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Everything posted by Iamcertain

  1. I'v found with florinef you have to introcuce it slowly, start with 1/4 pill or .025 mg and increase cautiously until at the intended dose. I'm on .2 mg and get severe headaches from it, I now take a headache preventative and have very few headaches. I've never had the side effects you described though.
  2. I take a small dose of atenolol, 12.5 mg twice a day. It helps but I still have severe tachycardia when exercising. We talked about increasing the dosage but don't want to reduce BP too much, it's usually 80/55 or so. I haven't noticed any breathing issues on it at all, but sometimes do get chest pain.
  3. My heart monitor doesn't work in the water, I check my pulse manually when swimming. After a few minutes it calmed down after 5 minutes or so to 180 and then reduced from there. My resting heart rate is usually in the 80's but any exertion at all makes it spike. I'll ask my doctor about it next time I see her but generally I feel okay after so I don't worry about it. I have passed out when my heart rate is lower like 140 after standing for a long time. When I'm in the pool I haven't had any problems besides the tachycardia.
  4. I used to get headaches and migraines daily that lasted hours but I rarely took ibprophen for them. I recommend keeping a log of when you got a headache, how long it lasted and severity. Show this to your doctor and they can determine whether or not you would be a good candidate for a preventative or something to treat a headache when it comes, or neither. I was started on amytriptyline 10mg and recently was increased to 20 mg, which has virtually eliminated my headaches. This is a small dose (I think). I am also taking magnesium and B2 supplements which are supposed to help with headaches, I'm not sure if they do or not.
  5. After swimming about 300m the other day, I noticed my heart rate at about 210. I felt okay, just winded and I could feel palpatations but I didn't feel like I was going to faint. I'm on atenolol to reduce my heart rate. Anyone else get this high after exercising?
  6. I take thermotabs. 5 or 6 a day, we bought them i think at drugs.com and like 8 boxes that time so we wouldn't have to keep buying them and we got discounted for either the amt or price, i can't remember. They are much cheaper to buy online than at the pharmacy. They were making me nauseous at first but they don't anymore, since i learned to take them with food, even a small snack works.
  7. I have the Timex Personal Trainer Heart Rate Monitor Watch - Gray T5K541 T5K541F5It works fine for my purposes. It was 50 dollars I think and you have to wear the chest strap. I don't think it is designed to wear all the time but I wear mine all day most days. You can set it to alarm when your heart rate is too high. The strap barely fits me, it is as tight as it can go because they only have one size. I weigh 115 lbs. If that gives you an idea of how it would fit. The strap broke once but I was able to sew it back together with no problem. The actual watch part is a little bulky but it was the smallest I could find in my price range. I have found that the more extra settings and things like that the watch has the bigger the watch face. The timex tells your current heart rate and then to see the max and average heart rate you have to exit the heart monitor part in order to view it. Also, you can't look at the time unless you are not using the heart rate monitor settings. Which is a little anoying to me.
  8. My dysautonomia specialist recomended 400 mg magnesium supplement and/or 400mg vitamin B2 for trying to reduce headache frequency. I'm not sure if it helps or not becuase I haven't gotten to the store yet but it's a suggestion. I'll let you know if it helps. It can't hurt because the excess will be excreted. There's also medications to try to prevent headaches but were going to try this first to see how it works. I have POTS with headaches being one of my daily symptoms hopefully this will work if not for me than for someone else.
  9. I drink G2 for both the salt and extra calories ( sometimes I'm too nauseaus to eat but by drinking gatorade the sugar it has in it doesn't make me feel horrible from not eating). I also drink plain water and any juice. I take salt tablets to get salt. Sometimes I put extra salt in things like hot chocolate, smoothies, or flavored milk because you can't really taste it and it feels like a more natural way to get salt than taking salt pills. I don't like putting salt on my foods.
  10. Yes, bebe I was diagnosed with POTS and Neurocardiogenic syncope in November by Dr. Svetlana Blitshteyn after being sick for about a year. I am limited in the activities I can do but I hope others learning about POTS will help people being diagnosed faster and treated faster. We had to search out a doctor familiar with POTS once we figured out that what might be making me sick. I've lost almost all of my summer and sophmore year of high school from being too sick to participate in typical teen activities. For one of my visuals, I am drawing a outline of the body on one half i'm going to color the blood flow of a POTS patient and the other half is going to be blood flow of an average person. I was thinking about making a mini tilt table out of wood (which shouldn't be too hard) to show what it looks like as another visual. Still not sure though I had never been on dynakids before but it is a really good site i'm going to use. Thank you for the advice katybug, it is much easier for me to stand up when I am moving around. But things like standing in line or standing in lab class for even 15 minutes is difficult. I will try to remember to move around a little, keep the blood flowing.
  11. Thank you, so much. I'm presenting this as a 4h project next week. I know alot about POTS but knowledge can't be used as a reference. Keep the ideas coming
  12. I'm new to this forum. So i'm doing an illustrated talk on POTS but I need help coming up with a really good tiltle and websites for more information. It's hard to find good reliable websites to use. Any other ideas to incorporate into my project would be helpful. Also this project would require me to stand for 20 minutes or so when i'm presenting it any ideas on how to prevent my symptoms from overwhelming me while I present wouldl be helpful.
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