BuffRockChick

Hunny, it's your body. Your SO doesn't get an opinion about your medical care and your body! I know it's only one sentence, but statements like that raise my hair. What's his goal, to keep you disabled? Are you safe? Is there coercive control going on? (I don't need to know, but think about it and make sure you really are safe.) I'm sorry you had that experience and are feeling unwell. Statistically, POTS is likely to improve over time, so don't give up! RE: PCOS and TTC, I completely understand that heartache! However, miracles happen, when you least expect them. Took 6 years to conceive my first and 8 years to conceive my second. Many (((hugs)))

@Kris4444, some inspiration for you! This woman has POTS and runs 100-mile ultra marathons! Sounds like managing her symptoms is still a struggle, but WOW! Keep fighting for your dreams. <3 http://killtherun.blogspot.com/p/running-ultramarathonswith-pots.html

I think since I was diagnosed with panic disorder (when I wasn't feeling anxiety!) I have a learned conditioned response to frame symptoms as psychiatric and "mood". Went to the zoo today and was feeling mildly unwell. Feeling like I wanted to leave early, didn't want to walk to see outdoor exhibits. Very vague at first. My HR was 80ish then (my resting is 52 - 55). By the time I found a seat, HR was 100+, can't form a sentence, short of breath, dizzy. In the past I might have framed the experience as anxiety, sensory overload, impatience, blame my son's ADHD, or my crabbiness, and then rumination over my failing to have a successful fun outing. Today, it was just "hey kiddo, we're going back inside."

I would like to know what others experience for mood when standing! I was diagnosed with mood disorders (just about all of them) over the last decade or so. None of the treatments helped or changed mood patterns. I noticed tachycardia upon standing, and then did poor man's tilt test at home. I noticed I would have a profound mood change as other symptoms increased. I would feel bored, apathy, hopeless, or irritable (rage). I laid down after the test and the mood evaporated. I been tracking over 2 weeks and this is no coincidence! When I have a change in mood, it disappears when I lie down. I don't feel it coming on most times, or I'm oblivious to the cause. One time my kids woke me up in the middle of a bad dream and proceeded to misbehave. I woke up and jumped out of bed to address their behavior. Minutes later I complained to my sister about how their bad behavior ruined my day, etc, etc, but after a couple minutes lying down I felt totally normal. Only then did I realize my "mood" was because I jumped out of bed and stood up until I was dizzy. I will have to go back to a psychiatrist at some point to follow up on ADHD diagnosis (since methyphenidate improved my POTS symptoms too!). To prepare, I've been writing down any time I feel any mood fluctuation and surrounding circumstances. My mind is blown. My family thinks of me as a crabby irritable person. (I am cringing writing that, I FEEL positive and patient 98% of the time). I had 3 situations of irritability today. The first 2 I recognized physical symptoms right away and made a change and avoided any mood change or irritability. The 3rd one was an inescapable situation, but I was able to tone down my response to something that wasn't inappropriate. I noticed in the 2nd situation of the day that as the mood and irritability came on, I was having cognitive difficulties. I was sitting on a stool with my knees up and feet on the stool, stirring something on the stove with a candy thermometer. I was getting **mildly** symptomatic, not yet dizzy, not tachy enough to bother graphing it. My son was trying to talk to me and I couldn't comprehend the words he was saying and the effort of trying to hear him and stir the pot felt draining. I managed to say, "I'm symptomatic. Not enough blood. Brain." Funny in hindsight, but I couldn't get the words out! My past normal reaction would have been angry/adrenaline and snap at him out of proportion to the situation. I've told him enough about what I'm experiencing that he understood my un-sentence and found something else to do. When my cooking was up to temperature I laid down, he came over and we talked about what had been on his mind. No mood problem, no irritability, no crabby. My oldest is homeschooled and usually I get impatient and annoyed helping him with schoolwork. Y'know, standing next to him while he is sitting. I help him with schoolwork while I'm lying down in bed? No impatience, no annoyance. Huh. I'm noticing that the more aware I am of POTS symptoms and work around them, the fewer incidences I have of irritability. Down to 0 - 1 a day now. Does anyone else experience cognitive or mood changes with POTS symptoms? How about with mild symptoms? As a first symptom? Does anyone have a mood disorder plus POTS who could speak to what that experience is like? Is it similar to mine? Different?

I have not had similar experience, I haven't had tilt table test yet. I've done poor man's tilt (lying down to standing up) at home and wearing heart rate monitor so I have some data. I was at doctor appointment to get referral for tilt table test and I was so concerned about getting blown off that my sitting HR I the doctor office was 80! (Normally 55-60!). And something different was going on, blood was pooling but warm and red skin verus my usual pale purple and I felt not right, but in a different way than my usual symptoms. That's unsettling to me when the symptoms I observe and carefully track over weeks don't match the symptoms I have in the doctor office! I've only fainted once and I am unreasonably afraid of fainting on TTT, that is, being alone and vulnerable in medical institution because I've had experiences of medical treatment without consent. I am worried it might skew results like you experienced. I'm practicing my relaxation and CBT skills. I am going to try to have my husband come with for the tilt table test, I think I'll feel more calm with him there. I'm sorry you've had this experience. The only thing I can think of is to collect data at home, practice meditation and relaxation, and try the test again?

Can you get in at Mayo Clinic, Rochester MN?

When I have shortness of breath, it's easy for me to hyperventilate without noticing and then stop breathing for a couple minutes. Interestingly, that slows my heart down and relieves many of my symptoms. Is that what you're experiencing @Don?

Updating! I saw my GP. He checked pulse and blood pressure after 2 minutes of standing. Both were up. He referred me to neurology for tilt table test. I'm kinda dreading it, but will also be a relief to get a better idea what is going on.

Uggh, I've gotten the "all in your head" too, before I noticed the tachycardia. Trying again. I will keep Dr. Hyser in mind. Thanks!

South of Rice Lake. Pretty much middle of nowhere! LOL! But isn't everything out here?! Where do you go for treatment? Are there any good doctors around here? I'm not diagnosed with POTS yet, I have an appointment with my PCP tomorrow. I'm sure I'll end up with a referral, but no idea where too.

Hi @pink1975! I'm all happy, noticing you don't live terribly far from me. I'm closer to Rice Lake. I have sometimes have shortness of breath when standing, depends on how bad of a day I'm having. It's relieved by putting my feet up.

@Kris4444 I have the solution! Don't get off the horse! Obviously the horse you've been riding needs a rest, so swap out onto a fresh mount and keep riding. You could learn to sleep on horseback, right? ? I couldn't resist the joke, but I can relate to misery after stopping activity. I love to run, but I just can't. When I stop running I have terrible symptoms that remind me of yours but they're not my POTS symptoms, they're more like asthma. I understand the frustration and I admire you for not giving up on your goal! Is your horse training on behaviors or physical strength or endurance training? Perhaps there's a way to get training done that's easier on you? Delegate endurance type training for your horse? Maybe work in shorter sessions? Much shorter? Take a break every 5 minutes during training? Take a break after each behavior you work on? Extend your cool down time still on horseback? Delegate someone else cooling down your horse and you work on bringing your heart rate down slowly and safely? I treat my symptoms like a science experiment and have found some useful patterns that surprised me! Maybe there's something you can change where you can get the work of training done without exacerbating symptoms. I wish I could offer REAL help, but I hoping one of these questions might help you in creative problem solving how to get through training without feeling so ill afterwards. ((((hugs))))

I find Fitbit to be very accurate if you wear it correctly and ***don't read HR off the device which displays a 5 minute average***. You can get real-time HR off the app, and activity tracking makes a graph of HR measured every second. The most difference I've found between Fitbit Charge HR and manual was 3 bpm. @Vicky, normal jump in HR from lying down to standing is about 15 bpm for only a couple minutes. POTSies generally have sustained increase of 30 bpm or more. American Heart Association has good info on normal heart rate on their website, also medical papers that discuss diagnosing POTS refer to normal range. You can look up medical journals on Google Scholar. I've found quite a few on POTS available through National Institute of Health website.

Hi Vicky! I'm in similar situation. I've been lying down for 5 minutes, standing up for 10 - while wearing Fitbit. On the website, I go to Log Activities, create a custom activity for the time I was lying down and standing. Click "view activity" and it shows a graph of exactly what my heart was doing. I've been doing this every day along with tracking symptoms, steps, water, sleep, etc. I have a doctor appointment next week to get started towards diagnosis. I'm super excited! I had a hard time figuring out how to get the graph from fitbit so I hope it helps you!

One of your eyelids drooping? Was your pupil on the droopy side smaller? May want to look into that. I read about medical conditions for fun (because bodies are amazing) and recently read about a condition of the nervous system which causes a drooping eyelid. :curiousity:

Hi! I can only address one of your questions, and only a little bit - #5. I am not yet officially diagnosed with POTS. I've had symptoms since 2004 after I had mono. I acquired a long list of psychiatric [mis]diagnoses, one of which was a personality disorder. I got borderline personality disorder based on past of self harm, disordered eating, and irritable outbursts. However, I have learned since that my irritability is perfectly correlated with orthostatic hypotension. If I stand long enough that my heartrate gets <120 bpm, I get irritable. When I lie down and put my feet up, irritability evaporates. I've also learned that the endogenous opiods which are released during self harm regulate the circulatory system, while maladaptive, there's reason why I "felt better" after. My disordered eating is actually chronic / intermittent nausea which is worse after drinking water and relieved by salt. I'm annoyed with getting diagnoses based on cherry picked symptoms. No doctor has ever looked at all of my symptoms together. I'm hoping that adding orthostatic tachycardia will help get some better answers. I have a doctor appointment next week to try! Has your husband tried compression garments? I bought compression calf sleeves for running as an inexpensive experiment. It's amazing! My heart rate was <30 bpm and I could tolerate more activity. I went shopping and overdid it and spent the next day in bed. . But it really helps with the heaviness and vein pain!

@yogini, I'm making bone broth right now! Just bones and water, boil and add whatever seasonings you like. You can freeze the boiled bones and reuse them a couple times to make another batch of broth! Tonight I'm making bone broth using 2 picked over rotisserie chicken carcasses. Whatever seasoning is on them makes my favorite broth. Edited to add: It's easiest if you have a stock pot with a strainer insert. Lift out the inserts with the bones and any extras, and you're done!

I have a service dog flunkie. He's a poodle. He can pick things up off the floor for me and he used to retrieve medication and water bottle, open and close doors. He was trained back when I was [mis]diagnosed with bipolar disorder, so he never was terribly helpful. Now he's a huge PITA and can get into everything that doesn't have child safety latches. My previous dog was a lab. He did deep pressure therapy, counter balance, retrieving dropped items. He was incredibly helpful, I would have been housebound without him. My dog is 5, but I'm dreaming of a future dog and what I would train it. I would get a bigger dog. Train it to respond to my heart rate like my lab did. Train it to wiggle its body under my legs and stand up to hold my feet up? Definitely counterbalance. I really hope I can heal from these symptoms before my poodle passes and I'm looking for another dog. We have a super-friendly barn cat who comes inside the house in the mornings. She's very comforting. <3 Hubby has an old golden retriever who has had a grudge against me since I took his spot on the couch 8 years ago. I bribe him with treats. LOL

(((Hugs))) I'm not yet diagnosed, but had POTS-like symptoms since 2004. I've had 2 kids since. I was on bedrest 3+ months with each pregnancy. I had bad symptoms after the first pregnancy. The second pregnancy was "partial" bedrest, I had more symptoms during pregnancy than after, but my OB and nurses blew me off. I've had awful care experiences during pregnancy and delivery along the lines of treatments without consent. Hubby and I are trying to conceive again, but will probably seek only limited prenatal care and probably a home birth. Likely out of necessity since I have precipitous labor and live 30 minutes from a hospital if hubby drives (but somehow took an ambulance a whole hour!). :sigh: I'm seeking diagnosis, but not pharmaceutical treatment because of trying to conceive. I'm also very interested in POTS + pregnancy topics. Please post updates as you move through this!

@bunny, your fitbit HR data isn't discarded. You can get moment by moment HR data! Go to the website, an log an activity. Then look at the details of the activity and you get a HR graph of every second during the activity. I use this feature the most. I attached a screen shot of the HR graph. I thought this one was cool because I had a particularly bad tremor while I was standing up and it affected my HR.

I've adapted by setting a timer for 5 minutes to do upright tasks, then lying down until my heart rate recovers - usually 7 minutes. I can get quite a bit done a couple minutes at a time. I feel a lot better doing this than staying in bed all day.

I'm awaiting diagnosis, so I can't say 100% for certain I have POTS yet. However, I do poor man's stand test at home to see what helps. Compression calf sleeves help me a lot. I still have >30 bpm increase from lying to standing, but without the dizziness and such. It helps me function a lot better, especially in the morning. The other thing that helps me is salt + fluid. I function better on days I have ramen soup for breakfast. Here's a long list of things that can help:

Walking on flat ground indoors, HR is 70 (good day) to 125ish (bad day). I tried mirror workouts on recumbent and upright elliptical machines. On the recumbent, I was able to do a good 30 minute interval workout switching between resistance levels 1 and 9. HR during the level 9's was 120 - 130. I cooled down, rested, and then tried upright elliptical. 4 minutes into the warm up, my HR was 180, I was getting dizzy and my vision was graying out / visual snow. I stopped immediately and laid down with my feet up. I think I'll be sore tomorrow, but if I'm not fatigued (more than usual) I would like to continue with the more normal workouts on the recumbent machines. I haven't tried them all yet. I am going to ask my doctor about heart rate for exercise! Thank you for the reminder!

Nope, I am awaiting diagnosis. I have labs this coming week and doctor appointment the following week. I'm tracking everything and experimenting, trying to rule out variables in advance. I know my blood pressure doesn't drop significantly when I stand up (that was checked in the past during a particularly bad bout of pre-syncope and falls). I know I have tachycardia when I stand, and blood pooling in my hands and legs. I don't have tachycardia or poor circulation lying down. My symptoms are severe enough to be legally disabling. My symptom pattern matches up with POTS so I'm curious what my doctor thinks and where he will refer me. I have data on these symptoms going back 13 years, but they've never been looked at as related to each other. My most distressing symptoms are fatigue, cognitive/attention problems when standing, chronic vein pain, and blood pooling in hands and legs, chronic nausea, cold/heat intolerance, irritability (which happens when I'm standing and is resolved when I lie down and put my feet up).

My hands do that when I stand up or get cold. Once it starts it persists, even after other symptoms stop. A hot bath works for me. Calf pressure sleeves worked wonders for me, so I'm probably going to get compression arm sleeves that go over the hand too.