ironsc

She said I should only sit/lay most of the time, except that she wants me to take 5 minute walks to keep the muscle tone in my legs. I'm supposed to do this a couple times a day. I usually just walk a mile every day, when the sun is hiding behind the mountains. I used to bike ride up to 10 miles a day, five times a week in 2007, until I ended up collapsing on the ground and my left leg was numb and immobile for a couple hours. Also had pain shoot up my left side from my leg, up into my left arm and I was completely breathless - felt like I was going to suffocate. But I was too stubborn to go to the hospital, and just toughed it out and went to class. After that, I became more and more exercise intolerant, until February... when I couldn't exercise at all. So, my legs are very well-off, and she mentioned she just wants to make certain I don't atrophy. She said nothing but short walks, no sugar, no caffine, no hot showers, no sun, no standing up for long periods, lots of water and salt, five small meals a day, and a lot of other stuff I forgot. And here I am, walking a mile a day, baking and eatting home-made cakes and drinking home-made tea. She's going to smack me next week. But, honestly, I feel fine walking that much. Sure, I'm tired and worn out after, but it helps. As long as I'm not building muscle (increasing potential pooling places), and just toning what I have, then it's worth it. Plus, the beta blockers are making me gain weight faster than usual, and I'd like to stay where I am - I'm comfortable at 6'2" and 180lbs. Best wishes, Cam

Apparently, yes. My BP has dropped by as much as 30/15, but sometimes it goes up by as much as 30/15. The only constant is my HR - it always goes up by about 70-80pts. My BP is all over the place. One day, it'll be 160/110, the next... 100/65. Lately, on the beta blockers, it's been stable at 120/80, which is beautiful. I never understood why I have all the symptoms of POTS' blood pooling, but never the consistant drop in BP. One of my most complained about symptom while walking around is swelling of hands/feet to the point where they feel like splitting open, which most definitely is the pooling, but still... BP is usually stable, or only lowers by a small amount (like 20/10). It's something for me to ask my ANS Neuro next week. *makes sticky note* Hugs, Cam

I was disappointed they didn't flop me up and down like in "House, M.D." series, when they had a TTT scene. That looked like fun!

I also second what was said - the increase in heart rate does not have to happen instantaneously. It can happen anytime within 15 minutes - however long it takes for the body to overreact to blood starting to pool in the extremities. Make certain she's also completely still - no leg twitching or moving around. This might help the symptom pronounce sooner or greater. Has the doctor checked for Anemia, Asthma (even exercise-induced), and possibly Migraines (exercise-triggered, or Abdominal)?

jbrian00, As far as I'm aware, speech symptoms associated with POTS is usually "difficulty finding the right words", which is usually derived from the brainfog attribute. But this is by no means a fact, merely an opinion. And even then, a layman's opinion.

Jen, The only tests the Neuro had me do, beyond what is required for POTS, was mostly for pre-existing condition things. Such as Holter Monitor, Nuclear Treadmill, Carotid/Heart Ultrasound. Also had me get a MRI (w/o contrast) of the head, mostly for "peace of mind", but also to check for Chiari Malformation and because of my Paresthesia in the hands/feet. But, honestly, it was more for "peace of mind" for us both. Came out perfectly normal - plenty of grey matter between the ears, rather than air, as many suggested. But, if I understand it, any non-invasive or benign proceedure can be done if you ask for it. However, if the doctor can't justify it to the insurance, you'll likely have to pay for it. It's not the doctor's fault - the insurance companies are rather strict about justification. If you have concerns with your Neurologist, maybe schedule an appointment with them to just talk and discuss where things are and where they are going. I did this very thing - it was an "office consult". I bought materials and ideas to discuss, and we just sat and casually discussed where things are, and we discussed where her ideas were going. I was frustrated she wasn't ordering more tests, but I came to her with questions such as, "What about Chiari Malformation? Does it fit with what you've seen?" We spent an hour just casually discussing (thinking out loud, too) and narrowing down the next project to persue. Best wishes, Cam

Heylo, I just wanted to introduce myself - I didn't see a specific forum for introductions, so I put it here. I?ve been reading these forums since March 2008, when trying to keep up with what my doctors were thinking and discussing. Now that I?m mostly over a short fatigue/mindfog flare-up that lasted a couple months, I was able to remember these forums and join. My name is Cameron (guy, 27), and I live in the beautiful foothills of Lakewood, Colorado, snuggled right next to the Rocky Mountains. I was diagnosed with POTS this May after having numerous severe cardiac and neurological symptoms in February (only made worse by a sudden Influenza Type A infection during the diagnosis process) that caused me to put everything on halt. I ended up seeing five doctors countless times from March to May to get a diagnosis (PCP -> Neuro -> Cardio -> Cardio EP -> (first) Neuro -> ANS Neuro). It certainly was a very interesting experience, and I?m thankful there was a person locally that has a full Autonomic Testing Lab and specializes in the Autonomic Nervous System. At one point in my progression through the ordeal, the cardiologist wanted to have me immediately hospitalized and have a pacemaker installed after looking at my Holter monitor. He thought I had two Ventricular Tachycardia?s @201bpm, but the Cardio EP said they were Atrial Tachycardia?s with Aberrant Conduction. The Neurologist wanted me to also be hospitalized because my legs/feet were literally ice cold (and purple), my pupils were overtly uneven, and my blood pressure changed wildly quite frequently, and I was itching all over with pain. In the end, I was introduced to Dr. Poscine, a neurologist that recently moved her practice to Denver (Luthern) and had a full Autonomic Testing Lab built on the Luthern medical campus. One of only sixty in the world, I believe. Since Mayo/Vanderbilt declined me, finding her was a lifesaver. And she was local! On my first visit to her, she took my HR while lying down (ye olde wrist/watch method) which was 75. She then told me to stand when I was ready, and so I did. She still had her fingers on my wrist when I stood, and my HR immediately sky rocketed, as usual. I could see her try to count and keep time, but after about 10 seconds, she let go of my wrist and said, ?Ok, your heart is going nuts. Sit down, you definitely have POTS. I?ll order a Tilt Table test just to be complete, but you definitely have it.? During the Tilt Table test, I had a HR of 70-75 lying down. When Dr. Poscine arrived to oversee the test, they tilted me upwards. My HR immediately fluctuated between 140-160 while upright and stayed that way for the five minutes I was up, while I casually called out my symptoms (lightheaded, partial blindness, pain in back of lower leg moving towards knee, then towards thigh, pain in back). She then immediately stopped the test when I said I was having pain in my back and in the back of my upper leg. I mentioned to her that this was worst case, because I was unable to move while on the table. End result is that she officially told me I had POTS, and that she wanted to start me on a dosage of about 240mg to 300mg of Propranolol, a beta blocker, (titrating it upwards to that amount at about 10mg/week). She?ll probably want me to start other things, once that gets sorted out and done. Right now, on 70mg of the beta blocker, I?m at 65 bpm sitting/laying, and 120-150bpm standing. And my BP is usually 110-120/70-80, rather than my old numbers of about 130-140/90-100. Unfortunately, I experience more presyncopial episodes when standing on the beta blockers, but she said she doesn?t care what happens when I?m standing (since I?m not supposed to be, except to take 5 minute walk for exercise a day), so long as I?m not having that happen when sitting/laying. But I?m not one to stay sedentary, anyway. I just have to avoid the heat/sun, or she?ll yell my ear off. At least that beta blocker is keeping my migraines in check. I think the oddest thing about this whole ordeal is that my doctor said, while giving me the diagnosis, that this was a disability. I never really felt that way. Granted, I tend to need a seat quite often, but I always feel guilty whenever they mention that fact. I just don?t ?feel? disabled? just sleepy, heh. I suppose that?s just my stubbornness. I?ve been apparently living with this for 14 years (had many negative experiences with oddball doctors until now) and she thinks it?s the reason I have Organic/Acute Heart Disease ? POTS left untreated at this severity (cardiac-wise), it permanently damaged my heart. But I think the worst of it is that every lady I?ve tried to date takes one look at my cane, and ends up disappearing off the face of the earth or ends the dating thing. I try not to be cynical about it, but it really does bug me. However, I saw a thread here about many other?s success, so there?s hope. I didn?t want to taint that thread with my negative experiences, however. It?s hard to get into the dating scene when you don?t have anyone local to introduce you to others. I?m still going through a lot of testing, but at least they?ve started to find answers. They still suspect Chronic Fatigue Syndrome, Fibromyalgia, some kind of GI issue beyond POTS (GERD/IBS), and some kind of connective tissue disorder (Marfan?s, EDS type III, or Hypermobility Syndrome). Thanks for the help back in March with your wonderfully informed posts and discussions, too. You really helped give me hope and ideas to share with my doctors at that time, and I hope I can contribute for others, as many here did for me. Thanks, Cam p.s. Buggerit to my "no-sugar" diet. I won't give up cupcakes and cookies, durn it!