avais1

From your neighbor in Minnesota, try this: 1) Keep feet dry 2) Get a heavy duty plastic bag, and put some rice in it. Heat the rice in the micro, and stick the "rice sachets" in your outer socks (polar fleece, smart wool, etc.) for a few minutes. First pull on the nylon layer socks, then stick on the heated outer socks (without the sachets) . This should give some nice insulation. 3) Invest in some very good Sorrel boots for outside - warmest ever made. 4) When desperate, it's bath time! 5) At night, stick them under the person lying next to you (My fiance loves this one). Good luck!

They say it is always darkest before the dawn. Hang in there, we are all pulling for you. You are NOT alone. My prayers and thoughts are with you. Strength, love, hope, and friendship to you. You will make it through this, I promise. Here is a little poem for you: DON'T QUIT When things go wrong, as they sometimes will When the road you're trudging, seems all uphill When the depths are low, and the faults are high And you want to smile, but have to sigh When care is pressing you down a bit Rest if you must, but don't you quit! Life is queer, with its twists and turns As every one of us, sometimes learns And many a failure, turns about When you might have won, had you stuck it out Don't give up, when the pace seems slow You might win, with another blow Don't Quit! (sorry, I don't know who the author is).

Thank you all so much for your very kind words. I can't tell you how much they have meant to me. I am so grateful to have all of you to talk to. Here is some good news: I followed your advice, and I am feeling much better. I loaded up on salt and fluid, had a good cry, and pulled myself out of bed. I seem to be more stable now, thank heaven. I guess I was thinking that maybe this was "all over" (like you said), and I thought I would go into a "remission" if you will, like I did before. But, I am 10 years older now than the first hit, and I have to remember to take it slow. I am one of the lucky ones, in that all I take is 5 mg of Lexapro. Otherwise, I haven't really needed anything drug wise. The part that is the hardest for me is that I have that weird GI thing, where my motility decides to take a hike and sit there. I am considering trying some Zelnorm for that. Have any of you with GI issues tried that? At any rate, thank you again so very much. The best to all of you!

Hello, and Happy New Year to all! I hope this e-mail finds all of you doing better than I am. After a long respite, I had a doozy of a POTS attack the other night, and had bad symptoms for a few days following. It had been so long, I forgot how terrifying the spells are. However, this one was particularly disconcerting, as it happened in the middle of the night, AND I WAS LAYING DOWN. In fact, the only way to stave off the severe nausea was to hold absolutely still. Even turning my head would set my heart off. I had it all, the severe nausea, the rapid heartbeat, sweating so much (and everywhere) I was swimming in it, panic, dizziness, etc. I couldn't get away from it, because I was already laying down. I am reaching the "two year" mark in February. I know I am one of the lucky ones, and should not complain, because I generally have been doing quite well. But after reading some of your posts, I am left disheartened. The reason being, that when some of you have POTS spells, you can "work through it". I, on the other hand, am completely incapacitated. Can I ask, how many of you have spells while laying down? Dr. Low once told me he wasn't sure what caused that, as POTS is when you stand up. Needless to say, that too was disheartening. I am needing your support, as this last spell has really done a number on me psychologically. I was thinking I was done with this, (I went into a recovery period of 5 years symptom free before) but it looks like this time I will not be so lucky. Anyway, sorry to cry my eyes out to you, but my fiance doesn't understand, nor my family. Only you lucky, chosen few !

Hi Merrill, I had something very similar happen to me about 4 nights ago. The weird thing is, I too, have been battling a nasty cold. The attack hit me laying down as well, in the middle of the night, which was also very odd. I get the severe cramps usually in my thigh muscles, but I do get them in my neck and my arms too. I literally can't move when I get them this bad. It was a very strange attack. Make sure you get checked out by your doc. I didn't, but I sometimes, although rarely, get these weird spells, so I am a little used to it. I asked Dr. Low about them once, and he was stumped as well. Anyway, hang in there, and know that you are not alone (although I know it is really terrifying, especially in the middle of the night ).

Sorry, I forgot to add a couple more things. This test IS NOT APPROVED BY THE FDA. You can check their site. Also, I do know that when the body processes mercury, it processes it through the kidneys. If your daughters kidneys are okay, then I doubt there is an issue. You can find evidence of this in the Journal of American Medicine. Again, good luck!

Here is another site from the EPA: http://www.epa.gov/opptintr/pbt/mercury.htm I have also attached some information: How can people be exposed to mercury? People are most likely to be exposed to metallic mercury from mercury released from dental fillings; however the amount of mercury released from dental fillings is generally not considered to be high enough to cause adverse health effects. Exposure may also result from industrial processes or from breathing in air contaminated with vapors from metallic mercury spills. Mercury in the form of methylmercury is of greatest concern, and the common route of exposure is ingestion. Methylmercury is of particular concern because it can build up in certain fish to much higher levels and these fish may then be eaten by people. Federal Food and Drug Administration (FDA) regulations prohibit the sale of commercial fish that are found to have high concentrations of methylmercury. Also, state and federal authorities issue public health advisories to warn people about eating fish caught from local waters that are contaminated with mercury. TOP Who is at risk from mercury exposure? Except in occupational settings where elemental mercury is used, most of the health risk from mercury exposure is due to methylmercury exposure from fish consumption. Many factors determine risk from exposure including the dose, the duration, and the type of contact. The developing fetus and young children are a higher risk population because methylmercury in the mother?s body may enter the unborn child and breast-feeding infants. Young children are at risk because their nervous systems are still developing and because of their lower body weight compared to adults. Exposure and health risks may be determined by measuring the amounts of mercury in blood, urine, breast milk and hair. Over time, the body can rid itself of some contamination. Adults who consume an unusually large amount of contaminated fish on a regular basis may also be at risk. The only word of advice I have is RESEARCH RESEARCH before your poor daughter has to go through this test. She may not need it. Good luck.

Leah, I am suing my former employer of over 8 years for something very similar. I have won twice so far, and I am in the midst of a third lawsuit. Put all of your documents together, get an attorney, and go after this person. If she did it to you, she'll do it again. This is your chance to help the next disabled person.

Hello! Sorry, I am catching up on the forum, or I would have replied sooner. I take 5 mg of Lexapro, and have for two years. I really do well with it. It slowed down the GI/IBS symptoms, and it did slow my heart rate down. During the first 5 months of taking it, I would literally have energy racing through my veins. A coworker said I was literally radiating energy. I talked fast, walked fast, I felt stuck on hyperspeed! It was great while it lasted, except for the insomnia, for which Dr. Low gave me phenobarbital (which I only took once 'cause it made me ill). After about 5 months, I did come back down to earth. I didn't crash, I just returned to a normal level. My POTS was improved after I started the Lexapro, I was able to return to work full time and resume going to school part time. For me, it has been a lifesaver.

I am so very sorry to hear of your poor daughters struggles. I don't know if this is a part of dysautonomia or not, but I can tell you my experience. Before I knew I had dysautonomia, mainly POTS, I can remember breaking out into a rather strange rash when I was 17 years old. I was already on allergy meds, and the doctors didn't think it was allergies at the time. It was red, small "blothes" if you will, and it literally was all over my entire body, INCLUDING, the palms of my hands, and the soles of my feet. It itched like crazy, and before the rash was done, the skin on the palms of my hands literally peeled off. I was tested for everything under the sun, including measles, hand and foot disease, and they were all fine. What I was told were two things: 1) Certain viruses can cause an outbreak in the skin 2) Intense psychological distress CAN affect the immune and nervous systems, and they can go haywire. I was about to graduate from high school at the time, and had just gotten over a virus, so I think it was a combination of the two. Sometimes, when we feel so ill, it can take its toll on us mentally and emotionally. Sometimes these things can manifest into actual physical symptoms. I still get strange "hive like" rashes sometimes when I get ill with a virus (in fact I have one now after battling the flu/cold for the last 5 days). I have been told by my docs that this is just how some peoples immune systems react, and I basically live with it. As long as the doctors have not said it is anything serious, I would not worry about it. At any rate, my thoughts and prayers go out to you and your little girl. I can relate, I used to be like her. God bless.

Hi Friday! I am a catecholamine mess. Yes, it does make a difference when you sit, lay down, and when you stand. Mine were tested at Mayo. When I lay down, they are normal, they are 297 (norepinepherine rate for normal ranges from 70- to 750). However, when I stood up, they jumped to 800, which is well past the highest normal reading. Mine was done with a blood test, with an indwelling line, so that I would be unaware when they were pulling blood out of me (to compensate for any anxiety factor). I hope this helps!

Greetings to all! I firstly want to thank all of you who have shared your information and personal experiences about flying on this site. I just finished reading all of the posts about flying, and thank you so much to all of you brave souls! I used to fly quite often, but have not flown since my POTS relapse from last year. I have been trying to get my courage up to give it a try again. I do have two questions that I have not seen addressed on the previous posts, and I am wondering if any of you can help. Since POTS hit me again a year and half ago, I have become very sensitive to motion. During take off and landing, did any of you have issues with motion causing dizziness, nausea, etc.? My last question: Have any of you had a full blown POTS (especially the tachycardia) or anxiety attack while on the plane? If so, how did you reslove the issue? Thank you all very much. All of your posts brighten my darkest days !

Good news! I just went to the dentist last week, and I had novocaine (with the epinepherine), and I was just fine. My heart was pounding through my chest at 100 miles an hour, ...but that was BEFORE the dentist even injected me because I was so darned nervous!!! This was my first visit since having POTS relapse last year. HOORAY!

It sounds like we have all had this problem. I, too, was convinced by a doc that it was "all in my head", and was in therapy for 9 months. I was lucky, I got a very good psychologist. I was diagnosed with generalized anxiety disorder (who in America DOESN'T have this ). He and I worked very diligently on controlling panic attacks, etc. We tried hypnotherapy, guided imagery, cognitive therapy, you name it. I will say, that I DID learn a lot, but the attacks kept on coming. Then on a fateful day, I had a full blown attack in his office, for about 3 hours. He immediately sent me to the clinic side, (he was located in the same building as my doc) and advised that this WAS NOT a panic attack that he had just witnessed. He too, helped me fight docs that wanted to go for the "easy psych answer", as he had been working with me for 9 months, and really couldn't find much mentally wrong with me other than general anxiety. I talked to Dr. Low at Mayo about this, and he quite surprisingly had a lot of insight to this issue. He stated how POTS can cause anxiety, and how anxiety can exacerbate POTS. The area in the brain for both of these phenomena, are located in the same spot (Locus Coreolus?). It is like trying to walk a double edged sword. He also talked about how medical science in general has tried to separate mind and body, but really, they cannot be separated. They can feed off of each other, and one can get caught in a vicious cycle. At any rate, sorry for the book. But if you are interested, I have a real book to suggest It is called "Mind Body Deceptions" - the psychosomatics of everyday life. Take a gander, and make your own opnions. Good Luck!

Hi there! Call 507-284-3940, this is the secretary for the Mayo, MN neurology department. It's how I track down Dr. Low. Good Luck!

I am right there with you! I was on Depo-Provera for 8 years, and then stopped taking it when POTS hit (that was just coincidence). I then went on Ortho Tricyclen LO, which made me have an extreme POTS attack, and the nausea was so unbearable I did throw up :angry. I lasted 48 hours on it. I was confused by this, as I had taken regular Ortho-Tricyclen before, and it was fine. Of course, that was BEFORE POTS . Then I tried the Patch, and had to take it off after just 6 hours. My nausea was creeping up, and my heart started beating funny. Then, I tried the Nuva Ring. It was the best of the three, but I only lasted about 7 hours, and then all of the symptoms hit. I am now going to try Yasmin. Wish me luck, here goes try number 4............ I have found only two articles regarding estrogen and dysautonomia. It stands to reason that since these drugs carry warnings about stroke and heart issues, that they DO have an affect on blood vessels. Since POTS is a disorder of blood vessels, I have to believe there is something correlating the two. The other thing that strikes me is how POTS picks women over men 4:1. What is is about our bodies that POTS likes? Makes me wonder....hormones????

Sorry to hear of your struggle. However, nobody knows your body better than you do. I would suggest being your own doctor. What I mean by that is the following: 1) Get on the computer, and research everything you can get your hands on 2) Keep a log of all of your systems 3) Try to find "triggers" that seem to make you feel worse 4) Question your docs Remember, the only difference between you and a doctor, is that they have had more years of formal education in their "trade". They are not miracle workers. I researched a lot of my symptoms on-line, and then printed what I found on the internet, and then brought it in for my doctor to read. We then discussed possibilities. I know it is frustrating. Unfortunately, the medical sciences are still flying blind when it comes to autonomic dysfunctions. I was even told this by Mayo. One thing I do know that will make things WORSE: fretting about it. Good luck to you!

What I find that really helps is RELAXATION. Sorry if this is too graphic, but here is what my fiance and I do: 1) RELAX! My fiance gives me a nice massage before sex. We get so stressed running our daily lives, that we don't take time to unwind. Message stimulates the capillaries, and being POTS patients, we all have trouble with those little buggers ! A nice massage does help to increase blood flow, and this can help with the numbness anywhere on our bodies. 2) Breathing: I am a firm practicer of Yoga. I practice deep breathing, and I do this BEFORE I have sex. It helps me relax, and focus at the same time. If things start to get too intense, we simply slow down, I reconnect with my breathing, and go from there. 3) Vaginal dryness and numbness: I learned this from my OB/GYN, who by the grace of God, is familiar with Dysautonomias. People with ANS malfunctions tend to run on the dry side everywhere, eyes, mouth, throat, etc. What he advised was two things: 1) Use of lubricant, not just during sex, but periodically throughout the day. I use KY silk-e, it seems to work the best. 2) There is a product called Refresh or Replens. I use it as well. What can happen is, the dryness can throw the PH balance off inside of the vagina. This can lead to dryness and numbness. This stuff helps replenish the PH balance. Hope this helps! Good luck!

After my first bout with POTS 10 years ago (although it was unknown that it was POTS at the time), I was placed on Prevacid for two years. Then I was switched to Prilosec, and later Nexium. I have taken all of these off and on over 10 years. I don't know if they are the reason for my recurrence of POTS ten years later, or not. Howvever, I can tell you, I was not on any of these meds when I was hit with POTS 10 years ago, so I know they did not contribute the first time. I have GERD reflux, pretty severe due to a small hiatal hernia. So far, after 10 years of taking these meds, I have not had any bad reactions, or side effects. Not sure if this will help any of you or not, but you can take my experience for what its worth Good luck to all of you! Robyn

Thank you for opening this subject! I do not feel that your doc was "blowing you off". My Neurologist is Dr. Phillip Low, at Mayo, and specializes in POTS. Even Dr. Low suggested biofeedback to me last year. Keep in mind, I am only sharing what worked for me, and am in no way advocating any form of treatment, etc. Here are a few books and tips that I have tried: 1) Hope and Help for your Nerves: by Claire Weeks. The book is a little old fashioned, (it was written in the late '60's) but boy, was she dead on about autonomic nervous symptoms and how they relate to stress. Let's face it, these dysautonomias are enough to drive even the strongest mental warriors over the limit. For those of you who have anxiety attached to your POTS, etc., this book was a life saver for me. It really helped me gain control over the anxiety part, and while the POTS still hits, it is not as bad, as I can keep the natural anxiety that goes with it under control. 2) Guided Imagery - Bellaruth Naparstek. This book didn't work for me, but many people swear by it. Bellaruth is the pioneer in the Guided Imagery field. 3) Yoga - breathing techniques. I practice these during my most severe bouts of nausea. They do seem to work. 4) YAZ exercises - these are positioning exercises for people who are positionally or motion sensitive. They REALLY DO WORK! 5) Biofeedback - I have trieed it. For me, if I am having stress induced POTS, it really does help. But I do find that if I am "too far gone" into an attack, I can't maintain it. Dr. Low did give me some good "off the cuff" advice: Stay as calm as possible. The nervous system has a way of remembering things. If you can "teach it" to react calmly, over time, it probably will. Good luck to all of you. Robyn

I take Lexapro, and have been in on it for a year. I take a very low dose, 2.5 mg. It took about 6 weeks to get "used" to it, but after that, I was fine. Good luck with it. Also, I am going to Wyoming in 2 weeks - it may be hard for us, but we'll both survive the mountains!

Hey there! Eating problems were the reason I went Mayo Clinic (I lost 37 pounds in 30 days) and found out I had POTS. Here is what they told me: Many Dysautonomia patients can develop problems with gastric motility. This can come and go at any time. Basically what they mean is: food does not travel through the GI tract the way that it should. You can get "backed up" so to speak (thus, the burping, feeling full after just a bite or two, nausea, etc.) What they told me to do was the following: Drink warm liquids (I like Green Tea), sip your broths, and try some Pedialyte and Ensure (I like vanilla). I survived a month on that diet alone until I could tolerate "normal" food. What I have learned: Don't fight it. If you can't get more down, don't force it. If you feel up to it, and are not allergic, you can slowly add in rice, eggs (good protein), fish (much easier to digest that red meat and even chicken). Good luck to you, I know what you are going through, so don't feel alone. Robyn