Gena

I just wanted to say I can empathize with Linda Joy. I had very similar symptoms after eating and kept losing weight until finally being dx'd with celiac disease (this was about 5 years ago). Even after going gluten free for a few months, my body was still overreacting to many foods I was eating. I had food allergy testing (the kind they do with blood tests, not skin prick) and discovered I was having an immune reaction to 26 different foods in addition to gluten. Even though I was pathetically thin, I had to eliminate virtually all but the most basic, unprocessed, non-allergenic foods from my diet. I did this for 3-4 months and my body began to recover fairly quickly. I can now eat many of the foods I was once allergic to (except gluten of course, as I still have celiac). Many of my problems were caused by leaky gut syndrome (increased permeability in the gut caused by large spaces that develop between the cells of the gut wall allowing bacteria, toxins and food to leak into the bloodstream.) This leads to other food allergies, inflammation and problems throughout the body. I am not suggesting this is what she has, but just sharing my experience. As Nina and others mentioned it certainly sounds like an allergic reaction and overactive immune response. I hope Linda finds relief and an excellent doctor soon. Sending lots of hugs, gena

I go through good phases and bad, but for the most part holding steady and functioning well. The main symptoms I deal with are hypotension, especially at night after laying down, Tachycardia, arrhythmias, trouble sleeping, anxiety, adrenaline surges (very mild now) and easily startled. Stress, sugary foods and large meals exacerbate my symptoms. Meds: tiny dose of Inderal (beta blocker) as needed (maybe a few times a month) and tiny dose of Klonopin a few times a week for sleeping. Gena

Sounds like your ER experience was a doozy. I have had tachycardia for hours on end, especially during the first few months I discovered I had POTS. I was really bad then. I puzzled the doctor even at Mayo b/c he said POTS patients should only have tachy initially upon standing and then should subside after sitting down (I guess he doesn't know everything!!). Well I've had episodes of tachy that last for hours no matter what position I'm in. Plus I'm susceptible to arrhythmias when my heart gets going fast, so that's even scarier. I do find that a small amount of Inderal during an epsiode really helps. I don't take it on a daily basis though. Just during a flare up. I find our POTSY bodies do some very strange things that really don't fit any textbook definition of anything!! Hugs, Gena

If they do really turn out to be a help for a number of POTS patients, wouldn't it be nice if medical insurance would pay for them! HA - fat chance I'm sure. However, i'm intrigued so I'm going to start saving my pennies and give them a try! Thanks for the exercise tips too! Glad to hear you're feeling so much better. Gena

Jessica, I hope you find some results and treatment soon. Please keep us posted. The only thing I have to add to what others have already said is regarding the headaches. I get the back of the head pain too and sometimes lasts for days or a weeks. What helps me most is an ice pack on the back of the neck for about 10 minutes and leave it off for a while then do apply again. Pain relievers like Advil and Tylenol just don't even touch my pain, but I do find the ice helps. Gena

I was anemic for years and my hematologist kept me on iron pills and did not do any tests to find out WHY I was anemic. Eventually, a couple of years later, when I started presenting other strange symptoms, another doc discovered I had celiac (gluten intolerance). Anemia is a common underlying symptom of celiac. The small intestine is damaged by the gluten and it cannot absorb nutrients (like iron). I was slowly being mal-nourished and didn't know it. Once I went gluten free and my small intestine healed I was no longer anemic!! Please talk to your doctor about this. There is usually a reason for anemia, and you should encourage your doctor to look at possible causes including celiac...it's a simple blood test! Gena

I am so sorry for the horrible episodes you're experiencing. I can definitely relate to the horrible squeezing feeling in the head/brain. I get that sometimes for days at a time and it truly feels like my head is going to implode...almost like a vacuum inside my brain. On those days, I'm afraid to go to sleep sometimes b/c I wonder if I will wake up. The pain is excruciating and nothing helps me, except ice on the back of my neck sometimes helps. It sounds like you might want to get an MRI, just to rule out anything else. Wouldn't your insurance pay for your MRI if your doctor ordered it?? Insurance companies can be such a pain in the @#!!$. Sending hugs and pain free thoughts your way! Gena

HI HOlly, You have been through a lot, but I know what a good feeling it is to finally find some answers. You will find so much information, support and friendship here. Have you started to try any of the basic non-medicinal treatments for POTS...such as plenty of water, salt, mild exercise, stockings, etc? I hope you find some relief soon. IN the mean time feel free to ask any questions you have. Welcome! Gena

Happy Birthday Tearose... I meant to post this first thing this morning before I dashed out to work and forgot. I hope you had a wonderful day filled with happiness, fun and laughter. It's been so nice to have you back on the board. I always look forward to your posts. Hope all of your wishes come true. Remember to celebrate all WEEK long...not just one day! Hugs, Gena

I actually get much more on my left side too. In fact my MVP book mentions that lying on your left side can increase palpitations and increase symptoms. I imagine because you're compressing your heart / putting your body weight on it and it makes it harder to function properly?? but I'm really not sure why. I am the least symptomatic when lying on my back with my head and neck slightly elevated. It's not always the most comfortable position to sleep in though!

Hey, while we're dreaming here, if Clooney is going to make a movie about dysautonomia then I want to be the star!! Seriously, though, regional conferences would be awesome, but huge effort and expense of course. I think they would be well worth it thoug. I would like to see more detailed literature. I like the brochure Michele help put together, however I'd like to see one that focuses on dysautonomia in general, rather than POTS specifically. It seems doctors refer to this condition as many different terms, Orthostatic Intolerance, Mitral Valve Prolapse Syndrome, NMH, Dysautonomia, Autonomic Insufficiency, Autonomic Nerve Disfunction, etc. I know we all have overlapping symptoms and yet we have our own subsets of symptoms too. POTS has a very specific, clinical definition, but I think there are other symptoms of dysautonomia that could be discussed further in a brochure without making it overly complicated. A national PR campaign to send out PSAs about dysautnomia would be awesome too.

Happy birthday to a fellow Taurus. Hope it was a good one. Hugs, gena

Best wishes to you. May you be in good hands. I'll keep you in my thoughts for a smooth operation and a speedy recovery. Hugs, Gena

Nina - I know this is such a tough time for you and your family. As you know, we're here for you and you can lean on us any time. Sending lots of hugs your way. Gena

Aw, shucks. You guys are so sweet! After spending a wonderful day and evening with my hubby, I come home to see this happy b-day post from everyone. That was truly the icing on the cake, so to speak, and a nice way to end the day. Hubby took me to Bonefish Grill, since that have a special GF menu, and I even lived on the wild side and had a half a glass of wine and some creme brulee for dessert....yummy! I drank tons of salted water today in anticipation of having some celebratory wine and sugar, but nonetheless I am waiting for the tachycardia to subside before I head off to bed. By the way I told my husband I'm celebrating my birthday the entire week, not just one day, so he better be extra nice to me!!! Thanks again everyone for the sweet sentiments and well wishes. Hope you all have a good week. Hugs, Gena

When I was at Mayo in Jacksonville they only did a 24-hour urine test for catecholamines. Is that an accurate test? Mine came out normal. But I don't see how basedon my symtpoms!

I get the slowed digestion and bloating in the stomach too. Taking digestive enzymes often helps me with this problem. I also have to belch a lot (I know, lovely, huh?) in order to relieve the pressure. That helps too! For slowness in the bowels, I take the Cleanse Smart supplement that Lucky Charm mentioned. It works great for me too. Hope you find relief soon. Gena

JenniferinOhio - I do most everything you do to try and stay one step "ahead" of this illness, if that's possible! I really focus on good nutrition (mostly organic, no processed foods, limited sugars, no caffiene, lots of veggies, etc). I also believe it's so important to exercise, if even it's only a little bit. When I'm feeling good, I exercise about 3-4 times a week for 30-50 minutes. It's the one thing I find that really helps regulate my autonomic system and my HR. I don't ever push myself though, and take plenty of breaks and stay hydrated. There are some days that I might be too symptomatic, and on those days I do floor stretches and movements. Luckily, I am able to work and I have an employer that doesn't mind if I arrive to work late in the mornings - as long as I get my job done, that's fine with them. However, the job stress can really cause my symptoms to flare up. One thing I almost forgot - I try to meditate or do breathing exercises a few times a week as well. Meds that I take only as needed are small doses of Klonopin and Inderal.

When I'm in Pots Hole my BP can get down into the 70s/40s (and miraculously I do not faint). However, it normally ranges from 85/52 - 95/65. If I'm at a doctor's office though I get stressed and have anxiety, so it often reads higher in those situations. The only med I've tried to raise it was Midodrine and I never noticed any difference even when I upped my dosage. Gena

My main cleaning trick is to ask hubby to pitch in! My next cleaning trick is to have a cleaning lady (actually it's two guys) come to my house twice a month. They keep on top of the deep cleaning for me. I know it's a luxury, but I've managed to cut expenses in other areas so we can afford this! I can't tolerate any synthetic cleaning chemicals like clorox or swiffers or lysol, so I make my own natural cleaners or purchase natural ones online. They do just as good a job and don't leave any toxic residue. I have a natural cleaning guide book that has all kinds of wonderful tips in it. But I don't have it right next to my computer now, so I'll post some later. For vacuuming and mopping (which my hubby is not very good at) I certainly don't try to do the whole house in one day. I may just do one room. The last time I tried to vacuum and mop the whole house was last summer, and I had to call an ambulance b/c my heart went into a crazy arrhythmia! I agree with Dizzy Dame, if I'm leaving one room, I survey it and take whatever doesn't belong there into the other room that I'm going to and put it away in it's proper place.

Thanks to everyone for chiming in. I'm just afraid if I continue to push myself in my job that I will crash harder than ever and truly not be able to work again. Ideally, I'd like to work part-time. I love my job and what I do and I don't want to give it up completely, but until I win the lottery, I guess I'll have to keep on truckin! So based on the responses so far, it looks like most people had to quit because POTs just completely disabled them and prevented them from working. I sometimes feel like a whimp b/c my body cannot tolerate stress very well since getting POTS two years ago. Em - good to see you posting more frequently again. I tried to PM you, but I think your mailbox is full as it wouldn't go through. Would love to hear about more experiences on this topic from others. Thanks! Gena

Let me try to explain my question further... For those who had to give up work altogether or move into a part-time job, was it because you physically could not sit or stand all day or focus or other physical/mental reasons? Or was it due to the stress of the job itself causing your symptoms to flare up to a point where you decided it was not worth it to push yourself and cause flare ups? The reason I ask is b/c I work full-time and can function fairly normally most of the time (although I struggle with dysautonomia on a daily basis. However, I don't get too dizzy or faint - which would definitely prevent me from working! My POTS flares up when my job stress gets unbearable. During those flare ups there may be weeks or months at a time that I don't sleep, have arrhythmias, my BP is rock bottom, have adrenaline rushes, etc. - but I still am able to perform in my job, albeit at a much lower level than I'd like! For those who had to give up your job, did you find that it eased your symptoms / flare ups at all after you quit? Thanks for your feedback. Gena

This story is great. It made me thing about my own "spoons" and what things in my life cost spoons for me. It would be interesting to get feedback from others about what tasks or events require spoons in your life? Here are a few of mine...I realized the list was getting too long so I stopped! Things that cost spoons ? Trying to sleep at night ? Getting up in the night to use the bathroom ? Waking up in the morning / getting out of bed ? Taking a shower, washing hair ? Eating high carb meals, sugary snacks and caffeinated beverages ? Loud noises, arguments, scary or intense movies, stress or excitement of any kind (good or bad) ? Not drinking water /not staying well hydrated throughout the day ? Skipping meals ? Going to work ? Sitting at computer or in one position for any length of time ? Dealing with job pressures and stress ? Speaking in front of large groups ? Lifting heavy objects ? Walking from the parking lot to the store on a hot day ? Standing or walking for long periods of time ? Any activity in the heat ? Cleaning the house ? Watching a movie at a theater ? Exposure to chemicals or synthetic fragrances ? Going to doctors appointments ? Medical tests Hugs, gena

I find a small dose of Klonopin usually helps me. Or I drink a powdered yummy flavored magnesium drink that mixes into a warm tea. I like to drink this after dinner to help relax. I still have periods where I can't sleep and my heart is racing or I feel like I'm passing out even when I'm lying down!! I empathize with you. I think most of us on the board can be divided into those who have a a lot of insomnia and those with chronic fatigue that sleep a lot! Hope you get some ZZZZs soon! Hugs Gena

HI there. I went to Mayo Clinic in Jacksonville. There's a cardiologist there who is also an EP named Fred Kusumoto. I think he is absolutely wonderful. He's very knowledgable about POTS and autonomic disorders. He's treated several POTS patients before. I have even called his secretary on two occassions when I was having severe problems and Dr. Kusumoto called me back the same day to discuss my concerns on the phone. I found him to be much more helpful and knowledgeable about dysautonomia than Dr. Cheshire, whom I also saw at Mayo. But that's my personal opinion. Others may have had good experiences with him. Bottom line is I would highly recommend Dr. Kusumoto. Gena