Dizzy Dame

I take continuous birth control, but I still have to have 1-2 periods per year. I know there are others on the site who have controlled their periods in the same way. I hope that helps

Good luck Lois with your workup! I've had the "mayo version" TTT before at Vandy...and the "regular" version when I first got sick. I much prefer no meds---my rates are high enough as is thank-you-very-much Anyway, I hope mayo can find some new treatments for you to give you even more energy and a better quality of life. I look forward to hearing how things go! -Lauren

Last summer it got so hot where I live that I stopped wearing my compression hose when I went out...but I also was too sick to leave the house often, so it wasn't such a big deal. I don't know where my health will be this summer, so we'll have to see. I think the skirt and cooling vest ideas are good ones. Good luck! -L

Hi Amy, I think if you're getting really bad, you should ask about lowering the dose of doxy. Trying to weather through a bad herx could just overload your already fragile system, as it did for me and others with lyme and POTS. I think you may want to have a phone consult with your LLMD, rather than trying to go throught the RN. Tell him/her your concerns and see what your options are. My LLMD has been very good at recognizing that I'm not the run-of-the-mill lyme patient---none of us with POTS are. We need to be extra careful with our bodies, because our POTS can be made so much worse by the herxheimer reactions. Anyway, you're still in my thoughts, and I'm sending you lots of healing vibes! -Lauren

They're going to send her home by herself?!?! Oh lord, that dosen't sound right. Does she belong to a church or other group that can help out? Pooh, you're still in my thoughts! Hopefully things will go smoothly from here on out, and they can get you set up with a caretaker for your first few days home at least.

My body has become used to midodrine over time. I actually get horribly sick if I miss a dose. I don't get dizzy on midodrine, but I sometimes get overwhelmed when it first kicks in. For example, lots of stimulus when it begins working can make me feel a little anxious. But this rarely happens, and usuallly wears off within a few minutes. Hopefully your side-effects will only be temporary. I'm glad that it's helping though!

Deucykub, I'm sorry that your boss is being so inhuman. People sometimes have very strange reactions to illness...one of which is to blame the patient. While I haven't worked since getting sick, I have run into my share of doctors who react similarly as your boss. One cardiologist refused to sign my disability paperwork for school, even though I was in a wheelchair right in front of him. He looked directly at me and said "I don't think you're disabled." I can say from my own experience that any time I feel I'm being discriminated against, I consult a disability lawyer. I had to sue my apartment building for discrimination last year, and I did this by 1) talkign to human services for my state. 2) Consulting a good defense lawyer. While you're not dealing with a housing issue, I'm sure that the human services in your state may be able to point you in the right direction. Honestly, maybe the best place to start is googling "disability discrimination Connecticut" and see what comes up. I wish I had better advice for you, but hopefully some others here will have more experience with discrimination at work and can offer more specific help. In the meantime, you'll be in my thoughts. Hopefully all this will get straightened out! Hugs, Lauren

Tearose, I'm so glad the visit went well! I know those big workups can be extremely emotionally, mentally & physically draining. It sounds like you're stable, though, which is a blessing. Hopefully within the next few years, more will be understood about POTS and sleep problems, I know so many of us have a heck of a time getting to and staying asleep. Anyway, welcome home

Pooh, I'm still thinking of you and sending you bunches and bunches of positive vibes!

I've had a hard time keeping weight on too. I can't eat any sugar or fruit right now because of reactive hypoglycemia, and I'm on a gluten reduced diet...so getting those extra calories has been tough. Right now I eat mostly veggies and meat or eggs, but I also occasionally have a bit of cheese in my meal. I also snack on "Glucerna" bars, which are meal bars designed for diabetics. They have lots of nutrients but are also safe for people with reactive hypoglycemia. Also, eating nuts is a good source of calories. If I lose any more weight, I'm going to start eating peanuts and such during the day. Nuts are also a good souce of essential amino acids and other nutrients, so they're a really smart snack.

Melissa, it's so good to see your post! I, like many on the forum, have been so worried about you! I'm glad you've had some improvements, but so terribly sorry you're continuing to have to deal with life and death issues on a daily basis. It's not fair, and I wish there was anything I could do to lighten your heavy load. You're still in my thoughts and prayers daily, and of course, we're all rooting for you and are always eager to hear how you're doing. Hopefully the next few weeks will bring more stability to your situation and give you a little peace of mind. (((BIG HUGS))) Lauren

Hi Amy, That's a question I've been wondering as well. I know that a herxheimer reaction can make POTS worse, but some people who don't have POTS, develop it when herxing. However, I think that us with POTS can go into a "hole" as we call it because of the antibiotics I had a very bad herxheimer reaction in January after upping the dose of the anitbiotics, and we stopped the antibiotics completely in late January. I was improving for a week or so, then suddenly went into a crazy POTS hole, which I've been in ever since. Right now I"m not on any antibiotics, but am having all they symptoms of a herxheimer reaction...and have also had new symptoms like seizures and visual disturbances. I think that when our bodies are already so weak, sometimes just the upset of starting antibiotics can make us worse. Just like how we get worse under any other stress. I know that's not really an answer to your question, so I'm sorry. My only advice is to be very careful and take things slow. If your symptoms are getting much worse, I'd talk to your doctor about slowing down the dose a bit, to let your body recover. Hugs, Lauren

Oh Morgan! I'm so sorry. I know it feels like you're being abandoned, but hopefully things aren't as bad as they seem. I'm sending you big cyber hugs though! Have you seen a psychologist? I have a therapist who has actually written letters to doctors telling them I don't have any psychological problems that could be causing my symptoms. While I do have a great team of doctors who recognize my poor health is physical, the letters have helped with some specialists I've seen who think otherwise. Maybe you could do something similar? Anyway, I'm sending you lots of positive thoughts. Hopefully things will feel better soon! Hugs, Lauren

Hi Rachel, I spoke with my OBGYN yesterday about my improvement because of the birth control, and he's actually going to put me on a higher hormone pill to see how I do. I think all pills have the same amount of progesterone, but some have more estrogen than others. Here's a link that may help you: http://www.wdxcyber.com/ncontr13.htm It doesn't talk about dysautonomia, but it does talk about irregular periods and which pills help what. I hope that helps a little! Lauren

Hi Linda, I don't experience hearing loss, but I wanted to send you a cyber-hug! I'm really hoping those docs of yours can figure out what's going on with you, because you've been suffering for long enough girl! BTW, did you ever make it to that appointment in NY? Hugs, Lauren

Welcome! I'm sorry you have to be here, but glad you found us! We're a sick, but loving bunch, and hopefully you'll find many friends here

Em, I was saying that estrogen can act a little like florinef with helping retain sodium and water, I've pasted the portion I read below that alerted me to this. I hope it anwers your question "Estrogen in high doses is known to cause weight gain especially that due to fluid retention (1). The more estrogen there is in a pill, the more tendency to gain weight such that a 50 mcgm pill will result in more weight gain than a 35 mcgm pill (1). The mechanism of action is probably direct stimulation by the estrogen in pills of kidney substances called renin-angiotensin that cause water retention. The water retention then causes sodium (salt) retention. A lower estrogen level pill, e.g., 20 mcgm, will help reduce weight gain due to fluid retention.This was confirmed in a more recent study with 30 mcgm pills in which there was essentially no difference in weight gain or weight loss between the placebo group and the oral contraceptive group (1). Again, however, 30% of these women had a weight gain of more than 1 lb but the net result was the same in the control group. Those who did have weight gain had increased fat but no difference in fluid retention amounts indicating that fluid weight gain may be less of a problem with the newer, lower estrogen pills." PS. I got the above information at the following link http://www.wdxcyber.com/ncontr11.htm

I've been doing a bit of research myself and it turns out that estrogen (one of the main components in birth control) can act in a similar capacity as florinef, by helping trick the kidneys into retaining water and salt...who knew? So that's probably why we feel better when we're on the pill. Emily, I'm glad the pill has helped you! As for stopping BC, my doctor didn't tell me to, but I stopped it myself because I was having so much breakthrough bleeding. I'm going to try to find a BC that won't interact with my antibiotics in the future Did your doctor say that antibiotics just affect the contraceptive part of the pill? And not the hormones? If that's true, maybe I should talk to my doctor about that.

(((Hugs))) Rachel. I think you should call the office on Monday and ask to speak the office manager about the cancellation. Perhaps you could also try to reach the doctor directly? Hopefully this was all just a big mistake! -Lauren

Hey Rachel, I'm on ortho-trycyclin low, but am thinking about switching to a higher hormone BC when I go back on antibiotics. Also, I haven't talked to my doc yet about it, but I see her next week and will definitley bring it up. I honestly have no idea why the extra hormones are helping so much, but they are definitley helping! I'd also give it a shot with the BC if you're thinking about it. The good thing about the pill is if you react badly to it, it'll be out of your system within 24 hours, so you really don't have much to lose. Hugs, Lauren

Pooh, I'm so sorry dear about everything that's happened! I'm praying for you! Hugs, Lauren

Melissa, I just wanted to drop in and let you know you're still in my thoughts every day. I hope you're getting lots of rest after that horrendous month in the hospital, and hopefully you're feeling a little better too! Hugs, Lauren