BuffRockChick

I have no idea @SarahA33. I have neurology consult in 4 weeks. My last pregnancy I had very early miscarriage after just 8 days. Anything could happen yet. I'm trying to not think about it and enjoy being active while it lasts.

I've felt awesome the last 2 days. A little tired in the afternoon, but really no physical limitations. I DID NOT fail the stand test yesterday, for the first time! My resting heart rate has crept up, but I'm not sick. *** is going on?! I'm pregnant - this morning is third day past implantation. I had a very early miscarriage in February so I'm not exactly holding my breath. I'll just enjoy a break from POTS as long as I can get it. I'm annoyed that this could interfere with confirming my diagnosis.

Novel idea: trying chugging a sweet drink like Kool-Aid or Gatorade. There's evidence coming out in the last year that the sugar industry did a massive cover-up after research showed sugar to increase risk of heart disease, and that set off the USA's past low-fat high-sugar diet. Hey, everyone got high blood pressure, heart disease and obesity! YAY! :sarcasm: 74 grams of fructose daily is associated with 30% increase of risk of blood pressure over 140/90 and 70% increase of risk of blood pressure over 160/100. Perhaps added sugars with your water bolus can help you feel better? If nothing else it gets some calories and energy into you right away. Do you dare try caffeine to raise your blood pressure?

Have you tried chugging a "bolus" of 16 ounces of cold water? It's evidence-based self acre for raising blood pressure. I wonder if that would bring you up enough to be able to eat - and wonder if you'd be able to eat after chugging water. Other forum members who feel worse after eating report tolerating very low fat diet. Is that something you're willing to try? Perhaps the foods you're tempting yourself with are too rich for your digestion? (And some feel better with high fat / low volume diet, I'm in that group.)

When reading about chronic illnesses and chronic pain, I've seen quite a bit about reducing secondary gains. In other words, we can become conditioned to experiencing symptoms in order to gain... time off, sympathy, etc. It's a bad trend for several reasons, but one is experiencing more symptoms than necessary. My husband works hard and provides our financial needs. He does most of the cooking too, but that wears on him. When I've worked outside the home, I've been so nonfunctional at home that he thinks it's not worth the extra paycheck. I've minimized my obligations as much as possible. I had one thing I volunteer for, but the meetings are virtual so I really can "attend" from bed if necessary. I've been purging hobbies, possessions, anything I need to make decisions on. I got 3 months of normal half-day functioning after that, until I had a miscarriage about 2 months ago. I can... request library books and DVDs for my kids. I can lay upstairs and watch a documentary with kids (can't watch anything depressing, dramatic, suspenseful, or with advertisements). I can lay on the floor and my toddler climbs on me, or do floor exercises while he mimics. I can crawl around the house. I can do food prep on a cutting board on the floor. And then other days, I can fake normal activity pretty well. This morning has been fabulous! My 10 year old is pushing buttons and I'm about to lose it and that will ruin my day .... the whole rest of the day, I'll be useless. I'm seriously considering putting him in boarding school. He is not a nice person to live with.

I used to have terrible anxiety (or "anxiety"?), but after 3 years of cognitive behavioral therapy, I'm fin on anxiety and only feeling the physical symptoms. I used to have these episodes much more frequently when I was working in jobs that were primarily standing up and when I was in a bad marriage - back when my anxiety was bad and before we moved to a quieter location. No neighbors, no street noise, no TV..... :bliss: What do you do for self-care? How do you take the edge off? I saw some people mention Benadryl? I'm willing to try it, unfortunately didn't have any yesterday. I seem to NEED absolute quiet, but that's hard with kids!

If you have HyperPOTS and this does *not* sound like anything you experience, that would also be helpful information for me.

Hiya! I have preliminary POTS diagnosis, waiting for neurology consult and further testing. I suspect I have HyperPOTS after reading forum members with HyperPOTS describe their symptoms, and because informal short stand test at doctor's office showed increased blood pressure. I regret not asking how much it went up. I had systolic pressures 80 through 120 during the appointment and standing up was higher than that. My normal, calm, sitting in doctor or dentist office eblood pressure is usually 90 - 115 / 50 - 80. I ordered a wrist cuff to play with at home. Today I experienced something other than my normal POTS symptoms, but it wasn't the first time I've experienced it. It was kinda like flight-or-fight response, minus the sweating. (I do sweat, it wasn't the same as my adrenaline reaction.) I had some sorta-tachycardia lying down, nothing extreme, but enough my fitbit automatically recorded aerobic workouts while I was lying or reclining in bed! I collapsed twice -- without tachycardia -- but with my normal POTS symptoms, plus an awful pounding headache. The most distressing symptom today was extreme irritability, even aggressiveness. It felt like I'd overdosed on caffeine, but many times worse. Usually I get snappish and somewhat irritable when standing too long - and usually I'm aware of it, it correlates closely to tachycardia and is resolved immediately upon lying down. Today I was physically reactive, nearly raging, in reaction to every little stressor and it wasn't resolved with rest - except for rest plus silence. When me kids were napping, the physical symptoms and irritability dissipated after about 30 minutes, only to return full force when they were getting into stuff again. I also noticed my hands were *not* purple mottled today, they were flesh colored to pink. The episode ended the way my POTS episodes end, with gradual tolerance of activity. It's over now. I wonder if this was some kind of adrenal storm or hypertensive crisis? It was insane-feeling. Yesterday I felt unwell, but kept to my scheduled day of volunteering (with 45 mile commute) and visiting a friend and her 3 kids. I was out of spoons before visiting a friend and my baby fell asleep in the car so I went in to say hi/bye as she wasn't feeling well early. But my oldest disobeyed and brought my little one inside and there was no way to get out of that without 5 boys tantrumming at the same time. I had difficulty driving home due to fatigue. I can get run-ragged by sensory stimulation, maybe I overdid it worse than I thought and paid for it today? Does this sound familiar to anyone? Any suggestions what might have happened? What I can do for self-care if it happens again? How to describe to a doctor? What to test for at home or with upcoming diagnostic testing?

Do you have anxiety for certain? Do you feel anxious when you don't have tachycardia? Do you feel anxious when you're lying down? People with hyperPOTS will have high norepinephrine, which may be experienced like anxiety.

Hahaha! I know, right?! I have preliminary diagnosis, awaiting tilt table test for official confirmation. How did I not know? It's been 13 years! I especially identify with hair straightening! I can't manage styling my hair. I have to have it pixie-short or ponytail-long! Pumping gas, brushing teeth.... yup. I had an amazing opportunity to teach classes, but after one I felt terrible. I couldn't figure out why I struggled so much teaching these classes, everyone (including myself) assuming anxiety. Nope.... just standing for 4 HOURS. No freaking way. Welcome to the club! Please post often as you begin to learn how to minimize your symptoms. (((Hug)))

Oh gosh, I see your concern! Lamictal is a scary med to go off of cold turkey and then the risks of being unmedicated while tirtrating back up to your dose, y'know, so you don't die from it..... I was [mis]diagnosed with bipolar disorder - and a whole bunch of other psych conditions. Wading through all that and it's turning out to be ADHD and POTS. POT diagnosis is preliminary, still waiting for confirmation. I had atypical mood symptoms and atypical response to medication. Seroquel was HORRIBLE for my POTS symptoms. I was completely disabled, spent most of the time lying down. I was experiencing presyncope just sitting up and would collapse almost every time I stood up. Also been on lithium, lamictal, depakote, abilify, klonopin, Ativan, citalopram, Prozac, Paxil... you name it. Uggh, I lost so many years, dollars, and memories to that misdiagnosis. I've no memory of my son's toddler through Kindergarten years, I was not advised that the medications had amnestic effects. Too bad the statue of limitations for malpractice is already passed. I feel for you trying to manage POTS and pysch meds. That's a rough deal. Hang in there! I hope you get some answers soon!

I wear a heart rate monitor, so I've noted that sex is less strenuous than standing up. Pick a horizontal position, LOL. Max heart rate is 220 minus your age. The only thing I've noticed in the middle of POTS symptoms, sensation feels different, unpleasant. Hubby woke me up this morning and I insisted on brushing my teeth first. My heart rate jumped >60 bpm while brushing my teeth and I was short of breath and feeling generally unwell. I laid down in bed (panting) and he touched my skin lightly. It felt unusually intense and uncomfortable - I jerked away and batted his hand away! - but the sensation went away in a couple minutes when my heart rate returned to normal. Ask your doctor if you're concerned. Good luck to you!

@Finnmin, your husband's symptoms are so much like mine! It's uncanny! Waking up with an alarm sets off a jolt of adrenaline, fast functioning yes, but serious payback! I have noticed if I wake early, without an alarm, I feel much better! If I wake after 6:30 I feel terrible, and the later I sleep the worse I will feel. I would then lay in bed for a couple hours before feeling functional. My hypothesis is that early waking feels better because of more cortisol earlier in the morning, but waking with an alarm triggers adrenaline? I have worse symptoms, similar to waking with an alarm, when my children wake up before me and start getting into trouble! I wake early without an alarm when I have caffeine the previous day, although I'm not sure how much or what time gives me the best effect. Too much caffeine give me an awful adrenaline feeling all day and I get crabby - exactly what I'm trying to avoid. I started sleeping on the east side for the house for brighter morning sun, and taking magnesium and melatonin at night. It's also next to my kids' bedroom so I can catch them trying to sneak downstairs and send them back to bed. I didn't have the morning/waking problems while on methylphenidate for ADHD, and my POTS symptoms were a lot better. I ended up having severely suppressed appetite and weight loss and couldn't continue. I was on too high of a dose. I am concerned about beta blockers increaseing risk for diabetes, so I might request trying methylphenidate again - at a lower dose and with a more experienced prescribing physician. I suspect I have hyperPOTS, so stimulants improving symptoms makes no sense to me at all, but whatever, maybe I don't have hyperPOTS. I'm impatient for more accurate diagnosis!

Interesting! Has lithium changed your POTS symptoms? New research published in 2016 shows low-dose lithium increase vasorelaxation. I doubt lithium would mask POTS symptoms - and there's possibility it could make them worse. Definitely talk over your concern with your doctor in advance so you don't need to be anxious about discomfort or inaccurate test results. ((Hug))

How many here had worsening of symptoms with less sleep? Is this an expected trend for POTS? I've been stable for about a week. Last night I was up late and this morning I felt unwell after brushing my teeth. Checked HR and it had increased >60 bpm in 3 minutes since getting up. I seem to have a pattern of periods of increased symptoms after periods of sleep deprivation, but I'm not entirely sure if that's a correct correlation since I'm going from memory of events long before I knew about POTS.

Wow, that's awesome @marcus99! Very inspiring! I'm holding off on exercise for a while, until my tilt table test. I have neuro consult in a month, and who knows how long until I can get in for TTT. My symptoms have subsided somewhat. I have sustained approx 6,000 steps per day for several days without crashing. ? Probably combination of various self care strategies.

I'm fighting against 13 years of psychiatric [mis]diagnoses, including anxiety and panic disorder. I also get mood changes when standing. I am just starting to figure it out - in my 30's! Seems to make a difference to tell a doctor that the mood/anxiety/irritability disappears immediately when I lie down. I collected data for 2 weeks and presented it to my primary doctor. He put in preliminary POTS dx and referral to neurology. Arm yourself with data. Treat it like a science experiment and try to isolate variables of what makes it better or worse. Those details *should* make clear it's not anxiety.

I did it again when hubby got home and had a red line. He had none at all, my son had white. (My son might have POTS but isn't complaining of dizziness or fatigue. He has increase of 40 bpm upon standing, but it was a poor test because he fidgeted so much.)

I've been reading and seems like Bier spots plus white line would indicate "defective adrenegic receptors" - which are the little guys that beta-blockers act upon. I'm especially interested because it seems that an alpha agonist could work too. There's an alpha agonist that is used to treat ADHD and anxiety, after my tilt table test confirms POTS I'll will ask about these treatments - and now I'll better understand what they're talking about! Cool! Thanks @Finnmin!!!

That's so cool! I have only preliminary diagnosis, awaiting tilt table test for confirmation. White line for me. I get white spots on my lower legs while standing for a few minutes, might also be Bier's spots.

Bwahahahahahaha! Yeah, that would suck for our SO's to hear that from a doctor! I get adrenaline during appointments and can't think straight and look/sound anxious. My word retrieval is below average normally, and then I can't express myself clearly. Hence, fighting against psychiatric misdiagnoses.

Hey Razzles, I bet your doctor is trying to communicate "your circulatory system is fine" rather than dismiss the validity and impact of your symptoms. Sounds like it's time for a neurologist since you've ruled out endocrine and cardio as sources of your symptoms. Good luck! I hope you find relief of your symptoms!

The thought of SVT definitely scares me, and wow, with family history of heart problems I'm glad you fought for your EKG! My hubby referred to POTS by name today in conversation! Woot! Feeling hopeful! I wonder if you can prep for appointments for better results? I read a blog post by a woman with dysautonomia about prep for appointments. I tried her advice. I collected data in advance (which was good because I initially thought I had blood glucose problems but that was totally wrong). I wrote out my history and symptoms so it would be in my chart right. And I use medical terminology whenever it's accurate and appropriate. I make a display of knowing a bit more than I actually understand so I get more detailed information from doctors. If I think it's going to go over my head, I bring my hubby with because he will understand the biology and medical stuff and ask better questions than I would. I think I got stuck with psychiatric misdiagnoses in the past because I didn't understand what caused symptoms or made them better, I didn't understand how symptoms were related, and I didn't do a good job explaining them. There are some good websites about "how to talk to your doctor" that might help you.

I get it the prickly itchies in my legs, but only when blood is pooling and they're turning purple/red mottled. It goes away wen I lie down. It's not everytime, seems to be when I'm not extremely tachy.

My hubby is hard-headed too! OMG, he's probably the only person on the planet more stubborn than I am! He's in denial in a different way. He thinks I'm just a crabby, negative, irritable, dramatic, attention-seeking, self-centered, lazy person. OMG. I'm hoping getting preliminary POTS diagnosis by neurologist will help. He'll come 'round if he sees the data, he has graduate degree in medical field. I was misdiagnosed with psychiatric conditions before we met. It took him time to adjust to ADHD, not bipolar disorder. Next up is POTS, not borderline personality disorder (fast mood changes, irritability). Don't mind that doctor's attitude - a clean EKG is not "no news", negative test results are meaningful! He's right that if you have a typical presentation of POTS it will come back as normal. But.... what IF you don't have a typical presentation and you also have a cardiac condition?! See, value. I'm glad you got the referral and I hope it your results are normal! My doctor was shocked that I said I wasn't pursuing medication for POTS because we are trying to conceive. Well, maybe not. I was on bedrest with both pregnancies and had worse POTS after. REALLY, REALLY BAD after my first when I had a more strict bedrest. I didn't have easy pregnancies! Maybe adding POTS into the mix my hubby would be more open to adoption? He said yes to adoption but now says no. I had a very early miscarriage 2 cycles ago and my POTS symptoms flared up. Part of me is like "YOU FREAKING OVULATED TWO CYCLES IN A ROW, THIS MIGHT BE ONLY CHANCE, KEEP TTC!" And the rest of me is like "no." When I went to my OB about fertility, he said the first thing to figure out was whether or not I was ovulating. He recommended using ovulation predictor tests. There are two kinds, the urine dips and the saliva ferning test that is reusable. Maybe figuring out your ovulation status would help? Many (((hugs))) and baby dust to you.