Jan

How are you sleeping? I know if I don't get a TON of sleep it can really effect my HR and BP. Stress also causes a flair in my symptoms. That said, I have lived with this for over 10 years and sometimes I have good days or weeks or even months and then can have a really bad week or a month of bad days here and there for no reason. It is good to try to find a trigger, but don't worry if you can't find one, sometimes there isn't one to find. And one note about exercise, start really slow. REALLY S L O W. I think I could do 3 minutes at a time on my bike at first. Overdoing exercise can cause me to be quite symptomatic.

I have flown, no problem. 3 hours is not very long. Just get up and use the restroom a couple of times to stretch your legs. Seriously, the take off and landing were absolutely fine, no different than before I had POTS. The time in the air was no different than sitting on my couch at home. For me, car trips are horrible. They make me dizzy and it takes me a day to recover from a long car trip. No problem with a plane ride. Depending on the airport, the walk to the plane can be long, but I would recommend walking it rather than getting a ride because then you get some exercise. Just as a general unasked for suggestion, you really don't want to be "dehydrated all the time". Healthy people who are dehydrated will feel nauseated and dizzy and have POTS symptoms. Getting hydrated could help your symptoms in general. You don't have to drink water, you can drink anything: milk, soda, juice, sports drinks or eat juicy foods like ice cream or fruit. And be sure to get enough salt in your diet to retain the fluids. Good luck, I hope the plane ride is to some place fun.

I have watched a lot of Dr. Oz and have started to not trust him. I have seen too many shows where he shows some thing that helps with something, only to see him contradict himself in a different show. I don't know if he gets money for pushing certain things or if he just likes to show what ever is popular. I feel that he is more of an "entertainer" than a real help. They only show happy endings on his show because that is what people want to see. POTS doesn't have a happy ending. He may be a bit like Dr. Phil who gets to call himself Dr. because when he was sued for misrepresenting him self as a Dr. and misrepresenting facts, he won in court because he was classified as an "entertainer" and didn't have to be a doctor or even present accurate info. I am afraid if Dr. Oz did something on POTS, he would show us the "cures" for it, make it look easily fixed and leave us all worse off as far as people understanding what we deal with. That is what happened when some station had a show about Linda from NDRF. While it gave some good info, it left people thinking she was cured. I had more people call me and tell me I was going to be fine soon because they watched it.

One of the possible side effects of oral contraceptives is raised blood pressure. MY OB/GYN picked the one he prescribed to me because it was known to raise blood pressure more often than some others. I have always, even before having POTS symptoms, felt better while on Birth Control Pills.

If you google "Urine that smells like ammonia", you will find lots of articles, seems dehydration is the main cause. If drinking more doesn't help, a doctor visit sounds like a good idea. I guess all urine smells like ammonia if it is concentrated enough. I had really odd smelling urine once when I was on a mediation, I forget which one, I think an antibiotic,and I told my doctor and he was totally unconcerned. I felt like a dope asking, but it didn't phase him.

Getting POTS after taking hormones does not show causation. With the number of women who get diagnoses with POTS during their reproductive years, a time when oral contraceptive use is high, I would expect more people to have gotten sick when they started hormones if that was a cause. Fluctuation in hormone levels causes many women to experience many unpleasant things, this includes women with no health issues or who have other diseases as well as people with POTS. It is not unexpected it would make symptoms worse for some people. I can imagine that a change in hormone levels, like when stating hormones, could increase symptoms, but I can't imagine it could cause POTS since women naturally have hormones and hormone fluctuation in their bodies. I took hormones for years without the 7 day break. It didn't cure my POTS but it certainly helped with the symptoms that were brought on by the fluctuation. I was extremely symptomatic right before and during my period when I wasn't on oral contraceptives. Menopause has been a blessing as far as getting rid of those cyclical symptoms.

I saw Dr. Sandroni probably 10 years ago. It was a year after my initial visit to Mayo where I got a POTS diagnosis. She had me repeat tests, said I was doing a bit better but still had enough changes in heart rate to be diagnosed with POTS, said I would probably continue to improve, stay the course. No follow up. I was taking Florinef and Lorazapam at the time. She didn't change or suggest other meds. She was very nice and spent quite a bit of time explaining stuff to me. One thing she did say that has stuck with me, is when I told her I felt better at home where I didn't walk very far vs going out of the house, she said the body needs to retrain itself and that I needed to push myself to walk further. That was really good advice. And the idea that I could "train" my body was extremely helpful to me emotionally in that I started to feel like my body and I could work together to get better, where I used to feel like I was kind of fighting with my body.

I agree with yogini, I drank diet soda all my life but gave up diet soda after getting sick for a long time with no positive effect, in fact giving it up may have made me worse because I lost my caffeine intake. I am sure it is terrible for me in some way, but it is my source of caffeine and without it I am not as functional. I use it as a medication, it is a vasoconstrictor. I drink it over ice so it gets watered down which is more refreshing to me. If you are worried you might be sensitive to the artificial sweetener in it, you could give it up as an experiment.

I had sedation with my endoscopy and it wasn't enough. They told me if it wasn't enough to let them know. Hard to do with a camera in your throat. I tried to signal to them to stop but they held my arms down. It hurt really bad with them shoving it into the back of my throat, and then the gagging made my esophagus try to get rid of the tube and camera and it was very painful. My throat hurt so bad afterwards I couldn't even swallow water without great pain for a couple of days. It was just like you described with no sedation. It was ****, I gag thinking about it. I have red hair and I read that redheads need more pain killers and sedation as a rule. I believe this is true for me. So, if you do get an endoscopy, some of us might need more sedation than others and i would work something out with them to tell them if you need even more sedation. It was just as Ryan said, pure ****. My son recently had one and they said he got the maximum sedation they could give and he still gagged at one point. I am so jealous of those people who tell me they slept through it. I had a colonoscopy recently. Other than the prep, it was a piece of cake.. At one point I said, "That hurts" and they gave me more meds and even though I was conscious, I was happy as heck. I babbled to the doc and nurse about nonsense the whole time and afterwards had a great time playing with the animal crackers they gave me to eat. Loved those meds. A tiny amount of pain was a walk in the park compared to gagging up a camera.

I don't feel hungry or full like I used to. I have been able to figure out that when I am feeling "sicker" it is hunger. I feel terrible when I am hungry and when I eat too much. The hardest thing for me is to prepare a meal before I start to feel "sick/hungry" because I just plain forget. I do best if I just make my food when I think I should eat, eat a small meal and then do this again later in the day. When I get too hungry I have to eat something to even feel good enough to prepare a meal because I feel so bad. Yogurt is my go to quick fix. I have to always be aware that I won't feel full, but I will feel better. I usually tell myself, eat this small amount and if you don't feel better after 1/2 hour you can have more, and by then I have forgotten to eat more. If I have dinner plans, like going out to eat or to a potluck, I eat before I go because if it takes too long to get the food, I will get so sick I have to leave. I also always keep trail mix in my purse. Going out to eat is problematic in that they always serve too much food, I have to force myself to ask to take 1/2 the food to go. When I first got sick I lost 20lbs in the first month due to not feeling hungry. Then I started to gain weight because I didn't know when to stop. Eating is almost like a skill you have to practice.

One thing I worry about is if it makes your POTS worse, do you have a plan in place for someone to be with you 24/7 after giving birth to care for your baby? New parents get very little sleep and being tired can makes POTS symptoms worse on top of possibly being sicker after the pregnancy. And on "bad days" someone needs to care for your baby. I still have guilt about not being a very good mother and was unable to participate fully in my kids lives when they were growing up and I still rely on them to help me sometimes instead of me helping them. now that they are adults. They were 5 and 8 yrs old when I got sick.

Were you irritated and or anxious before taking the Florinef? Many people with POTS are and it is unrelated to meds. I was super crabby when I first got POTS. I had NO patience for anything and blew up over small things. I blame the POTS. Florinef stays in the system for awhile so not taking it the day of the test may make no difference. I would ask my doctor what to do about that.

Maybe you can accept that for now, just for now, your job is to get well. Get disability if you can and then use your time to concentrate on exercise, eliminating stress in your life and being positive. Your goal can be to get back to work but not working a job for awhile may be the only way you can accomplish that. It isn't giving up to ask or need help. Working on your health isn't a bad thing.

I don't think it would hurt to talk to an attorney, one that specializes in disability. Find one that you don't have to pay unless you win. That way they can help you get SSDI AND sue the jerk who fired you, harassed you and broke confidentiality. . I am not sure from your post if you can still work, but if not, then you should get SSDI, if so, then you should be able to get something from your past employer. Your employer is not allowed to discuss your medical condition with anyone without your permission. I know this is depressing but try to think that it will get better. I was rejected for disability and SS and had to fight when I was at my sickest and it really is rough, but things did get better.

I agree with your parents. I would report the Psychiatrist to the medical board. Would it help if the psychologist referred you to a different Psychiatrist, for a "second opinion" but to actually get that diagnosis off your record. Does your GP or other doctors believe the Psychiatrist? Your whole situation makes me angry. I can't imagine how upsetting this must be for you.

I honestly don't know why 140/90 would scare you? I would be fine with that reading, especially if it isn't constant. BP can change quickly for even healthy people. If the BP reading scares you, it may go even higher. Nothing raises BP like anxiety. My dentist took my BP once and it was so high they didn't want to proceed with the procedure I was having done. (I hate the dentist) I said, wait a minute, took a deep breath, relaxed and had it drop 40 points. A lot of things can cause BP to go up, I wouldn't jump to a solid conclusion it had anything to do with Flornief. Maybe when you are weaning off, if you find taking 1/2 as much keeps your BP in a range you feel comfortable with, you can stop at that amount. Did you feel any better during the two months you were on the med? How often do you take your BP every day? Watching my BP jump all over used to cause me anxiety. I had to stop taking it.

My solution is to avoid mornings all together. I take my Florinef with a glass of milk around 10AM, and go back to bed for one more sleep cycle and get up around noon. I used to take it at 6AM but didn't notice any difference in how it affected me and I hated getting up to get the milk that early. I can't take it on an empty stomach. I don't set an alarm, I always wake up enough in between sleep cycles to know what time it is. When I get up at noon I drink some caffeine and stumble around feeding the dogs and letting them out and stuff like that.. Takes about an hour for me to feel as good as I get. It is better if I am moving around to get the old circulation going. I feel way better at night. When I have morning appointments that can not be moved, I just know i won't be able to drive to them, and will be super dizzy the rest of the day. I actually feel like throwing up when I have to get up in the morning. And it doesn't matter what time I went to bed the night before, I just can't seem to get the blood flowing in the AM. AND I usually get a migraine the day after I had to get up early.

I don't know what a "vaccine challenge" is? If it means getting the vaccine I would pass. Risk vs benefit, I think it has too much risk vs minor benefit. As for the article on POTS after a flu shot. I found it hard to find any causation. His getting POTS could have been totally unrelated to the vaccine and just a coincidence of timing. 20 minutes before I got really sick with POTS I was stung by a bee. The night before I ate shrimp that didn't taste quite right and thought I was getting food poisoning the day I got POTS. The month before I had the second Hep B vaccine in a 3 shot series. I was in a super stressful life situation at the time. Did any or all of these things cause my body to lose control over my autonomic nervous system? Who knows? Should I be afraid of bees, shrimp, vaccines and stress? I actually am afraid of all the things I just listed...lol

I would apply for social security NOW even if you hope you don't need it and can't live on it. It can take up to two years to get approved and if you improve, good for you, withdraw your application but if you can't work at all, two years is a long time to go with NO income. And you can get disability and earn a limited amount of money. You may at some point qualify for low income housing, that charges 1/3 of your income. Again, you may not want this now, but that too has a long waiting list. You can call you county social service agency and explain your situation and see if they have suggestions. You may qualify for some senior programs like assisted living, again, hoping that you don't ever really need them and that you will improve, but just to have a plan B.

I gave up caffeine when I got POTS. The doctor at the Mayo suggested I try drinking caffeine in the AM because it vasocontstricts and getting going is really hard for me when I get up. It really helped me so now I drink Diet Pepsi on ice (so it gets watered down and is more hydrating) through out the day. I HAVE to drink it during a movie or if I am going to sit for awhile or I get super symptomatic and a headache. For me, my blood pressure drops first and then my heart races to keep me from fainting. So my theory is that the caffeine prevents the blood pool in my legs so it doesn't cause tachycardia. For people whose heart races first, and then their blood pressure drops to lower their heart rate, I would think the caffeine might make their symptoms worse.

From the Mayo Web site Midodrine is used to treat low blood pressure (hypotension). It works by stimulating nerve endings in blood vessels, causing the blood vessels to tighten. As a result, blood pressure is increased. So I guess it is a vasoconstrictor.

I'm not a fan of self help stuff, especially The Law of Attraction. I personally find the theory behind The Secret to be garbage. I feel like those kind of things blame the victim if they don't succeed. This movie and book have been mocked and there have been many parodies done on it over the years. It came out 7 years ago. I am not saying it isn't good to have a positive attitude. I am just saying that you can't cure cancer by hoping it will go away and it is just cruel to people who have serious problems to tell them their lives would be great if only they had a different attitude and BELIEVED.

I had my MRI which revealed lesions almost 15 years ago. I have POTS. No MS or other neurological disorder. What the neurologist told me was that they did a study on healthy college students and did MRI's on them. Then they followed them. The ones with lesions that went on to develop MS or another neurological disorder later in life was no greater for those that had lesions in college than those who didn't have them. My neurologist said it is thought that many people in the general population have them and will never know because they don't have an MRI and the lesions don't cause any issues. He also said that is why he felt it is bad for people to get MRI's just for screening purposes. I have asked doctors since then if I should have a follow up MRI to see if the lesions are getting worse and have been told there is no reason to since it would serve no purpose. Some people have them. I have read that people with Migraines get lesions, but I thought the headaches caused the lesions. I do get Migraines but not very often since I no longer have menstrual migraines.

I have them. They initially said I had MS due to the lesions. Then the spinal tap said no. They told me lots of people have them and just don't know they have them. They might not mean anything. Wish I didn't know.

I have been on disability due to POTS for 10 years. There isn't a specific code they can use so they used some code that is usually used for elderly people who have diabetes and it causes orthostatic hypotension. I applied, was denied, appealed, got denied, appealed again, got denied, got an attorney and appealed and had to go to court. I was mostly bed bound at the time and the initial denial said I should go work in an office when I couldn't even sit up.