summary appointment on that afternoon. On my slow day (Tuesday), I went to the place I was to have my Friday test, got on the wait list and got in that day. Then later Tuesday, I went to my Thursday afternoon appointment site and got in to that test. So I went to my doctors office and pleaded with them to let me see the doctor on Thursday afternoon, after my last test and got to be leave that afternoon. As for being alone, if you can manage to walk/run on your own, you can probably go alone. I would recommend someone coming to the last summary with the doctor just so you don't miss anything. You will know your schedule for the week after your first appointment with the doctor. If your referral is to the autonomic clinic, it is possible it will be less tests and in a smaller area. You could try to talk to the autonomic clinic directly after you get an appointment and see if you can get a feel for what they plan to do. I went back a year after my first week long appointment, and went just to the autonomic clinic and it was just a one day thing. They only did autonomic testing.

I have this happen from time to time, Sometimes when driving I think it is foggy out. Usually I can rub my eyes and make it go away. In my case, I suspect dry eyes.

Predisone is a powerful drug with numerous side effects. Always take the lowest dose of Predisone needed. Look up the side effects on line. Long term use has some pretty scary side effects including Diabetes, bone thinning and fractures, thin skin and increased risk of infections. I know people who use it for Crones and Arthritis and have really struggled with the side effects, including getting insulin dependent Diabetes, but can't live without the drug due to the severity of their illness. I am surprised they would prescribe it to a child since it can effect growth. I am surprised it is prescribed for POTS unless you son has something else they prescribed it for. Florinef doesn't have the side effects of Predisone, which is why it is one of the first drugs prescribed for POTS.

Have you had a tilt table test to get your diagnosis? My only suggestion is that you have to stop lying flat in bed all day. Even a healthy person who lays in bed for more than a few days will have POTS symptoms and eventually get bed bound. That is why after an operation, they make people walk right away, even if a few steps. Do you have a recliner? If so, sit in that during the day. Start with if far back and work toward sitting up. Prop yourself up in bed again even if it brings on symptoms. You need to retrain your body to be upright. The body will learn, you have to teach it. Even if it is one minute at a time. I used to avoid walking any distance because I would get so symptomatic. The doctor at the Mayo told me to walk as much and often as I can. The body needed to relearn to walk. Her words were gold. When I stopped avoiding things that caused me symptoms, I made progress. See if you can get a referral to PT. Then ask the PT to show you leg strengthening exercises you can do while lying down. You want to get the muscles in your legs back to normal. What medications have you tried. Florinef is a good one to start with, salt alone may not help and Florinef will help your body retain the salt.

I felt awful 3 days before and during my period. I would get a migraine about two or three days before I started to bleed, then have a day of extreme dizziness followed by feeling pretty awful for much of the next week when I was bleeding. When I knew I was getting my period, I would have to just write the whole week off, and not even go out of the house. When I was on the pill and having a period every month, if I had plans I really needed to do, like a wedding, I would keep taking the pills and manipulate when I would get my period. Finally I asked my doctor if I had to get a period at all and he said no. Wish I had asked sooner. When I took the pill non stop I would start to get light break through bleeding after 4 or more months and when I got sick of the daily drip I would go off the pill and get my period and have a week from heck. Then the doctor told me I only had to go off the pill for two or three days to bring on my period and that was better, starting the pill again so soon kept the headache and week from heck at a minimum. Sometimes people say POTS gets better as we age, I wonder if it is due to no more monthly cycles.

I was on oral contraceptives for many years. They greatly improved my functioning. My doctor looked up the different brands and prescribed one that is more likely to raise blood pressure. (sorry, don't remember the name). I took them without the 7 day break and got rid of the cyclical bad days and my menstrual migraines (and my period). They did not help that much when I took the week off and got a period. I only stopped taking them when I went into menopause. Menopause is great, I will take hot flashes over the migraines and cyclical bad days.

I have had POTS for about 15 years. I am probably 85% better than at the beginning. I have had some odd symptoms lately and am wondering if they are POTS related. Last month I woke up and went to the bathroom and upon returning to bed, my toe, the one next to the big one, hurt like I had broken it. Seriously hurt. While I laid there trying to think if I hit it on something, the pain went a away. This happened twice in a week and not again since. Last night I was in a restaurant eating BBQ chicken and my lips started to BURN. I have never had this kind of a reaction to anything and the food wasn't all that spicy but I kind of thought it might have just been to spicy for me. My throat and tongue didn't burn. And my one eye lid hurt. Than on my way home last night my right hand started to hurt. It got better but when I went to bed, it really hurt. It felt like I had scalded it in water. This lasted for a few hours. Now I have a little tingling in that hand. Could this be a POTS blood flow kind of issue. I REALLY don't want something else to be wrong with me. Is Peripheral Neuropathy a thing we get? I have always, for as long as I can remember, even before POTS had kind of a numb feeling in my big toes that doctors just dismiss after they stick me with a pin to see if I have feeling.

This was written by a young man with POTS. I found just the mention of POTS in a major magazine interesting and also what he had to say. http://www.washingtonpost.com/opinions/hollywood-has-it-wrong-im-a-teenager-with-an-illness-and-its-not-glamorous-at-all/2014/09/12/b9154a7e-38f9-11e4-8601-97ba88884ffd_story.html?wpisrc=nl-most&wpmm=1

Interesting, wonder why more of us aren't prescribed Pseudoephedrine. Not only does is constrict, it is a stimulant so no wonder you have more energy. I guess it can cause anxiety also, but it seems worth a try.

All I can say is ditto and it makes me feel better to hear your stories. I would tell you my issues but I have forgotten what they are, but I know they have to do with memory. lol I can totally relate to the shower story. I

Is there a chance it was the heat that made you feel bad. It is unusual for me to be able to spend any time in the heat unless I am at a pool. And then I don't notice how the heat is effecting me until I get home and am exhausted. When I go to the indoor pool, i sit on one of those floating noodles and paddle and exercise and then leave. It is air conditioned. I might feel a little tired out but generally feel much better. I think it is important for me to be moving around in the water not being in the heat for too long.

You have pretty normal BP and a rather low HR. I have POTS so I am not sure what worked for me will work for you. I was bed bound for almost two years. I didn't push myself because it made me feel worse. Then a doc at the Mayo said I had to do the opposite of what I was doing, and retrain my body to be upright. Do the things I was avoiding, like walking. They also stressed building up leg muscles. What worked for me was I bought a recumbent bike, swam, and got a PT to to give me a bunch of leg exercises I could do at home lying on my back. My advice, don't lie down once you get up for the day. Push yourself to walk and move around rather than sitting. Progress for me was super slow so it was hard to see and discouraging. Keep a journal of what you did that day. Then in 6 months you can look back and see progress. Good luck and don't give up. I know that is easier said than done.

If I was getting along OK without medication, I would be super hesitant to start on a powerful antidepressant as a preventative. SSRI's have terrible side effects for many people, with or without POTS. I think you have to weigh the pros and cons of taking any medication.

I felt horrible on Midorine with nausea, dizziness and headaches that sent me to the ER room. Fortunately (for side effects), it wears off after a few hours, unfortunately for long term use, it only works for a few hours., I am doing well on Florinef. I get more even results.

I was just curious after reading a different post where someone mentioned a family member who has achalasia, if anyone has achalasia, or a close family member with it. I have POTS and my son has achalasia. I read once about a link between the two. Makes me wonder if there is a hereditary component to his achalasia.

What I got from the paper is that what ever medication they used didn't really help. That symptoms are worse in the AM, with or without medication and that is very true. This probably means some people who feel better later in the day think their meds are helping when the real reason they feel better is that everyone feels better in the afternoon. No medication trial is valid without a placebo as part of it, you can't show cause and effect without it.