Gena

Hi everyone. I might be sliding my way down in the canyon to join you. I don't think it's the change of seasons for me, b/c it's still hot as heck here in Florida, but I think it's job stress. I've been so very stressed and overwhelmed at work that it's causing all my POTS symptoms to flare up. I'm completely on edge. I jump at any little noise, I'm having nightmares whenever I do sleep and terrible chest pains, forceful heartbeats, tachy, low BP, etc. Emily, when I wake up in the middle of the night, I try to force myself to stay in bed at least 45 mins. and try to fall back asleep. If I can't ,then I finally get up and get on the computer to take my mind off everything, but then I'm up for a few more hours before returning to be. And then the alarm clock goes off right when I'm drifting off and I have to go to work. It *****, for lack of a better word!! Corina can you send some of your sleepiness my way too? I haven't been drinking my magnesium tea in a long while, so maybe I should go back to that!! It seemed to help me sleep before. Well I'm sending hugs, healing thoughts and tea and cookies to everyone down here. I'm waiting for the resuce helicopter to come bail us all out! Gena

Lois, I can't imagine having to deal with POTS and breast cancer. You are a real trooper and I wish I could meet you in person to give you a great big hug. Feel free to vent anytime. I'll keep you in my thoughts and pray that your body finds the strength to heal and that you keep your courage and determination to find something positive in each day. I know some days must seem overwhelming, but just know we are here for you anytime you need to let your frustations out or just need a cyber hug. My best to you, Gena

Prayers and healing thoughts go out to Dan and family. I hope you have a successful surgery and a speedy recovery. Blessings and hugs to you. Gena

Hi Steph, haven't heard from you in a while. I know you've been going through a lot, so it was good to see your post. Don't try to take on too much though. We love to see your interesting research articles, but I'd much rather you take care of yourself and family first! Thanks for reaching out to the new members and always finding intriguing information or answers to questions and problems. Hang in there and you know I'm always a phone call away if you need to commiserate! Hope your back and other pains disappear quickly! ((Hugs)) Gena

I've had the teeth chattering and whole body shaking after bad tachy/adrenaline rush episodes on several occasions (although hasn't happened for many months, knock on wood! ) I've also had a tingly/numb feeling on one side of my face for a few days, but it's always gone away. Unless it's a symptom that persists for a long time or causes me a lot of pain, I've learned not to worry about these weird and wacky symptoms! you are not alone! Gena

I take colloidal silver, astragalus, vitamin C and a wonderful liquid, I believe it's called Cold Care Formula by a company called Buried Treasure (it has a mix of everything I just stated plus a lot of herbs to gently boost your immune system.) During the winter months I take colloidal silver on a daily basis and I haven't had a cold in almost 2 years. (knock on wood!) Hope you feel better soon. Gena

Welcome! My symptoms are mostly at night too...I can go for long periods of time without having symptoms though (well, at least not major ones). I function pretty normally during the day, but the heat can really get to me and make me symptomatic. My BP drops very low at night, so regardless of how good or bad my symptoms are, I always use a wheel chair to roll myself to the bathroom in the middle of the night, as this helps prevent any major tachy spells from trying to stand and walk after lying in bed for hours. When I first came down with POTs, I got a lot of those adrenaline rushes and tachycardia in the night just as you describe. Now it's mostly just tachy, arrythmias, chest pain and sometimes dizziness. You'll find lots of good info and support here. Gena

That's amazing Ernie. I'm so pleased and proud. I knew you'd do just fine. You must be so proud of yourself. I can tell from your posts in the last few weeks, especially since you got your new wheels that you seem like different person. A new and improved woman. I hope you continue to climb mountains and leap tall buildings in a single bound! Hugs, Gena

Kite, I've been wondering about you too. In fact I was going to send an email to you to see how you've been, but I see you're out there and doing okay. Good to know. Glad to hear your move is completed and all went well. Looking forward to seeing your posts again. Welcome back. Gena

Melly, I noticed you said you lived in Atlanta area. Have you tried getting over to Birmingham, AL to the Dysautonomia and MVP Clinic there? They have some decent docs that are very familiar with dysautonomia and could probably help. Hope you feel better soon. (By the way, my BP is always low too. At night it will run as low as 70s/40s, during the day around 90/60 on good days.) My body is learning to adapt somehow though. Gena

Em, I know you....you will not only be dancing in the light again, you will be doing the moonwalk, jitterbug and the tango!! Give it some time. I've come to realize how cyclical this illness can be. Sometimes it's scary thinking the cycle won't come around to the other side...that we'll never see the bright side again, but we do eventually. Hang in there girl. Hopefully you'll get some good nights of sleep in the near future too. Some good solid zzzz's always helps to to turn my world around. I hope you find the light soon. Hugs and well wishes Gena

HI Gwendolyn, I've never had this test done but here's what it involves, according to my Prescription for Nutritional Healing book... It measures absorption of lactose into the digestive system. There are 2 kinds... 1. Lactose tolerance test, in shich a person drinks a liquid containing lactose after fasting overnight. Approx. 1/2 hour later, the amount of glucose in the blood is measured and the presence of symptoms assessed. If blood glucose does not rise by at least 20 points and esp. if there are symptoms like bloating or discomfort, a dx of lactose intolerance is made. 2. The Hydrodren breath test measures the amount of hydrogen in the breath. Again the person is given a drink containing high level of lactose. When lactose is improperly digested in the colon, gases form and are carried through the blood to the lungs and then exhaled. A higher level of hydrogen in the breath indicates faulty digestion of lactose. It sounds pretty harmless. Hope this helps. Good luck. Gena

Best wishes for you Morgan. I know going to the hospital is no picnic, but just keep imagining that you're on vacation on this island oasis with cool breezes and sparkling waters and you have people around you waiting on you hand and foot. I'm sure with your wit and humor you will keep everyone, including yourself, laughing in spite of it all. I hope they find some answers or else that you will just naturally improve and walk out of there sooo much better! Hugs, Gena

I get leg pain too. As far as lower abdominal pain, it's may be due to consitpation, / slow motility issues which can be common with POTS. However you may want to talk to your doc about a colonoscopy or pelvic ultrasound to rule out obstructions or anything else that could cause your symptoms. Gena

Chad, The best way that doctors have today for detecting dysatuonomia / POTs (although it's not foolproof) is the tilt table test (TTT). Have you had one of these? When my symtpoms are bad, I also get the strong heartbeat in the belly, gurgling in the stomach and all the other symptoms you describe. Although after a year of dealing with it, I now have many of my symptoms fairly well managed. Although today they've all flared up again for some reason! Anyway, it did help me to learn to control the anxiety related part so that I didnt' add fuel to the fire by freaking out when I had POTS episodes or bizarre symtpoms. I've learned to calmly talk myself through most of them. The abdomen and chest often get tight due to the anxiety. Your body may be producing too much adrenaline or sometimes our bodies overreact to small amounts of adrenaline, which can really increase anxiety and put us on edge. Visualzation and calming/ breathing techniques can help. Although it takes time and persistance. You may want to ask your doctor about an anti-anxiety med that you can take as needed to get you through the rough spots. I think the best thing would be to get a definitive dx first, and that will at least give you some peace of mind. Hang in there. Gena

Glad to hear Crissy it enjoying class. Environmental factors may certainly be playing a role in aggravating her symptoms. Consumer reports gave the Friedrich air purifier the best performance grade (it has many stages of filtering including carbon, electrostatic and others. It cleans by just putting the filter in the dishwasher. Only the carbon filter has to be replaced once or twice a year. It's expensive but worth it. It is an ion air purifier, and emits some ozone, but very small levels. Too much ozone can have a negative effect on people with respiratory problems or who are just very sensitive. Consumer reports showed that of the ion purifiers tested, the Freidrich purifier generated very small, safe levels of oZone. Hepa filters are very good too if you religiously change their filters. Any air purfier is only good if you maintain it and keep filters cleaned. Hepa filters costs can add up quickly though. I used an Oreck that my mom had for a few months in my room. Most ion purifiers give you the option of whether to turn on the ozone generator or not. They still effectively clean without the ozone too. I would turn on the ozone generator during the day while i was out. When I returned home I'd turn off the ozone. Then the levels taper off and I sleep without ozone at night. I found that system worked well for me. Hope you find something that works well. P.S. Consumer reports also said the Sharper image ionic breezes did a very poor job at cleaning the air and also emitted much higher ozone levels. Gena

Hey Sunfish, I can understand as to how you would get offended by her reaction of "here, read these two books and call me in the morning", but I think she was well intentioned, although completely ignorant of the situation. She obviously isn't very sensitive to the very issues that she teaches in class! I was wondering if perhaps after she gave you the books, did you say anything like "there's a standard protocol for diet, exercise and various meds that is well known for this condition, but these things only help to manage my condition and there is no known cure. ..."I've been to various specialists and have access to the latest research on my condition; I do everything possible to keep things in check, but it is not an illness that can always be controlled." So there, lady! I think I'd bring a large pile of printouts on dysatuonmia research and a book on dealing with disabled or chronically ill persons and hand them to your teacher at your next class and say "here, maybe this will cure you of your bold assumptions and insensitivity to my situation.! As you can see, you've got me fired up too. Seriously, though I think she meant well but I would do the sealed envelope thing in case there are any problems down the line. Hope it works out for you, Gena

Hey Stacey, Good to see you post again, although I'm sorry you're fighting those awful headaches. When I first got POTs last summer, boy oh boy...I had killer headaches just like you describe for days in a row. They also switched sides. I still get them from time to time, but usually they only last for a day and it's often when my BP is really low. But I remember last year, I never thought I would live through those headaches. Incredibly painful and they made me really grouchy. It's like you can't think or do anything because it's so unbearable. Hopefully they'll eventually subside for you like they did for me. P.S. I loved the beautiful poem you wrote in the last DINET newsletter. I printed it out and it hangs on my wall at work! Hugs, Gena

I hope they make this trip worth your while Morgan! I'll keep you in my thoughts and prayers. Do you know exactly what other tests they might be doing that they haven't done before? Best wishes. Hugs, Gena

That topic was just recently posted... Here is a link to it. http://dinet.ipbhost.com/index.php?showtopic=3343 You will find good suggestions there. Good luck! Gena

I've been wondering about this question too! Thanks for posting it. I guess you don't see a lot of 80 year olds posting stuff on the internet or discussion forums, and I bet a lot of 80 plus year olds who do have POTs might not even know it since doctors are just learning about this mysterious illness. So while they're may be plenty of potsy seniors out there, they just might not be here on DINET. It would be interesting to see if they've done any studies on POTs and how long people live with it. I want to live to be at least 100! (But some days it feels like I'm lucky if I make it through the night!) Gena

Steph, I guess what's one man's poison may become another man's cure (for certain conditions anyway, as the article suggests.) Keep those strange and wonderful articles coming. We need to talk about our project too, so give me a call when you have a chance! Gena

Interesting article. Perhaps the medical dosing they are using will not have side effects such as cancer that sodium nitrites and nitrates are known to cause. I can't believe they didn't even mention in the article that these are known carcinogens. So let's don't all rush out and eat lunch meats preserved with nitrites! Here's some info on the dangers of nitrates... "Consuming processed meats increases the risk of pancreatic cancer, says new research conducted at the University of Hawaii that followed nearly 200,000 men and women for seven years. According to lead study author Ute Nothlings, people who consumed the most processed meats (hot dogs and sausage) showed a 67% increased risk of pancreatic cancer over those who consumed little or no meat products. But researchers failed to accurately identify the culprit responsible for this increased risk of pancreatic cancer, says one author. The true cause of the heightened cancer risk is the widespread use of a carcinogenic precursor ingredient known as sodium nitrite by food processing companies, says nutritionist Mike Adams, author of the just-published Grocery Warning manual at: http://www.TruthPublishing.com/GroceryWarning.html Nearly all processed meats are made with sodium nitrite: breakfast sausage, hot dogs, jerkies, bacon, lunch meat, and even meats in canned soup products. Yet this ingredient is a precursor to highly carcinogenic nitrosamines -- potent cancer-causing chemicals that accelerate the formation and growth of cancer cells throughout the body. When consumers eat sodium nitrite in popular meat products, nitrosamines are formed in the body where they promote the growth of various cancers, including colorectal cancer and pancreatic cancer, says Adams. "Sodium nitrite is a dangerous, cancer-causing ingredient that has no place in the human food supply," he explains. The USDA actually tried to ban sodium nitrite in the 1970's, but was preempted by the meat processing industry, which relies on the ingredient as a color fixer to make foods look more visually appealing. "The meat industry uses sodium nitrite to sell more meat products at the expense of public health," says Adams. "And this new research clearly demonstrates the link between the consumption of processed meats and cancer." Pancreatic cancer isn't the only negative side effect of consuming processed meats such as hot dogs. Leukemia also skyrockets by 700% following the consumption of hot dogs. (Preston-Martin, S. et al. "N-nitroso compounds and childhood brain tumors: A case-control study." Cancer Res. 1982; 42:5240-5.) "

I guess dysautonomia is truly a strange beast, because I have noticed the exact opposite problem. I experience sensations and pain in my skin much more intensely than before. Hmmm, very odd. Gena

Julia, When my POTs was at its worst last summer I went through spells of shaking and tremors like you describe, but they usually passed in a couple of hours. About 5 or 6 years ago I went through a period of several months of having tremors almost every day, but then they dx'd me with celiac and I went gluten free and they finally went away altogether. Last summer when the POTS came on strong, they came back, but seemed to be a different variety than before. It's truly an awful feeling, especially if you're having them for long periods of time. I am sending you gentle hugs and healing thoughts. Can you take a warm epsom salt bath? or does that increase your symptoms? The magnesium from the epsom salts can often have a calming effect. Hopefully your cervical collar will give you some relief. Hang in there. (P.S. I know what you mean about spelling. I hate that I forget some of the easiest words... and I majored in journalism! ) Gena