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About Elfie

  • Birthday 09/02/1989

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  1. I haven't been around in awhile. I've been diagnosed for 4 years and have had symptoms related to postural hypotension and tachycardia for 6 years and have gotten to the point where I'm limited but not ruled by my illness with the help of a good cardio and medications+lifestyle changes. I had an opportunity to do something that I was forced to skip due to severe symptoms when I was first diagnosed and decided to take it on, even though it was pretty ambitious for me. On top of that, part of the way through that project I was offered and took a job. I was working a ton of hours, standing a lot, doing physical work, and dealing with a lot of stress and not the best living conditions (only getting to sleep at home 1-2 nights a week, etc). About 3/4 of the way through the project I started having issues with migranes. I am no stranger to migranes. I had my first one at age 12, my dad is a sufferer and his mother was one as well. There seems to be a genetic component but there aren't any clear triggers like food . . . hormones . . .etc. like most migrane sufferers have. Actually, spinal misalignment seems to be the clearest trigger, but it isn't always linked to that. I know since developing POTS many of my migranes have begun with blood pressure fluctuations. Anyway, about 3/4 of the way through this project I started getting auras and migraines frequently. It seemed like any slightly low BP day would trigger one, and from that point on, raising my bloodpressure wouldn't solve the problem, but only cause worsening of symptoms, but lowering my BP also caused symptoms. The project is now over, but I am still working full time and dealing with some work stress. While I am a lot less busy than I was for the couple months of double projects, I'm still dealing with frequent headaches that always seem to be linked to bloodpressure changes and POTS symptoms. My cardio is fab but has suggested I see my GP about them, but I know they are BP related. GP suggests dealing with it through my cardio. Can we talk migraines? Anyone had this experience? What do you do? My first reaction is to raise my BP slightly, but it isn't erasing symptoms.
  2. I'd be very careful with EDS and ANY chiro as well-- esp. one that isn't very experienced with it. Also, not everyone needs supplements and some can be harmful--- I prefer to work with docs and good nutritionists from that angle. It doesn't hurt to try gluten and allergen free diets, but it may not work for you. Mine actually made my symptoms worse.
  3. I occasionally get those really powerful cramps as well, and it usually is because my electrolytes are out of whack--- I have had the experience of one dropping me. It is really embarrassing, sorry you had that happen! I try to keep my workplaces from knowing about conditions as I find it may be detrimental to my career and it has gone ok, since I'm not a frequent fainter or one who crashes unexpectedly (I do that way more at home)-- but it would really **** to have people fussing over you after a faint.
  4. It is hard--- I actually think it is hard to have a POTS diagnosis as well, especially if you haven't had advanced autonomic testing to try and determine what is causing the POTS. In my case I was 18 when I came down with POTS. However, I don't have the juvenile onset version that can be related to rapid hormone changes and growth. I was originally told "best guess" that mine was post-viral, although the circumstances around it are suspect. Either way, because of that docs I see are always making assumptions about the seriousness of my illness and about the measures and treatments worth trying because they ARE SO SURE THAT I WILL "OUTGROW" IT IN 3-5 YEARS. I put up with a lot of sub-par care. Unfortunately, this fall will be my 5 year anniversary of my POTS onset, with the exception of a few symptoms that came along with a viral illness the year before. I haven't improved in any meaningful way. I'm an adult now (out of school), and am struggling to find work and make POTS work in the real world. Since POTS I've had only one full-time job, and essentially in the best conditions possible working full-time meant that I work and I exercise and do little else. I still get told that things aren't serious, that it is "just POTS." In 2010 I had 20 pounds of fluid in my chest pressing on my lungs because my heart wasn't pumping efficiently. Now after insisting I just had POTS for years my cardio is trying to add NCS and other things to my diagnosis to explain what I've been telling him for years . . . just because my BP and HR in the office are low normal doesn't mean that I'm not fainting or having symptoms of low BP. Now he wants to use a pacemaker. I've cried in my cardio's office before, and probably freaked him out (well, he isn't a huge jerk, so he would have handled it but been weirded out). I actually did freak his PA out--- she suggested that all my symptoms would get better if I dealt with my obvious emotional issues with counseling. I'm pretty sure the nurses chewed her out. I think it is hard for docs sometimes because they only see test results and clinical definitions, while nurses have knowledge of what the symptoms mean to your quality of life without getting caught up in "what should be happening"--- which of course never is what is happening with someone with dysautonomia. It can be hard because I've sat there and listened to him be very concerned with the quality of life of some of his elderly heart patients and listening to their complaints and then turn around and tell me that my similar complaints aren't worth treating because 1) POTS isn't fatal and 2) I'm young and going to grow out of it. When I first became a patient of his I didn't pursue further testing with an autonomic center because of his POTS experience (and the center I was diagnosed at not taking my POTS seriously) and his insistence he could treat me. Now he has pretty much given up, and several years later I'm trying to get into a testing center to learn more about what is actually going on with me so someone can treat me. Beyond not having treatment beyond the very basics and it affecting my ability to work and support myself, not knowing for sure (as sure as possible) the reason I have this can be hard. It is something that is going to impact my future career moves and education. I've tried to date at various points, and the older I get the harder it is to answer questions about having kids and whether I will have this for the rest of my life. Also, because of my history of heart failure, it is hard to explain that I have this "non-serious" disease that has been serious for me before. They just don't seem to get the URGENCY!
  5. Sounds like there is a lot of support for just doing what you have to do, which is how I normally go about my business. I'm not concerned about the ride--- I'm rarely motion sick as an adult-- I feel fairly decent in the car, especially since I can make myself comfortable in the vehicle if I'm not driving. However, stops or no stops I'm still worried about the crash afterwards.
  6. Issie- thanks, I'm trying to make that "should I" decision now. Diamond-- motion mate is a homeopathic remedy for motion sickness. I'm sure Issie will be back to tell you more. I'm really unsure about this trip, as I too think it would be easier to meet his family when they come visit, but he'd still like to take me. I'm afraid that I'll make a bad impression or divert plans. Mainly I'm concerned because it seems like a very busy time for the family. Also, I'm not sure exactly if there will be a quiet place to lay down and rest since the guest room sounds like it doubles as a lounge, and with an event they might need the extra room during the day, which would mean I'd have to crash someone's bed! We considered a motel stay but it sounds as if it would be a long drive to get to his mother's house, where most things are happening- which wouldn't help me out much.
  7. Thanks Diamond-- I'm not that worried about the actual traveling since I have done long 5-7 hour trips before (and he will drive, and probably stop often for his own needs every hour or two), but feeling crummy for days afterwards once we arrive. I'm worried about potentially dealing with a migraine the next day, or just dizziness and fatigue from a tiring journey. I dare say meeting his mother and sisters will probably be a bit exciting and stressful, as well. On top of that, it has been several years (prior to me beginning treatment) since I've dealt with heat like that. Last time I was somewhere hot I had symptoms similar to altitude sickness, wanting to lay down, being dizzy, sleeping, shortness of breath, nausea, ect--- POTS symptoms, but all at the same time and with exaggerated shortness of breath and fatigue. He seems quite keen on me going, but I don't want to ruin his trip.
  8. I haven't traveled for pleasure since my onset. Any traveling has been to medical appointments or to see close family or attend funerals. Travel is pretty hard on my system, but obviously when I'm just crashing with family or going to the doc that doesn't matter much. However, I've recently been invited on a road trip with the man I've been seeing. He is from Tucson, AZ and is traveling back for a family event and would like me to come with him. I'm flattered that he'd like to introduce me to his family. I also wouldn't mind "getting away" for a week after a long hard winter. The issues lie in traveling (about 9-10 hours by car) and dealing with the heat in the 90s in Tucson. I don't want to take the focus away from the family event or keep him from enjoying the time with his family because things don't go well and I need to be laying down. I'd love some advice! If I don't go on this trip, hopefully I will be traveling to the Mayo in MN (18 hr drive) or Dallas, TX (13 hours) for more testing, possibly with the same traveling companion.
  9. When I travel I tend to be both dizzy and sleepy-- however, I relate it more to what I'm doing stressing my system, which lowers my BP a bit and THAT makes me both dizzy and sleepy. Sometimes laying down and relaxing is enough to reduce the stress on my system and I will actually feel better after a nap, despite sleep lowering BP more.
  10. I live in Colorado, also at a higher elevation than Denver. I grew up in CO at 9,200 feet and spent much of my childhood above 10,000ft. I was living out of state at a much lower elevation when I got POTS. I can't comment on the weather since where I was living also had lots of sun. I moved back about two years ago. It did take me about 4-5 months to get used to the altitude again with my POTS, but once I re-adjusted I don't have more symptoms than before. I do still have a harder time going up to visit family that live above 9-10 feet--- I tend to be more fatigued, a bit more dizzy/POTSy, and sleep a lot more. If you have Vit D deficiency, CO should be great for you! lol
  11. Firewatcher-- I've experienced similar to what it seems like your describing. I'm still stronger than the average woman, but instead of gradually fatiguing (normal, pre-POTS), my muscles go and then just won't fire to do another rep. I also plateau big time when it comes to lifting weights, ect---- where I gradually increase strength and then randomly it will stop and I just can't do any more--- almost like I have a muscle I've over-worked or fatigued . . . .but even with rest it doesn't recover. I also have times (when I'm feeling less potsy, usually) where I can lift significant amounts of weight many many times with no problem. Other days I have issues being able to physically pick up a gallon of milk, both because of symptom triggers and just physically not being able to. When I got POTS I lost a significant amount of muscle, despite most of that muscle being "natural" (i.e. just from my life, stuff I normally had on my frame, not from weights, ect). I didn't change what I was doing--- but it is almost like I was chewing up the muscle and it wasn't rebuilding fast enough to keep up with me. Similarly, when I have a good POTS day, I can run for long distances and sprint fairly quickly, go hiking above 10,000 feet all without being short of breath, so I know cardiovascular wise I'm in decent shape.
  12. If you work out at a gym you could find a nice mat to lay down on and "stretch" for 15 minutes! LOL Or lay with your hands in a prayer position on your chest and say your doing yoga!
  13. Good to know-- my nuero used to work at Mayo back in the dark ages when they were first solidifying an autonomic lab and coining POTS. She wants me to get further testing, but doesn't have the facilities or staff to do it herself. I'm trying to decide between the mayo in rochester and Vernino in TX.
  14. Mine is usually related to a BP drop-- even if not low, my bp usually rises (at least in my brain) when I work out and get blood pumping and the relative drop from slowing down can cause symptoms, and sometimes it just tanks. Also, sometimes I find I'm working out on adrenaline pushing myself, and crash afterwards, even if I'm not working out too hard. I sometimes have to sit in the car or a cool part of the locker room and "chill out" before I'm safe to drive. For me, I've gotten better over time at avoiding pushing too hard, which seems to help.
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