BuffRockChick

Drinking a bolus of 16 ounces cold water raises blood pressure from a pressor response. I'm pretty sure it's normal! I think you can avoid it by drinking smaller amounts and/or warmer temperatures. I'm curious what your blood pressure does if you drink 16 ounces of a warm drink? Are you willing to try it to satisfy my curiosity? Please update us when you hear back from your doctor!

Chronic constipation with unpleasant consequences here - hemorrhoids, prolapse, and rectocele. Ouch! I am okay with high fiber diet - 25 grams fiber per day. Fiber from food works better than fiber from supplements for me. But when my POTS flares up I can't manage to eat fibrous foods. Then, I use dextrin (Benefiber) in liquids and use psyllium capsules if I can't get enough dextrin. I think the psyllium works better than dextrin. The first month that I started easing into high fiber, I took dulcosate every day too. I take magnesium too, not sure if it helps. I switched all my baked goods to 100% whole wheat. It's not as good, but when it's fresh and warm I don't mind as much. I use a recipe with orange juice to ease the bitterness of whole wheat. I started dipping chips in hummus (bean paste), or just have it on bread. That was yummy. Unfortunately, the last flare-up I developed food aversion to hummus. I hate that effect of nausea! So I've been using just the supplements lately and it's not as comfortable.

Hi Kara! Trying lying down flat on your back for 15 minutes, then stand absolultely still for 10 minutes. Muscle movement assists in pumping blood back, so it messes up the test. Be careful that you're not swaying, curling your toes, tensing your butt, moving your kneecaps or other subtle fidgets. Check your pulse at 2, 5, and 10 minutes. POTS doesn't have much a blood pressure change usually. There's a subtype that blood pressure will go up with standing. Your doctor may have mis-spoke or been unfamiliar with POTS? I discovered mine by myself after 13 years of symptoms. I was online looking for reasons for my fatigue, and was delightedly shocked to stumble across POTS. Been confirmed by 2 doctors now, but still waiting for cardio workup and tilt table test. I also have muscular chest pain, shoulder pain, and forearm pain in some positions. It's from being in bed a lot in a bad sleep position. Physical therapy didn't help much, but I found instructions for trigger point release of the pectoralis minor muscle and that works for me! Fast relief too!

That's amazing @cmreber! Congratulations! You are so inspiring!! I want to run a 5K - no obstacles for me! I can run 20 paces at a time now. I'll keep looking at your picture and remind myself that it's not easy, but it's possible!

Do you legs tingle only when standing? Blood pooling can feel like itching or tingling. Might be how you're feeling the sensation without having neurological disease. I'm sorry you feel blown off, but no neurological condition is GOOD NEWS! POTS is unsettling, uncomfortable, and limits activity, but at least it's not life-threatening or life-shortening like the cardio and neuro conditions that your doctors have ruled out! Are you willing to try exercise? It helps! There are online resources and exercise programs for POTS, but the general idea is to start within your abilities, choose horizontal or seated exercise, and don't overdo it because that can increase symptoms the following days.

I bet you can cook (without standing)! Cooking is difficult for me, but when I'm determined, I can get it done. I've sat on the floor with a cutting board and chopped veggies on the floor. I've started prepping food in the evening when I'm feeling better. There are casseroles that can sit overnight in the fridge, meat can be marinaded, crockpots can be packed in advance. Just about anything can be made in a crockpot! I make marinara sauce in a crockpot now so I don't have to be standing up to stir it occasionally. If you're doing especially poorly, plug the crockpot someplace where you can set it on the floor. You can do plenty without standing, no reason to feel guilty! Sometimes it's lying down in front of the TV for movies and popcorn, but you can do things with them. Board games on the floor? You'll think of something! (((Hug)))

I have some strange habits I've acquired over the years, like never ever taking a shower, only taking a bath in the afternoon and lying down for about an hour after a bath. Seemed backwards an quirky for the last decade until POTS diagnosis - now it makes sense. I have strange eating habits and I wonder if there might be a good reason why. I felt mildly nauseated this morning but ate ramen anyway. I laid down immediately after eating and about 15 minutes later felt extremely fatigued, I checked my blood pressure, it was low. I kept checking it and noticed it creeping up and I was feeling less fatigue as it came up. I'm curious if maybe my weird eating habits are to avoid symptoms. What are your symptoms areound eating and how do you cope with them?

@Finnmin, I checked standing bp with arm supported and arm down. Arm supported 96/52 pulse 88. Arm down 133/102 pulse 87.

Hi Jean! I hear you about misdiagnoses and a long time to sort it out! I didn't notice the tachycardia until this year, I've been misdiagnosed and struggling for 13 years! I was reading online about every possible cause for fatigue and every differential diagnosis for all of those and rare diseases to perk me up when I felt sorry for myself. I came across POTS, stood up and checked my heartrate and WOW! I have preliminary POTS diagnosis from PCP, confirmed by neurologist, underlying neurological disease ruled out and now waiting for an appointment with cardiology for a tilt table test. After the mess of misdiagnosis, I made big headway by collecting data at home, organizing it and presenting to my PCP. I bought a used fitbit with heart rate monitor so I could print graphs of my heartrate. I started messing around and seeing what reactions I get. What happens if I.....??? Your blood pressures sound great to me (layperson). But if they're dropping significantly when you stand, then you might end up with orthostatic hypotension diagnosis rather than POTS. Depends on what pattern of heart rate and blood pressure shows up on a tilt table test. I think you're on the right track for ruling out diet, caffiene, etc. I did that too and it REALLY paid off at my neurology appointment. He was starting to suggest deconditioning, but I have step count data from fitbit and it's definitely not sedentary (except on particularly symptomatic days). I had to address sleep in a pretty major way. And nutrition - I used USDA SuperTracker to make sure I was hitting my macros and micros. I took iron since my diet is deficient, bloodwork to rule out anemia. I looked up all the differential diagnosis for POTS and did whatever I could to rule out the easy ones - anorexia, dehydration, poor sleep, stress, anxiety, etc. They were actually tough to rule out because my misdiagnoses include eating disorder, panic disorder and anxiety NOS. But whatever. It gave me something productive to do while waiting for appointments. You may not need a POTS specialist if you can find a doctor who is flexible. My neurologist hadn't treated POTS but he could confirm diagnosis and rule out neuropathy. My sister in law is a board certified pathologist, graduated from Mayo, and we chatted about POTS over the recent holiday. She remembers it from medical school. It IS being taught. Younger doctors (at least those from Mayo medical school) are aware of the physiology and treatment for POTS. My neurologist called POTS "a disease without a home." I'm sorry that you're having a hard time finding a care provider. (((Hugs))). I found a blog a while back about prepping for doctor appointments for dysautonomia. We're not supposed to post links here, but that should be enough info to find it on google. It helped me A LOT! I gave my PCP a letter that covered everything so he wouldn't have to rely on memory to write my chart. Cost me extra for "office output", but a small price to pay for narrowing down to an accurate diagnosis.

Updating again! I saw neurologist today. He confirmed POTS diagnosis, ruled out underlying neurological disease, and referred me to cardiology to "establish diagnosis". Turned out that clinic the tilt table test is done in cardiology department but my PCP thought it was in neurology. I had some impressive tachycardia after three minutes of standing this morning! I'm glad it was caught and recorded in my chart. I'm so tired from the appointment!

@vtpixie, I had dizziness and presyncope while sitting and walking when I was on a medication which makes POTS worse. I had no idea what what's wrong at the time. I had a misdiagnosis and was years away from learning about POTS. (((Hugs)))

I just read your go fund me. In my experience, training a dog is extremely beneficial for those with depression and anxiety. I saw some pretty amazing things when I was training service dogs with/for other people. I think the process of training is almost more beneficial than the service dog's tasks. For example, with depression it can be really difficult to get up in the morning. However, if you're training a young dog, you know that if you ignore your dog's new morning behavior that all of your training will be ruined. That's a strong reason to wake up promptly and the dog's response to receiving the reward is always happy for the person too. Another example, young dogs need LOTS of work in public. We did an hour of training in public 5 days per week, plus 1 full day 4 - 8 hours depending on the dog's age. That exposure paired with the handler's intense focus on the dog made some tremendous progress in anxiety. One handler was pretty much home bound, and boy was her therapist SHOCKED when she was suddenly just fine for 4 hours of training in shopping mall type environments. Another got over anxiety with public transportation quickly while training the dog maneuvers to ride city bus unobtrusively. Training your own dog may be an option if you're patient and willing to search out training resources. The benefit is higher and the cost is much lower. There's no magic in service dog training. Dogs can manipulate things by pawing, nose nudging, retrieving, carrying, and depositing. Almost every task (think tricks) is a combination of these behaviors. Training the tasks is the easy part. Picking a dog who can handle working in public is the hard part.

I have used service dogs. I trained my own because I could and because many of the organizations are worse than reputable. Taking dogs from shelters is a major red flag, btw. Shelter dogs that pass aptitude testing only have a 1% success rate in becoming service dogs, while dogs from breeding programs intending to produce service which also have passed the same aptitude test have an 80% success rate. I did not believe the statistic and tried training dogs for other people. Only a couple succeeded - and they were not shelter dogs. Anyhow, I was very methodical about defining my symptoms and the work or task the dog could do to mitigate symptoms. My best dog was one that would alert me to tachycardia and perform deep pressure therapy. He would help me balance through presyncope with "counterbalance" (probably not a great idea), but at the time I was misdiagnosed with something else and had no idea about POTS. He would pick up dropped items and return them to me. He woke me up, brought short-acting medications in a pouch and a water bottle. He would open and close household doors. I may have a service dog in the future, I've been thinking about it a lot. Now that I know about POTS, I would teach a dog to respond when I collapse by crawling under my ankles and standing up to elevate my legs. That would be helpful When out shopping. I'd train deep pressure therapy and response to tachycardia, bracing for when I feel faint so I don't actually collapse. I'd trained retrieving dropped items again too. Tips? Do your homework and be sure you can prove legal disability. Just file the documents away carefully in case you ever have a legal situation over a public access challenge our housing issue. It's the disabled handler's responsibility to prove disability in the case of a legal dispute. Do your homework in documenting the dog's training, continuing training, and the tasks. In a typical public access setting, you can be asked what your dog does for you. In a legal setting you may need to prove that your dog performs the task - and that the task mitigates a specific symptom in a way that is not normal for an untrained dog. As in, "my dog brings me a ball and it makes me happy and feel better" is not something special that requires training so it doesn't count. Are you comfortable setting boundaries with strangers? With being harassed by random people? With being questioned about if you are disabled by random people? With being interrupted 20+ times just trying to get a gallon of milk at the store? Are you okay with the presence of a service dog causing you to have to stop and stand (aggravating symptoms) just to deal with the general public. Are you okay if people follow you through stores, insist they cannot control themselves because your dog is "cute". I had people yell at me because I wouldn't let them pet my service dog. I've had MANY MANY people ask "who are you training him for?" And then tell me I don't look like I need a service dog. People can be just rotten! The hassle of handling a service dog in public was more stressful than the amount of benefit I got from having the dog with me. I gave my service dog to a friend who is severely disabled with similar symptoms. I'm sorry this isn't a sunshine-and-rainbows post. Service dogs are a mixed bag. I have mixed feelings about them. I've seem amazing things happen with service dogs and I've seen some really ugly things too - fraudulent trainers, abusive handlers, discrimination, harassment, etc. I'm thinking I might train a service dog for myself but not take it out in public. Except the post office, because if you're disabled with a service dog you get to cut in line and don't have to wait at the post office. I would say the only time that a service dog really really helped in public setting was flying because I got to preboard. Standing in airplane aisles is horrible because of POTS! But now I know better and can contact the airplane and get preboarding set up in advance - dog not necessary.

Yup, the cuff has to be at the level of the heart and the arm supported to get valid bp reading. Now I'm curious what might happen if I dangle my arm standing up....

I had an idea for you @JSurf125. When you're feeling unwell with tachycardia,I'd suggest putting ice or very cold water on your face. Like burying your face in a big ice pack or bowl of ice water. It's a vagal nerve stimulation that is used to stop episodes of SVT (Supra ventricular tachycardia) and also used to help children end an emotional meltdown. If your tachycardia stops after putting your face in cold, then you have both a diagnostic clue for your doctors and a useful self-care tool.

I crash and burn after about 3 months of working. I'm legally disabled, that determination was made when my symptoms were exacerbated by medications for a misdiagnosis. I don't receive social security disability benefits anymore because my family is financially secure without and I don't sleep well knowing other people are in much greater need for SS benefits than I am so I requested termination of benefits. I am a stay at home mom to 2 kids, one of which is homeschooled with exceptional needs. He keeps me busy and feeling like I have purpose without a typical job. I have an idea for generating some income within my limitations and have started working towards it. SS benefits were invaluable because I had access to cognitive behavioral therapy for 3 years. This has helped me be less reactive to stress. I'm still reactive, of course, but infinitely better. I still have the physical POTS symptoms, but I don't have any of the conditioned anxiety or panic that used to affect me. Relaxation techniques were a HUGE part of therapy. Based on my personal experience with being extremely reactive to stress and having POTS, I'd suggest adding exercise to your self-care and consider minimalism. Exercise helps with POTS, with reducing stress, burning off adrenaline, relieving anxieties, and regulates sleep by reducing need for sleep - which may all help you cope with your work schedule. Many can get around the exercise intolerance of POTS by starting with horizontal exercise. I can do a full workout on a recumbent elliptical machine, feel awesome, and heart rate stays about 120. On a regular upright elliptical machine, my heartrate hit 180 within a couple minutes of warmup and I was having presyncope. Horizontal exercise was a huge eye-opener, and yes, it improved my functioning. There are exercise protocol available online for POTS patients, starting with horizontal exercise and working towards upright exercise over 6 months. You might find it helpful? Gyms can be stressful places - I struggled with exposure to TV at the gym. Yoga or home exercise may be more beneficial. Minimalism is an idea that can be pursued with varying intensity. My interest in minimalism was in simplifying housework since I couldn't keep up with it due to POTS. Others find they can live very well on much less money - and that pursuit may relieve your stress surrounding working. Pursuing financial independence might also appeal to your need for security. I like Mr. Money Mustache blog for inspiration. Minimalism for me looks like removing unnecessary actions and decisions. Getting dressed in the morning could seriously stress me out - so I pared down my clothes to the point where I can grab anything without thinking about it. Standing with my arms up to style my hair can be impossible - so I switched to a haircut that doesn't require styling. Mealtimes and shopping were stressing me out, so I pared down menu options to 5 or so meals and do most of my shopping online. My house doesn't look remotely minimalist, but it's simple enough I can clean it up "company ready" in a half hour. My goal is to minimize enough to be able meet my responsibility to my family within the energy/resources I have on a bad POTS day.

I think the hiccuping is a particularly interesting symptom. It sure hints at something awry with the vagal nerve. It seems that stress severely exacerbates your symptoms. Since the onset of your symptoms, have you had a time of sleeping well and low stress? Please don't take that as a suggestion that all of your symptoms are only caused by stress, but rather, seeing if you can compare how much change you experience in physical symptoms when you are well-rested (consistently over months) and relaxed (also consistently over months). Stress and poor sleep aggravate my POTS dramatically and it takes a good bit of self-care, sleep, daytime rest, and conscious relaxation to recover. Sometimes weeks. And by "rest" I mean physical AND mental rest. No social media, no TV, no radio, no music with words or strong emotion, no news, no phone ringing, no alarms, no appointments, and minimizing every possible decision and responsibility. When I'm recovering from a POTS flare, I don't cook, shop, socialize, no activities for my kids, I avoid cleaning or only do cleaning that I can do sitting or lying down. In the past, I was in a constant state of flared symptoms. Now with very-very-low stress lifestyle, I recover from small flareups in a week or so and big ones in a couple months. Low stress and good sleep don't remove my POTS symptoms, but it makes them barely noticeable in between flareups. Whatever your diagnosis ends up being, you are the only person who can ensure that you do the self-care necessary to feel well. Give super-low-stress a try and see what happens. You may be able to narrow down your symptom list and have greater clarity in your diagnosis and treatment plan. Please stay around and update us as you continue to explore what helps you feel better.

I cannot definitively say, but when I posted a question about it, the responders were those with hyperPOTS.

Not sure if I have hyperPOTS, I suspect I do because blood pressure goes up and I have irritability when standing. Overlapping noise is a big issue for me, sudden loud noises too. Mornings are worse for me, I can be fully functional in the evening.

Yes, if you can manage the bp cuff without moving too much, go for it. A drop in blood pressure is orthostatic hypotension and the body compensates with increasing heartrate. My PCP checked blood pressure first to rule out orthostatic hypotension before I got a referral to investigate further. In my opinion, in this phase of data collection and discovery, it is beneficial to also track fluid intake, sleep, nutrition, stress, and anxiety. Why? Because these are very basic things that you can rule out at home as causing symptoms. Malnutrition (like eating disorder level) and dehydration cause these symptoms, and anxiety has very similar symptoms. Many people get dismissed as "eat more" or "see a therapist for anxiety" rather than getting a referral to confirm diagnosis. I had 13 year history of misdiagnosis with psychiatric conditions, so I was very wary of being dismissed. I collected data for week and by the time I had my appointment with my PCP I had identified that my mood changes which were previously misdiagnosed as bipolar disorder correlated to my body position, with occasional mood shifts with blood pressure changes. That info, along with graphs of heart rate data and his quick confirmation of tachycardia withou hypotension upon standing got me a preliminary POTS diagnosis and referral to neurology straight away.

That looks suspicious for POTS. I'd suggest more testing at home. Lie down flat on your back for at least 15 minutes. Stand up quickly and don't fidget or tense your muscles, try to not move at all. Test in the morning also, since symptoms tend to be worse in the morning and in research on POTS the tests are done in the morning. Only about 30% of people with POTS will faint, so don't worry about that. I've only fainted once. It was after standing for 10 minutes, my pulse was 120, I gestured with arms overhead and walked away, fainted after a couple of steps. I wonder if putting my arms over my head was why I fainted? Stay curious and please update as you gather more data and begin exploring the possibility of POTS.

No food triggers here.

I have gathered that irritability and anxiety are common in hyperPOTS because of high norepinephrine while standing.

What time of day was the cardiology appointment that you had a normal poor man's tilt?

Hi @themissovoxo! Welcome! I'm pretty new here too. I've had a lot of anxiety in the past, and I'm pretty sure some of it was a conditioned response to my POTS, but cognitive behavioral therapy helped me a lot with anxiety. Now I don't have the cognitive symptoms of anxiety, but POTS leaves me with the physical symptoms. I'm thankful I had the therapy, otherwise I don't think anxiety and POTS would have ever gotten detangled and POTS would have never been noticed! Anxiety is really common and can be cormid with just about anything, POTS included. And undiagnosed, uncontrolled tachycardia is downright scary - anxiety has to be a normal response! I'd suggest breaking "anxiety" symptoms up into cognitive versus physical symptoms and then look at which you're having more of. This may bring you clarity. Have you tried checking your lying down versus standing heart rate at home? I did it every day for 2 weeks. The data I collected really helped me recognize patterns and cope with symptoms.