BuffRockChick

Awesome news! I rarely can tolerate sports drinks, so milk is my electrolyte drink of choice. It has more electrolytes than any of the sports drinks out there - and fat free milk is unlikely to bother his stomach. @Finnmin, if salt/water loading works, then maybe raising the head of the bed would work too? It is supposed to reduce sodium loss overnight, if I'm understanding correctly.

I don't think POTS versus anxiety (or both) is a moot point, JMO. Physical ability to exercise does not negate POTS. There are athletes and "weekend warriors" with POTS. Exercise is proven therapy to reduce POTS symptoms. Being deconditioned is not diagnostic criteria for POTS. It seems like there are still self-care things you can do to improve wellbeing without doctor support. You can control your breathing. Not easily, not constantly, but you can set alarms to remind you to slow down, relax and breath deeply. What else is within your control that you can do to improve your quality of life?

Forgot to remind you to BE CAREFUL! I had never fainted, had POTS for over a decade without a clue. But once when I did a stand test I fainted afterward. My pulse was only 120. Thankfully I was in a carpeted room, didn't hit my head on the wall (was close), and my husband was there. Freaked him out! I didn't expect it at all! I'd been much more dizzy, tachy before without fainting, no idea why it happened that time. Hasn't happened since, but I am a lot more careful and don't try to fight through dizziness at all anymore!

I'm also curious when you overbreathe / hyperventilate. Do you have tachycardia immediately before you begin to overbreathe? Is it while standing? What happens to your heart rate if you don't overbreathe while standing? I have hyperventilated while standing and noted a significant drop in my heart rate then.

I can't comment on medication, but I'd be curious what would happen if you had a tilt table test done with catecholine blood draws supine and upright. I was diagnosed with anxiety and mood disorders over 13 years. After stumbling upon POTS on my own, I checked my supine versus standing pulse. While doing this repeatedly, I noticed that my "mood swings" are perfectly correlated with my body position. When I stand too long, I'm experiencing tachycardia.... and cognitive effects which I'm conditioned to describe or experience as mood effects. I feel depressed, apathetic, exhausted, hopeless, irritable, even rage when standing too long. These are gone within moments after lying down. The remainder of my moodiness that's not exactly associated with upright posture are associated with fatigue, nausea, and higher restgin heart rate that I experience during a flare up of symptoms. My point of view is that a lot of diagnostic criteria for mood disorders can be explained by POTS. I stay up late at night, being highly productive. Bipolar disorder hypomania? Nope! I don't have POTS symptoms at night, I feel completely normal. Sometimes I just need a break from symptoms so I stay up late to get stuff done. I walk faster than most people and get impatient when I have to wait for them to catch up. Bipolar disorder hypomania? Nope! Walking fast keeps my heart rate normal, but when I stand and wait for others to catch up I have tachycardia and cognitive symptoms. I have tachycardia and shortness of breath while waiting in line. Panic attack? Nope. Just POTS. I often am in bed all day feeling hopeless. Bipolar disorder depression? Nope! This happens after stress or overexertion. Just POTS fatigue, and the hopelessness feeling is due to low blood pressure. I tend to do things spur-of-the-moment. Impulsive?! Nope. I do things when I can, because I can never predict my day-to-day functional level. I spend too much money shopping [in stores]. Impulsive!! Nope. When I reviewed my spending over 6 months, I found I overspent only when shopping in stores. When I identified items I regretted purchasing and reflected on the circumstances when I bought them, I make poor choices when I'm standing and looking at merchandise as if to decide what to buy. The longer I stand, the worse the decision. (Now I wear a heart rate monitor and stop making decisions when my heart rate reaches a certain point.) Some days I'm just crabby. Oooo!!!!! Bipolar mania, right? Nope. High blood pressure. I can go down the list of mood disorders and check off all the symptoms. **However**, I don't meet the episodic diagnostic criteria, such as with bipolar disorder that symptoms last 2 weeks. For me, it lasts only until the next change of position, or until I've rested and recovered from stress, sleep deprivation, or overexertion. I suggest reviewing the mood disorder symptoms and be extremely specific about what physical position you're in when your experience them, when it starts and when it ends. Also, do standing tests at home. Check your resting heart rate after lying down 15 minutes, then stand up for 10 minutes. Check your heart rate after minutes 2, 5, and 10. Heart rate of 90, like you report while standing, is in the normal range for resting heart rate - it's the difference between supine and standing rates that is significant. If your supine heart rate is below 60, then 90 while standing is significant. Definitely mention it to your doctor. If you have have POTS, I am. ***VERY*** interested what mood symptoms you do or don't have after treating POTS.

@Greyhound, are you sure you're standing still? Pressing the button on my blood pressure cuff is enough movement to change my heart rate by 10-15 bpm. Are you fidgeting, swaying, experiencing tremor, trouble keeping balance, or hyperventilating? All those will significantly effect results. I didn't realize how much I move while standing until I tried wearing compression calf sleeves - they made standing feel effortless. That's also when I realized how much cognitive symptoms I have - those symptoms had become my normal so I didn't notice them anymore. Have you noted changes in caffeine, stress, sleep, exercise/movement, resting heart rate, time of day, diet, time since last meal between stand tests? I'm always curious, I'd want to know why I was seeing variability. You could potentially use that info to your advantage. I was so afraid of being dismissed by my PCP that I used my triggers - losing just a little bit of sleep for 2 nights before, using an alarm clock in the morning, and scheduling my appointment early in the morning. A delayed orthostatic hypotension or orthostatic tachycardia reaction is not atypical of CFS patients. I can't find my source now, but I read in a medical journal that a significant number of CFS patients exhibit POTS symptoms within 45 minutes of standing. Another (Streeten, 1987) notes that CFS patients have a delayed drop in blood pressure after 10 - 30 minutes of standing. Another medical journal notes that POTS is 3 times more common in CFS patients than in controls, and that the pattern was of exceeding >120 bom within 3 minutes, rather than sustained increase of >30 bpm. Vanderbuilt and other credible sources state the CFS and POTS are part of a spectrum. There are other kinds of othostatic intolerance, so don't stress out about whether or not you have POTS. You might have POTS! You might have a different orthostatic intolerance. Remember that your quest is not to get POTS diagnosis, but to get a correct diagnosis. Please hang around here and update us as you go through the process of getting a diagnosis. Even if you end up with a different diagnosis, please let us know. You may help someone else who is struggling with the same pattern of symptoms you experience.

My pattern is symptoms are worse in the morning, and improve throughout the day. By nighttime - when I feel normal - I only have about 20 bpm increase in heart rate upon standing. I sometimes see a pattern of my heart rate spiking when I stand, dropping a bit over the first 5 minutes and increasing over the next 5 minutes. Between days, mine can fluctuate wildly. The most increase I've had was 89 bpm between lying down and standing (that was not a good day!!!). The least has been 20 bpm on a rare, exceptionally good day. MOST of the time it's 30 - 45. Going over 120 bpm within 10 minutes is diagnostic of POTS - in absense of differential diagnoses, of course. I'd suggest doing the stand test morning, midday, and night. Some people on this forum report opposite pattern with symptoms worse at night. Repeating the test will help gather more data so you can look for patterns.

Hi @Greyhound! Your symptom pattern sounds very familiar! In my opinion, the best thing you can do for yourself whilst waiting for doctor appointments is to clarify your symptoms. What makes them better? What makes them worse? There are several kinds of orthostatic intolerance. A tilt table test is the diagnostic test to determine which type of orthostatic intolerance a person has. I haven't had my tilt table test yet! I've seen my primary doctor and a neurologist. Waiting for cardiology appointment still. Cardiology does the tilt table test here. Waiting for diagnosis can be maddening. I have preliminary diagnosis from 2 doctors so I'm sure I have POTS, I just need the tilt table test to confirm it.

I was reading about other topics and stumbled across Primary Orthostatic Tremor. Made me think of you!

Bar stool doesn't help me a whole lot in the kitchen. When I have bad symptoms I'll get tachy sitting up straight - as in to look down into something cooking on the stove. I've taken to doing more sitting on the floor - I can slouch and that keeps tachycardia away. Took me an hour to mix up a batch of brownies from scratch. Totally worth it, I'd been fantasizing about eating brownies for days!

Are you still on Lamictal? I had tremory weirdness in my head/neck and radiating down my arms when I was on Lamictal

It's possible, but another form of orthostatic intolerance may be more likely. Orthostatic hypotension would be more likely and can cause tachycardia as the body struggles to adjust. A tilt table test would sort out which form of orthostatic intolerance you're suffering from. Please stay around while you explore what is wrong and update us! The conditions I've read about that are similar to POTS have similar treatments and selfcare measures, so maybe you can glean some ideas that help you feel better.

Wow! That's great news! I'm happy to hear you found something that works!

(((hug))) -20 degrees F in winter is no fun. I have difficulty in winter and my POTS flares because I'm inactive and get deconditioned. My circulation shuts down and I have pain from the cold. Especially touching cold wet things - inevitable when taking care of barn animals. I had to give up rabbit breeding due to my difficulty with their care in winter. I need to move to a different climate too.

That sounds reasonable, but also seems like you're in a warmer climate. We're about 35 degree average in April. I can deal in summer, worst case is I turn the AC on and the garden gets weedy. But what really worries me is August when I start canning. It's HOT. Terribly hot. I used to cook down several batches of tomato sauce. It takes 14 hours per pot! And if I neglect it I'd scorch it and ruin the whole batch. I was VERY unwell during tomato canning, and "stir-crazy" takes on a whole new meaning! I got an electric canner I can run outside on the deck and I took DH that I'm not cooking down tomato puree this year. We'll do crushed tomatoes instead. I think giving up on tomato puree so I'm not standing at the stove, and being able to can outdoors in the shade where it's cooler will help. I'm still worried about getting through August! I want/need to collect data in heat and compare to my earlier results. I collected data on walking from the garden to the house (my nemesis) in 55 degree weather during a flare-up. I want to compare. Walking between house and garden is enough to keep me out of the garden. I'll have enough energy to weed, but walking up that hill in the heat is just not happening. Last year I had a POTS flare in August and it was awful.

@StayAtHomeMom, your story is encouraging because summer up here is shorter than the amount of time you spent without AC. Thank you for sharing! I'm glad you got AC in your apartment! How long are you able to tolerate heat?

I will try! I had a really good day. I woke up to 45 bpm pulse. Seems like the lower my resting heart rate, the less dizzy and fatigue I have during the day. When I wake up with 70 bpm pulse it's going to be a very bad day. Anyway, temperature was 85 degrees today. I was able to scrub my deck in the shade. I got quite a lot done before getting dizzy. Later I sheared 2 sheep with my husband holding them. The barn is cooler, but it's hot work. I had to stop a couple times when getting dizzy. I'm learning to accept tachycardia but set my boundary at dizziness with vision disturbance. I was in bed 6 times today and didn't dare go out in the sunshine midday.

Any chance it is anticipatory anxiety? I used to have huge problems with anticipatory anxiety. I did cognitive behavioral therapy and learn to stop the thought processes that feed anxiety. I still have some projective thinking but doesn't get out of check. However, I do get increase in symptoms with routine changes before events. My classic pattern is to feel good, plan a special birthday (etc) something for someone, use up all my energy the day before the event and crash the day of so it doesn't happen at all. Do you think anticipatory anxiety or routine changes fit your girls experience?

I think IST is worth looking into. With IST, the 24-hour average heart rate is >94 bpm with a nocturnal dip. From what I gather, SVT has to be eliminated in order to diagnose IST. Have you looked at SVT symptoms, patterns, diagnostic criteria

I agree with @StayAtHomeMom that knowledge is power! I'm learning to be more functional by noticing patterns of symptoms and working around them. My worst orthostatic symptoms start after 5 minutes upright - but I can do housework for 5 minutes and then lie down until my heart rate recovers and repeat until my chores are done. I've learned that sleep is way more important than I ever expected. I can reduce symptoms by sleeping more. And, I've learned to wait to start my day until I've gotten enough sleep. I changed my kids' schedule to accomodate more sleep for me and keep a stash of DVDs on hand from the library to keep my toddler entertained if he wakes early. Many little changes make a huge improvement in daily functioning. You'll find what works for you as you get a better idea of what your symptoms are and what makes them better/worse.

Hi Cait! I'm sorry you're feeling afraid and unwell! There's something beautiful about how accepting and funny toddlers are! My youngest is just over 2. I've fallen down or collapsed and he climbs on my back yelling "Ride! Ride!" because he wants me to crawl around. He helps me see the humor in the situations that would otherwise be very un-funny. Do you have any idea which dysautonomia condition you have? I have POTS so I have tachycardia and dizziness with standing, heat and cold intolerance, exercise intolerance, fatigue, nausea and constipation. I'm thankful to have escaped the headaches which many other suffer from. Does your heart rate come down when you lie down? Lie down with feet elevated? Put ice on your face? Drink a lot of water? Drink a lot of electrolyte solution or take salt tablets? As you start to explore what modifies your symptoms, you'll learn how to take care of yourself. Every dysautonomia patient is different, so don't be shy about taking control of your medical and self-care. Many hugs to you ((((hug)))))

Ask about baroreflex failure when you check out pheo. They're differential diagnoses of each other. I really hope you get some answers. This sounds so stressful!!

Interesting! My bp cuff gives me a lot of errors after eating. I wonder why it doesn't read. The lowest I've measured with it was 83/48. Seems like it should read quite a bit lower than that?

We're getting the first summer temperatures and I'm finding myself torn between embracing the heat and letting myself acclimate to it versus avoiding heat and the more intense (uncomfortable but not harmful) POTS symptoms. Has anyone successfully acclimated to hot temperatures?

Update, 3 times in a row my blood pressure dropped significantly after eating. Then 4 times in a row it did not. I've been checking vitals when I'm inappropriately hungry or nauseated and I'm not finding a trend yet.