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Everything posted by Libby

  1. I haven't been around the forum in quite a while, but I hope you guys don't mind me popping back in to complain to people who understand. 😂 The temperature is in the single digits, my bathroom remodel just finished up a few days ago, so I decided that a bath in my new tub would be the perfect way to warm up. LOL. Silly girl. The bath itself was great. But then it was over and I had to stand up. Heart rate went through the roof, b/p dropped low enough for my vision to start to go white. I couldn't think straight enough to run cold water over my legs so I just pushed through the symptoms and stumbled into my bedroom to wait it out on my bed. And while I'm doing that, my dog hops into the tub and grabs my razor for a chew toy (thankfully she didn't touch the blade, but I'm going to need a new handle. sigh). It's been maybe 5 years since I last took a bath. Somehow I forgot what a bad idea it is. Now I'm curled up on my couch waiting for my brain to stop feeling so fuzzy and debating taking a midodrine so close to bedtime because blood is pooling in my legs like crazy. Ugh! Stupid NCS. Stupid POTS. But things will be better tomorrow. I hope all of you are doing well! Staying warm, if you've been hit by this polar vortex, or enjoying your lack of blizzard conditions if you're in a less frigid part of the world.
  2. No one is awake for me to complain to, so I'm popping back in the forum to do it here. My tolerance for caffeine just keeps dropping. I've known for a while that I can't drink coffee. Today I had maybe 6oz of diet coke at a party and my hr is still 100+ 7 hours later, just lying in bed. On 100mg of toprol. I used to drink diet coke by the gallon in college. I'm glad to be rid of the habit, but I wish I could have it once or twice a year without feeling so...ew. Ugh. I just want to sleeeeeeep. ETA: I love beta blockers. Half a dose and I'm down around 80 bpm. So much better.
  3. Those at home genetic testing kits have always interested me for a number of reasons. Ancestry, to a point, but mostly because of the wealth of medical information that would result. It's not for everyone; we still don't know enough about genetics, except in certain cases, to say anything definitively. Knowing can create a lot of unnecessary stress (or a false sense of security). But I like this kind of thing. . I finally decided to take the plunge a few months ago with 23andme. The FDA slapped them with a cease and desist a few years ago, preventing them from providing medical information, so I had to jump though the added hoop of uploading the raw data into another site (Promethease) for a minimal fee. But wow! Over 18k individual bits of info detailing specific points in your genome, your genotype at those points, and in many cases what research has said regarding what that gene codes for and what your genotype suggests. I've learned that I'm meant to have breast cancer, prostate cancer, and be morbidly obese. lol. Like I said, it needs to be taken with a grain of salt. I've always suspected that I might have a mutation in the FBN1 gene. My dad's side of the family seems to have some marfanoid traits. Not classic Marfans syndrome - we're not that bad off - but there are a few things. I have stretch marks when I've never had a BMI of even 21, MVP, my arm span is slightly longer than my height, and of course POTS - my brother has a slightly sunken chest (pectins excavatum) - there have been significant heart valve problems all through the my dad's side. Nothing that's prevented anyone from living relatively long lives, but something to suggest there's something there. And it looks like I do have a few mutations in the FBN1 gene. One in particular, rs2118181, seems to be associated with the vascular component of Marfans, but without many of the other symptoms Marfans patients show (eye problems, scoliosis, etc). Bingo. Now, I'm not thrilled to have a higher risk of aortic dissection. But I'm feeling super vindicated right now, haha. I had a pompous EP basically tell me that I was an idiot when I suggested something like this to him a few years ago. Anyway. It doesn't change anything, knowing. But despite the obvious physical symptoms, I've always wondered if I was...not making it up, but maybe exaggerating? Not that I couldn't be exaggerating now. But at least I know that there definitely is something genetic going on here.
  4. I've been on beta blockers for about 8 years. I tried propranolol first and absolutely hated it. I felt awful; it basically knocked me out. I switched to metoprolol, which worked decently well, but didn't last as long as I needed it to. Switched to Toprol, the extended version of metoprolol, and, though I played with doses for a little while, that's the med that works best for me. Really, if I had to pick only one med, it would probably be my beta blocker. I'd recommend trying a different one. If you can find one that works for you, it's a good drug to have in your arsenal.
  5. I've been trying to be more active recently. I played volleyball today, and it went super well - I only got presyncopal once, haha - but now my veins are seriously aching. Arms and legs. I get some aching every day, usually at night, along with some pooling. Legs mostly, but arms and hands sometimes too. Never something I can't deal with. This time is pretty bad though. I can move, but it's difficult. Goes away when I lie down. Has this happened to anyone else after exercise? I imagine the ball hitting my arms didn't help, but it's happened before to a lesser extent so it can't be all that. Any suggestions? Compression garments, maybe? A cold shower afterwards? I'd like to keep exercising, especially playing vball, but this isn't too fun.
  6. My heart breaks for you. I lost my first dog a year and a half ago and my heart still aches for her. Eventually, you'll be able to smile at the memories without crying at the loss. Stay strong.
  7. http://www.dynainc.org/docs/ncs-pots-combined.pdf It's definitely not uncommon for a patient to have both. The tilt table test was originally developed to diagnose NCS. It's used for POTS now too, but a doctor who is unaware of POTS (and a lot of them haven't even heard the acronym, even cardiologists) might look at the test and only see NCS. Mine diagnosed me with NCS and inappropriate sinus tachycardia, despite it showing very clearly POTS. NCS and POTS both have very clear diagnostic criteria. POTS - your hr rises 30 beats (40 in children) or more, or above 120, within 10 minutes of standing, with no orthostatic hypotension (large drop in Bp) during that time, but causing symptoms. NCS - steep fall in hr and/or Bp, resulting in loss of consciousness, after at least 3 minutes upright. People with POTS and NCS generally seem to display POTS symptoms (rise in hr, stable Bp) in the first 10 minutes of the tilt, fainting shortly afterward. Do you have a copy of her test data? What did her heart rate do over time?
  8. I did it a few times a long time before I was diagnosed (but I was having some milder symptoms). It was great. No problem whatsoever and I would do it again in a heartbeat if I had the chance, even in my current condition (mild side of moderate POTS). The pressure of the water acts like compression clothing, you don't really get gravity causing the problems it does on land. Or I didn't at least.
  9. Not quite the same, but I've juice fasted. I know that proponents of juice fasting also claim that it clears out lingering infections and damaged cells. I can't maintain it for super long - 7 days is my max - but after 5 days or so my old, long healed injuries start to ache. Not proof positive, but it's an interesting result. Again, juice fasting, but there's a documentary called Fat, Sick and Nearly Dead (on Netflix, might be on YouTube too) where a guy cures himself of an autoimmune skin condition through a month or two of juice fasting. A second guy with the same condition (as well as morbid obesity) cures himself too, if I recall correctly. There's a pretty large group of followers who swear by juice fasting. Forums and groups and whatnot. If I ever have a month when I don't need to use my brain, or possibly stand upright, I might give a longer fast a try.
  10. Ooo, I'm excited to see any responses on this one. I have jawbone UP24 and the sleep monitor is awesome. I've been dying to get one with a HR monitor, though!
  11. Hm. I have leg pain from pooling and restless leg syndrome. I only have the pooling pain when I'm standing and walking on my 'bad' days, never when I'm sitting. My RLS happens at night and for me is more of a need to move my calf muscles. I'd liken it more to an itch/ache combination than a pain. Moving does help it, but it doesn't sound quite like what you're describing. My legs fall asleep all the time when I'm sitting and they really, really hurt when they wake up. But I don't know if that sounds like what you're having either. I have to hobble or just stand in one place for at least a minute after standing up because the pain is so bad. Sorry this isn't more helpful. The only thing I can think to try, and I don't know if you have a way to do this, but if you could replicate a TTT position - a 70 degree tilt, which keeps you upright without really engaging your leg muscles - you might be able to get a more definitive idea of if the pain is coming from the relaxation of your leg muscles.
  12. Ugh. I hate it when my lightheadedness starts acting up. I hope you feel better soon! I'm not on midodrine at the moment but I have been. I remember that my neuro told me, when we were trying to figure out my dose, that I should keep it as low as I could, just in case I ever needed to increase it. She didn't want me to max it out. Though I'm not sure if she was anticipating that my body might get used to the dose and stop responding as well, or that my symptoms might get worse at some point and need a higher dose. It could definitely be just a blip. We all have good and bad days (weeks/months...), and this last week could have been a bad one that overwhelmed the med. Other meds that come to mind for increasing bp are SSRI/SNRIs and adderall or Ritalin, but I'd guess your neuro would have you try an increase before switching. Good luck! Let us know how your appointment goes.
  13. Thank you so much!! That was a fantastic reply! POTS and GP are my main issues, no EDS (you have my sympathies!) I have Hashimotos too, but that mainly contributes to fatigue. This gave me a lot to go forward with. A few things you mentioned wouldn't have even crossed my mind - at least not until I was actually in the situation, and by then it would be too late. Rounds/clinic is something I can't believe I didn't consider - I shadowed a doctor over the summer and stood whenever I was in a patient's exam room (which was so stupid of me, but I didn't want to inconvenience the doctor). I didn't pass out, but it was a near thing a few times. And if I had been required to actually answer questions or learn in that situation, I would have failed miserably. Thanks again! I'll keep all of this in mind while I'm looking at schools.
  14. So I'm thinking about going back to school. Medical school. Not just thinking about, I guess - I've applied and today I received an interview invite. Really exciting because now the pool of candidates that I'm competing against - at least for this school - drops from 5,000 to 600. After the high finally wore off, I started to think a bit. I don't want to get too far ahead of myself, or jinx myself for that matter, but when I'm looking at these schools it's something I need to consider. What accommodations am I realistically going to need. I would say my POTS is on the mild side of moderate right now. My vision goes black fairly often when I stand up, but I stay upright. If I'm standing in place for more than a few minutes, I start to get pre-syncopal, but I'm usually okay if I'm walking - as long as it's not too far and stairs aren't involved. I'm fatigued, but I can manage a full day at work - I'm sitting 90% of the time, though. Depending on the day, brain fog can be an issue. Finding words, making my point. But sometimes it's not so bad. My gastroparesis is minimal right now, but if it comes back (and it does, randomly) I'm going to be either stupid from hunger or stupid from nausea. I made it through my masters without accommodations. I probably should have had them, based on my performance towards the end, but I was't diagnosed yet. So I'm not sure what's reasonable for my condition. I've been trying to compensate for this stupid disease for so long that I just don't know. If I can't finish a test on time, is that my fault or the POTS? Asking for help has never been my strongest suit, and thinking other people view me as weak - or abusing the system - really, really rubs me the wrong way. But if I'm going to do this, I want to do it right, and I need to understand that just because I CAN do something now doesn't mean that I should if I'll pay for it later. Especially if I'm not going to have much free time in my budget to lie in bed. I don't want my pride to get in the way of me becoming the best doctor I can be. The one thing that I know I would definitely need a chair for any anatomy labs or courses where I'm expected to be on my feet for long times. Gore doesn't freak me out, but me passing out because of pooling wouldn't be fun for anyone. But beyond that, I'm not sure (which is ridiculous, I realize LOL). Extra time on tests? I feel like I might not always need that - but I don't want to not have it for the times I do need it. For anyone who has had accommodations, or has any ideas on them, what else should I look into?
  15. I don't faint much either, but I do come close to it far more often than I would like. If I start sweating (and feeling overheated), that's usually my sign to sit down RIGHT NOW before the choice is out of my hands. That said, I personally don't get pre-syncopal while I'm sitting. I know that there are some people who do, but the combination of the sitting and the intense fluttering makes me think you might want to make an appt with your cardiologist. Cardiac causes of syncope (as opposed to vasovagal syncope) don't sound like anything to mess around with. (I know you're not looking for medical advice - I just had to say it.)
  16. Every movement you make moves lymphatic fluid . Because the lymphatic system lacks a pump (i.e. the heart, like in the circulatory system), it depends on gravity/muscle movements to squeeze the lymph along. It's just a matter of how much it moves it with the movement you're doing. Rebounding proponents cite a study done by NASA which extolls the virtues of rebounding. NASA wanted an exercise that rebuilt muscle mass and bone density quickly, because astronauts lose both like crazy when they're in zero gravity. It's not the end-all, be-all study that a lot of these people claim it to be, but it does support rebounding as a much more energy efficient way of exercising and building muscle mass than running is. It's also much better for your joints, as the impact force is spread out over your entire body as opposed to concentrating on your ankles, knees, hips and spine. (this is provided that you have a good trampoline, and don't have injuries contraindicating use). And it strengthens bones quickly. But that's just one study. And there wasn't anything about lymph movement in there. I've found some anecdotal evidence - one woman wrote a review about a rebounder, saying she had a thermal image of her breast taken (in place of a traditional mammogram) and had a few areas light up (cancer = increase in cell division = increase in heat) as spots to watch. She started rebounding to try to basically prevent it from progressing to cancer, and the next year she claims the same test showed 100% normal heat distribution. But who knows what actually caused that. Anyway. I wanted to say that I have some anecdotal evidence of my own. I've only been using the rebounder for about 5 days, and this really could just be coincidence. Maybe I'm having a good day. But I took a shower this morning and I glanced down at my feet. Instead of their normal deep red/borderline purple color, as always happens in the shower, they were a bright red/pink. They looked much less alarming than they usually do. Placebo effect or not, it's encouraging.
  17. Rebounding (aka jumping on a trampoline) has interested me for a while. It's got a pretty sizable following of people who claim everything from that it helps improve circulation to that it can help cure cancer. I buy into the ideas about lymphatic fluid movement, and I can see how that would be beneficial for many conditions. Plus, it's really fun. The good rebounders (low impact, don't turn your ankles in, last a long time) are annoyingly expensive, so I waited until Black Friday (half off!). It arrived yesterday and I've been hopping on it for a few minutes every hour or two. My heart rate goes up a bit, but not enough to make me sick. I feel it doing...something lol. My legs are sort of tingling right now. Not in a bad way, or a painful pooling way. But it's noticeable. I think it would be possible for this type of exercise to help with pooling, in a number of ways. That's what I'm hoping for, at least. I dread walking on the days that I'm severely pooling. It just feels like all my blood vessels are a minute away from popping. If I can do something for it without using meds or compression stockings (make me cramp), I'm definitely in. Has anyone else tried rebounding?
  18. It's an interesting concept...but I think this site may self-select and seriously skew your results. An English speaking site will attract English speakers. For example, England is between 50 and 55, so is the whole of the island of Ireland. The mainland US between 25 and 50. The most inhabited parts of Canada lie in between 42 and 55. About 85% of Australia is between 20 and 50, New Zealand is between 37 and 47, and South Africa between 20 and 38. (I had way too much fun with that map you gave us!) That covers all of the lats people selected, with a trend toward smaller numbers in the lesser populated areas. Also, and I don't mean this in a derogatory sense, but POTS is more of a first world problem. I'm sure that people have it in 3rd world countries, but those people might not be able to go to the doctor. In countries where there's 1 doctor per 100,000 people, no one is going to care if you're not actively dying. And most of those people who do have it probably don't have access to the internet. Or speak English.
  19. Oh, your poor cousin. My gastroparesis has, thankfully, calmed down over the last year (one of the small mercies of POTS, that gastroparesis associated with it can potentially go into remission), but I remember the misery of near-constant nausea. It would be physically painful for hours after eating. Ugh. My least favorite symptom. I didn't want to take the Reglan I was prescribed, after reading the black box warning. The possibility of permanent facial ticks didn't seem worth it to me at the time. Instead, I used massive amounts of ginger. I always had crystalized ginger or Chimes ginger chews in my purse, and I kept a few bottles of Reeds Ginger Beer at my desk at work. The key is to make sure whatever you use has real ginger, and that there's a significant amount of it. If it doesn't taste spicy/burn a little, it won't do you much good. A couple of pieces of Chimes seems to at least take the edge off the nausea and make it bearable. Plus, they're actually not bad tasting, candy-wise. My mom uses them when her chemo makes her nauseous, too. My preference is the ginger beer, as the ginger and carbonation seem to be a good combo, and liquid is easier than solid when you're on the edge of puking. But the Chimes are portable. Most vegetables will make your cousin miserable. Even in smoothies, even pureeing the heck out of it with my vitamix, it rarely ended well. I juiced my veggies when I could - that helped a lot. Completely fruit smoothies, on the other hand, I didn't have a problem with. Meat has a tendency to sit in your stomach, even without gastroparesis. I'd avoid it if at all possible. Fat, to a lesser extent than veggies and meat, gave me trouble. Carbs, unfortunately, seem to be the best bet for most people. It's a frustrating situation of trial and error. And what makes you miserable one day may not the next. My final advice, take it for what you will, is that if your cousin is the type of person to fight and swallow back the nausea, they should consider coming up with a limit where they'll let themself throw up. If the nausea was so bad that I couldn't get out of bed, or if it hurt so much it brought me to tears, or if I had spent over 5 hours on the verge of throwing up, then I would stop fighting it and let it happen. Not a pleasant experience, but so, so much better than those other scenarios. Not something I would recommend often, because of tooth erosion and esophageal irritation, but it has its place. I hope your cousin figures out what works for them quickly.
  20. I kind of know what you mean. I grew up in a family where weakness wasn't really tolerated, so I learned to push through everything, including POTS - at least, before I knew I had POTS. Once I found out that it wasn't laziness that made me want to lie down, I started to give myself permission to actually do it. But, because I had lived so long just dealing with the symptoms, I know that in all honesty, most times I don't NEED to lie down. I was still conscious on the tilt when my BP dropped to 70/20 - it takes a lot to incapacitate me, haha. A couple times a month I'll ignore my symptoms, be really wrong, and end up having my vision white out or nearly throwing up. But those are the only times I don't feel a little like I'm exaggerating. That's probably more of a psychological issue than actual exaggeration LOL. But I do understand how you feel.
  21. Well, he's right. Tachycardia is what our bodies do in response to blood pooling - and beta blockers dull that response. Our bodies realize that not enough blood/oxygen is making it to the brain and they want to keep us from passing out. But, for me at least, the tachycardia makes me feel worse than the presyncope that comes without it. If your cardio doesn't want your HR artificially slowed, I'm guessing he'll pick another avenue of attack. Something like Midodrine, to fight the pooling, or Florinef to raise your blood volume so that whatever blood pools will be a smaller percentage of the total. That's fine. Both could indirectly lower your HR. Different strokes. I very much doubt that toprol caused your POTS. It doesn't affect the receptors that tighten the blood vessels in your legs, plus it's cardiospecific.
  22. Does anyone else have this? It's something I've recently noticed. You have to really look to see them, but they're creeping up my legs, dozens of tiny red dots from my ankle finally stopping around mid-calf. Is this because of pooling? I'm assuming yes, maybe the pressure of the pooling is breaking capillaries... I haven't been taking midodrine for about a year now, managing symptoms with fluids and other meds (and just kind of learning to live with some, including the aching, purple legs). I wonder if that's why its happened, bc of the increased pooling, or if I've always had them, just never looked close enough at my legs. Sigh. Does anyone know if this is permanent? Not the worst symptom to have, but I'm kind of irritated.
  23. A college friend of mine and I diagnosed me. She has POTS too, but she's been severely symptomatic since her early teens, though it's gotten slightly better over the last decade. I, on the other hand, have been gradually gaining momentum since my teens. Our symptoms differ enough - and mine weren't all that bad in college - that we both recognized that there was something off with me, that I understood what she was going through a little more than I probably should, but it never clicked with either of us that I might have the same issue. At least not until I was visiting her and a few of our other friends, the year after college. She had always said that her POTS made her legs feel heavy, because of the blood pooling. Achy and full. And my legs had recently started pooling pretty badly, though I didn't recognize it for what it was. I just knew they ached in a weird way. So we were at dinner, and I randomly mentioned that I understood what she was meant by heavy legs, thinking that it was just one of those weird ways where I understood her. But the blood pooling stood out to her as something no non-POTS person would get. So we spent the night comparing symptoms and found a lot of overlap. In my defense, I had been raised with more of a 'suck-it-up' mentality, so I hadn't recognized some of my symptoms as being abnormal. When I got home a few days later, I did a little research and luckily found a POTS doc 10 minutes from my house. I called her and explained what I thought over the phone, she agreed, and after my appt later that week I had my diagnosis.
  24. I haven't heard about fish oil competing with vitamin D (though I did just hear the fish oil for the cardiovascular health premise was revealed to be based on a SERIOUSLY flawed study - the investigators found a fishing town where no one was dying of heart attacks, decided that their diet must be the reason and poof! a billion dollar supplement industry was born. When really what the investigators didn't realize was that people in that town lived a hard life and died before the age when cardiovascular disease presents itself. So of course there were no heart attacks. But I digress.). What dose of vitamin D are you giving him? I will say that my vitamin D levels are super low (I once had a score of 3) if I don't heavily supplement. It took 8 months of first 6 weeks of 50,000IU/week (prescription) followed by 10,000 IU every day to get up my level up around 80, where I wanted. I'm sure some people will disagree with ignoring the RDA, which I think is only about 600-1,000 (though the president of the American Dermatology Association recommended 2,000 to a pale listener on Doctor Radio last week.) But I combed pubmed for info and there were a number of publications supporting a daily high dose of vitamin D. And no reported cases of vitamin D overdose. One paper speculated that months of 40,000 daily would be needed to even get close to an OD. The Vitamin D Council agrees. A higher dose of supplement may be something to consider.
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