Libby

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.

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.

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.

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.

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.

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.

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?

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.

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.

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!

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.

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.

Aw, thanks Sarah!

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.

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?