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Lemons2lemonade

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Everything posted by Lemons2lemonade

  1. Maiysa, i met issie when i went down to arizona. She is really nice and friendly, and she has some great advice about navigating you through the who Dr. G encounter!
  2. Maiysa, issie, don't you just love Janie, Dr. G's nurse. I swear that poor woman. Every time i talk to her something ridiculous is going on!
  3. Naomi- i have not changed my medications for the past 6 months and am experiencing improvement with the exercise. I did not start feeling better until i started exercising.
  4. Abby, I tried vigorous activity and it did not work for me at first, I had similar symptoms. I have learned that this happens when i overdo it. When I saw Dr. Goodman, he recommended that I do exercise that emphasizes frequency over intensity. We had a specific conversation about this. He suggested i start with 5-10 minutes and work up from there. I said i could walk for 20 minutes and he asked me if i could do it every day---my answer was no, and he smirked. I would guess that the starting point is something that is different for everyone and is something you are going to have to recognize and learn for yourself (what activity upright/walking can you do every day 6 days a week,that is progressive and slightly challenging?) So for me, it was walking for 10 minutes each day. Keep in mind I am also only 26, and found this to be challenging. I used to be a long distance runner--this was harder and more taxing, it also required discipline. EVERY DAY NO EXCEPTIONS. I have also noticed that each day i "take off" i experience what i consider to be accelerated atrophy. In other words, 2 days off and i'm back to where i started, so its important for me to keep going. The exercise had to be easy enough that it didn't knock me down for a couple of days to recover and challenging enough that it felt like I was performing some type of exercise. Dr. G told me the one thing potsies do wrong is jump into too much activity too quickly. This causes us to get overly fatigued and inhibits a conditioning exercise routine and improvement. After all, we want to be feeling better every day, not just one day at a time. This was hard for me. Like i said, I used to be a long distance runner and was expecting my body to be able to improve physically and in the way that it once did and this is not the case. I try to think of myself as a stroke vicitm. Its not like they just up and start talking again. They have to work on it every day, slowly, diligently if they want to see improvement. To anyone doing an exercise routine this is what worked for me. 1. Exercise that is mild enough that it can be done 6 days a week, NO EXCEPTIONS. Something might not get you on day one, but it will on day 3! Take it Easy! 2. Exercise that is challenging enough to be slightly difficult--to me difficult means shortness of breath, tachy etc. 3. I actually have to carefully watch my intensity, i always try to overdo it--this was perhaps the most difficult thing to learn and control. (i think we learn this by trying to get everything done on our "good" days) 4. Slowly progressing exercise. Adding maybe 2-3 minutes each week to the walking routine. I can not overemphasize the importance of slow improvement. Going to fast will overdo it--its one step forward two steps back
  5. I agree with you jangle and am experiencing the same results. The one thing that i noticed is that getting to a conditioned state took a lot longer than before pots and required many more baby steps when compared to normal exercise progression.
  6. So, I ran out of florinef yesterday morning and didn't remember until I went to get my nightly dose last night. It was so late and I had to work today so I just decided I would go in the morning. Holy Moly did I withdraw! I urinated 3 times(large voids) in the middle of the night and then 3 more times this morning all within 20 minutes. I must have lost 2 gallons- not exaggerating. When I woke up, I could feel the adrenaline circulating like I hadn't felt in along time, I also had the cold sweats and felt really nauseous. It was like I had the flu/fever and drank 10 cups of coffee. I was really concerned that this was going to carry on after I went to pick up the flornief and into the workday. And it was a bad day but is didnt pass out. Sure thought I was going to a couple of times though!
  7. I love florinef, but it didn't start working for me until I took .2 mg. It also worked best with supplemented salt. The only bummer is that it bloated me up. But its better than feeling like I am going to.die every second.
  8. On my way back from Az I got the seat up by the stewardess(1st row) so I got to put my legs up it was really helpful, we flew southwest.
  9. Midodrine dropped my pulse into the 30's and gave me excruciating chest pain.
  10. This is probably pretty radical but I just lost a family member last week. It got me to thinking that death is designed to prevent us from living through an eternity in pain ( how miserable would that be?!) But at the same time, I feel like even though pots isn't fatal, I'm slowly being tortured with no end in sight.
  11. Mine was 60 /25 and I was still conscious, but only got that low when they administered the exercise simulating medication. I also started dry heaving. I start feeling bad though around the mid 80's over mid forties mark.
  12. Good for you jangle! Keep it up, I know it isn't easy!
  13. When my pots first started my attacks were brought on before meal times.
  14. I t seems like recently my posts have been happening during my weak points but I also want to emphasize that there are strong points and improvement as well. Compared to six months ago my activity has quadrupled if not more. However one important thing to note is that I don't feel any better. I still have pots and still get constant presyncope/ panic feelings every day. I would say that my activity has improved but my pots has not. I have been adding increasing activity to my regimen since I saw Dr. Goodman in February. He convinced me thst I wasn't going to just drop dead from this, and that gave me the courage to keep on going. And here I am, still alive! I played tennis for the first time in a long time last week and my vision was so blurry, I couldn't see the person on the other side of the court, but I kept playing. (I never knew how little hand eye coordination relied on vision!) I went again 4 days later and there was less bluriness in vision. Today I had my first day at a new job as a waitress. Why on earth would someone with pots even try and be a waitress?! Because I believe that my body needs to relearn how to stand, and this is my crash course(if I fail, I fail. But I am at least going to fail trying). But today I stood for 6 hours, yesterday for an hour and a half. And, I slept poorly last night. But I didn't collapse and here I am just fine. So ill keep everyone posted. I am just really proud of myself for making it through the day. No one in my life knows how hard I am trying but I feel like everyone here does.
  15. I have noticed that when my pots is acting up, my hands throb. It is so consistent that I don't have to worry about my hr, I can tell by the rate of throbbing, spot on every time.
  16. I don't know why I can't get over this, but I hate being left alone during the day. I am mostly stuck in the house these days unless I want to hike 3 blocks to the bus or be brave and ride my bike, but lets be honest, im not going anywhere far on my bike.. so, I just try to keep myself busy while I'm home alone and I try not to think about it. It is so ridiculous though, that I am so afraid of being alone. I feel like I need someone with me in case something happens and I can't help myself. Not fainting as much as something life threatening. I try to stay calm but in the back of my mind I am panicked. I live with my boyfriend who has been a godsend through all of this, and there are days where he works doubles and is gone all day. All of.my friends work during the day too. So, when I start to feel bad, I just lay on the couch with the phone in my hand, but its not like I am ever going to call 911 on it. Instead, I just lay there becoming more and more symptomatic until I finally get to the point where I accept my death and the lack of control I have over my life, until I fall asleep. It's terrible.
  17. yup me too, normal metanephrines, no mast cell, happens when my pots is worst.
  18. I was reading a post by Valentijn and it got me to thinking. She said that she saw her fiance outside the window, which should have scared her, but it didn't and then later she experienced what sounded like an adrenaline/potsy reaction. I have experienced something similar and was wondering if anyone else had. I was waiting tables post pots diagnosis (you can imagine how miserable i felt), and this woman was really rude to me. I had been waiting tables for a long time, and had previously been exposed to this type of behavior, but this lady really ticked me off. I was fine for about 15 minutes, and then BAM the whole shebang and fell to the floor. This happened to me another time, when i had a table act rude, 15 minutes, then the whole pots thing started. When my pots first began, i was just coming off of a busy rush at work (and a wicked hangover from the night before). I was able to do the rush just fine, but after it was over, symptoms started. So, what i have realized is that sometimes my stressful situations cause a pots attack 10-15 minutes following exposure. Wondering if anyone else has a delayed adrenaline response as well?
  19. Sorry you are having a rough time This sounds A lot like my first pots attack. My blood pressure was high and my pulse was high. Maybe you have pots, maybe you don't. I have read that if normal people get dehydrated then they can have feelings like pots. I am wondering if maybe you were dehydrated and this set the whole thing off? I do have pots, and drinking water always makes me feel better. You should ask your doc if increasing water is right for you?
  20. One thing to remember is that the body atrophies without exercise and reduces cardiovascular capacity. So, not exercising is not going to make exercising any easier. If you take any healthy person and lay them down in bed for a week, they are going to have lots of issues. My physiology professor did an experiment like this and they had to physically rehab the test subjects so they could leave. I've decided that I am going to push until I faint, and I haven't fainted yet, instead my symptoms have gotten much better and I am becoming more active and strong. Still though, I had to work myself into it. You won't catch me walking around for 6 hrs! One to two is a good feat I think. The one concern I have for supportive devices is the overall effect in the long run. I'm sure sitting in a wheelchair would make me feel better now, but it is not going to do anything positive towards making my body more normally physically functional. If anything, I feel like sitting all the time makes it worse. Maybe you could bring the wheelchair but only use it when you get tired instead of solely relying on it and try to use it less and less.
  21. this is so crazy. I swear that the fruit punch gatorade makes me feel worse than the lemon lime. And in fact, since i have stopped drinking gatorade, i have been feeling BETTER. Weird.
  22. I was bit by a dog 6 months before pots onset
  23. You all are so awesome thanks to everyone for the supportive words. I am doing much better today and am learning how to cope with a new type of stress and frustration with pots. It is very new to me and is getting challenging at times. I guess its a good sign that I am getting some feistiness back. It means I am getting more energy. Still though, i have a big mess to clean up and it is going to be challenging.
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