deucykub

Great ideas! The three little tricks that I can think of are: - Cooking: Instead of standing in the kitchen to cook, sit in a chair with rollers and scoot around. This keeps the symptoms at bay for a longer period of time. - Movies: Sit in the row right behind the row for people with disabilities/who use wheelchairs. There is always a rail that separates that row from the row behind it, which is great for propping up your feet and it doesn't impede on the person's space in front of you. - Dining: Sit in a booth rather than a table with chairs and fold your legs up while you eat. This again helps keep those symptoms at bay. I can't wait to hear everyone's great tips. I still have so few!

Hi, Melissa: In light of all the bad news, I'm happy to hear that some relatively good news has come your way. Sometimes just a little ray of sunshine can make the world feel not quite so grim, so it must be quite a relief to know that the hospital does not seem to be necessary this time around and that the pain is manageable through the new meds. Lung pain really is the pits! You will continue to be in my thoughts and prayers, and I hope that enough relief comes your way to be able to spend Thanksgiving with your family. My husband and I are alone this Thanksgiving and last Thanksgiving as well. I can't leave town because I never know if or when work will let me come back, and my family are all in Florida. They pulled the small accommodations I had that allowed me to work at least some of the time, which has not made this or the last the best of holiday seasons. I was starting to spiral into a real sense of sadness this week. BUT I've decided heck with it all. POTS or no, somehow, I'm going to get a turkey in the oven, microwave all sorts of pre-prepared stuff and have a little Thanksgiving, even if it is just the two of us. I mention this to say - because I know my situation pales in comparison to yours - nevertheless, us Dysautonomia diagnosees can and WILL still have a wonderful Thanksgiving, sickness be DARNED. I wish you the happiest of Thanksgivings, Melissa. I will pray that the day is a good one for you and that the pain abates.

Oh, no... how frustrating. I'm so sorry, Morgan. For all their education, there are some simple things some doctors just never learned. Thirty more seconds of his time might have helped put you at ease that he was at least taking you seriously (if he was, that is). Everything the medical profession doesn't understand is lumped into the "all in the patient's head" diagnosis, and that in itself is sickening. I hope that you soon find a compassionate, listening doctor to help you either manage or at least understand what is happening in your body. That one person can make all the difference in the world. Here comes another hug headed your way across the miles! Did you get it?

Thanks for the link! The laidback laptop could be really good for working from home. My stomach is always getting super-warm from balancing my computer on top of it. I approached the idea of a supine workstation with my employer today, and it is the first time they have actually started dialoguing with me on accommodations, after 16 months, asking which model I thought would be suitable for my needs! The best holiday present ever for me would be to get back to work.

If changing your breathing (like a half yawn) is helpful, this book might help, too! The Breathing Book: Vitality & Good Health Through Essential Breath Work It was recommended to me by my speech/breathing therapist at the University of Connecticut, who is one of the best in the nation. One of the breathing exercises she gave me stopped me from coughing chronically (I had coughing jags that would last months!).

Well, first of all, don't blame yourself. We have so much to remember to keep ourselves going, but we're still only human. Most doctors probably couldn't even figure out how to modify their livestyles as much as we have to every day to keep ourselves at our baseline! I am so sorry that you had to have such a bad day in front of your coworkers. In some ways, we're lucky that our illness is invisible (of course, this has its downside, too!). It can be so embarrassing to have our illness known or shown. If I were you, I'd go right back into the workplace on your next working day, and make jokes about what happened. If your coworkers see that its no big deal to you, then they'll take your cues and respond in the same way. They are probably wondering how to interpret and integrate what happened. Also - wow!!! - that is so amazing that your coworkers were so ready to respond and kept you so safe! They should be made to feel like the heroes they are. If you haven't already done so, you might consider a special thank you note or small gift to recognize them for their incredible instincts!

Hi, Cardiactec: Welcome back! It must feel good to be back home; I imagine being hospitalized in the ICU was pretty terrifying. Trust your instincts. Your heartrates are insanely high, and you express often that you believe there is something more going on with your health, remembering your previous posts. I thought when I was first diagnosed with POTS that there was more the doctors had not figured out, yet. Now, almost exactly a year later, I've moved into more of an acceptance of POTS, after reading all the literature and studies and doing a lot of comparisons and thinking. You're probably more informed about POTS than I am, so if there is still a little voice in the back of your head saying something doesn't quite fit, then you should probably listen to it. We have an innate way of knowing when we have found the correct and complete answer. At least, that's my opinion.

Hi, Radha: I haven't tried Spiriva, but I have used a lot of different inhaled meds for asthma. The only time the inhaled meds help my shortness of breath is when my peak flow meter is actually showing that I am experiencing an asthma attack. I've tried using them when the shortness of breath was POTS. Not a good plan for me - my POTS symptoms got worse, probably because they tend to make me shaky, and if I recall correctly, asthma meds trigger the release of neurotransmitters, affecting the Autonomic Nervous System. I think the shortness of breath in POTS is different from asthma and COPD, caused by a lack of blood flow to the heart and lungs. The asthma/COPD meds help to open up the inner airways of the lungs, so I wouldn't think that Spiriva would help with POTS-related SOB. I could be very wrong, though! Does your shortness of breath get better when you lie down? The only thing that relieves my POTS SOB is to sit down if I'm standing or lie down if I'm sitting, and if I am already lying down, then it takes sleep to help me feel better.

Hi, Stacey: I'm late to this post, too, and I don't have much of value to add to the amazing posts you've already received. My thoughts and prayers are with you. I'm in a bit of pit myself the last few days. I usually bounce right back, but as options seem to disappear, my hope seems to dwindle. Just know you are not alone, and we will - all of us - get through this and find joy and contentment again where we are. Sending you an encouraging hug...

My primary care doctor prescribes Pamine Forte for my intestinal issues. They can be pretty embarrassing. It's an off-label use, and I'm not sure why she thought it would work, but that stuff is fantastic for me! My former doctors just told me to eat more fiber, which made me want to give them a good smack, since I had just explained that foods high in fiber made it worse!

Hmm... my favorites are ice cream and chinese food, which are the only things I can eat when I get really nauseated. Although, I have no idea why! I also eat a lot of pre-prepared soups and microwave rice packets mixed with steamed veggies - yay for salt! Cookies, cake, muffins, and chips all send my intestinal system into a tail-spin, but sometimes my body is just gonna have to put up with these things 'cause they're a necessary evil!

Good info, mkoven, thank you! I would have paid for these things in a heart-beat (a POTS heart-beat no less!) if I had known they were available back when I first got sick. Now, I don't even have the credit left to buy these myself.

I've been working to get reasonable accommodations at work for the past 16 months and haven't had a paycheck since July. Over the past 16 months, I've lost nearly a year's salary due to missed work. I can only sit normally for about an hour before becoming severely symptomatic, and this has been a significant limiting factor on my ability to work. It's been a pretty bad year for me, all in all, because of financial pressures, marital stress, and now a lawsuit against my employer... the federal government... not to mention simply living with POTS. But I'm not writing to complain; I'm writing because I may have just found hope!!! Supine workstations! Maybe some of you who can't work for similar reasons might find some hope in this, too, so I thought I'd share. There are companies out there that build workstations and chairs for people that have to work lying down. Of course, it's a pricey solution (from about $1,500 to $10,000) and a hit on the ego because coworkers can see the disability (particulary compared to working from home as an accommodation), but if a workplace needs you to be in the office, it could be a real possibility! These things are amazing - they have supine solutions from the very simple to the very complex: This website led me to these workstations and also includes really helpful lists of workplace accommodations: Job Accommodation Network - Searchable Online Accommodation Resource/SOAR (list of companies for supine workstations: http://www.jan.wvu.edu/cgi-win/OrgQuery.exe?Wor55) And here's the website with the supine workstations shown above: ErgoQuest, Inc. This is just so cool!!! P.S. The Americans with Disabilities Act (for private sector employees) and The Rehabilitation Act (for federal employees) in the U.S. (enforced by the EEOC) require all employers to provide Reasonable Accommodations (that don't cause undue hardship on the employer) for qualified individuals with disabilities.

Welcome to the forums, Adrienne!

I use the Omron HEM-650 - bought from Amazon.com. It's a wrist BP monitor with automatic inflation/deflation and a heart positioning system. From what I had read prior to purchasing, the wrist monitors can be less reliable than the arm cuffs because they need to be at a special position for an accurate reading. However, the heart positioning system on this one ensures that the monitor is in the right place before it will start to inflate. It's tricky to get it in the right place the first time or two that you use it, but after that it's a snap. Reviewers on Amazon compared it to the bp measurements at their doctor's offices, and it read beautifully. I really like the wrist type over the arm cuff type for convenience and portability. This one has always been right on the money for me, but it does seem to have a hard time reading my bp/pulse when I go into neurally mediated hypotension (the huge bp/hr drop before actual syncope). It gives the E error once I reach that stage. The lowest it has actually registered for me is 67/41.

I've been thinking about getting one of these, too! If my workplace ever lets me come back, I would never be able to scrape ice off my car. But if the defroster was on for a few minutes before getting in... that might do the trick! Does anyone know approximately how much these run for parts and installation? Thanks!

Please keep us updated on what your doctor says.

I wouldn't get too worried about all the blood work. My Rheumy (and a lot of other docs) did the same with me! I started going to the lab so often that the technicians started to recognize me and say "welcome back!" ha, ha. If I understand correctly, the cortisol level check can diagnose Cushing's disease if the level is high or Addison's disease if the level is low. Addison's disease looks a lot like POTS. I have one good vein that's a "giver." After that one is used though, the rest cause me problems. When I went for some research in Boston, they had already drawn blood from my good vein. Then, they had to put an IV in the same area but couldn't use the one they had already "stuck." One nurse tried. She called in another nurse who was the best at putting in IVs, and it took her about an hour and a half to finally find something that worked. Not fun. She cracked up when I thanked her for her hard work, saying, "I've never been thanked for trying to put in an IV before!" I hope your arm feels better soon!

Hi, Lizzy: I'm definitely not a doctor but did a little research online to try and ease your concerns. From what is online, it looks like the kind of test your doctor performed is called a Romberg's test. When you fell over with your eyes closed but could maintain balance with your eyes open, that is considered a positive result for something called "sensory ataxia." Sensory Ataxia is just a neurological sign (not a diagnosis) that shows the doctor that a patient has a degree of loss in his/her sensitivity to joint and body part position. It says online that maintaining balance uses two body processes: vision and proprioception. Dictionary.com defines proprioception as "the ability to sense the position and location and orientation and movement of the body and its parts." Romberg's test takes away one of those processes when a patient is told to close his/her eyes, which makes a patient reliant only on proprioception. If proprioception is in some way damaged or affected, the patient will lose his/her balance or fall down. There can be a lot of causes, so determining why that sense has been affected requires additional testing. It can be caused by something as simple as a vitamin B12 deficiency, or it can show that there might be some nerve damage. It sounds like your doctor is taking the right approach by running more tests. Again, I'm definitely not a medical professional, and I'm sure others on the board have more knowledge than me and will clarify or correct me. If I can make one suggestion, having symptoms and signs that we don't understand fully can be pretty scary, so for now, live in the here and now and don't worry about this too much. Your doctor will let you know what is going on, and once you have all the facts, then you can respond in kind to whatever is really happening in your body.

Are they only inviting you there for research, or are they also willing to take you on as a patient? I would think that if they are interested in your well-being as well as their own research aims, they would schedule a clinical appointment for you if you so desired before you participate in research. My suggestion is to give them a call and tell them you would like a clinical appointment first, and after that, decide if Vanderbilt is the right place for you. Your first goal, in my very biased opinion, should be to get a solid diagnosis and a reliable treating physician who is willing to work with you. I participated in research with my treating physician at Beth Israel Deaconess Medical Center in Boston. The research itself was fascinating, and I was treated like gold. It was an enjoyable and educational experience for me. However, and this a BIG however, going off the meds was a very bad decision for me. I crashed while I was going off of them and then had a very weird crash about two weeks after I went back on them that lasted for a month. I couldn't work during any of that time. I asked all my doctors about whether they thought I would have a difficult time regaining what little I had gained in my health if I went off the meds. Each of them thought I would be fine. During my month-long crash though, my cardiologist said, "Well, we definitely misjudged your reaction to stopping the medications." I guess my point here is you just can't know how you'll respond to that. My POTS specialist doctors didn't even call that one right (and I'm sure they did their very best; they would never endanger my health). If you're really worried about work right now, and boy do I understand that, weighing the possibility of being worse after the research might be worth some consideration. Oh, and it is never selfish to ensure you are taking care of yourself and your family. If you can't do research now, there is somebody out there who can, and these opportunities will roll around again.

So far, I've not had a negative response to antibiotics with POTS. But do please talk to your doc... staying on a medication when you are having severe side effects can be dangerous for your health! (And firewoman, you're not alone! - wink, wink - nudge, nudge - Even if I do crash and burn for hours after, it's worth it, darnit! )

I see one for Fibromyalgia, and he certainly helps with that! Were you referred to a Rheumatologist by someone? I don't know that Rheum. would be able to help with Dysautonomia; however, a lot of symptoms of Dys. overlap with Rheum. illnesses like Fibromyalgia (even though it's debatable whether this disease ended up in the right specialty), Lupus, or other autoimmune diseases. (EDIT: My guess is your doctor is exercising caution by ensuring that a Rheum. illness is not causing some or all of your symptoms.) Typically a Rheum. will do bloodwork to look for certain antibodies that are present with certain diseases (like anti-nuclear-antibodies/ANA in Lupus). Even then, it is not a clear cut diagnosis - Rheum. use a lot of personal judgment and physical signs to help determine a diagnosis. For example, there is no "test" per se for Fibromyalgia; diagnosis is based on symptoms and the doctor pressing certain parts of the body to see if there is a painful response. Another example is I had a significantly positive ANA, but I don't seem to have any autoimmune diseases. Treatment really varies depending on the diagnosis. I take Cymbalta and Flexeril daily and Darvocet as needed for Fibromyalgia. My aunt (by marriage) has Lupus and takes another cocktail entirely for her illness. Rheum. seem to be the doctors who take on the cases that don't seem to fit into any other specialty. They got stuck with Fibromyalgia back in the early nineties, even though, now, it seems to be more of a neurological illness. One of my doctors said he just doesn't understand the "Voo Doo" that they do, but he said it with respect and admiration! I'm sure the above is waaay oversimplified, but that's my meager understanding of the specialty.

I see Dr. Freeman at BIDMC, and he is brilliant. My only words of advice are be persistent to make sure that you get all of your questions answered. He is very kind but also very rushed, so I've had to pull him back a few times from walking out the door! It took me an appointment or two to become more assertive in our visits. His credentials made me feel a bit cowed, but I got over that. He's never been impatient with my questions - he just tends to think the appointment is over before it is, I think. On the other hand, he is fantastic about returning calls, and his office is really great about fitting people in even if they have to add extra clinical days. Their most recent fellow just finished her fellowship over the summer, so the office has been a bit short-handed.

Hi, Brenda: I don't have children, but I can imagine how frustrated and powerless you must feel to watch your daughter go through this. I'm so sorry that she is suffering from POTS. When your daughter has trouble walking, is she having visual changes at the time, such as blacking out? Does her hearing get sort of "muffled?" That can be caused by a sudden drop in blood pressure on standing, and there are some positional manuevers that can help. How was she diagnosed with POTS? Did they do a tilt table test? It seems odd that the doctors would declare her "healthy" but have her on so many medications. Were the doctors changing their mind on the POTS diagnosis? Did she have high heart rates that were normalized by the beta blocker? The most misunderstood part of POTS, even within some of the medical community, seems to be the perception that once the blood pressure and heart rates are "normal" that the symptoms should go away. POTS is much more than a variable, tachycardic heart rate and blood pressure problems. The medicines we all take to help with those two symptoms are much like a splint for a sprained ankle. They don't cure the problem (POTS); they just help to alleviate some of the symptoms (high heart rate and blood pressure changes). POTS is an illness that requires a pretty long period of recovery. It wasn't until after having this for a year that a doctor finally confessed that to me. He said, "So by now, you've realized POTS is a long-term illness." Maybe the doctors don't say this at the outset to avoid creating the expectation and subconscious fulfillment of a long recovery, but personally, I think this information helps to prevent fear when we don't just magically get better overnight. New York Medical College seems to focus on Pediatric POTS, and many of the forum members who have children with POTS have taken their children to Mayo Clinic. This article has an excellent layperson's explanation of POTS and is one of the few to verify that POTS patients also experience symptoms while sitting. Like your daughter, I spend much of my time reclined and become symptomatic even in that position. The only way to truly minimize my symptoms is lying without any elevation, usually curled on my side. I can recline for about 3 hours or sit for about 1 hour before becoming symptomatic, and symptoms are immediate on standing. So I did a lot of research to see if that is a part of POTS. My understanding at this point from the research and my doctors is, yes, POTS can cause symptoms even in those positions. KUDOS to you and your husband for supporting your daughter so unconditionally and for following your instincts when it comes to her medical care!

Same here - both, and like firewoman, I don't faint. I think they call that Neurally Mediated/Neuro Cardiogenic Hypotension, which is a combined drastic drop in blood pressure and heart rate that leads to presyncope. If there is a full faint, the term seems to switch out "hypotension" with "syncope." Of course, if a person with either condition stayed standing, s/he would faint, which leads to a greater usage of the term "...syncope" vs. "...hypotension." A lot of research says that patients with POTS do not have orthostatic hypotension, which is an immediate drop (within 3 minutes of standing?) of blood pressure (= or > 20 systolic or 10 diastolic). Maybe that is what your doctor was thinking of? Some of the early research also claimed that the bp of a POTS patient goes up on upright tilt, which does not seem to really be the case. Mine stays steady or drops initially depending on the day and then eventually - CRASH. I think there are a lot of doctors out there that know just enough about the ANS to be dangerous. They seem to be the ones that get us all confused just when we think we've gotten it pretty much figured out!