Libby

Hi Chlay! Sorry you have reason to be here, but glad you found us! Let's see. Things I wish I had known... - Compression stockings work to keep your blood from pooling, but they are UNCOMFORTABLE. I have 3 pairs sitting in my drawer, rarely used, because they make my legs/feet cramp pretty badly. Some people love them, but I wish I had just gotten one to try. - Ginger is just as effective as over the counter nausea meds. And ginger beer is much more delicious. - If you haven't already, I'd recommend getting your vitamin D and thyroid hormone levels checked. A nearly non-existant level of vitamin D was the cause of a bunch of annoying symptoms that I had just thought were part of POTS. Same with thyroid - the main symptom is fatigue. I hope that at least contains something you can use, haha. But either way, welcome!

ukwildcat - one reason is they over-test is because if they don't, and you end up suing them for whatever reason, you can use that as leverage in the malpractice suit. Defensive medicine, at its best (sarcasm). Every patient is a potential lawsuit. Studies have shown that it's much more effective to just care about the patient. We generally won't sue someone we like, even if an error is made.

Wow, Rich! You could open your own BB&B! LOL. Thanks for the run down. I've looked at juicers before, but then I read about how hard they can be to clean. I ended up getting the vitamix to try. Whether I like it or not, I'm going to return this one and buy a refurbished one I think. I've made two smoothies, one with just a random mix of spinach, carrots, celery, banana, pineapple and blackberries. A little weird - I'm not used to the spinach-y taste - but not bad. Today I made a fruit smoothie with banana, pineapple (with core!) and a whole apple (minus the seeds - cyanide), then a little ice and few scoops of greek yogurt. And it was DELICIOUS. And incredibly smooth. Thanks Kelly! Your model is exactly what I'm thinking of ultimately getting (though I'm looking at the next generation one too, because I'd love it to fit under my cabinets). It sounds like the refurbished models are only used a handful of times, for demonstrations/reviewers, and thoroughly checked, but I was wondering how well it would hold up. It sounds like they're built to take a beating. Have you had any issues with it? The refurbished ones knock 2 years off the normal warranty, but then they offer the extended warranty for $75 more. Worth it or not, do you think? I had been wondering about the flour. My ultimate goal is to go gluten free, so it probably wouldn't be wheat but I might try rice or almonds eventually. Do you use the dry container just to keep the other scuff-free or is there another advantage?

I just thought this was funny. I finally had my appt with a gastroenterologist today. The nurse took my history, we had a good laugh about POTS - the acronym, not the syndrome itself, because she had no clue what it was - before the doctor came in. I was ready for the usual reaction from the doc. You know it - when they hear POTS and just sort of act like they know what you're talking about. And I got it. He heard tachycardia and connected the beta blocker and that was it. But he was nice and thorough otherwise, so when he left I felt really good about the appointment. BUT THEN, five minutes later (I was waiting for the nurse to come and get me to schedule the my endoscopy/gastric emptying/abdominal ultrasound (fun!)), he came back. To ask me about my POTS. Because it's a dysautonomia. And gastroparesis is a symptom. LOL. Translation: he left and googled it. But I'm okay with that! Heck, I'm ecstatic about it. I don't expect every doctor to know everything. I do expect them to educate themselves once they realize they're out of their depth. And this one did, so I'm happy.

Hm. I hadn't looked into Nutri-Bullet, but I will now. A lower price point would definitely be nice. Thanks!

haha dysautonaumia warning, love it. I've been trying to figure out a way to change my diet. I want to go gluten-free for hashi's, but if I cut out flour I have no quick meals. Especially on days my gastroparesis is killing me. Meat is out (which is fine, I don't love it anyway), and so are high fiber veggies/fruits (which is SO SAD). They're just too hard to digest as-is, but I'm thinking that a smoothie with everything already manually digested, more or less, would do the trick. And I like those juices, Odwalla is delicious, but they're crazy expensive for more than the occasional treat. Plus, I'd rather know exactly what's going into my food. I think I'll go to Bed Bath and Beyond and get one to try out. I have a coupon and they have an unlimited return policy, so win-win.

Haha this thread is reminding me of my acting class. Sense memory exercises, remembering all sensory aspects of an experience (like sledding down a mountain, the smell of the cold air, your moist, hot breath condensing against the scarf covering your mouth, wind whipping in your ears) are a big part of a few of the approaches. Uta Hagen's books are full of it. Ice cream is definitely a good one, mmm.

Do you like it? Is it worth it?

Thanks for sharing AG! It's really good to hear how others have dealt w everything. It does make me feel less crazy. My endo appt got moved up to yesterday. I had just gotten my labs in the mail the day before, so I knew what we were looking at. TSH was surprisingly good. 0.76. The last labs had it at over 4. My 88 mg dose hadn't increased but I did switch to taking levothyroxine at night, bc of my other meds and bc I'd read a paper which implied that a nighttime dose was better absorbed. I have been tested for TPOAb, TgAb and had my T3 looked at in various labs along the way. No rhyme or reason for when, at least not that I could figure out. No measurable TPOAb, but I did have TgAb initially of 288. The last measurement from June had it down to 157. From what I've gathered, having TgAb w/o TPOAb is pretty uncommon. The National Academy of Clinical Biochemistry is recommending against testing for TgAb in areas where iodine sufficiency is the norm. For once I'm glad my doc isn't up on current issues. Haha. And as for the T3, it was only once she didn't get the free t3, so I'm not sure how useful the readings are but I was right in the middle of the normal range. I had an ultrasound last year which indicated inflammation but no nodules. My GP refused to call it Hashi's (don't know why, that's what having the Abs and inflammation pointed to), but the Endo agreed with me that it is. With the calcium, she also agreed that it needed to be checked out again. She spent a few minutes looking between my glucose and cholesterol, comparing new and old labs, but finally said that we would leave those to my GP for now. Both issues kept popping up in my thyroid/parathyroid research so I'm guessing she was debating the value of investigating further and decided against it. Which was ok with me, because she also ordered lab work for ionized and serum calcium, all the thyroid hormones and Abs, and for parathyroid hormone levels. If any of those come up abnormal, I'll press the issue. My glucose was 104 with the normal range ending at 99, so prediabetes. But I'm not overweight and i don't eat a lot of sugar, so type II diabetes really shouldn't be something that I should be worrying about. My calcium wasn't terribly high -10.5 with the normal range being 8-10.2 - but I want to know now if this is an issue, not wait until I have osteoporosis and kidney stones. tl;dr - had the appt with endo, she's checking my parathyroid, blood work will be back in a week or so.

My GP and the testing center told me to stay on the meds...but I went off them any way. From what I'd read about ttt, I didn't want to go through it twice. And I didn't want an inconclusive ttt in my records. It's enough of an uphill battle sometimes without giving a skeptical doc ammunition against you. Hr jumped 60 bpm immediately, passed out after 15 minutes. The cardio at the testing center diagnosed me with IST and NMS, but I took the results to my new (at the time) POTS neuro that I referred myself to and she was quick to change IST to POTS. Side note, while fainting is not necessary to diagnose POTS, there have been at least two studies that I can recall which indicate a higher prevalence of NMS among people w POTS. Dr. Grubb was an author on one of the papers, I know.

Usually during. I play in a once-a-week volleyball league, 3 games per set, and I always feel like I'm going to pass out for most of the second and third games. I know that my body won't drop until my bp is basically zero, so I play through it, but I feel like absolute crap.

Ooo, rama, yes, please post it! I was diagnosed by my POTS neuro but just through a physical exam. She pressed a bit of cold metal at various points on my skin, starting at my toes and moving upward, and asked me to tell her when I felt the cold (halfway up my shin). I had also suddenly developed this really awful burning in my feet at night. They would get very hot, swell, turn an awful shade of red, and usually wake me up at least once a night - I'd have to put an icepack on them or go walk on the cold kitchen tile. But I suspected that it might be because of the prozac I was taking (it had been giving me night sweats for the longest time), so I stopped it. Within a month or two, that aspect of the neuropathy was gone, thank god. At least for the most part. My feet still turn red, usually when my midodrine is wearing off, but only rarely do they burn - and no where near as badly. The majority of the night sweats are gone as well. Still can't distinguish between cold and hot, but I don't think that's the med's fault. It was there long before the prozac.

I don't think so. But if you're lucid dreaming, I'm jealous.

Thanks for replying Sue. You make a good point. A really, really good point. I wasn't even considering parathyroid disfunction - calcitonin immediately came to mind, especially when she mentioned sending a prescription for something, but now that I've calmed down enough to think about it, haha, hyperparathyroidism makes a lot more sense. Why AREN'T they testing me for it? Unless the prescription is for lab work. I'll have to see what comes in the mail tomorrow. ETA - targs, thank you too! I'll definitely check out that site. I did a quick search a few minutes ago, but everything seemed to end in surgery so I stopped reading. Not ready to deal with that tonight, nope. haha.

I got a call today from my doctor. Apparently, my calcium, cholesterol and blood sugar are all high. They're sending me a pamphlet for a low cholesterol diet and a 'prescription to take care of the calcium'. The blood sugar, she waved off as it could have been because my fasting was off by an hour (it wasn't). I have Hashimotos. The thyroid makes calcitonin, which lowers blood calcium levels. Cholesterol is higher in patients with uncontrolled hypothyroidism. Hemoglobin a1c is elevated in uncontrolled hypothyroidism and decreased in controlled. Why are we treating the symptoms, without addressing the cause??? Everything is pointing to the thyroiditis not being well controlled. I can FEEL my thyroid swelling. The last time I told the doctor that, she looked at me like I was insane. But, apparently, my labs are within the 'normal range' which is wrong, as is (labs keep the upper limit on their TSH range at 4 or 5 but current recommendation from the American Association of Clinical Endocrinologists puts the upper limit for TSH at 3 - even more, studies have shown 95% of people with normal thyroid function have a level of 2.5 or less.) I've asked for my labs to review them, but I'm going to see an endo. Made an appointment today for late April. Not incredibly happy about it. Apparently I only get to see the doctor 2 times before I'm relegated to her NP, office policy. And apparently, while everyone likes the doctor, the NP is a real witch. Ugh. I was hoping to avoid another specialist - and no endos around me have a good rep. But being hypo on top of the POTS is just...too much. I'm always tired. Before I was diagnosed with Hashimoto's, I was sleeping 14 hours a day. I'd go to work, come home, sleep, wake up, repeat. I didn't even recognize it as a symptom bc I was so used to just being exhausted. It got a little better with the synthroid, but I don't think that synthroid alone is cutting it, especially not if my calcitonin levels are affected. I don't want osteoporosis. I don't want atherosclerosis. They, doctors, don't seem to be on top of anything, yet I still get the impression that they want to pat me on the head and give me a lollipop when I ask educated questions instead of actually recognizing that I know what I'm talking about. I have a masters degree in oncology research and a BS in cell/developmental biology. I spent my entire academic career scouring Pub Med. Don't patronize me. I'm terrified for anyone in my position who blindly trusts their doctor. Especially if they have MY doctor.

There's very little risk of overdosing on vitamin D, despite it being a fat soluble vitamin. Relatively, there are very few examples of toxicity in medical literature. And the cases that are brought up involve infants and children 99% of the time. Federal recommendations are, with few exceptions, on the conservative side. They'd much rather harm, if it's going to come to you, happen from no action (looks like your fault) than from something that they told you to do outright (looks like their fault), imo. Harder to sue them that way. One study has indicated that 9,600 IU per day for is barely sufficient to maintain a population-wide level of 40 ng/mL, which is at the lower end of what is considered normal (30-80). But in fairness, there are studies that suggest a much lower dose is adequate, as well. I have not seen any studies which indicate that rapid restoration of vitamin D levels is inherently better than a slower climb, with lower dosages. The benefits of having your levels in the ideal range have been researched and in many cases supported, but it appears to be just an assumption that you should get them there as fast as possible. An educated guess, with nothing I can really find for/against it. But nothing to suggest that 50,000 IU is dangerous. http://blog.vitamindcouncil.org/2013/02/26/what-is-the-upper-limit-and-noael-and-are-they-justified/ http://www.ncbi.nlm.nih.gov/pubmed/21378345 http://www.ncbi.nlm.nih.gov/pubmed/22086300 That's not to say that you can't have an adverse reaction to vitamin D supplements. But that's a different matter all together.

sed/sedimentation rate and c reactive protein are both looking for inflammation. CRP can be seen as an indication of heart disease, which is probably the why the 'not cardiac' bit was tacked on by your rheumy. Anti nuclear antibody is used to detect connective tissue disorders like lupus and scleroderma. Paraneoplastic has to do with cancer, probably looking for cancer cell secretions. Hemoglobin a1c is a glucose test, looking for diabetes. That's all I got without googling haha.

I had these little electric shocks going down my arms for as long as I could remember. Very uncomfortable, but I had no clue what the problem was. Turns out my vitamin D levels were 3 ng/mL. I took the 50,000 IU capsules for 1 week, then 10,000 IU capsules daily for a few months after. In 5 months, I was up to 79 ng/mL, which allowed me to back off the supplements. I haven't had any shocks since I took the 50,000 capsules. I'd definitely recommend them.

I'm glad you found it useful! If you do think that EC is what's going on, unfortunately (that first link on google not withstanding haha) very few people seem to have 'cured' it. I've searched journals for ANYTHING that seems to have worked and I've found only one paper that even tries to suggest a treatment (I really need to stop getting rare diseases...). One patient in Brazil was 'cured' after using 10% Calendula officinalis (marigold) ointment. It's a non-prescription holistic ointment used on cuts etc, so it's not difficult to find. I used it for a few weeks, but I didn't see any difference. But I thought you might want to give it a try. http://www.casesjournal.com/content/2/1/9077 My next step is to cut out gluten. But, as I'm sitting here eating pretzels at the moment, it's not something I'm really motivated to do.

UGH. This is one of my worst problems. I think it's exfoliative chelitis, actually. https://www.google.com/search?q=exfoliative+cheilitis&ie=UTF-8&oe=UTF-8&hl=en&client=safari Not as awful as the poor guy in that first pic, but it can get pretty bad if I don't literally peel the skin off ever two days or so. Only on my bottom lip. I've tried literally everything, from steroids to prescription chapstick and most recently a prescription meant to slow the growth of keratin plaques. Very little helps. Blistex for cold sores (which i dont get), surprisingly, does. Also Alba's organic chapstick does a decent job at moisturizing the skin enough that I don't rip my lips to shreds picking at them. But I don't think this is exactly related to POTS. I blame the accutane I took as a teenager.

http://clinicalposters.com/news/2010/20100326_acrocyanosis-raynauds.html Here's a comparison between the two.

Blue feet/nails happened to me all the time. Usually in the morning/earlier in the day, my feet would turn a hideous purple. Everyday. And my toenails seemed to be permanently blue. My doctor had no clue what was going on - reynauds, lupus, scleroderma, she thought it could indicate any of them but the ANA came back neg. Eventually the purple feet stopped being a daily occurrence. The blue nails still happen daily after I eat, especially if it's cold. It's a bit embarrassing when it happens in sandals and I'm sitting in a class or somewhere where I'm trapped, feeling like everyone is staring and wondering what the ****. But, honestly, from a medical standpoint I've stopped worrying about it. I know I've read that it's common in POTS patients, acrocyanosis. Totally off topic side note: Michelle Obama's on the Oscars! Didn't see that coming.

I have it, too. It's constant but mostly a quiet, easily ignorable pitch. If my bp is in the toilet (or I'm pre-syncopal), it ramps up to a dull roar. I've had it for years and I'm pretty resigned to the idea that it's not going away anytime soon.

I had some form of dysautonaumia through high school, but my POTS didn't severely impact my life until junior year of college. I lived on-campus my junior year, then moved off my senior. Getting to class was MUCH easier living on-campus. Not only do you have friends to drag you out of bed if you oversleep (a frequent occurrence for me) but the walk to class is generally much shorter than the walk from the parking lots. Between that, the hassle of finding parking and the commute time, it averaged out to an extra half an hour of sleep. I was in a single by junior year, but one of my closest friends in college, who had severe POTS from high school through college (weird to randomly know another POTS person, I know. But lucky. I never would have been diagnosed if I hadn't known her - after we put 2 and 2 together and laughed about her 'infecting' me, I bypassed my well-meaning but useless PCP and went straight to the POTS specialist), anyway, she had a double for 2 years, a single for one and lived off-campus her senior year. She survived. She had bad days where she couldn't get out of bed, but her roomates and professors understood. She also had extra time on exams which, looking back, I'm jealous of. I didn't have any accommodations. But I survived too. It's surprising what you can handle when you forced to. Freshman year, I would have him be in the dorm, if at all possible. He'll miss out on a lot if he's not. First semester freshman classes are generally the easiest, so it will give him leeway to adjust. If it's not working out, move out for the January term. But I'd definitely try first.

I'm having issues with this too right now. It reminds me of the when my pharmacy hasn't mailed my bb prescription on time and I've had to go without. It's like day 3, when all the metoprolol is out of my system and I'm just uncomfortable. And unusually hot, at least some of the time this is going on. My heart usually calms down after a week or so - I just make an extra effort to avoid caffeine (sometimes I'll skip my adderall, but it doesn't make me feel crappy and jittery like caffeine, and without it I'm a zombie, so that's a last resort) and also be sure I avoid red meat in the meantime. I don't eat it often at all, but when I do I'm not surprised if my heart starts to flip out. Sometimes splashing cold water on my face or holding a cold washcloth there - triggering the mammalian dive reflex - will keep it slowed down even after the reflex response has faded, if I'm lucky. Might be worth a try if it's getting really bad.