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Afpayne

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Everything posted by Afpayne

  1. i just took my HR and BP and its actually lower than my average. my heart rate was 68 (normal is around 74). BP was around 109/55. I realize a lot of people here would kill for my BP but just wait until I stand up. I can only remember the systolic. I'm mostly curious. I'll continue it for a month and see if its doing anything. If it isn't onto the next drug to help keep my plasma levels up.
  2. I just started taking Florinef 48 hours ago and I've noticed a marked increase in the severity of my lightheadedness when I gt up. The reason we put me on it was to combat the 25 or more point drop in systolic pressure when I stood up. Did anyone else have this happen when they started Florinef?
  3. I had gardisil years and years ago and didn't develop POTS due to it. I'm an epidemiologist and IMO the shot is beneficial for patients who qualify. Of course its going to appear that there is a causaility between the gardisil shot and an onseet of POTS because 80% of POTS patients are women and that is mirror in the percentage of people getting the gardisil shot. The vast majority of people recieving the shot are women. It isn't until recently that men have been urged to get the shot. I still have POTS but my pots came after a severe stomach/gi viral infection. I show people a slide every year in one the courses I teach It basically shows that with an increase in organic food consumption there is an increase in autism. Of course there isn't a causation between organic food and autism (or that consuming organic food will result in the development of autism), but this graph sure makes it look like there is right? Something that everyone should keep in mind when doing our own homework on conditions and supposed links between an exposure and disease. Many of us here aren't medical doctors or scientists, just concerned patients and parents trying to find anything that will help us fight/treat/manage a condition that has been very poorly researched. Hopefully this link works: http://boingboing.net/2013/01/01/correlation-between-autism-dia.html The first link posted in questionable to me because the writter is trying to sell you a nutrition plan that will lower your risk of contracting HPV..... we're all smart enough to realize a nutrition plan although will keep you healthy is not likely to be your best bet against contracting HPV. The second link I would also take with a grain of salt. It is from a reputable journal, I will do homework on the scientist, but its a case report. These case reports are very quick and easy ways for doctors to increase their publication numbers if they need to be publishing as part of their professional requirements (not all do). I've written some of these types of reports in my own field and they really are taken with a grain of salt and for good reason. It is an interesting fact that might warrent future research if and only if other physicians are seeing the same trend. The take home message I'm trying to send is that full length (likely 6 pages+ in published format) articles are what we should be looking to in medical journals. Those are peer-reviewed and gone through with a fine tooth comb for methodology, results, etc. evrything you could possibly think of. They gone through the scientific method in an attempt to prove their hypothesis. These 1 page letter to the editor type reports aren't put through that same riggor. These are just casual observations that this physician made and decided to report.
  4. the BP and cardiovascular issues are my worst. we've got the horrible tachycardia and palpitations treated with a hefty beta-blocker. But now i'm left with what seems like reasonable bp when laying down that becomes the wonder that is the BP rollercoaster when I stand up and move about. On excellent days (I HAD 2 in a row this WEEK!!! YAY!!!!!) I can go all day long and my bp, heart rate, and blood pooling issues are in check with just my beta-clocker, compression socks, diet, and more gaterade than most professional athletes drink in a day. Bad days (I've had no truly horrible days this week, again that's an OMG YAY) i'm relagated to the couch or bed if I can't make it to the couch safely. We started me on Florinef yesterday and my lightheadedness has come back in a big way. Hopefully as I continue the florinef that'll go away.
  5. I feel incredibly lucky. I have the best boyfriend in the world. He gets onto me because I do too much around the house, which could be as little as cleaning the kitchen. But he keeps up with the house work and the cooking, and works 60 hours a week. I mowed the lawn a couple weeks ago and treated it (I was having a rockstar day and work in the Turfgrass industry so our lawn is important to me) and I called him after I finished to warn him so he wouldn't be too upset. Needless to say he was, but I did a little bit of cardio which my doctor and therapist liked. My mom has been super supportive too driving down to take me to doctors appointments and help me around the house. Luckily she retired earlier last year before my diagnosis and she really likes coming down to her alma mater. Now if I could get my doctor to set up a more effective treatment plan I would be super happy......
  6. You walk into your doctors office for your monthly appointment and realize you now all the nursing staff and receptionists by first name, the number of kids they have, and what each of them did before they started nursing as their profession...... You get excited about eating processed food again (HOT POCKETS) because the salt content is astronomically high and maybe just maybe you won't have to choke down a salt tablet or 8.
  7. I would almost say be happy to not meet the criteria, im also kind of a negative nancy today because today is a horrid day. If your normal heart rate is low 117 could be highly elevated. Mine is around 74 and I hoped to 160 during mine. But the criteria for POTS isn't a heart rate over 120. That's just a hard line cut off. 30bpm is the major cut off. But like others said you may need a second tilt table especially if you were nervous before hand since that can raise your baseline heart rate. I'm sure you'll be fine and your doctor has your best interests at heart.
  8. My head is absolutely killing me today. Doctors appointment check up! Outcome: I still have POTSand got script refills!

  9. My doctor is apprehensive about mirodrine due to some of the long term side effects. We haven't done anything sbout my bp weirdness. But he doesn't seem as concerned about my light headed episodes as I am since my bp with my massive salt intake and fluid intake keeps me around 105-110/ 50-65. But we're still trying to get my beta blocker figured out and he and I both agree one drug at a time so we can see what affect each is having on my symptoms. There are also numerous electrolyte drink recipes on pinterest (who doesn't have Pinterest!) most start with coconut water. Before my pots I did triathlons for fun and my drink mix included coconut water. Coconut water is your friend. There are freeze dried coconut powder concentrate on Amazon too.
  10. I'm on medical leave as well! Honestly smart decision. I should've finished my phd but simply couldn't even look at a computer screen without getting severely dizzy or sit up at my desk to write my dissertation. The brain fog resulted in me typing some the worst but funniest scientific writing mankind has ever seen. I'm at the point finally where I can do a little work but in still severely limited. If I challenge my brain too much I get the brain fog again. You'll get your undergrad finished be persistent in your treatment. If suggest challenging yourself to do something everyday. I knit and use Rosetta stone about 30 mins a day. It seems to help keep the brain fog at bay a little more each day.
  11. When I was 18 I didn't have a period for 9 months. Went to the doctor and we got me started on birth control and I tick like a tock now at 29. Sometimes we just need an extra little jolt of estrogen to get our cycles normalized I guess. But I use the Nuva Ring right now and have POTS. LOVE the ring. Seriously set it and forget it and I forget medication frequently. But I wouldn't be too worried about blood clots as long as your doctor is ok with it. Just for the love of your health don't smoke. That does more to create blood clots. I would make sure you familiar with the symptoms of blood clots. But if your blood pressure is fine I wouldn't be too worried about it. The pooling I experience with my pots isn't persistent enough to be worrisome for a significant increase in pots (words from my doctor not from me).
  12. I got diagnosed with POTS in December of 2014 following a non descript stomach viral infection that resulted in a 15% body weight loss due to severe dehydration a few months earlier. My veins had all collapsed and they had a hard time getting an iv started. I got sent to a cardiologist who luckily was young. But prior to my appointment I did my homework and insisted on a tilt table test. I got LUCKY and I know it. But here I am 6 months after my diagnosis and I've seen specialist after specialist and were just now getting a neurologist in on the treatment. The only thing we've been able to do is get the tachycardia somewhat under control with a beta blocker. And that's it. I have good days and bad days. I still haven't figured out where my max is for activity, I miss biking and swimming. My phd is on hold because I'm at 80% bad days right now. The adjective that describes life is frustrating. A good day of housework and Steak dinners although amazing put me in bed the next two days. I hate napping during the day but find myself napping all the time now. Food? Ha I'm rarely hungry and have lost enough weight my doctor is getting alarmed when I come in and have lost another 4 or 5 pounds. This isn't close to my idea of fun. Luckily I have a really good friend from grad school who had had pots since she was a young teenager and had s viral component as well. I'm also starting to work with a physician I'm familiar with at our local medical school who is working on finding a possible autoimmune aspect to pots. Oh well. All for the betterment of science. Now back to watching frozen for the trillion time! LET IT GOOOOO!
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