Jan

One of the side effects of Sudafed is tachycardia. I don't think anyone with POTS is supposed to take it. Any med that says don't take if you have HIGH blood pressure should be avoided because they say that because they raise the heart rate.

Virus Lyme MS Many other things were suspected but ruled out by tests. I was given IV antibiotics for Lyme, and IV steroids for MS before they were ruled out.

The problem with the Mayo, is they won't act as a primary Dr. They will consult and make recommendations, but you need a doctor in town to prescribe and monitor. I had a difficult time after visiting the Mayo having them contact my doctor at all. My doctor finally called them and they gave him very little direction. I see a doctor of Internal Medicine in Stillwater, MN. I am his only POTS patient. He has read up on it and when ever I see anything that I want to try, he reads about it. One time my doctor said "This must be really difficult for you, I wish there was more I could do." He has been my very favorite doctor since. One specialist at the Mayo clinic said, "You will get better in 2-5 years", like that was good news and seemed incredibly unsympathetic to the fact that my life as I had known it was gone forever. Oh, and by "better" they mean not bed bound, but certainly not cured or close to it. My advice it to try different doctors in town until you find one you trust. One who believes you.

When I first got POTS I had an incompetent neurologist who didn't know what I had, a and he prescribed Nortriptyline saying he thought it might help the dizziness. It was HORRIBLE. I went from dizzy scary dizzy. I couldn't stand out without immediately blacking out. I lost the ability to drive, walk, stand, even sit up etc. because of the blacking out. My primary Dr. told me to quit, that it was a terrible drug for someone with my symptoms. My favorite line from the neurologist was, "I don't know what is wrong with you, there are some rare illnesses that can cause symptoms like you have, but I am sure you don't have one of them." Then he told me not to come back as there was nothing he could do for me. I have always wanted to call him and tell him I did have one of those rare illnesses he didn't test me for and was sure I didn't have.

I took Nasonex for about 6 months in the summer for about 3 years. The only side effect I had was sometimes I would get a minor nose bleed. It doesn't start working for a week or so, so it isn't instant relief. I will take Afrin when I have a cold that is so bad I can't sleep because I can't breathe. I put one spray (instead of the recommended two) in ONE side of my nose. Then the next night, one spray in the other side. That way I can breathe out of one side and I can use it more than 3 days without getting withdrawal. I like to drink stuff after using either med because they do go down the back of my throat and leave a taste otherwise.

I drink tons when I go to bed or I have a horrible day the next day. And yes, that means getting up and going to the bathroom a lot. I drink a glass of water every time I get up at night. When I have tried to limit my bedtime intake or during the night, I sleep better but feel horrible the next day.

I've done two 24 hours tests. One needed refrigeration so I set up a big cooler with ice in my bathroom. I was NOT going to put urine in my frig. The one at the Mayo did not need refrigeration. It has some nasty smelling preservative in it. I suppose they had to do it that way since most people at the Mayo stay in hotels and don't have frigs. I would double check with the lab because collecting urine is a pain, especially if you want to go somewhere. If the jug was completely empty, no smell, then I would suspect it may need refrigeration. When I first got to the Mayo, I saw all these people walking around with plastic bags that say Mayo on them, and I thought, wow, I can't believe how popular the gift shop here is. Then I got my "gift bag" with my jug in it and realized all those people were lugging urine around all day.

I think they can do a blood test to see if you have developed immunity to chicken pox. There is a chance you were exposed sometime in your life and may not need the vaccine.

I vote for the bike. I was told by the Mayo clinic that the key is to build up leg muscles. I find doing things with my arms makes my symptoms worse. I was told not to lift heavy things. Rowing would make me pass out. Maybe you can go somewhere and try the two out and compare. When I started on the bike, I could only do a few minutes and now 1/2 hour on harder settings is no problem.

I have asked numerous doctors and pharmacists if Florinef has the same side effects as prednisone and all reassure me that it doesn't. They all told me it shouldn't make me more prone to infections or bone loss etc. I have taken Florinef for over 10 years now, .2 mg a day and it has worked well. It did take a month or so before I noticed my BP stabilizing. It did not have instant effects. I started at .2 tried .3 for awhile and felt GREAT for a few days and then felt loopy and out of it so dropped back down to .2 I did not work my way up to the dose, which I should have, but I think at the time both my doctor and I were desperate to find ANYTHING that helped. Good luck, I hope it helps.

I have craved salty foods all my life. I would take salt over sweet any day, always felt that way. I sometimes wonder if my high salt diet, and the fact that I rode my bike everywhere and really strong legs, kept POTS at bay until I was into adulthood and out of shape.

I have missed a dose of Florinef and had all my POTS symptoms get worse. After taking the missed dose, I am back to baseline within a few hours. You aren't supposed to stop it suddenly but I think my symptoms after missing one pill are more due to needing the med to raise my BP than withdrawal.

I have been on Prilosec for many years. I couldn't live without it as far as acid reflux. It might have made my POTS better if it does raise my BP and lower my HR since I have low BP?

I think getting married might be your best option. Group plans don't usually exclude due to pr-existing condition. If you get insurance from an employer, and then lose your job because you get sick, you have no insurance. I have basically decided I can't move closer to my mother because of my insurance.

When a storm system is approaching, I get terrible headaches until it starts to rain or snow for a day or so. My question, and I have not been able to come up with any kind of answer Is there any way to avoid this? Can a person change the barometric pressure in their house?

I did a phone interview because I was too sick to go in to their office. I don't think the interviewer had anything to do with the decision. I think I was an automatic rejection. I got a letter saying I could work and gave an example of working in a business answering phones even though I was bed bound at the time and could barely walk to the bathroom. They sent me some forms to have family and friends fill out and I got the rejection before I had time to even give them to anyone. Keep appealing if you get rejected and don't feel bad if you get rejected, most people do.

When I first got sick I found another site like this one, and it probably saved my life. I swear I would have gone crazy if I hadn't found other people who understood what I was going through. A person does have to be careful on sites like these to not think that everything others post applies to them. For example, at first I would see that people sometimes posted food that make them sick so I started eliminating those foods until I had nothing left to eat. I often felt sick after eating so I would assume it was something I ate. That wasn't the case at all. I just have to eat smaller meals. You also have to be careful not to to chalk every symptom up to POTS or dysautonomia. Sometimes we really do get ear infections, or heart problems, or things that CAN be treated and not just accepted or dismissed because it is common for people here. So WELCOME to a group no one really wants to be a part of.

Just take it with milk or a meal and lots of liquid.

The first two years were the worst for me and I believe it was because I tried to "take it easy" when I didn't feel well. The best thing you can do is exercise. On bad days, make sure you at least sit up in a recliner. Staying in bed or lying on the couch will make you worse. Like the other people said, it is sometimes two steps forward and then a step or two back. It is hard, but try not to let the set backs make you depressed. Just hope that tomorrow will be better. Improvement can take years. I would suggest keeping a journal about what your day was like. If you read back in a year, you may see more improvement that you realized. Believe that you will get better and that set backs are part of the illness. Now go eat something salty.

I took BCP with no break for years. Loved them. They evened out the hormones and the monthly POTS flairs and stopped the migraines, unless I went off them. You know what works even better.....menopause. Love Menopause. Just can't say enough about it. Give me hot flashes over POTS flairs and migraines ANY DAY.

I find it helps me with dizziness. A doctor at the Mayo clinic told me to take ibuprofen when I am dizzy because it is a vasoconstrictor. I don't know if it is really a vasoconstrictor but I sometimes think I may have some kind of low level headache that causes dizziness and it helps that. I don't like to take it too often because it can hurt my stomach and I sure don't want to get a rebound effect. I take 800 mg at a time.

The Mayo clinic said the more I push myself the more my body will relearn how to be upright. Still, if a person over does it, you can pay for it the next day. The trick I think is to push your self, but not too far. On the other hand, I have a friend with POTS who really pushed hard by going to the gym everyday with a personal trainer, even though he had to get a ride there, and then crawl down the hall to get to his trainer. He was about 98% recovered within a year.

The reviews can vary from info you have to fill out, and info you have to send your doctor, to them sending you to their doctor. Initially they came every couple of years but the older you get, the less often they come. I thought I heard that once you get to 55 they practically stop. It is depressing to put all my pathetic limitations on paper.

A sinus infection or allergy can cause dizziness even in people without POTS. Getting rid of it may help improve other symptoms you have attributed to POTS.

It think the point of the steroids would be to reduce the sinus swelling, allowing the infection to drain. When my son was younger, he had chronic sinus infections. After months of antibiotics, we were sent to an allergy specialist. He determined it was a sinus infection and not allergies, and put him on: more antibiotics, an antihistamines, a decongestant, and steroids, all at once. The doctor said sinus infections can be difficult to treat and that antibiotics are often needed for a very long time to address one. He said he was going to go after the infection with the big guns. After completing all the above, he has not had a sinus infection in 8 years. He used to have them every time he stopped the antibiotics.