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Potsies

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  1. I was thinking maybe stretchy veins, as I do have hypermobile joints and soft stretchy skin, as seen in EDS, but I don't have any of the joint pains or dislocations associated with it, and my POTS symptoms came about quite suddenly just last year. Are you on any medications? What do you fins helps you most with your symptoms?
  2. I haven't had a TTT done yet, but am on the waiting list for one (the waiting list is very long as there's only one in my province, I'm from Canada). I have tried increasing salt and water and it only helps a tiny bit, but I have chronic gastritis which salt irritates. I do have medical grade 30-40 hmmg thigh high stockings and I don't really notice any difference with them. My vitamin D level is perfect, on the high-normal side and I take sublingual methyl B12 supplements.
  3. I'm 23 and currently I'm just on Vyvanse for the brain fog, but I've been on it before the pots even started so I don't think it is the medication. I was prescribed Midodrine, but got constant headaches and blurry vision with a sense of detachment, so I am no longer taking it.
  4. I was diagnosed with POTS, and I guess I have a mild form of it as I don't get low blood pressure or pass out, but my heart rate gets very high when standing. My average heart rate just from standing up is 150-160, with activity this goes into the 170-180s. Sitting down my heart rate is between 70-90. What would be the cause of my heart rate going so high without me having severe symptoms? My only major symptom that I complain about the most is fatigue. I am so exhausted, constantly. I wake up feeling as if I never slept. I do have occasional numbness in my extremities and cold and clammy feet, but the fatigue is what bothers me the most. I can walk almost an hour before feeling faint. I went to the doctor yesterday and she took my heart rate and was shocked that it was 157 just from standing, with normal blood pressure and that I didn't feel like I was gonna pass out. I read about a lot of people fainting and being quite more disabled than me with heart rates of 110-120, so how can I have an average heart rate of 150 but still have only "mild" symptoms? I have been unable to find a single doctor who knows anything about POTS or Dysautonomia in general. Could it be a B12 deficiency? My B12 level is low-normal at 300 I also have a high ANA of 1:320 homogenous pattern, but tested negative for ENA How can you tell what kind of POTS you have without laboratory tests, as no doctors are willing to perform sitting to standing catecholamine levels....
  5. The first day I took it I didn't feel any different. Then the 2nd day onwards I started feeling awful. I was told not to lie down on it and I haven't. Every time I've taken it I've been mostly on my feet, which has been very difficult as it makes me so out of breath and lightheaded! Its very strange. I can't find any information on Midodrine causing these kinds of side effects, but I know its the Midodrine cause I didn't take it for a day and my heart rate was actually lower off it. Midodrine has been causing a heart rate of 140 when standing, when normally mine is between 120-130.
  6. Hey every one! Last week I finally saw a doctor (cardiologist) who knew a little about POTS! He admitted that he doesn't know a lot and that I probably know more about the condition than him, but he was very kind and actually listened to me and said he would do everything he can to help me, including personally calling the POTS specialist himself to see if he can move me up the waiting list. In the mean time he prescribed me 2.5 mg of Midodrine, 3 times a day. I have normal blood pressure, usually around 117/80, lowest its ever been is 105/70. On Midodrine the systolic pretty much stays the same but the diastolic increases to around 90. Even though I have normal blood pressure, I still get very dizzy and feel faint when standing. The Midodrine made me less dizzy (aka the world no longer spins), but that's about it in terms of positive effects. I've been taking it as prescribed, but noticed some very concerning side effects, not including the common scalp tingling and goosebumps. While on Midodrine my heart rate has actually been a bit higher, and I notice it more than before the medication. I can feel my heart pounding against my chest, and I am more out of breath. My vision also gets very blurry and I feel a sense of dissociation, like I'm disconnected from my environment. I get shaky, more lightheaded, and my veins in my legs and hands become HUGE. They become really blue and prominent. Never in my life have my veins been that visible, it's quite scary looking! Even my boyfriend and roommates pointed it out. When the Midodrine wears off, all these symptoms go away. My question is, Midodrine is a vasoconstrictor, yet it makes my veins really large and blue? Isn't large, visible veins a sign of dilation? Why would Midodrine cause this? Does my reaction towards Midodrine hint at what type of POTS I might have?
  7. The internalist did mention that I might have a mild form of Raynaud's, but its only really my nails that go really purple or white. My fingers and toes go more red or somewhat white. I do get tremors and occasional chest pain. I also sometimes feel like its hard to breathe, even when sitting. I have to take a really deep breath and my chest often feels heavy. How did you go about getting a diagnosis of Prinz-Metal angina? I had an electrocardiogram while laying down and it was normal. Would this have shown angina if I were to have it?
  8. Thats very interesting! I will look more into that! Thats whats so hard about not getting doctor’s advice. I’m scared to try certain things because everyone is different and what if it does more harm than good? But when I do ask for doctor’s asvice they say “No! No one should increase their salt intake. Thats always a bad idea!” Which we know in the case of most POTs patients isn’t true.
  9. I was going to file a complaint against him but later learned that his daughter had passed away just a week before, which could explain his behaviour, so I decided to just drop the complaint but find another dr! My feet are always cold and white/purpleish , even when lying down. This happens despite the temperature, they’re cold even in the hot summer. When standing up they turn more red. With hyperadrenic pots are there any physical differences in symptoms compared to common pots? Or is the difference only noticable in higher blood pressure upon standing and norepinephrine levels?
  10. I have looked at the list of physicians and I have already been referred to the only one in my proximity. I think I'm just going to have to wait until I see him. That's good to know about how long it will take to increase blood volume. I have only really been consistent with it for a couple of days, so I will keep going. I have read about ivabradine and it seems like the best option in my scenario. I'm thinking of going to a doctor and instead of telling them I have POTS and being immedietely dismissed, to just explain my symptoms and ask about specific medications and see what they say. It's insane how rude and dismissive doctors can be when they come across an illness they don't know about. My most recent doctor told me, "No I won't refer you to a cardiologist because you seem completely healthy." I then asked him to take my pulse while standing and he refused saying he didn't want to. I told him how much I am suffering and he said, "I don't care. You're not dying so its not really my problem." Needless to say I will not be seeing him again I'm glad to hear your daughter has found things that work for her and is slowly improving! Can I ask what the horse chestnut tablets are used for? What symptom have they helped the most with?
  11. Caffeine pills do help with the fatigue and brain fog but my HR is dangerously high with them so I only take the when really needed. Coffee for some reason completely knocks me out. I get nauseous, dizzy and get so tired I can barely keep my eyes open after a cup of coffee. The keto diet seems interesting. As of now I haven't altered my diet except for adding more salt. I was thinking about trying to go gluten free since I heard that helps, but it sounds so hard. Every food I love has gluten haha!
  12. Hi everyone, I am 23 and was recently diagnosed with POTS by an internal medicine specialist. However, she has been no help other than making the diagnosis. She basically said, "You have POTS. Doctors don't know what causes it and theres no cure or anything you can really do, sorry!" Then shooed me out the door. In another visit I had finally convinced her to refer me to a POTS specialist. I live in Canada and there are only 2 POTS specialists in the entire country, so I've been told the waiting list is over a year long and I can't afford to travel. I have seen cardiologists, over 10 GPs, GI specialists, and have even been to the ER. Every single doctor has either never even heard of POTS or don't believe in it and instead diagnose me with anxiety, or they say I don't have POTS because I don't faint every time I stand up. Which is ridiculous, as not everyone with POTS faint, let alone every single time they stand. In the meantime I've been researching and trying to learn as much as I can about POTS on my own. Here are my major POTS symptoms: - Heart rate between 130-160 upon standing. Remains high until I sit down - Relatively normal blood pressure (around 110/70) - What I assume is blood pooling (my legs and especially my feet are always cold, numb and red/purplish) - My feet and hands tingle and fall asleep really easily - GI issues which I've had on and off since I was a toddler (abdominal pain usually in the evenings, alternate between diarrhea and constipation, feeling like my bowels are full even after I go) - Constant fatigue. I am so tired, all the time. This is probably my worst symptom. I am always mentally and physically exhausted no matter how much sleep I get - Brain fog - I feel lightheaded when standing and start to feel really faint after about 30-40 minutes of walking. - Suspected EDS as I have hypermobile joints and occasional joint pain I have fainted 3 times in the last couple of years, which doctors said was due to panic attacks even though I explained I didn't feel anxious at the time. I now believe this was due to POTS and not anxiety. I have tried increasing my salt and water intake by drinking gatorade or mixing some salt in my water and drinking that throughout the day. I have also been having more soup. This does lower my heart rate but hasn't helped me feel physically better. I'm still just as weak and tired despite the lower heart rate. Also, when I increase my salt I pee like crazy!! I'm peeing every 10 minutes. I thought salt was supposed to help prevent that? I am also making an appointment with my GP to get a prescription for compression socks. In the meantime I've gotten a pair off Amazon to see if they work. They're not as strong compression as medical grade ones but I find they do help me stand for a bit longer. I have a dog which I use as my motivation to exercise, as I read thats really beneficial for POTS patients. I take her for about 2, 15-20 minute walks a day. Despite the increased salt and water, compression socks, and the exercise, I still feel exactly the same physically. I had all my blood work done and every thing came back normal. Do you guys have any other tips when it comes to managing POTS symptoms, especially the brain fog and fatigue? Why isn't the increased salt/water working? I feel so lost and helpless. I can't find a doctor who knows anything about this illness so I have manage everything on my own until I can see the specialist. Any tips, tricks or knowledge about POTS would be so appreciated! Thank you
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