BuffRockChick

I sneezed a couple times, coincidentally while syncing my fitbit app. I was surprised to see my heart rate at 91 while lying in bed, and with resting heart rate of 55. Google says heart rate should decrease when sneezing. Very curious! I'll be mentioning this to neurologist also! Has anyone here observed what happens during and after sneezing?

I like your conditioning plan! Even though you overdid it, I think you're on the right track. I did something similar. I noticed on my heart rate and symptom data that even though my heart rate jumps up when I stand, I don't get discomfort or presyncope (usually) until 6th minute of standing. I also observed that my heart rate recovered in 10 minutes of lying down. So I got a HIIT interval timer app and set it for 5 and 10 minute alternating intervals. 5 minutes upright, 10 minutes lying down. I got so much housework done in those 5 minutes at a time! After a while I'd notice my heart rate wasn't recovering within 10 minutes and that's how I knew when to stop for the day. You can do the same - collect data to figure out what you can tolerate without discomfort or crashing. The first dizziness I recall was after I had mono / Epstein-Barr virus in 2004. I may have had some blood pooling and cold intolerance before then, but I can't be certain. I know that presyncope started suddenly soon after having mono. My (now ex) husband started complaining of "mood swings" and I got shuffled through as a psychiatric patient -- never had a physical exam. I acquired many, many psychiatric misdiagnosis. In March I had a very early miscarriage, which was emotionally no big deal as I was pregnant for 8 whole days, but my body reacted and hasn't fully recovered. I was trying to figure out my symptoms. I thought diabetes or reactive hypoglycemia - but I bought a blood sugar meter and that was definite no. I thought endocrine problem and had doctor appointment to investigate. I was reading about rare disorders because I find them so strange and fascination, stumbled across POTS, stood up and checked my heartrate! I'd never noticed the tachycardia! In all those years!! I dismissed it as being "out of shape." I have been very reactive, but after 3 years of cognitive behavioral therapy, I'm much better. I moved to a very quiet rural home, we got rid of TV, I can't handle most media - radio ads, pop music lyrics, social media, news, even National Geographic is too upsetting and sensationalized for me. I crash badly when I work outside the home, I can only sustain it for about 12 weeks. I can sorta get through a semester of part-time college - last 4 weeks are devastating. I can't do 2 semesters in a row. It's hard to balance need for community with need for low-low-stress environment. Heck, even the advertising on food packages stresses me out. I pour packaged food into clear glass jars to limit exposure. I have difficulty shopping - between my usual ADHD and blood pooling in my feet, it's exhausting and stressful and I make too many impulse purchases. I do as much shopping as possible online. No medications here. After my tilt table test I plan to start back into horizontal exercise regimen. I use compression calf sleeves on bad mornings. They're not comfortable, but they work. I'm not using a lot of salt until I get guidance from a doctor about my labile blood pressure. I have used service dogs in the past and would be likely to get and train a dog for myself. When I was on ADHD medication I was supright most the time, I may ask to try that medication again and collect some data to see if it's actually helping my POTS. The appetite suppressant and reduced sleep are risky side effects for me, so I'm not sure it's worth it. re: sleep, melatonin, and cortisol: I thought my cortisol levels were messed up because of my longstanding pattern of alertness and energy at bedtime. Probably not. Since fixing my sleep schedule with melatonin I'm not having the same pattern. I actually get tired at night now. I'm up later than usual now and about to nod off typing this! TTYL! Take care of yourself! You're doing great!

Today is rough. I was doing fabulously well, until a change in the weather last week. We had a tornado 3 miles north of us, and two power outages. Stress of that started me all over at mostly-bedridden about 2,000 steps per day. Our weather is cold and rainy so I don't have much else to do. I'll be okay soon and the weather will be warm soon too. Whe you said "Sometimes the "trick" is to keep moving just enough, but not enough to trigger the adrenaline", I agree completely. I had to figure out how much activity would not trigger fatigue and stay under that amount. When I tried to increase my activity at a linear rate, I kept going in a loop of over-exertion, fatigue/bedrest, slow recovery, feel good, over-exertion. When I stayed under an activity level that didn't trigger fatigue, I made movement gains shockingly quickly. I also would get really stuck in a sleep deprivation loop because I'd FINALLY FEEL OKAY at night. (This earned me a bipolar disorder misdiagnosis too.) I used fitbit data to figure out how much sleep I needed. I was so out-of sorts I had no idea! I started using magnesium and low dose melatonin to help get reset on a decent sleep cycle. I understand about being labeled as "emotional". I was misdiagnosed with various mental illnesses. I started treating myself as a science experiment, trying to isolate variables. I had to fix my diet (easier said than done!), get off of caffeine, fix my sleep, and work on reversing deconditioning. I started collecting heartrate data, and did poor man's tilt table at home. I charted everything until I started finding patterns. They were not what I expected! A happy outcome of charting was it became clear that my mood changes coincide with posture change and blood pressure fluctuations. Interesting! That got my doctor's attention and got me the referral to neurology. It's been a long road cleaning up my diet was first - started last year August after I ended up diagnosed with (accused of?) an eating disorder. :sigh: nausea. It's nausea. I expected that clearing up "deconditioned" would be a lot more difficult. I tried horizontal exercise versus upright exercise. I can't tolerate much upright, but horizontal exercise with heartrate monitoring was extremely reassuring. I'm not so afraid of tachycardia anymore and don't let it limit me as much. I still have healthy respect for dizziness and faintness! I do what I can. Some days, like today, walking is unpredictable. Sometimes I can get up and walk, other times I collapse. That's okay, I can crawl. My kids love it, my toddler climbs on my back yelling "Ride! Ride!". My family is adjusting to being on the floor. My previous flare I would help cook, put a cutting board on the floor and cut the veggies on the floor. I can't always stand up, but I can still do stuff!

I was thinking that motorcycling posture would promote shallow breathing. I wonder if your husband's blood pressure is more related to breathing than to posture. I was reading studies today and noted that researchers used a metronome to standardize participant's rates of breathing. I will probably play around with this later. I started looking because I noticed my blood pressures were different on held inhale than on held exhale. I wondered is my slow breathing rate could explain variability in my blood pressure measurements. Curious stuff.

I see your second post. Blood pressure going up while standing does not mean you couldn't have dysautonomia! Have you read about hyperandrenegic POTS? It's marked by blood pressure increase upon standing and high norepinephrine upon standing. If you have that type of POTS, it would explain your adrenaline feeling when you're upright. I have preliminary POTS diagnosis and have twice confirmed by doctor that my blood pressure does not drop when I stand. (Okay, sometimes it does, but it's not usual and comes with a splitting headache). My blood pressure typically goes up when I stand. It goes low when I'm resting 84/48 ish, and high when I'm standing 129/85 ish. I have neurology consultation coming up because my doctor wanted me to have tilt table test done. I'm going to ask for catecholamine testing too during the tilt. I'm also going to ask about baroreflex because when I'm feeling unwell my blood pressure is either high or low.

Start where you are. It seems to me that you have an idea in your head of what you "should" be doing. Let that go for now. Forget "exercise" for now, and think "movement" instead. What movement can you do? You mentioned brushing your dog. That's movement. It's challenging for you right now. Start there. Brush your dog. Fold socks. Add another pillow so you're reclining more elevated. Trace letters in the air with your feet. Drop your feet over the side of the bed for a little while. Have someone elevate the head of the bed with bed risers or bricks. Focus on what you CAN do, start there, build on it. I'm sorry you're having difficulty with medical care. Have you had a tilt table test done?

I stumbled upon this today, made me think of recent breath holding conversations: "When under chronic stress, people tend to take shallow breaths and unconsciously hold them, what Anderson calls inhibitory breathing. Holding a breath diverts more blood to the brain to increase alertness — good if the boss is yelling — but it knocks off kilter the blood's chemical balance. More acidic blood in turn makes the kidneys less efficient at pumping out sodium. In animals, Anderson's experiments have shown that inhibitory breathing delays salt excretion enough to raise blood pressure. Now he's testing if better breathing helps people reverse that effect. "They may be changing their blood gases and the way their kidneys are regulating salt," he says." source: NBC News

After resting supine, and hyperventilating (30 breaths per minute) for 2 minutes, my heart rate increased 12 bpm. Normal for women is 20 bpm. I also have low resting respiration rate of 8 breaths per minute. Interesting. Don't know what to make of it. I will mention to my doctor.

Internet says hyperventilation increases heart rate. When I have tachycardia, if I hyperventilate (intentionally or not), my heart rate drops. Can anyone explain why? In graph below, the drop in heart rate at approximate 25 minutes in was due to hyperventilating. I forced myself to breather normally and heart rate went back up. From previous experiments I know that if I continue to hyperventilate my heart rate stays lower.

Orthostatic hypertension is defined by 20 mmHg increase in systolic blood pressure upon standing. Do you have any other baroreflex problems? Did you have the blood pressure increase before starting your medication? I'd suggest seeing your doctor about it. POTS is not a risky disease (unless you faint, fall and injure yourself falling). But labile blood pressure does carry some serious risk, like increased risk of stroke. My PCP noticed my blood pressure was fluctuating and going up when standing. I got a home blood pressure monitor and have noticed labile blood pressure too, but mine doesn't go so high. I've noticed when I'm feeling unwell, fatigued, and POTSy, I have greater changes in blood pressure. Mine is often low. Please update as you learn more!

Hi! Welcome! I'm glad your tachycardia was noticed! Mine was similar with symptoms for a long time and didn't notice the tachycardia. I thought I was "just out of shape" and have a lot of shame with that. I thought I was "lazy" and "sedentary", but my fitness tracker says I'm "very active" when my POTS symptoms are less severe. My symptoms get worse with stress (little stressors too!), pain, illness, etc. Finding this forum has helped me a lot! I've been learning what I can do to manage symptoms and been experimenting to see what works for me. I'm experiencing fewer flareups that are shorter in duration, and I'm learning how to keep some of my functioning through them. Can't control the tachycardia, but can control how I react to it.

@Finnmin, I don't recall all of your husband's symptoms, but I thought of you when I was reading about baroreflex failure yesterday. Maybe worth exploration?

POTS isn't the only dysautonomia, so you could have a different diagnosis in the category. The link below lists dysautonomia disorders other than POTS. http://www.dysautonomiainternational.org/page.php?ID=35 Your test may not have been done correctly, may have not been interpretted correctly, or may have been done on an unfortunately asymptomatic day.

Me too with alarm clocks! Or waking up to noisy/naughty children in the morning! I have trouble working too. Any obligation really. I can manage for up to 3 months and then I just can't function anymore. My last job was just one day a week, but even that had me in bed 3 - 4 days of the week. My husband has said that the paycheck is not worth me working outside the home. I am planning to take on one client next month. I'll have one 2-hour obligation every other month or so. I hope I can handle it. I love to work!! I'm annoyed that something beyond my control (weather) has affected me so much. I finally get to homeostasis and am doing okay and something I couldn't predict or control messes it up. :grumble:

My sister lives in high desert climate, where hydration is a big deal! She makes homemade electrolyte drinks. She uses a recipe she found online. I know it has potassium, magnesium and calcium in it too.

I was doing great for a while, was up to 12,000+ steps per day, feeling good, no fatigue, no nausea. I was still noticing tachycardia on standing, but I wasn't having presyncope symptoms and it wasn't limiting me. Then we had severe weather, a tornado close to home, and power outages for a couple days. It could have been dramatically worse, we are just a mile or so from the straight-line wind damage and 3 miles from the tornado path. Even though we were lucky, the stress was enough to aggravate POTS. I'm in bed for now. Nausea, tachy, blood pressure doing funky things. :sigh: I didn't expect this one. I thought stress + sleep deprivation aggravates my POTS. Looks like stress alone, and really *not that much* stress sets it off. What are your patterns between stress and symptoms?

Perhaps you can check an anxiety questionnaire to try to become aware of if you're experiencing more cognitive symptoms or physical symptoms. Childbirth can definitely provoke anxiety.... and POTS. When are you experiencing this? What patterns do you notice? You can try self-care to prevent anxiety and see if it makes a difference in your symptoms. You can try self-care to prevent POTS and see if it helps too. I hope you feel better!

Another thing that helps me is a mindset that symptoms are uncomfortable, but not dangerous. Before diagnosis I'd have symptoms and be "done" for the rest of the day. Now, if I'm not having presyncope, I just keep going. If I have presyncope I lie down, but only until my heart rate returns to normal and then off I go again. This mindset and activity pattern have been huge to keep fatigue and nausea at bay.

Whole milk is an excellent electrolyte drink. I can't manage Gatorade most days. It's not just sickeningly sweet, it has a bit of bitter taste too. Yuck. Sleep is a big deal for me, as is waking up calmly and quietly without an alarm (or loud children, in my case). I take magnesium and melatonin at night. Staying active however possible is important for me. Maybe I can't walk, but I can crawl to get around the house. I can do exercise on the floor. Horizontal exercise was very beneficial for me - I use a recumbent elliptical machine and seated stepper.

Hi Stacey! My symptoms get better with adequate sleep, low stress, exercise (but not so much that I'm tired the next day), and always better around ovulation. I still have orthostatic tachycardia during relatively asymptomatic periods but I'm not having fatigue, nausea, or presyncope. Missing as little as one hour of sleep for two days, or mild stress like an obligation or holiday can cause symptoms. I'm beginning to notice that when I'm less symptomatic, my blood pressure tends to go low, but when I'm symptomatic it tends to go high. I don't understand this. My symptoms have been better and worse countless times in the last decade. Getting better seems to be tied to getting enough sleep, reducing stress, and increasing activity. Sometimes it's more obvious that others. My last episode was obvious - I was losing sleep every night, I had a new obligation of bottle feeding baby animals, and I was having a miscarriage. Sleep, stress, hormones. I passed off the bottlefeeding to my son as soon as the babies were a little stronger, I didn't limit sleep at all - no alarms, napping freely, and hormones just took some time to sort out. During that time, I was taking about 2,000 steps per day (that's pretty much bedrest for me). 2 months later, I can go 12,000 steps per day but I'm still in bed 3 - 4 hours per day and I can't take on any obligations or stress yet. I'm enjoying it, but trying to take care of myself and avoid the inevitable return of symptoms.

Hehehehe! I think of my breathing as calm, meditative deep breathing. 8 breaths per minute. I am curious what my breathing is like when I'm not super chill-relaxing.

#1 is normal. Pulse is higher on inhale and lower on exhale. A yawn is a long inhale so it's more noticeable then. #3 these pauses in breathing, is there a pattern of when the pause comes? If someone doesn't say anything, how long does it last? Does he ever not start breathing again spontaneously? Does he have any cyanosis with these episodes? I have a much longer pause after an exhale than my husband (who is normal, healthy). At rest, a 5 second pause in between each breath is normal for my not-normal.

Hi! Welcome! I'm not bedridden, but after 6 months bedrest (during pregnancy, twice 8 years apart) it was incredibly difficult to start moving again. My latest bedrest was 2 years ago now, and it was partial bedrest where I was taking up to 2,000 steps per day. It has taken 2 years to really recover. I am finally beginning to be able to walk 10,000 steps per day without a huge crash and taking days to recover. I am just beginning to be able to lift things I have been unable to lift since that pregnancy. I'm still in bed at least a third of the day. I have no doubt that strength and stamina can be restored, but I know it's not a fast, easy, or comfortable process.

If you were thin because of malnutrition, then yes... eating disorders can present as tachycardia and dizziness. And nausea from dysautonomia can be interpreted as an eating disorder. #askmehowIknow I'd be wary of a doctor who dismisses your symptoms so easily.

Hi! Welcome! I'm sorry you're not feeling well. I'm in the USA and havenn't hear of anything by that name. Is it exercise conditioning program? I found it online, a very slow schedule starting with horizontal exercise and building up from there.