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About avais1

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    Asheville, NC

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  1. Good luck tomorrow. When you fly over North Carolina (about 1/2 way into your flight) wave down to me! Remember, just breathe. I know it will feel weird, and you may panic a bit from the strange sensations (usually during take off, turns, and landings), but you will be okay.
  2. Anytime - so glad I could help. For me, I always sit on the wing. I don't like bulkhead seats because I have to put all of my stuff in the overhead bins (you can't put it in front of you, there is just a wall there). When I fly, since I am already doing my best to "maintain" the last thing I want to do is 1)stand up 2)lift my arms over my head - to get my stuff out of the overhead compartment. I also am very sensitive to motion, and the wing has the least amount of movement in the plane (think of a see-saw, the middle moves the least), so I personally like the wing window seat. But - you have to find what works for you. I rarely get to the point where I have to lay down asap (I do get that in the airport, but not on the plane). Good luck to you - and let me know how you are doing!
  3. Hi Cathy - I would arrange for oxygen pre-flight. All planes are pressurized to 6,000 feet above sea level, so there is definitely less oxygen for her (it's like visiting Denver aboard the plane). Lots of people have to have oxygen because of this. Sorry about that United flight attendant - you should not have been treated that way.
  4. From a fellow "Potsie flyer" - Hello! This POTS girl now flies on average 80,000 miles a year, so I'll give you my best tips. 1) Larger airplanes vs. smaller - I definitely prefer the smaller planes, much smoother ride than the larger one with one exception: bad weather. What you are feeling is "normal" for a potsie. So when you get that "feeling" - take a slow deep breath, and know that for us - this is perfectly normal. Remember, the side effect of taking the Xanax is lower blood pressure, so when that plane tilts - your body has to do a little extra to compensate. I know it feels weird, but just go with it, and know that it's okay. Try not to panic - that just makes it worse. But - if you do panic - it's okay. Don't fight it, just let it happen, and it tends to get over with a lot quicker. 2) Lots of salt loading - gatorade, etc. - at least TWO DAYS ahead of time. Yes, I said TWO DAYS. On the day you fly, don't go overboard on the liquids, especially right before take-off. That just means more stuff sloshing around in your stomach during take off and turns. Instead, grab your favorite salty chips, and snack on those pre-flight, to keep the liquid you already have pumped into your system, well...inside your system. Otherwise, you may urinate out all of your hard work. 3) I like window seats because they tend to have a ledge running along the side of the plane that I can put my foot on. I can also lean against the window for a quick nap. Sit on the wing - always. It is the part of the plane that moves the least. After take off, pull your bag out from under the seat in front of you, and set your feet on it like a foot stool. The key is to keep your feet close to you (central body) as much as possible - makes the blood have to travel less distance, and helps circulating it. Wear compression socks!!!! 4) Comfortable clothing is a MUST. Loose, and comfy, please. 5) When you feel dizzy - do NOT panic. Also, do not close your eyes. I learned a trick from a great opthalmologist who is familiar with POTS. Keep your head straight (no turning and talking to the person beside you - sorry), and pick a point directly in front of you. Concentrate on that focal point, (I use the lever that pulls the tray down). Simply stare at it, but do not lose focus (no staring off into space). For some reason, this adjust the messages that run from the ear to the eye (this is where most motion sickness begins). Just breath - it will pass, I promise! 6) Congratulate yourself - because you have just landed!!!
  5. I saw Dr. Low at Mayo Rochester - great experience, but that was back in 2003 and 2004.
  6. I am running into that more and more, too. Very happy to say that!
  7. Sorry for not replying sooner BellaJulz - been traveling for work I find that with POTS, you really need to take control of your treatment plan yourself, and find what works for you individually. POTS hits each of us differently, so it makes sense that treatment will vary between all of us. But I am more than willing to share what I do if it can help anybody else. Here are the main categories: 1) Research - read, read, and read some more. I read about the following: 1. POTS, Dysautonomia, Autonomic Nervous System, Renin-Angiotension-Aldosterone cycle, citric acid (Kreb's) cycle, metabolic disorders, Nicotine receptors, baroreceptors, and the list goes on...When I found articles that resonated with me, and I had questions, I took them to my doctors and asked them to explain it to me. Any doctor that could not satisfactorily explain it to me, or who didn't understand the articles (and I hate to say it - but there were many who had no clue), or did not offer to find out and get back to me, were instantly fired by me. Sorry - but I need docs who are going to bring their A-game, those that can't, get canned. 2) Dealing with Doctors - Build your own care team! I found I had to look nationwide for good ones. And I screen them like I was interviewing a job candidate, because my health IS their job. I have found 4 very spectacular physicians, and I hang onto them dearly. I also have a very good primary care physician, that is aware that my "case" is above his level of expertise, but he was willing to learn, and has since exchanged correspondence with my team of specialists. The 5 work in tandem with each other, and it works quite nicely. 3) Family and Friend Support - Build your own team! This part is really crucial. I explained to my family and friends what I learned about my condition. I have also shared with them what my limitations are, and that those can change on me any time. Not all were able to deal with it, and that is okay. But likewise, my energy is limited, and very important to me. I spend my time and energy on the relationships that are positive, and I let the others go. I don't mean this to be flippant, that is just the way things are for me, and I am okay with that. 4) Meds - I take 5 mg of Lexapro every day. I take .5mg Klonopin before I fly. That's it. Beta Blockers did not work for me, they dropped my blood pressure even lower, and my heart actually sped up to counteract it. Really freaked the Mayo people out, not to mention I almost passed out/vomited. But hey - you don't learn what works if you don't try. Which brings me to 5. Whenever I have to take OTC meds - I always try it in Childrens dosages first, and SLOWLY work my way up. Vitamins: I do take Super B-Complex, C, and E. It works for me, don't know why, but it does. 5) Try stuff out! I know it can be scary, but how can you know if you don't? Consult your "team", have them with you when you try, and give it a whirl. COLD AIR/COLD WATER/COLD ANYTHING - my body likes, but would have not known about it if I hadn't tried it. 6) Give yourself some breathing room (no pun intended). I avoid emotional stressors, as for me, they activate my central nervous system, and then there goes the autonomic system, and I'm agitated - and whoops - there goes the heart rate, and I fall down the hill. I practice Yoga, Meditate, and am a huge John Kabat-Zinn follower on practicing mindfulness. It is true to some extent - what your mind thinks and feels, the body will follow. The reverse is also true. I try to find balance somewhere in between, It takes a lot of practice, but I am pretty good at this now. For me, my symptoms usually require a "trigger". The problem is, that even when I calm down mentally and emotionally, my nervous system has already decided to snowball itself - all the way down the hill! That is when I have to resort to Klonopin, because my system will not calm down without medical intervention once it has gone beyond a "breaking" point. It took me a few years to know when that point was, but I did finally find it. 7) Routine, routine, routine. My body does NOT appreciate surprises! I get up at the same time every day, I exercise at the same time every day, I eat at the same time every day, etc. After a few months, my body got used to running this way. I can now throw it a few curve balls, and it will be okay, but I can't stray from my routine for too long. It makes sense for me - if I change my sleep patterns daily - my ANS gets upset. If I change my eating patterns everyday, my ANS gets upsets, and picks a fight with my GI system, and things turn ugly . I try not to "poke" my ANS too much, it is sensitive enough already, so I try to do it some favors by creating as much of a "static" system for it as I can. 8) Diet/Exercise - like most here, I do my best to eat healthy. I tend to avoid sugar, my system doesn't tolerate it well. I do exercise every day - but I am no mountain climber. I cannot do anything that involves stairs, they activate me somehow. I can climb normal flights of them, but avoid them. I speed walk, and do light hiking. My husband calls it running without my feet leaving the ground, because I can walk at an amazing clip. I keep my calf muscles VERY toned - helps the blood/pump system. I do not do large hills though. They activate me like stairs. Besides, we get enough of an uphill battle with POTS right? 9) Hot weather - I do NOT tolerate heat well at all. If I plan to go outside, I go outside in the morning, or evening. I try to avoid the hot part of the day. If I am going to be outside in hot weather all day, I wear a cooling vest, drink LOTS of water and eat a lot of salty things BEFORE I drink my water. Gatorade is godsend. If it's just too darn hot - I alternate air conditioning for 30 mins - outside for 30 mins. Bar hopping was fun this way, but I don't drink alcohol in hot weather - I learned the hard way. 10) Alcohol - for the longest time I couldn't drink it. Then, as long as it was extremely cold, I could tolerate it. I can now drink it without incident, but I don't go overboard. Dehydrated = problems. MOST IMPORTANT - HAVE FUN EVERYWHERE AND WHEN YOU POSSIBLY CAN. DO NOT EVER, EVER, GIVE UP. Sorry this is so long, but due to my travels, I don't get out here often. Good luck to you, and keep going, no matter what. It may seem sometimes like you are alone, but then just look at all of us out here - you are not alone.
  8. I have - twice. The first time I got "hit", I was doing foreign study in London, and had just flown back to the US. I was 19, and I went down hard. It took me about 2 years to recover. Back then, (I am 36 now), they did not have such a thing as POTS, so I went undiagnosed. I made it through most of my twenties just fine, until 28. Then I went completely down again. It took me another two years to climb out, but this time I got diagnosed at Mayo Rochester, and I only came back about 80% of the way. I think the key the second time around was knowing what "it" was. I also have really worked hard to find out what works for me, and what doesn't. I work a full time job, I have to travel for work, so I fly a lot. But I have learned little tricks to keep me going. Funny - I used to ask people on this forum how I would be able to fly, and now it's a big part of what I do for a living, so I have come a long way. Will it hit me a third time? I don't know. I pray not, but in the meantime - I'll keep going.
  9. Planes, trains, and automobiles...and POTS - Oh My!

  10. Hi Janey, I have struggled with this myself over the years, and have found that most docs don't understand it. I, too, have to take something before I travel (only flight - no car trouble as of yet). I use Klonopin, because it is longer acting than Xanax, and doesn't seem to knock me out as badly. I was told by my doc, don't know if this is true, that the Klonopin "calms down" the central nervous system, and as a result, indirectly calms down the autonomic nervous system. I take one exactly 40 minutes before I travel, because you have to get it into your system BEFORE you start moving. It makes me a little tired, but I'll take tired over nausea ANY day. It does seem to help. Also, I keep Childrens Liquid Benadryl on hand when the motion and nausea get too much (it works like Dramamine for me). I like the Liguid form because it is very fast acting - don't have to wait for the "pill" to dissolve, and I can take it at any time. It helps to calm down the inner ear (so I was told). In cars - always ride in the front seat, and tilt the seat back, and put your feet up on the dash. Try to keep your head motion itself to a minimum - try and look straight ahead. Remember to BREATHE! Good luck - I help this helps.
  11. I have a lot of old threads on here - just do a search on my name. The short answers are these: 1) I had fainting problems as a child - thus it is Mayo's opinion that I was born this way. It was not post viral - although my second flare-up was after a bad flu illness that lasted two months. The hypothesis is that certain viruses will continue to hit me where I am weakest, the autonomic nervous system. 2) The first major flare-up hit me when I was 20 years old. I had just come back from doing foreign study in London. When it started, I thought I had just a bad form of stomach flu. I vomited for 14 days straight (leaving me with a hiatal hernia), was dizzy, couldn't move, and my heart was racing all over the place. Docs were never able to figure out what I had - every test they gave me came back normal (Thyroid - which they were shocked it was normal, EKG - normal, but severe sinus tachy, bloodwork - normal, etc.) I went home, undiagnosed. It took me about two years to really come back after that one. No help from docs - not that they didn't want to - they just had no idea what to do. 3) Second flare hit me at 28. I wasn't messing around this time, after losing 37 pounds in one month (gastroparesis and IBS hit with a vengeance) I literally crashed into the Mayo Rochester ER. Sitting down, holding perfectly still, my heart was racing at 167. No irregular heartbeat, just very fast sinus tachy). From there - Dr. Low 4) Things I do battle with: IBS, GERD, Slow bowel motility, exaggerated splanchnic bed pooling (after I eat a cracker - my gut swells up to make me look 8 months pregnant - no kidding, even the docs were amazed), anxiety, heat intolerance, I get orthostatic at times, hypovolemia, etc. 5) I was told I had the extreme hyperadrenergic POTS - Norepinepherine levels were pushed over the 800's (the scale at Mayo only goes to 750). Again, it has taken me a couple of years to crawl back out. Again, no explanation as to why it happened, or really why I got better. The docs have just said "Go with it".
  12. Hello dear ones, It has been a very long time since I have posted. I see many newbies, and not many of the old names back from when I was on in 2004-2006. To the newbies - I am glad you are here on Dinet. I took me a long time to find it, but oh so glad I did. To the veterans - I am also glad you are still here; quieting the fears, giving hope, and providing advice to the new ones. I have a glimmer of hope to give you - for now. The reason I haven't been on, is that for now anyway, my body has been doing very well. I finally graduated from college (I am a non-traditional student in my 30's) with my bachelors. It took me a long time, I had to miss semesters here and there due to POTS, and repeat a few as well. But finally, after 13 years at it, I finished. I also got married to my longtime sweetie, on June 10th in southern California. Yes, it was short ceremony, but I am happy to say, I STOOD FOR THE WHOLE THING I also started a brand new job in May, and yes, full-time. It is basically a desk job, so no standing for long periods required. I also started to work out with a wonderful personal trainer back in January, who is very good about working within my parameters. To the newbies, I was one of the most severe cases of POTS and Dysautonomia the St. Paul Heart Clinic and Mayo Rochester had ever seen. I couldn't even roll over in bed without my heart going to 145 and higher. I was also used at Mayo as a testing subject for POTS research - yes, I was the guinea pig. I did it to try and help the next person who got struck down with this. Needless to say, I was bedridden for months - literally. There was a time none of us were sure I was going to make it. By the time my body re-wired itself around the damaged circuits, I was 100 pounds of nothing (I am a bigger girl - I had weighed 147). I tried all of the drugs, to no avail. To be truthful, I stumped Mayo and St. Paul Heart. Nothing they did could help me. They knew what I had, but I was "unresponsive" to treatment. I basically went home - waiting. Now here I am, married, new job, graduated, new life. My body got sick, by itself, and got better, by itself. I do take 5 milligrams of Lexapro a day. That's it. Nothing else. What helped me? Coming to terms with myself, and my body. My body will never be what it was before - and I'm okay with that. It will never be what a "normal" persons body is. However, it is still a good body, and I am happy to have it. I have had to make modifications to live in it, but again, I am still here - so I am happy with it. I still have to watch the heat, I still have to do my physical counter-manuveors, I still have to make sure I am hydrated, and I still have mini-spells on occasion. But I handled them before, I will handle them again. I have flown, since last year, to San Francisco twice, Chicago twice, New Orleans once, San Diego and New York City. Yes, I have "Pots-ed" on the plane. I even **** near collapsed in the middle of Times Square. It's okay - I obviously made it through - But I figure - what the heck? I am not going to stop living, I only get one shot at this life, and I am taking everything I can, while I can. I even drink red wine now, yes I do! At the height of my illness, I thought I would NEVER be able to touch a drop of alcohol again. One sip, and I would be on the death bed. Not anymore. No explanation as to why - but it just is. I can also handle heat and humidity, as long as it is not for too long. No explanation as to why - it just is. I can walk for miles. I can even do a pretty tough work-out routine at the gym. I can now eat whatever I want - not just Ensure and Pedialyte. I basically, with modifications, live a pretty normal life now. That could stop at any second, as it did twice before, but I am living it up, every second I can. The point of my long-winded message to you? DON'T GIVE UP! No matter what any doctor, psychologist, relative, or friend says to you - keep going forward. Never give up hope in yourself, or your body. Recognize the small victories in everyday living. For awhile, for me, it was getting to the bathroom alone without passing out. But I celebrated it. Give yourself the victories you deserve, no matter how small. Love yourself - no matter what condition you are in. Your body WILL notice the difference, and will love you back. Forget about fear. I know - easier said than done. But fear takes up to much of our already precious energy. You are all obviously very brave, because look at what all of you have endured already. Give yourselves that wonderful respect. My best wishes, hopes and dreams to all of you. If I can help you in any way, drop a line. Take care of yourselves. Keep going - no matter what.
  13. Hi Ernie, I haven't been around for a year or so, but I continue to lurk! I hope you are okay dear one. Take care! Robyn
  14. Hello, I have successfully flown from Minneapolis to : New York, New Orleans, San Francisco, San Diego and Chicago since being diagnosed. My tips: Plenty of Gatorade, Pedialyte, whatever suits you. Bring: music, dvd's (I bring a laptop to watch movies on). Also, I am NOT trying to push drugs on you, but if you haven't flown in awhile, contact your physician if you have anxiety issues. Klonipin has saved me on several flights. It calms down a hyperactive nervous system - so be it klonopin, valium, xanax, etc. whatever works for you, bring it. Take it 15 minutes before take off (if your physician says that's okay). Mainly - RELAX- you will make it. If the rest of us can do it, so can you! Take care, Ava
  15. So sorry you are going through this! I am a Lexapro taker, and I bought some from Canada once. It said it was Lexapro, but it came from a lab in New Zealand, and I was almost incapacitated within 3 days. I had to run to my local pharmacy and pay for the new Rx from the usual lab in Germany. I have no idea about the generic/brand, but I was so sensitive I noticed a difference just in the labs who make it. So no, you're not crazy, it CAN make a difference. Good Luck!
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