Jan

I was always a nervous child and a bit of a worrier. Since having POTS it is full blown anxiety. I don't know if it is from the racing heart and dizziness etc. that comes from the POTS, or if any scary illness would have made me a bundle of anxiety.

I fly about once a year. No problems on the plane. Lift off and landing are not an issue. Even bumpy flights have been fine for me. Much better than riding in a car. Feel fine when I get off the plane. If the security line is long, standing in it could be problematic for you if standing is something that normally bothers you. I buy bottles of Diet Pepsi and water as soon as I get through security so I have plenty of caffeine to constrict my veins and liquid. I also bring a lot of salty snacks with me. I get an isle seat and use the rest room often to stretch my legs. (I do that even when I am not flying).

I had sudden onset 20 minutes after a bee sting but was starting to feel ill before that possibly from either a virus or food poisoning. I was also under an incredible amount of stress in my life at the time. I have had countless tests and no cause was ever found. I had to move from finding a cure to figuring out how to cope with POTS. My symptoms were very similar to yours. I avoided things that made me feel worse, like walking any distance. A doctor at the Mayo told me that the body has an incredible ability to adapt. She told me I had to push myself or I would never get better. She suggested starting with short walks, leg exercises and sitting up in a recliner with my feet up, rather than lying down during the day. She said I had to retrain my body on how to be upright. I went to a swimming pool, went to PT and got some leg exercises I could do while lying down, and bought a recumbent bike. It took years, and progress was slow but I am now able to go out with friends, drive, shop and take care of myself. I still need tons of sleep, and can't tolerate warm weather, eat lots of salt, stay super hydrated and I take florinef and lorazapam. I still have some dizzy days but over all life is good. The depression that came with being so debilitated was as difficult for me to deal with as the illness. As soon as I started to feel like I was doing better, the depression went away. Try not to lose hope. Focus on trying to do just a little bit more each day. If you keep a journal you might be able to see progress you won't see daily. Good luck, I feel you pain and how overwhelming life can be. I had small kids at the time and my husband left me. The good news is kids grow up and become not just self sufficient, but helpful.

My experience with midrodine was similar to Kim. After a few days, I ended up in ER getting a shot of Demoral the head ache was so bad. I wish I had stopped taking it sooner. Be prepared for a tightness and tingling in the scalp. That is normal but even if you know it's coming, it can be really shocking. Literally shocking in that if felt like electrodes on my head. I hope those who have had positive results post on here because some people swear by it. I have been on Florinef now for years and it seems to keep me at a pretty even BP reading day and night.

I get the skin prick feeling and the thumping feeling from time to time. In the grand scale of symptoms I worry about, I just ignore them. My doctor tested me for lots of different deficiencies that could cause it, but none showed a cause.

Have you tired a more limited exercise routine? Like just walking or swimming. Or exercise that doesn't raise your heart rate as much because you aren't as upright. Like a recumbent bike or swimming. Maybe just do the more strenuous exercise every 3rd day? I think even people without our issues can wear themselves out and feel tired for days after a heavy workout and feel better after resting for a couple of days. I would think it shouldn't have to be all or nothing. There are a lot of ways to exercise that don't involve marathons.

I have been on Florinef for over 10 years. I have good days and bad days, but I don't think it is related to the Flornief and have improved over time.

I used to use one before my symptoms got better. It was wonderful. Especially when I had to wait in a check out line. I didn't need a cane but it was fine to use as a cane and not a bother at all. I never knew when I would have the strong need to sit, especially in stores.

What is the difference between a plasma half life and a biological half life?

Dizzygirls, all I can say is it really helps me to take it a few hours before I get up for the day. I have tried to take it after getting up for the day and usually have a terrible day. I have a really difficult time in the morning, so if I have to go somewhere in the morning, I take the Florinef even earlier than normal. I usually sleep until very late morning. It can't hurt to try taking it before she gets up.

Florinef is a hormone that the body normally releases in the AM so it is recommended to take it then as it can wake you up and makes sleep difficult for many people. You are obviously an exception to this rule. I am on .1 mg 2x a day. When I used to get up in the early AM to get my kids ready for school, I took one then, went back to bed and then took the second dose when I got up for the day. That worked fine. Now I just take both pills 3 or 4 hours before I get up for the day. This seems to work even better for me. (I get up to pee at night so I am up anyway. I also take them with a glass of milk because it bothered my stomach.) It seems to be long lasting enough for me to last all day and by taking it before I get up I find that I feel better when I do get up. If I take them too close to the time I actually get out of bed, or after I get up, I don't feel very well all day.

I think you should consider having the tests.

I told the doctor I saw at the Mayo's autonomic clinic 10+ years ago that I did pretty well at home, not walking far and that I felt sort of OK at home but it was hard to get out of the house for long. I thought I was improving and this was good. She told me if I don't push myself I won't get better. She said the body needed to be taught how to be upright again and that the body will learn to adapt to almost anything. I had adapted to limited activity. She encouraged daily walks. Go further every day. It was hard but I am no longer house bound. It was the best advice I ever got. Baby steps, do it gradually. As for heart rates, people who exercise try for higher heart rates to improve their heart. 220 minus your age is the standard. I don't see how our high heart rates would damage our hearts. Of course it is different if you have a heart condition, and you should check with your doctor but all the many docs I have seen have said I would have no heart damage due to POTS.

The main reason I am unable to work due to dizziness.

Florinef gave me stomach pain but no longer does as long as I take it with a glass a milk. That isn't an option for you but I just wanted to say it can be a stomach irritant so if you can take it with more food, maybe it will help. Or maybe soy or rice milk? I used to take it twice a day but found taking both doses in the early AM worked just as well as spacing it out. Then I only have to irritate my stomach once a day.

Alcohol IS a vasodilator. It lowers blood pressure. That is why sometimes people freeze to death when they are drunk and don't realize they are dying, the veins are so dilated they don't feel the cold. I don't know how anyone with low blood pressure can drink it and not get more symptomatic?

I have felt like you have. I told the doctor at the Mayo, that I feel much better when I just stay at home. She told me I had to push myself to get better. I had to retrain my body to be upright. She said if I stay at home, and don't push myself, I would not get better. She suggested to start with short walks. She said the human body is very adaptable and even if you can't cure POTS, the body can learn to adjust. I had give my body the chance to adapt. I would suggest baby steps. My first suggestion is physical. I don't know if you have been to Physical Therapy but get a referral if you can. Get leg strengthening exercises you can do while lying down. Sit up right as much as you can tolerate. Try to increase the length of time by a minute every day. If there are any therapeutic swimming pools around, especially ones designed for handicapped people, go there. I go to a pool where many of the people are in wheel chairs. The therapist will do therapy right in the pool. It is easier for many of us to exercise in the water. And floating is relaxing, and can relieve stress. I have a recumbent bike. I started with about one minute at a time and worked up to an hour. Walking, even short distances around the house where you feel safe is good. Then walk a few steps further tomorrow. Keep a log because progress is slow. I have been where you are. You may have tried everything I have suggested and it didn't help. But I would suggest pushing yourself a little, some how, every day. Just a little. My next suggestion is what to do about the social aspect. Don't expect people to check in or ask you to get together. YOU have to do the checking in and asking. You are the one who has health issues and knows when and what you can do. People are respecting that by not asking you to do things. Invite people over to your house. Maybe just one or two people. And have them bring food. I have 3 friends who have been coming to my house a couple of times a month to play cards with me for almost 15 years now. At first, I had to lie on the couch and we played on the coffee table. Now I sit at the table. Go to family gatherings where you can sit with your feet up. Someone once said to me, "If you are going to feel lousy anyway, why not be with family." Being around people helps me focus on things other than myself. It will be hard. But out bodies can be adaptable to new environments if we are brave enough to try. It really does take courage for me to go places. Ask your self what the worst thing that could happen is? If your husband has to bring you home, heck, at least you tried. If you get over stimulated with family visiting, tell them you are tired and go in another room if you don't want to ask them to leave. At the very least, pick up the phone and call people just to talk. My last suggestion and with all other suggestions, they are just ideas, take them or leave them. I take Lorazapam. I know people thing it is an evil addictive drug. But for me, it completely did away with the adrenaline rushes and changed my life. I now drive, shop and can go to social gatherings. (I don't drive real far, and I don't go to any gathering where it is hot out, or where I can't sit down if I need to). But that over stimulation is not a problem for me as long as I take a med first. I think POTS is extremely difficult to adapt to. If we were in a wheel chair, due to losing both our legs, at least we might not feel dizzy and anxious and could still attend activities. And I think people understand most other illnesses better than what we are dealing with. I have missed major life events like funerals and baby showers and it really is a bummer and hard not to have a little pity party. I was extremely nervous about graduations and weddings and not being able to attend. My son and his wife had a late day wedding because they knew I can't function in the mornings. But every day when my body tells me I don't want to go on a walk, I lease up the dog and go for a walk. The dog is the best personal trainer I could have. Good luck, even if all my suggestions are worthless to you, I want you to know that I, and most of us here, feel for you and wish you well and you aren't alone in feeling sad about the cards life dealt you.

The weather changed this weekend and I was so dizzy I couldn't leave the house. Happens often when a storm is coming. It is like my head is a barometer.

I have spell check on this site.

I got a seven month old dog this summer. She was a nightmare. Shepard/hound mix, not what I was looking for. She wasn't house trained. She chewed up everything, pulled the curtains down and chewed up the curtain rods, chewed up he pillows on the couch, shoes etc. When I got her I was going to the Humane Society to get a dog at least 2 years old, preferably a Golden Retriever mix. Sometimes the dog you fall in love with isn't the dog you thought you wanted. She is now house trained. I puppy proofed a room and keep her in there when I am gone. She is much better behaved but does require a lot of attention. I have a fenced in yard which is necessary for me since I can have bad days. On the plus side, I love her. We go for a walk every day, even when it was wind chills of 20 below. I live alone so I am now never alone. She can go 14 hours without having to go out to the bathroom. We go to a nearby dog park and I get to socialize with other people. She makes me get up to let her out and in when I would prefer to just sit. I had two older dogs who both died last winter and they were slow and calm. But once they died, I never went for a walk. I would recommend a dog at least 2 that is house broken. Advice I didn't follow myself. As for breed, go for the one you think is the cutest.

We aren't doctors on this board. I don't know if it is a bad thing to go that long without a period at your age. Is it possible to go to a different OB/GYN for a second opinion? They should be the expert on this and you shouldn't have to be doing on line research and guessing what to do, when there are doctors who went to many years of school and should know the answer. I have found huge differences in opinion between OB/GYN's I have seen. I found one who took my POTS into consideration, researched which BCPs were known for raising blood pressure, and gave me those. I felt tons better on oral contraceptives. My doctor didn't feel that POTS would increase the risk of blood clots unless I smoked. But everyone is different. The pills may help your POTS symptoms, or not. It isn't like you have to stay on them for long. Perhaps you could go on them for a few months, have a few periods and than stop. I think taking your list of questions to your doctor is a good idea. And I personally don't recommend nurse practitioners or nurses to answer the questions because you have a complicated medical condition to consider.

I am certainly not a doctor, but I wonder if there aren't lots of kids with POTS like symptoms in early puberty. I really hope when the hormonal changes settle down, your daughter will be fine. I think because I have POTS I worried about my sons having it and kept them super hydrated and looked for trouble. One of my sons was very tall and thin and had what I thought were symptoms of POTS. Lightheaded, dizziness, headaches etc. He just had the "poor man's" tilt table test with his pediatrician taking his BP/ HR sitting, standing, and lying. The results were a little high but still in the normal range. His doctor advised him to bring a bottle of water to school with him and keep a snack in his back pack and not to get too hungry and to drink more during the day. He out grew the symptoms and is fine as an adult, although he is still tall and thin and needs to eat often or he gets faint.

My experience with Florinef is it took about 6 months before getting the best effects. My body adapts pretty slow. It did eventually help with all my symptoms including nausea and headache. I think the drastic change in blood pressure and heart rate caused a lot of symptoms including the nausea and headache and it took awhile to adapt to the changes the meds caused, even though they were good changes. My experience with headaches, is that pain, especially in my head, causes nausea. Is your daughter getting her period yet? If so, that can make symptoms much worse. It helped me to keep a symptom diary. That way the small changes I didn't notice on a daily basis could be seen when reading back. Good luck, many kids out grow this stuff, I hope your daughter is one of them.

Are you sure the doctor isn't assuming she had already tried increased salt and increased liquids? That would have been my assumption if I was the doctor and the mother of my patient had POTS and understood the need for that. And then my question is, have you tried that? If she wants, she always has the option of trying the non medicine route if you haven't already done that and then take the meds if that doesn't work. Maybe the doctor is thinking meds are needed because of her other symptoms and that diet changes won't be enough.

It think it would be better if I could choose more than one symptom and less than all of the above.