BuffRockChick

Anemia can cause POTS symptoms so definitely address the anemia before getting testing done.

Intelligence and processing speed are different things. My son is somewhere between "extremely gifted" and "profoundly gifted" and also has SLOW processing speed. Just takes him a long time to think a thought. Timed tests and "fluency" in fact recall are not his strengths! LOL! If you're interested in reading more, google "overexcitabilites". I find the label distasteful as it is not evidence-based, taken out of context, and has a morally elitist connotation. It also is used to de-legimatize ADHD in highly intelligent children, which is just horrible for the kids to suffer through it. Beyond those caveats, you will be able to see what patterns are typical in children who are similarly advanced as your daughter. Be aware that the "overexcitability" trait is also called Openness to Experience which IS evidence-based, accepted in the psychology community. OE (overexcitability/openness to experience) occurs at a rate of about 30% in the general public and about 50% in people who are highly intelligent.

I am wondering if she has another condition which amplifies her sensory sensitivity. High intelligence often comes with a side of sensory discomfort. ADHD can cause the same because of inability to tune out extraneous noise. Anxiety and other psychiatric conditions can cause hypervigilance and the resulting fatigue. However, "mental arithmetic" is used as a stress test for blood pressure in research. I've played around with this and have noticed that overlapping noise (like two people talking, two difference music sources) raises my blood pressure significantly -- but, *only* if I'm trying to mentally sort out the streams of noise. I have also noticed that when I'm experiencing sensory discomfort, I'm almost always also experiencing physical changes at the same time like elevated heart rate or blood pressure. I believe that dysautonomia causes sensory discomfort - in addition to sensory discomfort triggering dysautonomia. I have been on methylphenidate for ADHD and did not struggle with sensory discomfort while I was on it. I was not aware of my tachycardia/POTS at the time, but I remember I spent most of every day standing up. There was a study of refractive POTS patients on methylphenidate - 77% of patients improved on methylphenidate. If she's not responding well to other POTS treatment (i.e., is refractive) perhaps it's worth asking her doctor if it's an appropriate medication for her.

I could be way off base, but do you have signs of EDS - Ehlers Danlos Syndrome?

Hi @AissaJ! Welcome! I don't have POTS diagnosis yet either. I have preliminary POTS diagnosis. I have neurological exam done (normal), holter monitor (awaiting results), EKG (normal). Upcoming tests are echocardiogram and tilt table test. I'm eager to have diagnosis over with! I was misdiagnosed with psychiatric conditions for 13 years, so it has been a long time to figure it out. If you're going to pursue POTS diagnosis, I suggest keeping detailed log of symptoms. I use a heart rate monitor too. I plan to start an exercise program right away after my tilt table test. I live on a farm too! We have goats - 2 wethers and a diary buck. My dairy doe died last year. We have chicken and small flock of sheep. I love the sheep! They're fun animals (and taste good too). We have a big garden too, but it's doing poorly this year.

Salty chips or crackers and milk for breakfast. Or ramen for breakfast. Whatever. But usually I have mild nausea in the morning and don't feel like eating until nearly lunchtime.

I stay in bed. ? I get really moody and irritable in the morning. I was logging "events" for holter monitor and jeeez.... that explains me feeling tired and crabby! ? On a good day, my morning symptoms are done 10 - 11 a.m. on a bad day more like 4 p.m. I have more good days then bad. I cope by having my kids stay up late and get up late. They're normally up at 9, but if I'm feeling extra tachy I'll let them sleep until 10.

You're not alone! I searched the forum recently and found others have discussed it. Can I ask how clonidine helps you with ADHD? I have ADHD too and I'd prefer medication that does double duty for ADHD and POTS. I was on methylphenidate before I was aware of POTS (but I had it then). I remember I was standing up ALL DAY LONG. Before and after methylphenidate I am in bed 4 -8 hours a day. I had trouble with weight loss and nausea so I'm leery of trying methylphenidate again.

Update!! I had a rough day yesterday, fell 10 times and fainted once. Hubby saw me faint. I've only fainted twice and he has seen both times. I'm glad. He pretty much has no idea what it's really like for me. I had cardiology appointment this morning. Cardiologist thinks it is POTS. They did EKG and I have 48 holter on now. Will have echocardiogram on Tuesday and tilt table test to be scheduled ASAP.

(Written May 30, I forgot to post it) Thanks @AbeFroman! It's great to see how others are coping with POTS and try what works for them! My husband is starting to change his attitude (very slowly). I think the biggest single thing to change how he was thinking was when he asked "Why did he refer you to a neurologist?!" and I replied "Because it's a dysfunction of the autonomic nervous system." He's starting to see (but is not yet willing to accept) that I'm more functional when he backs off and doesn't question my need for rest. If I try to get up and go on 7 hours of sleep, nothing good comes of it. But if I stay in bed and sleep through the morning, I can have a productive afternoon. Haha, I'm up with less than 10 hours of sleep to get to an important appointment this morning, and... I fell twice between my bed and the bathroom.

Sure, you can add it. I did drink 16 oz cold water all at once, and my blood pressure *dropped*. Weird. I asked my cardiologist this morning. He was not surprised and told me to consume even more salt.

When I drink water, I'm more dizzy and fall more. I normally drink milk (excellent electrolyte). We ran out of milk so I drank water. I fell (hard!) 10 times today and fainted once. My blood pressure was 20 mmHg higher than usual and rose when standing, so definitely not OH. I was eating salty snacks all day. Why would I be more dizzy and fall from drinking water? Makes no sense.

Hi Shelby! Many ((((hugs)))) to you! I have fewer diagnoses than you and am older (30's) but I can relate completely. My husband doesn't get it. He didn't believe it and thought I was faking. So I had him take my pulse before and after 10 minutes of standing. It was "only" 120 and then I fainted. His first words were about if I was faking, but I later learned from his employees that he was pretty freaked out by it. He kinda gets the tachycardia now. He doesn't really believe it yet because I haven't had tilt table test. I have preliminary POTS diagnosis from my primary doc and a neurologist. I see a cardiologist in 2 days!!! Anyway, he really does not understand the fatigue. He DOES NOT GET IT. He doesn't understand that dramatic blood pressure changes leave me feeling disoriented and irritable. He has thought of me as crabby, lazy, and crazy for 8 years and it's hard for him to adjust. As a parent, I feel pretty confident that their seeming annoyance and pushiness is motivated by FEAR. They're afraid for your future - what happens if you don't graduate or don't graduate on time. How are you going to support yourself as an adult? These are the big questions looming over their heads. They're TERRIFIED for you. They're freaking out because they love you so much. You may want to talk to your parents about Social Security Disability for yourself. It's not a whole lot and it sucks to accept it, but you do need resources for transitioning into adulthood and independence. You need continuation of health care as you transition into adulthood. Perhaps you can look at jobs that can be done on your own terms and direct your education towards something you can do even when you're ill. I know it's all scary and exhausting, but anything you can do to grow more independent and secure will help relieve your parents' fear and their pressure on you. I wish you the best! I hope you hang around here and participate.

I had another episode of postprandial hypotension. It was after a big meal. I don't know why I have it sometimes and not other times. I know big meals and high carb are common triggers, but I'm not aware of a pattern for myself. I read that postprandial hypotension is common in the elderly (hah, I'm 32) and those with dysautonomia disorders.

Read about hyperandrenergic subtype of POTS, also called "hyperPOTS". It's a likely explanation for increase in blood pressure upon standing. It's also associated with headache, irritability, and anxiety. Glad you have cardiology appointment! I hope you get answers!

I enjoy reading your updates! I hope your recovery from over-exertion continues smoothly.

When I have worked in air conditioning during the day, those years I seemed to struggle most with heat tolerance. I'm trying to avoid air conditioning this year to see if it makes much a difference. I'll use AC in the car or in bedroom to bring it down to outside temperature.

@Elisabeth417, regarding air pressure changes, I found an old thread on this forum with POTSies discussing they felt better in high air pressure, and worse with low air pressure like preceding a cool front. I feel bad before a cool front, and fantastic as the front passes - temperature drops and air pressure rises sharply. You're definitely not alone in feeling worse with weather changes!

I have upcoming cardiology appointment, I will definitely mention everything! I am exploring how much heat is an issue for me. Last year August I had a bad POTS flare and I remember feeling faint in the heat, 90 degrees about. What I can tell so far is that heat raises my "resting" heart rate. Resting in quotes because my 24 hour resting is still the same, but just sitting around during the day, my heart rate is often 20 bpm higher than in cooler temperatures. That leaves me feeeling unwell faster. 45 bpm sitting/laying to 95 bpm standing is tolerable, but 90 bpm increasing to 120 bpm gives me dizziness and presyncope sometimes. I'm trying to adjust to the temperature, we're in upper 70's and 80's now. If my heart rate is higher at night, I'll sleep in the guest room and run the window air conditioner a bit before bed. I have noticed caffeine first thing in the morning reduces symptoms. It's a vasoconstrictor. I had caffeine the whole past week and sleeping late in the morning. My husband's family was in town vacationing and I didn't want to be "drawing attention to myself" with falling, etc. They don't know what's up yet. I have noticed more blood pooling in eat and without caffeine. The veins in my legs/feet are bulging today when I stand and I get irritable. When I lie down and put my feet up my veins go back to normal and my irritability is gone. Coincidence? It was worse earlier today and getting better now in the evening. I'm going to talk to my cardiologist to see if stimulant medication is appropriate. When I was on methlypehnidate for ADHD I didn't have POTS symptoms and was on my feet all day. Then I got a dose increase and had appetite suppression and nausea, lost a ton of weight and had a major POTS flare. Caffeine helps with my POTS, but not as well and doesn't do much of anything for my ADHD. I'm also going to ask about guanficine which is supposed to regulate labile blood pressure and is also an ADHD med. But since my blood pressure tends to be more low than high I don't know if I'm a candidate for taking it. If stimulants are a "no", then maybe midrodine?

I thought I had reactive hypoglycemia, but blood glucose was fine. Barely budged with 65 g sugar in a soda first thing in the morning. That was before I discovered POTS.

I'm glad you're on the road to recovery! Be gentle with yourself! Move forward, but gently! Your story reminds me of @DizzyGirls who posted on here in the last 24 hours about spinal fluid pressure as relating to migraines. I hope you find time to read her recent posts. I'm enjoying perfect weather over here. Not doing much. I started piano lessons, so I've been practicing piano when I'm dizzy. I feel emotionally better to sit at the piano than lie down. My heart rate is about 20 bpm higher than lying down, but as long as I'm not dizzy I don't mind. I've had a couple scares. Yesterday I pushed myself to go out to the garden even though I wasn't feeling great. Gardening was fine, but walking up the slope back to the house was too much. Heart rate 156 standing still, and I started having left arm pain that stayed around for a few hours. Very unsettling. I was fatigued and had cognitive symptoms after too. I spoke to my husband on the phone and he thought I'd hung up. I was there - lying on the bathroom floor unable to make my mouth move to speak. In the evening I was able to walk back from the garden without bad effects after. @Elisabeth417, have you tried raising the head of your bed with risers or bricks? Perhaps that would be a gentler way to fight gravity?

Perhaps he needs to consume the sodium over more time? What happens if you break it up into 3 or 6 times per day? Have you had him drink 3 liters water at the same rate as if he'd taken salt tablets to isolate variables and see whether the water or the salt is the problem? I get sick from drinking water, just a thought.

Oh I can relate to that @Pre! I figured out that in the mornings when my POTS is worse and I fall a lot, rather than stay in bed and get more deconditioned, I can practice piano. I started taking piano lessons. Expensive, but well worth it. I've been playing piano for hours each day rather than laying in bed for hours. I feel proud of the progress I've made too. Sure beats laying in bed feeling sorry for myself! I have a 2 year old too. Music sure tames him too. He's so busy-busy and hard to manage usually, but he'll snuggle endlessly if I sing to him. Usually nonsense improvised stuff, with lyrics like "I'm putting the milk in the fridge!" sung in opera style or blues or whatever suits my mood. My point is that music and toddlers intersect. Rather than trying to add time for music, maybe you can multitask and sing with your little one. You've found something that makes you feel well so the more you integrate it into your life, the better you will feel!

I'd like to go back to something you said before. You were talking about standing, playing guitar, and singing. You thought is was significant in your physical wellbeing. I think it's even more significant than you suggest. Standing for long periods reconditions your body into the upright position, and I've heard of it being used in a treatment plan for POTS. The deep breathing from singing is significant as well. Those deep breaths, and the "held exhale" as you sing change your blood gas chemistry to conserve sodium. While you can't sing and play guitar at home the way you'd prefer, you can approximate the activity. You could join a choir, be a street musician, or practice standing yoga poses with deep breathing. Really, you can simply stand up and breath deeply with a long slow exhale. It's not as enjoyable as singing, but you can do it in your apartment without needing to remember lyrics. As far as mental and emotional wellbeing, making music and mastering skills are powerful medicine of themselves. It's certainly possible to have POTS and mental illness. Perhaps getting relief from mental and emotional distress will help you be more able to cope with POTS, and like others have mentioned, SSRI And SNRI are sometimes used to reduce POTS symptoms. Without getting a full medical workup to find the sources of POTS symptoms (which may be idiopathic anyway), there's really no medication advice anyone can give - it will be guess and check to see how your body reacts.

I agree that taking vitals at home and gathering data is a strong step towards getting answers. I acquired a psychiatric misdiagnosis 13 years ago and as symptoms and "atypical response to medication" accrued, I acquired more and more psychiatric misdiagnosis. I had never noticed the tachycardia other than feeling ashamed for "being out of shape" and vitals are always taken seated at the doctor and psych appointments, so it was missed! I stumbled across the POTS diagnosis myself, did the standing test and not only did it provoke tachycardia, but also my "psychiatric" symptoms. I collected data daily for weeks in order to establish patterns and present the information to my PCP. The thing that really got his attention is that my "psychiatric" symptoms begin when I stand and end immediately after lying down. That got me past the psychiatric diagnosis and my fitness tracker heartrate data and graphs established my pattern. He had me stand up to check pulse and blood pressure, and then got me set up with a referral. ? I found a blog post with detailed information about preparing for doctor appointments for dysautonomia / POTS. I bet you'd find it with a quick google search. Best of luck to you! I hope you have more productive appointments in the future and she gets relief!