Michelle Sawicki

I experience some weakness in my arms when lifting things but, like Nina, I think you should talk to your doctor about this. There are definitely other things that should be ruled out. Michelle

Hi Alex! I almost always have a significant drop in blood pressure upon standing. I know a lot of doctors are now publishing info that says POTS does not include orthostatic hypotension, but I continually get letters from patients who have it. OH is traditionally defined as a decrease of at least 20 mm Hg in systolic blood pressure upon standing. Sometimes my bp drops that much, sometimes it doesn't...but it almost always drops. I should also tell you that I actually had high blood pressure when I first became ill. Personally, I think high, low and normal blood pressure can be associated with POTS. Take care, Michelle

I've had surgery to remove an ovarian tumor. The docs were aware of POTS and gave me plenty of extra fluids and also an arterial line. At one point I did go into bradycardia when I was under, but they countered it with atropine and I was fine. Make sure they are aware of your situation. There are some links here under anaesthesia that might be helpful for your doctors. Wishing you the best, Michelle

I thought you'd get a kick out of that one, Nina. Hope you're feeling better soon...especially before finals. Best of luck! Michelle

I think of the time that I was sick in bed feeling half dead as having "full blown POTS", and I have referred to it as such. I'm guessing he is saying you are very symptomatic. Michelle

NINA!!!! Sorry to hear about the nausea! Yuck! That stinks! Are you feeling any better now? Ling, Nina is a lady. I'll let her answer about contraceptives.... Michelle

Hi Ling! So glad to hear you have found something that helps! I love to take naps during the day, but sometimes I do feel more symptomatic afterwards. Don't think I'll cut them out, though. Michelle

Sorry that didn't work, Elaine. Try clicking HERE It is in pdf, so you do need acrobat reader to view it. Let me know if that doesn't work and I will send the info to you. Michelle

They only charge $10. for shipping and it arrives within 2-3 weeks. I will place my first order tomorrow, right after I take Kenny to his doctors and get a written prescription (his doc just calls everything in for us). I'll let you know how things go. Thanks again, Michelle

Hi Jessica! So good to hear you are feeling better. I hope it is due to the dose adjustment, and I hope it lasts! Michelle

Hi guys, When I heard Dr. Low (Mayo Clinic) talk about dysautonomia/chest pain he said he'd found SSRI's to be useful for it. WOPM, thank you for taking the time to share your husband's experiences with us. I'm glad your husband has found something that at least reduces the amount of symptoms. I found the article you posted quite interesting, especially since it mentioned hyperinsulinemia. I will be interviewing a doctor this week about hyperinsulinemia and have been reading a lot about it. Elaine, here is an article that you might find interesting (or boring ): http://www.mayo.edu/research/humanphysiolo...inson_2000a.pdf Michelle

Thank you Nina! The price I will pay in Canada is SUBSTANTIALLY cheaper than what I was paying here. To give you an idea, my son's med costs $120. for 30 pills here in the US. I can get 100 pills (3 months worth) for $59. through the Canadian pharmacy. That is fantastic! Thanks SO MUCH. Michelle

Hi Lisa! So glad to hear you found a doc that understands! Personally, I would have happily taken florinef if it had helped...even if I'd gained some weight. But that choice is yours to make....there are other drugs out there. Whatever you choose, I wish you the best. Michelle

Hi Beck! Welcome to the forum. You can read about treatments for POTS at: http://www.dinet.org/what_helps.htm When I was first diagnosed I really hoped something would be found wrong in me that could be "fixed". Something was eventually found wrong, but it was genetic and therefore could not be fixed. However, some people do get much better and live fairly normal lives (I am one of them). And there are those lucky few that seem to have a complete remission of POTS, although it sometimes comes back in later years. Proper treatment of symptoms can make all the difference in the world. Hang in there, we're here for you. Michelle

Hope everyone survived their relatives! I will never forget the Thanksgiving that my husband's aunt followed me to the bathroom after dinner because she "wanted to hear if I was going to throw up". Evidently she had concluded that I had some eating disorder because I was thin....? Yeah, those relatives...gotta love them . Michelle

Hope each and every one of you has a great Thanksgiving! I know I have so much to be grateful for....my health, family, and all of you who have made this forum such a wonderful and supportive place. Hugs to all! Michelle

Hi Ling, You can read my story at: http://www.dinet.org/personal_stories.htm There are other stories there that you might want to show your doctor as well. I am a million times better than I was back then, but I still deal with dysautonomia on a daily basis. Cleaning is especially difficult for me because bending up/down/over really exacerbates my symptoms. I just do a little bit at a time and try not to stress over the fact that my house isn't perfect. I am really just incredibly grateful that I'm able to live a fairly normal life again. Michelle

Hey Tim! I get chest pains every now and then. They feel like they are coming right from my heart and are usually a dull aching type pain, though sometimes I get the sharp, stabbing ones. It is a little scary to think that I've gotten so used to chest pains that I just ignore them now....if the pain is ever because of something serious I will surely just ignore it then, too. I also take magnesium and have found it to be helpful for chest pain as well as all those annoying "skipped beats, extra beats, odd beats" I was getting. But of course, talk with your doc before you try any new treatments. (I really should just start signing my posts with that ) Michelle

Hi Jessica! I only take 12.5mg toprol. Sometimes when I am having a bad day I will take more, but I can't take too much or it lowers my bp (which is already low). And I do drink pedialtye because it has less sugar. But you have to be careful about what brand you buy. Some of the off-brands taste absolutely gross. (Not that any of them taste good) I have found the regular pedialyte and the CVS brand electrolyte solution to be bearable. Hopefully you'll be able to find something to get your heart rate under control. I know it can be miserable, and I used to hate that out-of-breath feeling. Hang in there. Michelle

Hi Alex! I do some simple things when I feel like I am starting to crash.... I drink pedialyte, take motrin, eat something with protein that is salty, put on compression stockings if I'm not wearing them, cool down if I'm overheating, etc. etc. I would have to say out of all those things the motrin probably helps the most. One research article I read speculated that it may help OI patients by blocking the blood pressure lowering effects of prostaglandins A doc friend of mine also said it can help to conserve water. Whatever it does, it really helps me. Yes, I meant EDS when I was talking about the genetic predisposition. A recent study showed that 78% of patients with Joint Hypermobility Syndrome had signs of dysautonomia. Yes, I have tried to quit the meds when I feel better...but then I start to feel worse. I feel so much better with that small dose beta blocker than without it. I think I will probably be on meds for the rest of my life, but ya never know Take care Alex, Michelle

Hi Jessica! I wish there was something I could tell you I did to feel this good. I think my body just continues to heal from whatever it was that brought on full-blown POTS back in 1999. There have been bad times through the years, but never as bad as when I first was hit by all this. About a year and a half ago I was seriousy contemplating quitting my job. I would be sitting at my desk and feel so dizzy...like I was going to fall over. And now here I am feeling great. POTS is very unpredictable. I am much more in tune with my body now, and when I feel myself starting to crash I can take measures to (usually) prevent it. But the things that work for me will certainly not work for everyone, as we all seem to react to medications and such very differently. Hang in there, though! If I can get better -while having a gentic predisposition to this illness- you probably can too. Michelle

Wishing you luck on you appointment! Michelle

Hi Alexander, No, I was not suggesting the POTS was caused by bradycardia. I was just taken aback by the pacemaker comment...not a standard treatment for POTS. So don't worry. Michelle

I am doing great and have been feeling really good for over a year. I still have POTS...of course...but my energy has returned and I can do so much more than before. I honestly feel better now than I have in all the years I've had POTS. I have had bradycardia off the beta blocker too. But you should talk to your doctor about this. Did your doctor really suggest a pacemaker? Often the heart is speeding up to try and keep the needed blood supply to the brain. Michelle

Yes, I have had bradycardia as well as tachycardia. When I wore a heart monitor my heart rate fluctuated from 46 to the 150's. (The 46 was when I was sleeping). I have heard similar stories from other patients. My neurologist said he wanted to keep my heart rate around 50 (with a beta blocker). I suppose this was so that when I stood up my heart rate would still be in the normal range? Did you ask Mathias about this? BTW, are you feeling better these days? Still in school? Michelle