imapumpkin

Congrats!!! such great news always great to hear its possible to have POTS and be high-achieving!

That's so frustrating, I'm sorry. The worst is a medical professional who refuses to listen to you. Often doctors just see us as an assembly-line patients; just another diagnosis. Definitely research a cardiologist who has heard of POTS or at the very least, is more compassionate. Whenever I tell someone in the medical field that I have POTS, and they say "What's that?" I want to scream "OMG GOOGLE IT." Unfortunately we all have to be ambassadors for our own illnesses because more often than not, doctors aren't invested enough to do their own independent research on the subject (like my PCP who feels she has no obligation to look into a condition that one of her patients has. Yes, I am the only patient at the practice who has it, but don't you think it might behoove a doctor or a doctor's office to educate themselves when they find out about something new or obscure so as to better treat their patients?) It's also okay to say to a doctor "I feel like you're not listening to me/not hearing what I have to say". ALSO-- if he wants to do more tests, ask for a cardiac Event Monitor; that's how my cardiologist diagnosed my POTS. It's a little device that looks like a flat remote control and you press it right up against your chest only when you are having an episode of tachycardia and press a button that records it for about 30 seconds, then you transmit it over the phone to the lab. Holters can't show that the increased heartrate is due to orthastic change, even if you do write it down on the little piece of paper they give you...if he's not going to listen to you in person, chances are he won't put much stock in what you record for your holter.

Ah fudge. This is the downside to the information age. Now I'm worried I have this as well. Since I was a teenager I've always needed lots of sleep and feel tired all day. It was better when I was a teen and in college but ever since POTS popped up into my life I barely ever truly have energy and rarely wake up feeling as though my need for rest was satiated. I have been attributing this lately to the POTS and the Tachycardia as well as my problematic MVP and hopefully this isn't hypersomnia.

I've seen some of my cardiologist and pediatrician medical records and it's not uncommon for doctors to comment on the physical appearance of the patient. Maybe they do it so that they will have more characteristics to remember you by and to differentiate between you and their many other patients, but it's typical for docs to comment on physical appearance, energy level, general attitude and my pediatrician even commented once on me being a "bright" adolescent when he was still my doctor. I don't think it's anything to be concerned about and don't nec think it's innapropriate, they like to get a picture of the whole person, not just your medical chart so they are treating all of you not just your symptoms.

I saw this too, but her autopsy report listed pneumonia as cause of death. while I commend her brother for trying to bring awareness and recognition to the condition, I doubt it was a contributing factor in her death and shouldn't be a cause for alarm for the rest of the dysautonomia community. Obviously people who know they have dysautonomia should do all they can to learn about their condition and what works for them and if they are medication intolerant and how best to take care of their bodies, etc but I don't think anyone on the forum has to worry that POTS itself is life-threatening.

excellent find! thanks =)

Hi incog. I can only speak for the dysautonomia with the MVP. I have POTS and MVP. When I was diagnosed with MVP I was 19 and was told it was mild. I just turned 25 and was told last week I need valve repair surgery because it has gotten much worse. My cardiologist essentially said there's really nothing a person can do to make their MVP better and nothing they can do to prevent it from getting worse other than living a healthy lifestyle. Most people with MVP lead normal lives and it is benign,but I am told my POTS is making my MVP worse and vice versa. I would definitely make sure your cardiologist is on top of your MVP and orders echo-cardiograms every year or even more frequently to monitor the MVP. I have been on benzos for longer than I've had POTS or been aware of the MVP and it seems to have done me no good since I have gone from A-OKAY to needing heart surgery in a matter of 6 years. I would just suggest staying on top of it. Have you been officially diagnosed with dysautonomia?

My fear of going to sleep stems a lot from anxiety, most of which is irrational but if I am having a really exhausted day with brain fog and crazy palpitations I get irrationally afraid to go to sleep because I worry that my body is just going to give out while I'm sleeping and if something goes wrong, I won't be awake and alert to call for help. I know its silly but anxiety is not rational. It's also extra ridiculous because I have always loved sleep. I have very vivid dreams and in those dreams I am not sick. During sleep I at least get to experience energy and health, even if it is just in my brain waves.

Short doesn't nec mean unsuccessful. My TTT was only five minutes and they were able to confirm POTS just from that short time. However, that is very strange that they didn't talk you through it or wait until they had your maximum heartrate and minimum bp before bringing you down. Maybe they got what they need to confirm it and didn't want to put you through more of it. If not, maybe get a second opinion??

No sodium in smartwater unfortunately but V8 def helps with that. the electrolytes are really helpful or fluid retention. its the only thing i can drink that i don't have to go to the bathroom 20 min later with.

My neurologist/POTS specialist said that you have to start out really slow. she recommend 5 min a day 3 days a week of a sitting stationary bicycle and only if a patient is feeling up to it. In some cases it is appropriate to "push through" but in others it will just make it worse and tire you out more. As was said above, listen to your body. A simple 5 min walk could be okay one day and then way too much the next. I know you are worried about deconditioning (i am as well) but make sure all your meds are under control and stabilizing your bp and heart rate before worrying too much about the deconditioning. trying to recondition is a hard road and a lot of work, but our systems are so out of whack that trying to exercise like we would when we are healthy isn't going to be the same as when we're POTSy. Have you tried swimming? not like laps, but just kind of bopping around a pool. that counts as exercise even if its very slow and leisurely and for some reason being in water makes POTS patients bodies feel better.

thanks alex! i'm surprised the arm closer to the heart wouldn't be higher.

Ok, sorry to be posting like a fiend today, haven't been here in a few days. So I've recently noticed because I usually take my bp in my right arm that my readings consistently MUCH lower in my left arm than my right. Is there any reasonable explanation for that? The reason I realized this would be if I went to take my bp in my right are and I'd get an error message (it's a CareOne machine, i get a lot of error messages for no reason). I'll go to switch to my other arm. My left arm is consistently 15-20 points lower systolic on my left arm than my right. And this doesn't just happen when I try it on my right arm first, sometimes I j ust won't be paying attention and will take my pressure with my left arm and see a number and think, this can't be right. Anyone else noticed this, or have any idea what in the world would be causing the arm discrepancy?

Can I recommend SmartWater? I know it's mad expensive, but it really has worked miracles for my fluid retention. tap water/regular bottled water runs right through me, and I definitely notice a difference in my blood pressure when I drink more. When I had my TTT done this week my neurologist asked me how much water I thought I was getting a day. She said that they want POTS patients to have 60-80 ounces a day! YIKES. That's a nice goal, but I'm petite, get full easily, and physically have nowhere to put that much! I am constantly drinking from my giant 33 or 50 oz bottle of smartwater all day and i just get full. I also have to eat so there's just nowhere to put 80 oz of water.

I seem to be getting more and more symptoms as the weeks pass. Ah, POTS the gift that keeps on giving. So I have never experienced flushing until very recently and now I am getting it fairly regularly... and I seem to only get it at a very specific time. I only get it after eating dinner, a meal at night. I can eat breakfast or lunch and I won't flush but 10-15 min after eating dinner in the evening I start to flush and overheat and have to stick my head out the window or take a lukewarm shower. Does anyone else get flushing at a specific time or is it spontaneous for most of you?

thanks everyone. I am feeling a little better but i still feel much more worn out than usual even a few days after the test.

Canadiangirl, there is no need to apologize for having questions for the rest of us. We all want to know how other people are handling an illness that is debilitating. I know that it really helps me to have reassurance from others that it is possible to feel better than I feel right now, and its not about comparing situations, it' about finding support from others who know what you are going through when most people don't understand our conditions. I can walk very short distances (to the mailbox and back, for instance) and on a very *very* good day I can go into a pharmacy or a small store for a short amount of time. Other days I have to save all my energy for standing in the shower.

It depends on the day or the time of day. sometimes my heartrate at rest is 90-100 and sometimes its 70 (like right before I'm about to go to sleep). I know it's uncomfortable I'm sorry =( It really is part of POTS. First thing when i wake up in the morning my heart starts racing, and thats before I've even moved from laying flat on my back...the heart just kinda does what it feels like. I wouldn't worry too much at this point. Yes, definitely see your cardiologist but I was told not to be alarmed unless you're noticing 120-130. It helps me to sit with my head between my legs to calm down the tachycardia, even just briefly.

Basically confirmed what my cardiologist said 3 years ago....classic POTS. she's going to try and start me on florinef once i get my leaky mitral valve repaired which hopefully will help me feel loads better. I know it sounds silly but part of me was like "how different can a vertical table be from simply standing straight up?" Very. Very. Different. I feel like I was a rubber band being stretched.

Today I had my first tilt table test. I only had to do it for a few short minutes but it was really REALLY unpleasant, I don't know how any of you have done it for 20+ minutes-- I can't imagine that and i am SO sorry. There's just no other way to say it; It really ******. I only got about 4 hours sleep and was not very well hydrated because we had to drive into the city leaving home at 6 am and I didn't want to be stopping constantly to use the bathroom, so I didn't drink enough before and only had a granola bar to eat before hand. After the test my Dr put me in a wheelchair and told me to go to the cafeteria, eat, drink and do not get up for at least a half an hour. Over an hour later I still felt terrible. Even getting up to use the bathroom after drinking a bunch of gatorade was a struggle. I don't pass out with my POTS but I feel like I was getting some pre-syncope for a long time after the test and had to be moved by wheelchair for the rest of the day. (And then of course I had to go to an appointment with the cardiac surgeon while feeling totally beat down physically and extremely anxious emotionally). My neurologist treating my POTS wants me to try Florinef but I can't go on it until after my surgery (to fix my mitral valve prolapse) because you can't be on it with a leaky valve. I had no idea that the tilt table test made you feel like you've been through the ringer O.o.

Has anyone ever heard of beta blockers causing nerve damage? I only ask because the second week of October my neurologist POTS specialist prescribed propranolol for my POTS and two or three days after starting it I started to get parasthesias in my fingers and toes. After a few more days the tingling had spread up my arms and legs and to my cheeks. My dr cut the dose of the beta blocker in half and said that the tingling was likely due to transient bp and heartrate changes. A week later I was still having the parasthesias and some low blood sugar issues so she took me off the propranolol altogether saying that I don't seem to be tolerating it. Two weeks later the tingling still persisted and my dr said that had it been the beta blocker, it should have stopped after I discontinued the medicine and suggested I have blood work done to check my chemistry panel from electrolyte imbalances. Results came back normal. Asked the doctor gain why I am still tingling. She suggested I asked my prescribing doctor if the lexapro I am not could be causing it. He said no way, I've been on it for 7 years at the lowest possible dose. Since then I am still experiencing tingling sensations in my hands every single day, and at night it gets worse and travels up my arms and legs. It is uncomfortable, disconcerting and frankly, interferes with my ability to fall asleep. Two days ago I was sitting minding my own business when i realized I couldn't feel my right thumb. While I was focusing on not totally freaking out, my index finger went numb, followed by my middle, ring, and pinky fingers all in order, followed by my palm. My whole hand felt like my mouth feels after novocaine. A minute later it went away. My chiropractor said that it sounds like a vascular issue. I emailed my neurologist today about the worsening parasthesia and the numbness episode because something is NOT right, and she wrote back asking if I'd ever had a brain and cervical spine MRI before. What does this mean? What is a cervical spine MRI? I've had one on my brain when I was a teen for migraines but I don't know anything about other types of MRIs. Everything I've researched about parasthesia is leading me to believe it's some kind of peripheral neuropathy but it started when I went on the beta blocker? I'm totally freaking out. Last week I find out I need heart surgery and this week my doctor is talking about MRIs of my brain. Does anyone know anything about parasthesia or nerve damage or anything that would be causing these sensations?

thanks squirrel, the IV had been in for several hours so i think you are right about it not being a hit nerve. None of my doctors has mentioned anything about mast cell issues so I'm not sure whether that could be a possibility. Needless to say, I am very anxious about having surgery when I have so many drug sensitivities.

Sounds like you are experience heart palpitations. Everyone experiences them a little differently but the pausing followed by a hard slow beat sounds like how most of my palpitations feel. I usually describe my intermittent palpitations as feelng like my heart skips a beat and then beats extra hard on the next one, and repeats. If that's what it is, it's not dangerous, and unfortunately it is part of having POTS. People can get palpitations for many reasons: hormones, anxiety, and of course, dysautonomia. As long as your heart is structurally sound and healthy, palpitations are nothing to worry about, they are just really annoying and often very uncomfortable.

I think I was given codeine as a child with cough medicine but I can't remember...that was before my drug sensitivity started. The only problems inserting a needle has been once getting a vein struck but it was just sharp pain up my arm, nothing like a whole body bucking/pain

So I have always been esp sensitive to all medicines (with the weird exception of acetaminophen which just doesn't work on me at all whatsoever)...I have a low BMI and am a petite person so doctors have always assumed that is why i'm so sensitive. I am on the lowest poss dose of klonopin available and take half of the lowest possible dose of lexapro available and I can still physically tell when I've accidentally missed a dose. My question is, does POTS make you even more sensitive to meds? I had a scary experience over the summer in the ER. I was in the Observation Unit overnight for chest pains (this was before I or my doctors realized that my POTS was full blown and since I have a MVP, chest pain is a big concern). At around 1 am, my nurse came in to give me something for the chest pain which had been totally unaffected by both a strong NSAID push and aspirin. The nurse then went to administer 1 mg of morphine into my IV. As she was mid-push into the IV, my arm started burning and then all of a sudden gripping pain shot up the IV arm into my neck, down my other arm, back up to my neck and then sped down the rest of my body all the way to my feet. It was moderate pain by my whole body bucked and everywhere I had pain felt extremely tight. The nurse kind of stood there and looked confused. When my body finally stopped bucking, and I was extremely shaken up, I turned to the nurse and said "What the h e double hockeysticks was that?" The nurse goes "I've never seen a reaction like that before. That's not how morphine works. It doesn't effect you that fast. It hasn't had time to get into your system." Well, what else could it be? It happened while she was infusing the medication and I could feel the sting in my arm as it was being pushed into the IV, which she said was normal. It was in my veins so that means its in my system. Could it be she just had never seen someone THAT sensitive to morphine? Someone suggested she hit nerve but that doesn't explain why the pain would have shot down through my chest, abdomen legs and toes. Now I'm wondering if POTS makes me too sensitive to morphine? She offered me another shot at one point and I was like no, don't come anywhere near me with morphine. Any insights? This is one of the things that frightens me most about impending surgery-- my sensitivity and weird reactions to meds.