BuffRockChick

I wonder if you experience postprandial hypotension? I get it sometimes, I can't figure out a pattern to it. I get hypotension when I take a bath, so eating + hot water + upright position makes sense for provoking misery. Good luck with your TTT!

My family takes vacations. I travel pretty well - I don't have symptoms aggravated by riding in a car or flying. I'm limited on how much I can drive, and sometimes I don't feel safe driving. I struggle when I have to operate on someone else's schedule! I avoid large facilities, outdoor venues without fast escape routes from sun, heat, cold, or walking. If hubby isn't driving, I allow A LOT of extra time, just in case I need to rest. I avoid meeting friends/family at a destination. I avoid going places in groups of people where I can't control the pace - like a walking tour. I don't book anything that's not refundable. If you can explain the vacationy situations that you have difficulty, I'm sure you'll get many responses with ideas for coping.

My irritability and emotional outbursts correlate with blood pooling and high blood pressure. I experience the irritability FIRST with upright posture, so it doesn't correlate will with my falls, faints, or GI symptoms. I suspect I have hyperPOTS and have asked for catecholamine testing during my tilt test next month to find out if I'm having high norepinephrine when I am upright. I wore compression legging for full day today and only got irritable once! I was shopping, had already been on my feet too long, was standing still to find products/make decision, and my ADHDer child's medication had worn off and he was interrupting me in a way which put my youngest in danger so I couldn't ignore it, so I was standing longer because I couldn't make a decisions due to interruptions, but the longer I stand the more brain fog I experience so then I REALLY can't make a decision and get extremely pissy. (If I don't recognize the pattern and put my feet up or start walking, I'll have presyncope or physical symptoms similar to a panic attack). I told my son I was symptomatic, he quit long enough I could decide what to buy, and I started walking agin which got blood moving again. Lying done with my feet up, especially in a dark, quiet room, for 20 minutes helps. If my blood pressure is staying high, laying on my left side helps bring it down. Taking a hot bath and then lying down for an hour or two seems to "reset" my body when it's stuck with high blood pressure, blood pooling, or the acrocyanosis I get in cold temps.

Uff dah! I'm so sorry you're dealing with this! I've been there! I don't know how limited you are by your symptoms. My response is from my personal experience which is shaped from the severity of my symptoms. I apologize in advance if you are more limited than I am and much of what I write doesn't apply well to your situation. I have had POTS come and go over the last 13 years. I can get breaks for up to 3 months where I have no limitation of light activity, and then I get a flare-up which can last days, weeks, or months in which I'm in bed non-functional 6 - 8 hours per day. Most days are inbetween where I'm limited by symptoms, spent about 3 hours in bed per day, but can fake being normal for long enough stretches that most people would never guess I'm struggling. My husband struggles with this demanding behavior too, although he's getting a bit better now that I have a medical diagnosis rather than my previous psychiatric misdiagnoses. He was accusing me of faking until he saw me faint after standing for 10 minutes. My husband used the phrase "productive member of this household" too! So annoying! As if anyone wants to be a burden on loved ones!! I think you need to get some details from your fiancé about what being "productive" means to him. What chores are most important to him. What he expects. If you cannot do his minimum expectations when you are sick, and he's unwilling to change his expectations, then your relationship is pretty much doomed, IMO. This relationship dynamic almost ended my marriage (engagement actually) twice. My husband gets crabby about this stuff when he is stressed out at work, or when I've been sick with a flare-up for 2+ weeks. It's just really a lot for him to work 50+ hours a week plus on-call every-other night, do all the farm work, all the cooking, cleaning, and childcare from when he gets home from work until he gets back. Knowing he is feeling burdened does not make his behavior acceptable, but it helps me understand his point of view and the temporary nature of the problem. Now I we've worked through it and I have a better idea of what helps relieve the burden. Clean kitchen counters are a big one for him. Even if I can't cook meals, I can usually mix up a dessert to bake at night - sitting on the floor. Sometimes I'll offer to cut veggies (again, sitting on the floor) if he will do the stovetop cooking. I can order groceries and household supplies online. Spending less money overall relieves my husband's work stresses too. I have decluttered my house fairly extremely so that I can get it clean in an hour. 90% of the time I am functional by 4 p.m. And can clean up the house quick before he gets home from work. I changed my schedule so I stay up late when I function better and clean at night. He wakes up to a clean kitchen - and clean once a day seems to be enough to satisfy him. Since getting better understanding of POTS, I have been pushing myself. My symptoms suck, are limiting... and they're temporary. I do what I can and spend a lot of time lying on the kitchen floor. This makes a difference because he can SEE that I'm making effort, that whole invisible disability thing where if I look well (lying in bed wasting time on my device) he will be annoyed, but lying on the kitchen floor resting between tasks (like getting something out of the fridge) makes me look unwell and then he's sympathetic and encouraging. **I** feel better emotionally even though it's completely ridiculous. Staying in bed doesn't do my self-worth any favors. Your relationship problem has two sides. Maybe he's stressed to the max and not himself lately. Maybe he's a real jerk whose behavior is escalating in terrifying ways. Only you can make that judgement call. His nagging, hounding behavior is unacceptable, bordering on coercive control. On the other hand, he's probably feeling burdened and desperate. You have very real limitations, very real need for autonomy, and emotional needs too. You two need to pull together and find a solution - or determine that there is no solution and part ways. I listed a few solution ideas of mine below, maybe they might help you look for the things you can control in the situation. Maybe there's some nontraditional work you can do to earn income to pay a housekeeper? Maybe you can make freezer meals when you're feeling well and use them when you're sick? Maybe he needs to find a bad-day meal You can keep on hand that he's willing to eat? (Frozen pizza, cereal, and lunhmeat sandwiches are our fallbacks) Maybe you need to rate your health/functioning on a scale and communicate it to him so he knows what to expect? (If I'm having a particularly bad day, I send my hubby a text message a couple hours before he comes home so he can adjust his expectations. If he's having a terrible day at work, he emails me and then I know to use my limited energy on farm chores rather than housework) Maybe you need to contact your doctor if symptoms are getting worse or changing? Maybe you need to remind him that motivation is not your problem and set boundaries about his nagging behavior? I don't envy your situation. I've been in it twice. First time ended in divorce. Second time became a happily ever after. I learned I can only control myself (how I cope with symptoms). The future of the relationship is decided by if the other person can accept me... and my symptoms. Best of luck you you! (((Hugs)))

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I just finally bought waist high compression..... LEGGINGS. I got them from RejuvaHealth. They are not awful and constricting around the waist like I feared. I can wear them as pants at home and with a tunic or dress in public. They're gray, so they fit right into my regular capsule wardrobe of gray leggings. I went on a vacation in the south recently. I struggled with the *change in temperature* between outdoors and a/c more than the heat itself. The worst was in the car stepping out into super-hot parking lot.

LOL! Laughed so hard when I read that. Caffeine is my "vice". I function so much better with the vasoconstriction from it! Smoking though, the other effects are really scary to me. I hope your doctor can help you find a safer treatment to give you some relief of symptoms. I think it's important to know that smoking does help you feel better, hopefully there's something that helps you but doesn't shorten your life span. Nicotine gum is safer, right?

I don't have EDS, it's pre-fall/pre-syncope symptoms for me. It's sporadically, follows the pattern of ray dizzines/collapse/fall/faint symptoms rather than tachycardia. Her pattern of getting worse as the day goes on sounds different from what I experience.

I forgot to say that my weak knees/collapses/falls/faints are related to drinking water. More water = more falls.

That sounds familiar. I get weak in the knees and sorta melt. When it's worse I collapse. Worse yet I fall outright. And I've fainted 2x. However, I've noticed it doesn't necessarily correspond with tachycardia. I wonder what is going on. Maybe some NCS? I will find out in a couple weeks with tilt test.

My attempts seem to only work below 90 degrees. We had a 95 degree day. I spent it in bed with my legs up, compression garment on, a/c on. The temperature dipped to 55 that night and I felt fantastic that night. Trying to acclimate to the heat is exhausting. I want to believe it's possible, but by now I just want to curl up and sleep through the heat of the day.

I used to have that chicken/egg situation, before I was aware of POTS. I had cognitive behavioral therapy, and use those skills when I don't feel right. This way I don't have anxiety-provoking thought processes making things worse. If I'm not having the cognitive part of anxiety, and the relaxation isn't working, then I know that I'm experiencing dysautonomia symptoms. I have symptoms flare from stress. I agree with WinterSown about a bath with Epsom salts. It's a boost of magnesium and the warm or cool water is like a reset button for vasoconstriction or vasodilation, respectively. Also agree with salt and fluids and a simple carb. I also benefit from laying in a dark room. If I'm very irritable, then I take Benadryl too. I usually do salt/fluid/protein, then hot bath, then lay in dark room for 1 - 2 hours (or cool pool and lay in sun for 10 - 30 minutes), then carby snack. If I'm not sleepy I zone out with an electronic game. After my body regulates itself, I find myself fairly delicate and likely to relapse after small stressors or activity. I need to do something sitting and quiet for a couple hours to fully recover. I tend to choose playing musical instrument (sitting), drawing or painting (sitting), or when I'm having lots of brain fog or needing to entertain my children at the same time then watching a movie.

I enjoyed coursera.com's class "Learning How to Learn." They incorporate learning strategies right into the class so it's surprisingly easy to retain. I hope it is still a free resource. It was amazing.

I hear you about learning something new everyday. I have been really bad. I was on psych meds (for bipolar disorder misdiagnosis) and my POTS was really, really bad then. My memory was fried. It got so bad I couldn't dial a phone at work because I'd forget the a single digit between looking at it on the paper and pressing it on the phone. One day I was driving, I knew where I was but I didn't know where I came from or where I was going, or even my name. I complained to my psychiatrist and he helped me off meds. That was 5 years ago. It took a long time to heal after that. I have to stay learning something or I don't feel well. We have a farm so there's always new skills to learn and opportunities for new projects. I have had the puzzle of my oldest son's homeschooling, but he's going to public school this coming school year. I try new recipes when I can - brain fog has been keeping me out of the kitchen. I took some classes at a community college last year. I'd love to earn a certificate. I just can't do more than one semester at a time - both for health and budget. This summer I'm taking piano lessons. ? I believe neuroplasticity is real. I used to be unable to know what day, month, or even year it was. I started using "pattern planning" way back when I was on psych meds. It's been some years, but I have a sense of rhythm of days and weeks and when I need to do various tasks. I used flylady.net to establish some of those weekly patterns.

I stumbled across "vascular dementia" today. It's alarming. I wonder if, and suspect that, chronic mild cerebral hypoperfusion of POTS in those who have it for decades may cause vascular dementia. Does anyone know if long term research or retroactive surveys have been done? I would like to know whether or not POTS is positively correlated with vascular dementia.

My sister does not have POTS. She has similar symptoms without tachycardia. We suspect she has neurocardiogenic hypotension/syncope. Interestingly, she also has ADHD diagnosis. She's hesitating to seek diagnosis for her blood pooling, dizziness, headache, fatigue, brain fog, symptoms because she has never fallen or fainted, so she is considering getting switched to a stimulant medication for ADHD to give her relief from her OI symptoms.

Hi @Sick Nick! My resting heart rate is 52 - 55, varies with menstrual cycle. It's a bit lower when I sleep. The lowest I've noticed with heart rate monitor is 42 overnight, but it's usually getting to 44 at night. I had a holter too but my cardiologist didn't comment on it. Just said that my holter results were "consistent with POTS". I notice my POTS symptoms are milder when my resting heart rate is lower. I don't worry about it.

I experienced similar when my POTS is worse, although I also have ADHD diagnosis. My ADHD testing was pretty moderate, while my questionnaires were pretty extreme. I've noticed my worst ADHD symptoms are related to upright position. Interesting, for sure! MY PCP encouraged me to "consider" that I have ADHD + POTS. When I was on methylphenidate for ADHD, my POTS symptoms disappeared. Now, this was before I knew about POTS and I was not aware of tachycardia yet. BUT when I was on methylphenidate was the only time I've ever been able to be on my feet all day without severe consequences. Methylphenidate has been researched in POTS patients, 77% effective among refractive POTS patients. If you're not getting relief, it may be worth asking your doctor about. You may also want to explore taking a medical leave of absence while you get treatment sorted out. You haven't exhausted treatment options, there is hope. (((Hugs)))

It is normal to have lower blood pressure when laying on one's left side. Have you noticed if you've been laying on your left side at those times? Mine drops when I lay on my left, but not that much. It doesn't drop when I lay on my right. My blood pressure plummets when I roll over in bed a couple times in a row, this might be a fluke of wrist cuff measurement though.

I have POTS symptoms constantly when upright with the exception of getting some relief at night. However, I get intense flare up of symptoms - during which, I've acquired inappropriate psychiatric misdiagnoses. My quest for diagnosis is to set my medical record straight so when I get a flare up I don't get comments like "maybe it's your bipolar coming back." I am assuming TTT will find me to have high norepinephrine levels in upright position because my most constant and most troubling symptom is irritability. I am planning to pursue methylphenidate for treatment because when I was on it for ADHD (long before I figured out POTS), I spent most of the day standing. Caffeine reduces my symptoms, but not as much as methylphenidate did. I'm also going to start an exercise program immediately after getting the tilt test done. I get "brain fog" when I'm standing and with blood pooling. It can get so bad that I'm not able to speak. It exacerbates my ADHD symptoms too.

Only 30% of people with POTS faint. I've only fainted twice, once after standing for 10 minutes, pulse was 120. The other was after standing up and walking. Both times I fainted I didn't have presyncope and I had been drinking water instead of electrolyte drink. I've only fainted AFTER learning about POTS, interestingly. I have my tilt test next month. Need the doctor diagnosis to get medication treatment.

@Finnmin, I was on a long car trip with my husband and we got to talking about POTS. He was able to explain why he thinks salt causes nausea. When there's a lot of salt in the stomach, the body pulls fluid in to dilute it. This causes a temporary *drop* in blood volume and nausea. interesting! I thought of you while he explained! It's normal for exercise to increase blood pressure short term, while the long term effect of exercise is to reduce blood pressure I believe. Chopping wood is an activity with little leg movement - little muscle pump activity pushing blood back up to the brain. Bicycling is seated plus lots of leg muscle movement. With the blood getting up to the brain, the body doesn't have to raise blood pressure to compensate. I think If his blood pressure is below the point of hypertensive crisis and his resting blood pressure is fine, it's likely normal. You can ask his doctor about it too. I learned that baroreceptors reset after 24 hours after a higher or lower blood pressure. Also thought of you when I read that.

I used to do deep breathing but it never worked. Most recently, I noticed shortness of breath and elevated heart rate while driving. I was not cognitively anxious, so I was able to quickly deduce I was experiencing blood pooling. I chugged a soda ( caffeine for vasoconstriction) and turned the air conditioning on max with just floor vents on to chill my legs. It worked! My heart rate dropped and the edgy, unsettled feelings went away too.

I've been on vacation in southern U.S. where temps were 90 to 95 degrees during the day. Hotels and restaurants were overly air conditioned. I was cold indoors and wore a sweater. I noticed sudden heat intolerance. I would feel fine in the car. Then open the door to get and immediately feel dizzy and nauseated - even before standing. We'd go into a restaurant and I'd be too sick to eat and have testing pulse 70 to 80. Usually 50 to 60. By the time my family was done eating my body would have had time to regulate and my nausea would be resolved enough I could eat. Frustrating! Now that we're home, I'm still struggling with heat. We have the air conditioning on and I'm turning it up one degree every few hours to begin to adjust to normal indoor summer temperatures. I am surprised how badly and how quickly air conditioning affects me. My body doesn't seem to be tolerant of changes in temperature such as created by indoor a.c. in summer.

EKG results were sinus tachycardia, sinus bradycardia, sinus arrhythmia, ventricular premature complexes. Echocardiogram was normal. Holter results were "consistent with POTS" Tilt table test scheduled for August.