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Libby

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Everything posted by Libby

  1. Propranolol made me feel just...blah. A boneless lump on the couch. Metoprolol xl (toprol) worked much better for me. I can't remember which doctor said this to me, but I'm pretty sure it was one of the more competent ones. When I mentioned that propranolol made me feel awful but metoprolol was ok, they said they weren't surprised at all. Something to do with propranolol being non-cardiospecific where metoprolol is, and how both drugs cross the BBB, but propranolol does it at a higher concentration.
  2. I was checked for both when I was first diagnosed with POTS. Vitamin B12 was normal, but D was incredibly low. 3ng/mL. I'm kind of surprised that my bones hadn't turned to mush. I had been having these electric shocks, I guess would be the best way to describe them, down my shoulders and arms. At the time, because POTS was causing a lot of weird symptoms, I just assumed it was part of POTS. But after a few weeks of 50,000IU vitamin D3, they disappeared. That was really the only benefit that I noticed. I'm sure there were others, especially cancer prevention, but those shocks made me feel awful. And my skin was hypersensitive when they were firing, like I had a fever. I hated having anything brush up against me. Getting rid of them was a huge plus, even if it was the only plus I was conscious of. Regarding the vitamin D levels in people with dysautonomia vs the general population, has there been any studies on whether the low vitamin D levels that are frequently found in patients are the cause or the result of the dysautonomia? If heat and exercise make you feel worse, you're not likely to spend much time in the sun. I've only seen research that states that there is a frequent comorbidity, without many comments on the correlation and causation.
  3. It might not be my most uncomfortable position, but it definitely can be close to it. I can slouch for hours (and frequently do at work) but the moment I try to straighten my spine, it feels like my BP bottoms out. My hearing gets muffled, my lips feel cold, and I start having small waves of nausea roll through my stomach. I'm super paranoid about ending up with a permanent hump on my back, so I'll tough it out as much as I can - but it's definitely a problem.
  4. My insurance would only pay if the test was being ordered for syncope. I had never passed out at the time, but I was blacking out nearly every time I stood up - my GP initially put presyncope on the prescription and it got kicked backed by insurance. Presyncope wasn't a valid diagnostic code, apparently. Thankfully, my doc didn't have a problem with switching it to syncope and my new-at-the-time POTS neuro used the test to confirm my diagnosis. But the right diagnostic code may be the difference between insurance covering it or not.
  5. 70/22 on my TTT. The nurse was impressed. She literally said, "I don't know how you're still conscious." Practice. LOL. She also said that most people were begging to be put down long before they got to that low a BP. The only reason that I wasn't was that I honestly forgot it was an option. My hr dropped from 155 to 60 right around then too, so they ended the test. Thankfully.
  6. I love juicing. I really do think that removing the fiber gives your body the chance to absorb nutrients it wouldn't otherwise be able to squeeze out of the veggies. Before I did my first juice fast, I read to not be surprised if, around day 5 of the fast, old injuries started to ache - that by then your body had more energy and resources to deal with lingering issues that it otherwise couldn't address. I thought it was BS. Until it happened to me. I can't say for sure that things were 'healing', but something was definitely happening. Despite some issues with lightheadedness, I've had nothing but good experiences. I just feel good whenever I juice and juice fast. I have an omega vert 350 HD. It's an upright centrifugal masticating juicer. The traditional centrifugal juicers use centrifugal force to whip the juice out of the fruits and veggies. The problem there is that they whip oxygen into the juice, which give you a low quality juice that goes bad within 24 hours (at most). Not awful if you plan on drinking the juice right away, and generally easier to clean than masticating juicers, so they definitely work for some people. It's the kind the guy in Fat, Sick and Nearly Dead uses. The masticating juicers use pressure to squeeze the juice out of the fruits and veggies. It cuts down the amount of oxygen that gets mixed in by A LOT, so your juices can last up to 72 hours (though the sooner you drink it the better!). The quality of the juice tends to be better than the centrifugal - more concentrated, less likely to separate. But in general, they're pains to clean and take up a lot of space on the counter top. The upright centrifugal masticating juicers are, in my opinion, the best of both worlds. There's a bit of centrifugal action going on (around 40rpm, versus like 8,000rpm), that helps with the clean up, a smaller footprint on the counter, and the high quality juice that comes with a masticating juicer. The downside when compared to the tradition masticating juicer is that it doesn't do as great a job with leafy greens (spinach, kale, don't even try wheat grass). The downside when compared to the centrifugal is the price. Centrifugals can go for as little as 60 dollars, where as I paid $300 for mine, on sale. The golden rule of juicing is 80/20 veggies/fruit to make sure your not downing massive amounts of sugar. The one real exception to that is to remember that carrots are very high in sugar, so it's probably better to consider them fruits. When you're first getting used to juicing, if a drink is unappetizing try juicing in a quarter/half of a lemon or a few slices of apple (preferably green). That should cut the bitterness or add enough sweetness to make it palatable. I also have a vitamix, which I love for smoothies. Nutribullet doesn't chop things up nearly as well (if you search youtube for vitamix nutribullet comparison, you'll find a video comparison of how well they both work, how finely they chop etc) and if the point of the smoothie is to manually digest the veggies/fruits as well as possible before you drink them, to encourage maximum absorption, that's something to consider. Vitamix.com sells refurbished models for a great discount. That's how I bought mine. This website is a great resource for juicer and blender comparisons. He sells a lot of great stuff, but if you look on the left of the page, down at the bottom of the link menu you'll see an Education section. So useful. The guy who runs it makes youtube videos that are great. He's the one who does the comparison between the vitamix and the nutribullet. He'll demonstrate and compare basically everything out there, and give you tips on how to use them. He has some great videos on how to clean the juicers too - I can clean mine in less than 5 minutes, thanks to his tips. Easy Peasy. As to recipes, most of the time I just throw in whatever veggies or fruits I have lying around. If I'm juice fasting, I like to have something sweet in the morning, so those will usually include grapes and blueberries and apples, along with a cucumber and some celery and dark leafy greens. I'll start replacing the fruits with more veggies as the day goes on, bell peppers, tomatoes, spinach, kale, beets. Parsley give a fresh flavor, if you're looking for something a bit different. So does basil. One of my favorite drinks (even if it does totally violate the 80/20 rule) is watermelon, blueberries and grapes - heavy on the watermelon. It's delicious and SO refreshing. I also really like a 25/75 split of carrot and celery juice. Celery has a bit of a bite to it when it's juiced and the carrot just mellows it out. Love it. Finally, my 'dinner' when I'm fasting is one of my favorite drinks. 2 Tomatoes1-2 Garlic Cloves Peeled1/4 White Onion1 Cucumber (peeled if not organic)1/2 Jalapeno1/4 Lemon PeeledSalt (I use Herbamare) to tasteIt's like a virgin bloody mary. But so much better because it's freshly juiced. The salt was absolutely necessary, both for flavor and POTS reasons. So good. ETA: There are a lot of things you can do with you left over pulp, too! Muffins, add it to tomato sauces to thicken it - my favorite is dog biscuits (just make sure there's no grapes, onions or garlic in the pulp). My dogs go nuts for them. The pulp, plus a bit of peanut butter and some oatmeal. Bake for 45 minutes and I've got some happy puppies.
  7. Yesterday, I woke up and all four of the fingers on my right hand were swollen and tight. I didn't do anything to trigger this. It just happened - first in my ring and middle fingers (it's still the worst in those two) and then seemed to spread to my pointer and pinky. My thumb is fine. A quick google shows that Reynauds (which I have) + swollen fingers often = Scleroderma. Which wouldn't surprise me - I already have autoimmune issues with Hashimotos. I'll be making an appt with my doctor and probably going for blood work to see what my ANA is. I just really don't want to have another issue to deal with right now. edited to remove whiney-ness. back in the saddle.
  8. No, I'm not saying that there's no treatment. I'm saying that if she has POTS, I really don't think that any results that you may get from the the tests will change the course of treatment. At this point, you have to decide if you want them to satisfy your own curiosity, not for any diagnostic value. And I'm also saying that the psychological impact of having imperial evidence to support the diagnosis is not insignificant. But that said, none of the tests are fun or painless. It's a trade off. As far as I know, the ultimate cause of POTS is only discernible in a small percentage of patients. Chiari malformation, EDS, Marfans, etc. There is research being done on what other factors influence the symptoms, but most of it isn't at a point where it could influence treatment decisions. In my opinion, further testing - unless there's a question as to hyper POTS, or chiari malformation - will not give any further insight into treatment. Treatment is trial and error, seeing what works. It's a frustrating process. But I hope that your daughter's doctors are able to determine an effective plan as quickly as possible.
  9. I have mixed feelings on this. To test or not to test. I read an article not too long ago that was discussing how to cut unnecessary hospital costs. Get rid of unnecessary tests was one option - and the TTT was specifically cited as a test that is generally unnecessary. A poor man's TTT can give a pretty good indication of whether a legit TTT would be pos or neg, especially for POTS. When I first suspected I had POTS, rather than wait for my GP to figure things out, I made an appointment with my (luckily) close by POTS specialist neurologist. My GP had already prescribed a TTT, but my then-new neuro said not to bother - she knew I had POTS, I was already on a few meds from my GP that were helping, and the TTT wouldn't change my treatment. Another example - when I started having constant nausea, I had a gastric emptying test which came out normal, but didn't stop the gastroenterologist from (rightfully) diagnosing me with gastroparesis. Do I think that you'll get much, if any, info that will change the course of treatment? No. But I do think that the peace of mind that comes with knowing what's actually going on is worth something. Even though my neuro told me not to bother, I ended up going through with the TTT. The cardiologist who interpreted my results diagnosed me with Inappropriate Sinus Tachycardia (nope) and Neurocardiogenic Syncope. 1 out of 2 isn't bad. My POTS neuro looked the results and said, basically, I told you so. And then told me that a HR of 155 wasn't that bad. Hahaha. I beg to differ. My point is, even though my treatment didn't change, I'm glad that I did the tilt test. It felt good to know for sure, especially with a syndrome that is so often misdiagnosed. Proof was good for my peace of mind.
  10. My POTS neuro refused to address the nausea issue. She said that it could be anything - gallbladder issue, blockage etc - so she made me go to a gastroenterologist. Which was fine and I don't blame her. He did an upper endoscopy, biopsied for celiacs and H. Pylori and commented on the look of my stomach/esophagus. Honestly, I didn't learn much other than how annoying medical collection agencies can be when they want payment. A delayed gastric emptying study was done, and came out normal. But I was still diagnosed with GP based on symptoms. And then I was told there wasn't a whole lot to be done for me. None of the drugs offered for GP are great. Most if not all have 'black box warnings' which mean they can come with some serious side effects. IMO, and believe me I really do understand your pain, but I wouldn't use them unless I was seriously in danger of malnutrition or my quality of life was almost nonexistent. The side effects are scary and can be permanent. I'd really recommend talking to the GE about diet and other ways of managing GP without drugs. I think that going to see a specialist is a good idea, just in case it's something else, but if it turns out that it is GP, there's little that I learned about managing it which couldn't be found with a quick google search. If you start feeling horrible or if you're concerned for your immediate health and safety, move your appt up. The peace of mind is worth it. But as long as you're still eating some, drinking fine and not experiencing too many other symptoms (and none of them serious), I don't think that waiting a bit for your appointment will be too detrimental. Again, if you're concerned for your health, move it up. Regarding the smoothies - I don't blame you for not wanting the store bought kind. They're pasteurized and nutrient-less imo (and the opinions of a lot of nutritionists). What I would recommend doing is spending an hour or so prepping a lot of fruit at once. Ziplock baggie everything into individual smoothie sized portions and pop them in the freezer. Frozen fruit = no ice necessary, individual portion sizes eliminate annoying measuring. You'll need to be sure to add in some yogurt or juice to keep it from being just a cup full of frozen fruit mush, but all things considered yum!
  11. Welcome to the club. Not a great thing to have to deal with, but I completely understand how relieving it is to finally put a name to what's happening. ^this. More 'stuff' in the blood (albumin is the most abundant protein in your blood), the more concentrated it becomes. Your body likes to keep the everything at a specific concentration, so it will make you retain fluid and increase blood volume to make that happen. Side note: the brain's main source of energy is glucose, but it can survive on ketone bodies (from protein) when on a very, very low carb diet or fasting. Protein won't really factor into feeding the brain unless carbs are eliminated.
  12. No, this paper is actually good for us. The paper is saying that in a previous study(s), researchers found that POTS patients' heart rates decrease over the day when only given a placebo. The author of this paper suspected that the decrease in hr wasn't a psychological response to the placebo (implying that the other papers did think that...grrr), but rather an actual cardiovascular response in POTS patients - i.e. heart rate decreases in all POTS patients over the course of the day, regardless of whether they thought they were taking meds or not, because of something to do with POTS, not because of wishful thinking. So these researchers took POTS patients and gave them all a placebo in the morning. They told half of the patients (group A) "We are giving you a placebo. This will not lower your heart rate at all." and the other half (group B ) "We are giving you an active drug. This will lower your heart rate." If the lowering in heart rate were psychological, they would have seen a lower heart rate only in group B - the group who thought they were getting a drug. However, they saw the same response in both groups. That means that, regardless of whether you think you're on medicine to lower your HR or not, throughout the course of the day your heart rate WILL decrease. Whatever happens is not happening because of the placebo effect. They mention how important the placebo arm is in studies only because this indicates that POTS patients' HRs lower over the course of a day, without medical intervention. So if a researcher gives a HR lowering drug at 9am and checks the patient 4 hours later, any decrease in the HR cannot be attributed solely to the med - because the patient's HR would have dropped even if s/he hadn't taken the med that morning. There needs to be patients in a placebo arm to show how much the HR would drop without the med in that same time period, to see if the med had a statistically significant effect. Also, it suggests that the time of day that you have your TTT would make a difference in your standing HR readings, which could affect your diagnosis.
  13. I was just reading an article about this in pediatric POTS patients. Orthostatic headaches are a predictive symptom of POTS, according to the author. I've gotten them for as long as I can remember. Not constantly, but a couple times a month. Absolutely no headache while I'm lying down, but the second I try to stand my head just THROBS. Ouch.
  14. I can't tell if I'm seeing connections where there are none or not. But I've noticed that when I'm feeling faint/nauseous, my posture becomes horrible. Hunched down over my desk or just slouching. I don't think it's lack of energy so much as it's helping with my bp. I'm not tired, not more than usual, I just really feel compelled to slouch. Just me?
  15. Yeah, I just recently had my first experience with these on my fingers, after a particularly cold day (around 9F), when I stupidly went out without gloves. Blisters around the tips of my ring and pinky fingers of my right hand, with my fingers being red and swollen. It's taken a few weeks for them to go away - they're still a bit swollen at the joints and a bit tender where the blisters were. I really hope they won't become a recurrent thing. My doctor did recommend that I put steroid cream on the blisters. That did help a bit, I think.
  16. A friend of mine was diagnosed with POTS years before I was. The first thing she said to me when I was diagnosed (after we got over the fact that we talked about her symptoms all the time, and I could always sympathize more than any one else, but it never crossed our minds that I might have POTS too) was "well, that explains why you hate stairs!" I'm not sure why stairs are so awful, though. I avoid them whenever possible. Honestly, I just don't care if I could be slightly increasing my tolerance by taking them. It's not worth how bad they make me feel.
  17. Not too weird! There's not really such a thing as TMI around here. Gastroparesis nausea can be one of the worst symptoms, imo. There was a stretch of time where I would have nausea after every single meal I ate. Sometimes it wasn't too bad and I was able to ignore it, but sometimes I felt so awful I was curled up and crying. About 2 hours after I started feeling nauseous, I would feel my stomach suddenly start to churn again and within minutes I would feel fine. About twice a month, I would end up vomiting before my stomach started digesting again. Which meant (sorry for the grossness!) that it wasn't really hard to tell exactly what I had for dinner. Personally, I did have other GI symptoms. I had diarrhea for a solid 2 weeks before the onset of the GP, and then off and on from there. Everyone's different though. I don't believe that you have to have constipation or diarrhea to have GP. It's just something that can happen along with it. I went to see a gastroenterologist and he told me that there's not a lot to be done for GP, unfortunately. Diet modifications are a large part of the treatment. If you google gastroparesis diet, you'll find a more detailed explanation, but in general carbs are your friend and raw fruits and veggies are to be avoided. The fiber makes them too hard to digest and they end up sitting in your stomach for an absurd amount of time. Making them into smoothies can sometimes help, making them easier to digest. For me, fruit smoothies were great and I digested those fine. If I stuck any veggies in the smoothie though, I was in for a world of pain. Juicing on the other hand I could stomach fine, fruit or veggie, it didn't matter. Meat is another food that seems to aggravate the condition. That I avoided whenever I was symptomatic. Ginger beer (non alcoholic - like ginger ale, but slightly different brew process. delicious!) became my constant companion. I like Reed's. Has to have real ginger. Also, I bought a 6 pound bag of Chymes ginger chews off of Amazon. They were also in the organic section of my local grocery store. Two of those when I'm feeling nauseous work wonders. My mom is on chemo and she loves them too. They really work. I didn't bother with any medications, but there are a few - only one that's legal in the US, I think, and another one or two that you can get from Canada. I almost took a prescription from my gastroenterologist for Reglan - which was supposed to stimulate the stomach to churn - but after I read the list of potential side effects, I decided that I'd rather stick with ginger and suffer than risk a potential, permanent facial tic. My GP symptoms did get better, after about a year and a half of dealing with them. Up until a month ago, I hadn't had any nausea in nearly 7 months. I've had a few GI issues recently, annoyingly, but I'm going through a mild POTS flare so that's not too surprising. But it can get better for POTS patients, unlike for a lot of other GP patients, which is a bit of a silver lining. I hope you feel better!
  18. I hate that. It happened to me too, a few months ago with my adderall. At the time, I had enough left over from earlier prescription fills to not have to take the new generic (after I realized it was awful) and I just tossed it in a drawer and found a pharm that stocked my old brand. But I forgot to get a new prescription slip and ended up having to take the sub-par pills yesterday and today. Today was the worst day, symptom-wise, that I've had in over a year. I've had pharmacists act like I'm insane when I make them tell me the manufacturer before I drop off my slip - one gave me a lecture about how all the generics are the same, ha - but it really does make a difference. And especially with controlled substances, trying to get a new bottle more than once a month is just a PITA - not to mention a waste of money. I hope the old pill helped! It's never fun when your meds get messed with.
  19. "You're lucky to have a doctor who understands. When I was in medical school,I used to spend a lot of time sitting around studying. When I would stand up, sometimes I would get a head rush. So I get it." - a cardiac elecrophysiologist whom I obviously never went back to.
  20. I get it too. Depending on how symptomatic I'm feeling in general, it will either happen once in the morning when I stand up and stretch,or every time I stand/stretch/reach for something/pee. It will also either black out my entire vision or just the edges, depending.
  21. Becia, I think I know the game you're talking about. It's very similar to guitar hero, with the notes speeding by and disappearing into the distance. It's common in everyone, not just POTS people. It's even in Urban Dictionary. Guitar Hero Effect -" The trippy change in vision where everything seems to be constantly moving up after playing guitar hero for extended periods of time" Khaarina, I don't really play video games - haven't played Guitar Hero in a year or two, actually - so I can't be of much help with the Call of Duty reaction. I'm sorry it's happening to you, though! I hope someone else has some better input.
  22. Most doctors are not educated about POTS. The test, like I said, is really intended to diagnose syncope - using it for POTS is akin to using a drug 'off-label'. The cardio's office where I did mine wouldn't even schedule it until my GP wrote 'syncope' on the prescription note, despite the fact that I had never passed out before. They said insurance wouldn't cover the test for any other reason. Hospitals/doctors offices have protocol to follow. Sounds like lulusoccer found a place with a POTS protocol (or a doc that knew enough to override the syncope protocol - lucky!), but most places don't. And most experiences I've heard of don't have a doctor monitoring the patient, but a nurse. I don't think a nurse would have the authority (or want to risk their neck) to cut a test short without an order from a doctor. I don't blame them. I like to think of it as two diagnoses for the price of one. Statistically speaking, you probably won't pass out. If you do, it's really not that bad. It's not fun, and I wouldn't want to do it again, but it's over pretty quickly. And you feel better the second they lower you back down. I can't recall anyone being triggered into fainting episodes by a TTT, after the TTT. Anything's possible, I guess, but I wouldn't worry about it if I were you. Really, the most I've read about happening is that you may feel a bit more POTSy for a day or two afterwards. Personally, my tolerance for standing/sitting up was shot for a couple of days - I became pre-syncopal more easily and was a lot more tired in general. Again, not fun. But worth it to never have the diagnosis of Anxiety given to me, ever again. Also, knowing that I actually did have a fainting reflex made me actually pay attention to my body's cues, which in turn has helped with my symptoms.
  23. TTT is used for POTS diagnosis, but wasn't developed for POTS diagnosis; its original intended purpose was to identify vasovagal syncope. Which is good news. The protocol shouldn't change based on your doc's knowledge of POTS. Though there are a few TTT protocols out there, all are similar to what millyaulait described. Generally, you lie down on the table and they place the bp monitor and EKG leads and a few safety straps to hold you on if you pass out later. Some people get an IV placed - I did and I can say that if that's an option, do it. The fluid really helps the recovery. The bp monitor will inflate every 1-3 minutes throughout the test.. They let you relax, lying down and with the lights dimmed for 10-15 minutes to get a baseline heart rate and bp. Then they tilt you - the most common angle is 70 degrees. Aside from being a bit safer to be leaning against something if you pass out, 70 degrees allows gravity to pull your blood down like it would if you were fully standing, but without your body having to support much of your weight, so you're not engaging your leg muscles nearly as much. With so little resistance, if blood is going to pool it will do it much faster than if you were simply standing. That's why many people experience a much quicker and more intense reaction with the TTT than if they were just, say, waiting in line. I had never passed out before my TTT, but it took me barely 12 minutes to do it on that table. Surprised the heck out of me - I spent the first 10 minutes wondering if someone had turned the heat up and cursing myself for wearing sweatpants. The nurse who is monitoring you should notice your BP drop, if you do pass out. Mine got a final reading, lowered me down, opened my IV to get fluids in and raise my bp as fast as possible, and then let me just lie there and try to stop feeling like death for about 10 minutes. She did tell me that most people that are affected by the tilt are begging to be lowered down by the end of it, so if you can't help yourself from asking don't worry. They're used to it. Not everyone with POTS passes out. One study, if I recall correctly, put it at about 30%. Though, honestly, I'm glad I passed out. My test was structured so that the initial tilt was 45 minutes and then, if I hadn't passed out (remember, its primary purpose is to diagnose vasovagal syncope), they would have lowered me down given a stimulant to kick my heart into high gear, raised me back up and watched for another 15 minutes to see if that added stressor provoked a vasovagal episode. Not everyone's test has that same timing. All have you tilted for at least 10 minutes, though, which is all the time that's necessary for a POTS diagnosis. Not for a VVS diagnosis (the average time a person passes out is around 25 minutes in), so I don't know what use the protocols that tilt people for 15 minutes are for the test's intended purpose...but whatever. Good luck! The test is good to have, proof that it's not in your head, but the most important thing is to have a knowledgable doctor (or at the very least one who is willing to learn). I'm glad you're going to Mayo afterwards. Good luck! Let us know how it goes.
  24. I've been on both, but I selected 'I have not taken this medication' for florinef because headaches had me off of it after 3 weeks. Propranolol increased drowsiness for me - it looks like the increase/decrease options may have been left off the poll for that symptom.
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