Gena

HI there. I have celiac and must eat gluten free - I never cheat!! I know it may seem difficult at first, but it will get easier. For quick meals, I love Amy's brand frozen dinners -- many of them are gluten free. They will say "gluten free" right on the front of the package if they are. I find these at my local grocery store - Publix - but many health food stores carry them too. Most local health food stores have tons of gluten free options. I also like Amy's canned soups for quick meals. Many of them are gluten free as well. To purchase GF foods online, you can try www.glutensolutions.com. I like their website and have always gotten good service from them. As another poster mentioned, going on a GF diet before your endoscopy may give you negative results, although it normally takes longer than that for your intestine to heal and recover completely, once you're off gluten. If you feel better without gluten, then listen to your body. Best wishes to you! Gena

Nina, my first thought when I read your post was "I wonder if she takes Zicam or some type of zinc nasal spray?" I have read articles in the past that it totally takes away your sense of smell and taste. You may want to research this or just wait and talk to your doctor. I know you said you only used it a few times recently, but maybe you are sensitive to it?? Let us know what the doc says. Gena

When I'm potsy feeling or have low BP I get headaches that last for days or weeks. It's awful! I know how you feel. Whether they are migraines or not, I don't know. Sometimes a cold pack on the back of my neck works wonders for a while. Sometimes laying down for more than 10 mins. works too. At first it feels worse, but after laying down for a while it starts to subside. Hugs to you. It will pass. Try the chick broth or salted water and see if that helps. Gena

Persephone, So sorry to hear about your scary episodes. I am one of those whose symptoms mainly occur at night and mostly in bed while I'm sleeping -- or trying to sleep. My cardio at Mayo says find it interesting that I have this mostly "nocturnal POTS" thing going on. Anyway, I've had the heart symptoms and adrenaline rushes and the loud buzzing in the ears, but never the paralysis. I will dream about being symptomatic b/c that's my body's way of saying "hey, wake up dummy and do something fast!". I find taking a tiny bit of beta blocker or a small dose of Klonpin can help -- either prior to or during these episodes. YOu should talk to your doctor if these are new symptoms for you or continue to increase. By the way, you mentioned eating sandwiches and milk. Eating things like wheat and dairy, if you have intolerances to them, can wreak havoc on your neurological system, immune responses and other functions. I know from experience, as I have celiac and absolutely cannot eat any gluten. Prior to getting dx and going gluten free, I had all sorts of weird buzzing and ringing in the ears, twitches, whole body buzzing feelings, crazy heart rates and other strange symptoms. After going gluten free those symptoms went away. I still get some occasional ear sounds or buzzing, but usually only during a POTS adrenaline rush. It is well documented in research papers about celiac disease and other food intolerances disrupting other functions in the body. It is not just a digestive centered problem, as doctors used to believe (and many still do). I hope you find some answers soon. Hugs Gena

Wow, that sounds VERY high. I take a quarter of a 20mg tablet of Inderal just whenever my heart is acting up. If I take the whole tablet, my BP gets too low. You may want to ask your doctor to start you a low dose and titrate up or get a tablet that you can score and take small amounts of.

Momofpreciousboy....my cardio at Mayo said the exact same thing. He said that POTS could be caused by 40 different disorders. The underlying cause of POTS may be different from one person to the next. That is what makes it difficult for researchers.

Lois, I have been wondering how you are doing. I'm so happy to hear you are doing well and a SURVIVOR!! Hooray. You are truly an inspiration to us all. Have a blast in Atlantic City! Hugs, Gena

HI LindaJoy, Just a quick note to say I really feel your pain and fear in your post. I have felt as awful as you describe before, and it DOES get better. When you're in that horrible place, I know it seems like it will never get better, but it does. I really hope and pray the florinef does well for you. You should probably start out with a small dosage and work your way up. Hopefully your doctor will guide you on that. Sometimes it's a lot of trial and error until you find the right med. Have you tried a beta blocker for your tachy? I have tried several and most of them made me feel half dead and really lowered my BP too much. However, I finally found one that worked - it's called propolanol (sp?), and I think the brand name is Inderal. I take a quarter of a 20mg pill and it really does the trick - it always helps with my tachy and arrhythmias. Because I take such a small amount, I can take it on an as needed basis. In the mean time follow some of the other good advice (check magnesium and potassium levels, meditate, pray, and most importantly instead of dwelling on all of the things going wrong, try to focus on the positive things in your life. I find that if I write down positive things about myself, my body or my life and say them out loud I start to feel better, even in the darkest of hours. Sometimes it might be hard to find positive things when you feel like you're dying, but it really does work. I also love to watch funny movies, as it helps take my mind off things. And the endorphins from laughing help the body heal! I am sending you big hugs your way. I will keep you in my thoughts. Take care and hang in there. Gena

This is awesome. Loved reading about your kitty. I'll have to do this for my two canine kids. Thanks for passing this on!

Hey Em, I've been thinking about you a lot lately and wondering how you are doing. I was so happy to see your post!! Thank you for all the info. You are definitely the "pro" at dealing with the aftermath of surgery. I hope you are doing better. I know the last couple months you had been sliding deeper in the POTS hole. I know you were trying some new treatments...did any of them pan out for you? Yes, we got our goldendoodle and named her Ruby. She is now 4 months old and just a sweetheart. She and our cockapoo get along great. We took her to puppy obedience class and one of the other couples in the class also had a goldendoodle - named Rusty and he's just a few weeks younger than Ruby. Okay, I'm getting off topic here, but I wanted to say thanks for your post. Keep in touch and let me know how you're doing. Hugs, Gena

Thanks to everyone for your suggestions, great tips and advice. I will print these out and take them to my doctor and anesthesiologist. You guys are the best! The surgery won't be until early June, but I'll let you know how it goes. Hugs Gena P.S. Lois, it's good to see you post. I hope you are doing well these days! And thanks for the reminder on keeping the head elevated. I can get very symptomatic when lying flat. Take care.

Poohbear, thanks for the links to those articles. I will send them to my doctor. Janet, thanks for the well wishes. Ellen, thanks for the valuable tip about the blood tests. I had forgetten that they often do that! I guess my final question is .....since the surgery will only take about 15 minutes, should I have a catheter inserted to manage fluids for fluids and arterial pressure management? I am not really familiar with this, but I"ve read about it in articles and other posts. Or should this only be done as a precaution in MAJOR surgery for those going under full anesthesia? Thanks, Gena

Michele, I have a lot of editing experience (although my spelling isn't as keen as it used to be since getting POTS!! So thank goodness for spell check:P ). Do you need someone to edit the newsletter, the entire site or what would be involved and about how many hours a month would it require? If you already have someone to edit, then I wouldn't mind checking for broken links each month. Just let me know. Gena

My gynecologist will be doing minor surgery on me in June. I told her that I have dysautonomia/POTS and she said that my legs will be elevated during the surgery (which will take about 15 minutes) and then lowered --will this cause any problems??. She said she can have extra blankets on me to keep me warm if that will help. She will leave everything else up to the anesthesiologist, whom I will meet with prior to the surgery. She said normally they do a light sedation in IV with anesthesia block from the waist down, or I can choose to go under full general anesthesia -- which would be best? Does anyone know if Dr. Grubb or someone else has published anything on surgery prep and post-op suggestions for those with POTS? It would be great to have an official document to bring to the anesthesiologist. If not, then I'll gladly take anyone's tips and suggestions to help alleviate any possible complications? Thanks, Gena

Michele, I'll be happy to get these printed again at the discounted rate I got for us last time. Let me check with the printer to see if he can do it at the same cost. It always depends on paper cost at the time, as that can fluctuate. I'll get back with you in a day or two. Gena

Willow, As everyone else mentioned they do sound like POTS symptoms, but it's best to get thoroughly evaluated. The wine will definitely lower your blood pressure and make you more tachy and symptomatic. Good thing you cut that out! You mentioned that you don't experience tachycardia at 5am, but you do in the middle of the night. I am very similar that way. In fact, most of my symptoms (low BP, adrenaline rushes, tachycardia, etc) occur after I've been sleeping for a while. If I have to get up to urinate, I now use a wheel chair to roll myself to the bathroom. It helps alleviate the tachy spells I would normally get from standing up. By morning time though, I'm much better. I have to drink a lot of fluids when I first get up in order to feel totally functional though. My cardio at Mayo commented that I have mostly "nocturnal POTS!" I still experience some symptoms during the day, but they are normally triggered by eating too much, stress, lifting something heavy, heat and humidity, etc. My symptoms are always much worse in the middle of the night though. Best of luck to you. I hope you find the answers and good doctors you need. Gena

Although my tilt test was not positive, my cardio at Mayo and another specialist both confirmed I have POTs/dysautonomia due to my symptoms and the BP and HR changes I logged using my monitor at home. So it's possible that your son may have it. I would go with the above suggestions and document HR and BP at home, along with symptoms and triggers. I know you don't wish this upon him, but at the same time you'd probably feel relieved to have a dx of some sort so you knew what you were dealing with! Best wishes, Gena

Corina, I haven't been posting much either. It was nice to see your post, but so very sorry for your loss. Just be sure to prepare your body physically and mentally for your surgery. Studies show asking your doctor to play your favorite relaxing music or some type of guided healing meditation while you're having surgery significantly improves the outcome of the surgery and your body's healing response. I will keep you and your family in my thoughts! Gena

I've had a positive ANA with a speckled rim pattern for years prior to dx with POTS. They have never pinpointed the cause of it. Gena

Lauren, Congrats on getting published. You certainly have a beautiful way with words. They evoke such powerful images. Way to go! Gena

HI Radha, You mentioned that you don't think it's food allergy related, but more often than not it is. Excess mucous after eating is one of the first signs of a food allergy. I'm not saying that's what it is, but you may want to try to pinpoint what it is by eating a single piece of food, such as plain whole wheat toast or a piece of cheese (wheat and dairy are often the culprits) and judge your reaction. Then the next day eat something low on the allergen scale such as rice and compare your reaction with the whole wheat toast. With that said....I somtimes get excess mucous just from drinking a plain glass of water...go figure!! Gena

Bloating, stomach pains, nausea, etc. are pretty common with pots. Many people suffer from gastroparesis (sp?), slow gut motility, and other digestion problems. It could also be from a food allergy or food intolerance. I had severe bloating a few years ago but then was finally dx'd with celiac (gluten intolerance). Once I avoided all forms of gluten (found in wheat, rye, barley and oats) my bloating went away. I still get some digestion problems when I'm feeling potsy though. I think there are quite a few of us who have celiac, wheat intolerance or other food allergies. Hope you feel better soon. Digestive enzymes are often helpful, so you may want to try those. Best wishes, gena

I had a two tests for TB a few years ago before I was dx'd with POTs. I reacted badly to the first test and mild to moderate reaction on the second test. However I do NOT have TB. I had chest x-rays as well. The doctor said it's not an extremely accurate test as many people can have reactions to the test, especially if you have any autoimmune disorders or if your immune system is just overly sensitive. Gena

Oh Em, I am so sorry to hear about this. I pray that you and your doc will find the best course of action to get you back on track and to keep you hydrated. We're all here for you. Take it easy and rest. I'm sending positive thoughts and healing energy your way! Hugs, Gena

About a month or so ago I had a string of PACs that ran for approx. 2 weeks. My doc prescribed a beta blocker propolanol (sp?). I took a low dose of it for a week and it got rid of those nasty and scary irregular heartbeats! I would definitely make an appt. with your PCP or cardio and get it checked out to make sure it's nothing serious. Gena