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About shan1212

  • Birthday April 18

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  1. If you're in the US, the problem with getting the supplies might be the overall shortage right now caused by much of the supply being produced in Puerto Rico. My IV hydration clinic and my regular doctor have both had issues getting their regular supplies.
  2. I think autonomic dysfunction exhibits differently in different people. I have had life-altering POTS for the last six years, but only in the last six months have I been diagnosed with Chronic Fatigue Syndrome and started experiencing exercise intolerance. I have continued exercising throughout, with a slight reduction in stamina and ability as time wears on, then suddenly a big reduction. Even today, when I often can't perform simple errands or sit with my family at the dinner table, I still sometimes experience a boost from exercising rather than a drain. I guess I would just say as one exerciser to another, to be very careful not to overtax your body so that you don't eventually lose your ability to compensate with physical conditioning. You want the conditioning but not a cortisol dump.
  3. Your doctor said forgoing the second test would be OK but not preferable, right? I guess in your case I would not do it, then. I have a flying phobia and while I can make myself do it, my body is in such a state of panic and alarm for a long period that I have to take that into consideration when I decide whether or not I'm up to it. I have to recover not only from the effects of flying but from the adrenaline and cortisol overload. I took 8 flights this summer and fall and it never really got any better, so exposure didn't help much. I also did hypnosis which did help some. Kudos to you for trying so many times with the phlebotomist until she could draw blood. That shows perseverance and courage. This is probably silly, but have you ever tried using a needle on yourself? Maybe if you were in control you could get a bit more desensitized.
  4. I'm doing an elimination diet now. My doctor wants me eating a very clean gluten-free keto/mito (with one serving of grains per day allowed) diet for energy, but he also has me eliminating foods I showed sensitivity to the IGG test. I know some people don't put much stock in the IGG test as a way to determine sensitivities, but so far I am seeing very promising results. I have been declining steadily for six years. This past month, it had gotten so bad that I was often unable to eat dinner at the table and was leaving the house only when necessary. Because of my lack of technological skills, I pieced together my doctor's advice in stages instead of starting it all at once. So by the time I got to what I was supposed to eliminate, I had already eliminated some of it and switched to a veggie-centric, low grain diet. But that still wasn't doing much for me. As soon as I eliminated all of my food sensitivities from the test and eliminated added sugar, I saw an immediate doubling or tripling of my energy, a reduction of my intolerance to upright posture, and a complete resolution of all GI symptoms. So yeah . . . I'm sticking with it! I still feel tired. I still have seasonal allergies. I still have to plan rest. But I am a whole lot better than I was when I started. Obviously the extra inflammation from foods my body doesn't like was the straw that was breaking the camel's back. I have also reduced my midodrine and mestinon by about half as I had been upping them more and more as I got worse and worse, until I was completely worn out. I'm starting some new supplements as well and expect he'll give me more to add at my next appointment in three weeks.
  5. I'm a similar place and interestingly, I just started Mestinon this spring. I wonder if that has something to do with it. I haven't been having restful sleep and I've had a lot more fight or flight /panic symptoms. I was prescribed Clonidine for the adrenaline surges. They used to come only during bad flares, but I started having them daily. I'm seeing a new functional/integrative MD who wants me to back down on how much medication I'm taking. So I've reduced Midodrine and Mestinon by about half. And the adrenaline is happening a LOT less. It's pretty much gone. I am having a bit more orthostatic intolerance as a trade off. My doctor wants me to start taking CBD oil to sleep. It's super expensive, but if it works, I'll gladly pay it. I don't know how well the Trazodone is working for me any more.
  6. I think you'll need an actual tilt table test to rule it out. Being at 70 degrees for up to an hour is different than standing in a doctor's office for a minute or two. Your heart rate may well have gone up higher during an actual tilt table test. I have a poor man's test done when I go see my POTS doctor, and sometimes I have a 30 BPM differential, and sometimes I don't. I have trouble with stairs too. My HR goes way up. And I exercise as much as I can, and I average 20 flights of stairs in a day because I live in a 4 story house. Especially when it's higher humidity and lower barometric pressure, I can get quite winded going upstairs.
  7. I tried this recently but didn't love the taste. I prefer grape or orange NormaLyte which also follows the WHO formula. I prepare a half liter of NormaLyte before bed every night and drink it first thing in the morning. And then I drink a couple more as needed throughout the day, plus maybe a Nuun or two, plus my homemade electrolyte mix. And I still am always thirsty!
  8. I've gotten fluids done once a week at my doctor's office during my summer slump the past few years. I get 1.5 liters at a time. When I was pregnant and barely functional, I had fluids done at home every day. A concierge IV place has opened up in my area, so I've been getting them done there this year (my doctor has gotten so many patients that it's hard to get scheduled with him now). I pay out of pocket but it's not too bad ($75 for vitamins and 1.5 liters of saline). I have run this by my doctor but the IV place (calls itself a hydration station) has a PA there and doesn't need a doctor's note or anything. They promote themselves for people with hangovers, jet lag, recovering from an illness, etc. to come in as needed. I flew to Vancouver recently and I found a naturopathic place that did IVs and got one there too before flying home. In big cities you can find these kind of places. Sometimes I feel like it helps more than others. The first IV I got this summer made me feel like super woman. But recently I haven't felt as much of an impact.
  9. Do you have a HR monitor? I use a Polar chest strap when I workout. What I've discovered is that my HR is much higher when I do weights. It will be 160s-170s while I squat, do overhead arm presses, etc. But when I do cardio, it's usually in the 140s. So that might be why this wiped you out more than you were expecting. I have found that over time I've learned to pick up on the cues when I'm overdoing it. I get taken by surprise a lot less now. But it was a lot of trial and error to get here. To get my HR down I hydrate, hydrate, hydrate (with electrolytes) and rest.
  10. A compassionate doctor can make such a difference. So much of figuring this out is trial and error, so you need an open-minded, patient doctor to navigate things. I'm glad you are feeling positive about your new doctors!
  11. Flying is a struggle for me. It was after a flight to Europe that I first had a POTS attack. The next time I flew, it happened again (I would be fine in the air but crash with vomiting, dizziness, etc. a few hours after landing). Then I got pregnant with my second daughter and I'm sick with POTS all the time, so flying just makes it worse. I've done some research on this. The air is thinner. It's the equivalent of being at 6000-8000 feet altitude. Also, the air is very dry, below 20% humidity. So if you are sensitive to these things, flying can exacerbate problems. And finally, if you have motion sickness, of course there's that too. It took a few years, but now I have developed an actual phobia about flying. We had a trip across the country this summer for my mom's birthday cruise, and I was super nervous about it. But I made it! I don't do early morning flights. Waking up earlier than usual throws me off. I take as direct of a flight as possible. If I have to take two flights, then I want the layover to be in the right direction to shorten flying time. I wear compression tights. This is tricky because I get super cold on airplanes, so if I am wearing only knee-high socks, my thighs will be cold. But full-on compression tights are uncomfortable when your stomach bloats from being in the air. I'm going to try thigh-high tights next time. I bring tons of layers and blankets. Unless I am having a panic attack, I am usually freezing on airplanes. Also bring gloves and a hat. Wear layers so you can peel them off if you get warm. I bring Normalyte packets and Nuun tablets. I have even travelled with salt and potassium in a baggie which I add to whatever drink I want. About every third time they will take it out and test it. I bring two empty water bottles and fill them up after we get through security. If the flight is longer than two hours I"ll probably buy another large bottle to bring on. On a recent flight people kept asking for water and the flight attendant never brought it. I filled up their cups from my extra bottle. I get an aisle seat unless I am sitting next to a family member. I need to get up a lot. If I am feeling really dizzy, getting up and moving around helps. I go to the bathroom at least once an hour. I'm fairly petite and flexible so I'm able to pretzel myself into a ball with my legs up and head sort of down, but it's not easy. Those airline seats are tiny. I can't be hungry when I get on an airplane or else the lower blood sugar will set me off. I do my best to eat a good, easily digestible meal beforehand. I also bring snacks. I dance around in my seat during take-off. If I am already feeling POTSie, it's like I can feel all the blood getting sucked down to my feet when we take off. So I try to keep my heart pumping better. Normally I take 5 mg of Midodrine several times a day, but I take 10mg one hour before flying. That way I am at my best for take-off. I do often take phenergan, but since it's an antihistamine that can dry you out further, I try not to if I'm not feeling queasy. I have Ativan but I've never taken one for flying because I worry about it making my BP lower and my coldness worse, but I probably should have taken it recently when I had a panic attack before getting on the plane. I saw a local hypnotist about my phobia. She gave me two wonderful recordings of her leading me through relaxation. I imagine myself setting all my bodily functions -- HR, BP, etc. -- at the right setting. I imagine myself flying. I used this for preparation and also if I was panicking while flying. Fortunately the anxiety is usually anticipatory, and once I'm in the air I am less fearful. I also saw a regular therapist. Unfortunately, there's only so much exposure therapy you can do for flying. I took 8 flights this summer. I felt ill on nearly all of them, but only really ill on two. I had a panic attack and almost exited the plane while we were still at the gate once, but I pushed through. The worst thing to do with a phobia is to avoid, unfortunately. I have asked this question before, and most people with POTS said they were fine with flying. For me, it really triggers bad symptoms, and it's hard to make yourself do something knowing you won't feel well. But you know what? I did it anyway. I'm pretty proud of myself. The captain even gave me wings after the flight where I asked about deplaning! I cherish those. The reality is that you might not feel well, but you aren't going to die. You will recover once you get back on the ground and do whatever you need to do to get out of a flare. I got to go to Alaska and my kids got to enjoy a Disney Cruise. Very special! I got fluids in the infirmary to help me on the cruise, too. And I always get IV fluids before I fly if I can.
  12. I've been getting fluids weekly at a new hydration clinic for the last couple of months. In the past I would get them through my doctor during my "summer slump," but he has gotten more patients and it's harder to get in with him. The people at the clinic have been great at working with me, and it's so much nicer to pop in whenever I want versus setting up an appointment an dealing with a doctor's office. I also get a Meyer's Cocktail of vitamins along with it.
  13. Walking uphill is hard! What is your HR when walking on flat ground? If the recumbent exercises were not too difficult for you, then I'd personally try to do something that gets your HR up a little more. Of course, it is always helpful to increase your muscle mass and the recumbent exercises may help with that, but you can do your "cardio" separately with walking or something else that suits your abilities and lifestyle. I exercise 5x per week and unless I just walk at an easy clip, my HR is always in the 160s or 170s for at least some of my workout. Check with your doctor of course, but I wouldn't avoid activities that you can tolerate otherwise just because of a high HR.
  14. I know this is a crowd that will understand . . . I feel like I've developed full on anxiety about flying. I've flown all my life and it was never a problem. I got my first POTS symptoms after flying when my first-born was a year old, but I didn't put two and two together. Then with my second pregnancy my POTS got so much worse, and since then flying has been very difficult. I get IV fluids before flying, I wear compression socks, I hydrate like crazy, and I usually take a double dose of Midodrine. Usually I am fine while actually in the air, though I'm often queasy with a fast heart at some point. But it seems like all my motion-sickness and sensitivity to sensations has increased with each passing year. Now a 10 minute ride on a shuttle bus can make me ill. Waking up early makes me ill. Put it all together with getting to an airport and onto an airplane and I'm already sick before we even take off. Then the effects of the dehydration and pressure change hits me at some point after arrival. And then I eventually have to turn around the make the return trip home, this time without fluids. Athis point I'm terrified of getting on an airplane. What if I get sick like I do once or twice a year where my adrenaline is raging and I'm just riding the waves trying not make it worse by vomiting all my fluids out? I have Ativan and may resort to taking that. Can anyone relate? What works for you? I'm trying to book a cross-country trip for my mom's birthday but just looking at the options is alarming . . . can I survive a five hour flight?
  15. My problem is different -- a little trouble with incontinence when I sneeze or do plyometric squats with a full bladder. I discovered something called kegel balls that strengthen your pelvic floor muscles. I am no longer getting up several times a night to pee and I don't have any issues with exercise or sneezes. It also helps in the bedroom. I've also read up on pelvic floor health and have discovered that squatting is really good for getting all of your muscles lengthened and strong (squatting down like a small child would playing or people in other parts of the world who use squatting toilets). It's also nice with POTS because it keeps everything close to your heart but you're not reclined so your body is still engaged. I got a "squatty potty" for the bathroom in addition to just dropping down into a squat throughout the day. Just thought I'd throw these out there because I'd never heard of either when I decided to see if there was anything to be done for my little pee problem!
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