Libby

"Chronic treatment with metoclopramide can cause tardive dyskinesia, a serious movement disorder that is often irreversible. The risk of developing tardive dyskinesia increases with the duration of treatment and the total cumulative dose. The elderly, especially elderly women, are most likely to develop this condition. Metoclopramide therapy should routinely be discontinued in patients who develop signs or symptoms of tardive dyskinesia. There is no known treatment for tardive dyskinesia; however, in some patients symptoms may lessen or resolve after metoclopramide treatment is stopped. Prolonged treatment (greater than12 weeks) with metoclopramide should be avoided in all but rare cases where therapeutic benefit is thought to outweigh the risks to the patient of developing tardive dyskinesia. " My mom was a nurse in a cancer hospital years ago and when I mentioned it to her, she told me that they used to give it to their chemo patients if compazine didn't help. She didn't see any side effects, but the dosing is different, less regular, than for gastroparesis. But it's still making me nervous. I haven't filled the prescription yet... Another question: can you take it after the meal, if you feel the food just sitting there? Doc told me to take it 15 minutes before, but I don't always know what my stomach is going to decide to digest and what it's not.

Has anyone tried it? How'd you like/tolerate it? I'm not loving the whole 'black box warning' to be honest. But I'm really, really tired of being nauseous.

Lejones is right. POTS is within the first 10 minutes, but NMS happens usually between 10 and 45, and because NMS is usually what TTT are checking for, that's usually the protocol centers go by.

Kelly, do you remove the stems for any reason in particular? I'm having so much fun with my Vitamix, throwing previously inedible parts in it, that I was curious if removing the stems is habit or if they taste bad (are poisonous? But I'm thinking not, haha)

Hi Sophie! Have you tried midodrine? That has honestly made the most difference in my pooling. I can tell when it's starting to wear off, especially at night, or in the morning before it kicks in, because my legs ache when I stand. With every step, there's a jolt of pain. Turn some really fun colors, too. Midodrine tightens those blood vessels up. The stockings work too, but my feet and legs just cramp up too much when I wear them.

I agree with you to a point, but I've only seen limited credible research to support that and nothing that really pieces out the cooked/raw nutrient levels vs the amount a person can absorb in one sitting. I've seen a few retrospective studies, usually examining dietary habits questionaires and cancer occurrence/reoccurrence. Bladder cancer and cruciferous veggies, prostate cancer and lycopene etc. For example, broccoli definitely should be eaten raw - studies correlate raw broccoli consumption to increased bladder cancer survival - but eating it just once a month seems to give you the benefit. In contrast we know that lycopene and carotenoids are increased after cooking - but how much does that matter? How much do we actually absorb? I honestly think it's kind of a crapshoot on what combination is best.

Soups is how I get a lot of my sodium.

Hi Susan, Thanks for the response. Ouch. None of that is fun. Did the esophageal stretching help with the dysphagia? Our experiences do seem similar - I had my endoscopy a few weeks ago. I haven't been back to the GE yet, but he mailed me the results. No h pylori, barrett's or celiacs, but I did have and irregular Z line and mild hyperemia (redness) in my stomach. I had multiple tiny lympoid follicles in my stomach too. I searched pubmed and 99% of all the papers which mentioned gastric lymphoid follicles associated them with h pylori, so I was shocked when I tested negative. The only thing without h pylori that I managed to dig up was a paper from the 90's that associated lymphoid follicles with hashimoto's (which I have). So maybe autoimmune gastritis? Just another thing to talk to the doctor about, I guess. It definitely is frustrating.

Thinking of you.

I just got a vitamix about a month ago. I love it, despite how ridiculously loud it is. My favorite fruit smoothie has some fresh pineapple (with core), a green apple (cored and seeded - red apples, I leave the core in and just seed it, but granny smith cores give a bitter aftertaste to the smoothie), a banana, a hefty scoop of plain greek yogurt and a glass of ice. The pineapple is sweet enough to hide a big handful of spinach completely. I tried to get my mother to try it, but she was turned off by the green color...so I added a handful of blackberries to turn it purple, and lied about the spinach. She loved it. I can't say that I've really noticed a difference in my POTS because of the change, honestly. But I'm going to stick with it. I've tried all-veggie smoothies (carrots, celery, cucumber, spinach, etc) but, aside from the taste which will take some getting used to (a dash of hot sauce helps), all that fiber really doesn't digest well for me. I'll still be full 6 hours later. Not fun. But I'm still experimenting. Next up, fresh ginger in a smoothie.

But just that morning I had woken up at 3am, still full from dinner and painfully nauseous. After I ate the egg (which had a HAIR in it - I'm still traumatized), I could feel my stomach churning/actually working. Something that doesn't happen when I eat other high fat/high fiber foods. It would have been great at any other time. It looks like it's fairly common to have a false negative - has it happened to anyone else? Will there be more tests? Will I just be diagnosed with gastroparesis based on symptoms? Or told nothing is wrong...

I just had one done two weeks ago for gastroparesis. Really easy. I remember the doc telling me he was going to put something in my mouth to keep it open, then nada. Next thing I remember is getting a juice box in the recovery room. No side effects, other than being really loopy/tired for the rest of the day - more so than I usually am, haha. A little into the next day too, but I could still go to work.

I don't know how I would function without adderall. I was on the beta blocker before I started adderall, so I haven't had any problems with more PVCs or an even higher hr. The only downside is that I have to get a new prescription every month.

Wow. That's quite a few months you've had. I'll admit, I drifted a little bit while reading (POTS + ADD = attention span of a goldfish). But there were a few things that I wanted to point out. GERD isn't always caused by high acid. In fact, a growing number of people think it's caused by low acid production. Low acid leads to an overgrowth of bacteria in the gut. The bacteria digest a portion of the food that you eat, with gas as part of their waste products. Gas pushes open your cardiac sphincter (which separates your stomach from your esophagus) and allows acid to splash up. In these cases, antacids and PPIs actually make GERD worse because they create even more hospitable conditions in the stomach, allowing even more bacteria to grow. HCl tablets have helped some people. Something to look into. Midodrine is an alpha agonist which selectively stimulates smooth muscle (like the muscle around your arteries). The muscles contract, increasing your bp. If you think of the other reasons why your blood vessels contract, your midodrine side effects might make more sense. When you're cold, your blood vessels contract to preserve heat, pinching off blood supply to your extremities (which explains your cold feet). That same smooth, involuntarily controlled, muscle will give you goose pimples - a vestigial response from our furry ancestors, meant to raise the fur and trap an insulating layer of air. And because that smooth muscle is not allowing the blood vessels to relax and your bp to drop, your heart doesn't have to work as hard to make sure your brain gets oxygen - hence the reduced heart rate. Also, unlike a (normally functioning) body off midodrine, the body can't fine tune its response. When a healthy person lies down, the body recognizes that the pull of gravity on the blood - and, following, the pressure that blood is exerting on the leg blood vessels - lessens and relaxes the smooth muscle a bit to compensate and lower the bp to normal. If it didn't compensate and everything remained the same as when standing, your bp would rise when you lie down. Which is exactly what happens on midodrine and why the drug warnings tell you to not take a nap after you take a dose.

Oh, UGH. An endoscopy without sedation? I just had one with sedation and it really wasn't an experience I'd like to repeat, I can't imagine being awake for it. How did they numb you and stop the gag reflex, just the lidocaine? And an ulcer? Blech. At least h. pylori is pretty easily cured. I was reading a few articles where it was suggested that h. pylori actually conveys a protective effect (in addition to giving you ulcers) - fewer instances of barret's esophagus progressing to esophageal cancer, one even claimed that those infected are less likely to get lung cancer. Interesting...but I still want it out of my stomach, thanks.

Oh, the chimes chews have real ginger in them. Quite a bit of it, judging by how well they deal with the nausea and the kick they have to them. And I'm not spilling sugar into my purse, like with the crystalized ginger, which is nice.

My neurologist is actually my main POTS doc. She's the one who actually knows what to do with me, what meds to prescribe, what's 'normal'. But, just like how there are cardios and then there are POTS cardios, I think she's a rare find. That said, she did do a full neuro work up on me my first visit. I know that I've had simpler versions of the routine she put me through, done by my pediatrician back in the day. Reflex testing, walking in a straight line heel to toe, closing your eyes and touching your nose, standing on one foot, follow her finger. Almost like a roadside sobriety test, now that I think about it. Haha.

I'm drinking a bottle of ginger beer right now, actually. Yum. The main difference is that ginger beer is fermented, where as ale is usually just carbonated water with ginger flavoring. There's a tiny, tiny bit of alcohol in it from the process, but no where near enough to have it be labeled as an alcoholic drink (though it does get a head on it, like a glass of beer!). I also think that the beer has got a lot more ginger in it than the ale, so it's a bit spicier - and does a better job of calming the nausea, imo. My favorite is Reed's. I live in the northeast, so I usually get mine at Wegman's. But I'm pretty sure they sell it at Trader Joe's. I also like chimes ginger chews for nausea (and just for a candy snack). They come in much more reasonable size packages than what I linked to at the grocery store, haha, but I got tired of always having to pick them up. Much less mess than a bag of crystalized ginger, and they work basically as well. Win win.

This kind of patient experience exists??? I am so jealous right now. How'd today go?

bananas - it can be exhausting, definitely. but if you do it right, you don't even realize how exhausting it is until after the scene is over. Or sometimes, it's not - sometimes it's a quiet, understated scene. My best scene ever was a scene from Blue Valentine, where the main characters flirt on a bus. I don't even remember doing it, it felt so natural. The real tiring work for that one came in the rehearsal - my scene partner and I worked the scene on an actual bus. The driver must have thought we were nuts. lol What kind of fiction do you write? CM - I used to LOVE scuba diving. I haven't done it since being diagnosed with POTS, though. I never thought I'd pass their health questionnaire (though I seriously considered lying - if doctors don't get POTS, then I don't expect the scuba people to understand). It's gorgeous down there, isn't it?

Well, from what I understand, Long QT Syndrome happens because of an issue with the sodium/potassium channels in the heart. Once the heart beats, it has to wait a certain amount of time to 'recharge' the nerve cells. The cells can't make the heart beat again unless they're fully recharged. Sodium/potassium pumps play a huge role in that, generating the charge in the cells. If they're slow to do that, the time in between beats is prolonged - hence long QT. There are some other factors that go into it, calcium pumps and whatnot, but that's the basic gist of it. I haven't really looked into the warnings on Celexa/Lexipro, honestly. But if they're for Long QT Syndrome, and if you have MVP without any evidence of Long QT Syndrome, I wouldn't be too concerned about it causing a problem. MVP is usually due to a structural abnormality - a thickening of the valve or a valve that is single or bi-leaflet.

I keep thinking I've replied to this thread, but nope. haha. Well, I will now. For my TTT I went off my meds, against the recommendation of my primary and the testing center. It was worth it for me. I didn't trust either of them to understand POTS. I also didn't want to give a skeptical doc ammunition by producing a med-induced, normal test result. It worked out in my favor. My hr initially jumped 40 bpm, and climbed up to +60 before I passed out. (Still, the cardiologist that reviewed it misdiagnosed me with IST.) My POTS neuro diagnosed me correctly, and she agreed that I was right in stopping the meds. I looked up the half lives of my meds and calculated it out, so that I had gone 3 or 4 half lives, I think, without the drug. I did taper them initially, too. For drugs like midodrine, with a short half life, not taking it that morning might be fine. For some of the beta blockers, you're going to have to stop them at least a few days before your test to not have them influence it. I understand what you're saying about rebound. It does happen with beta blockers, and you can end up with an even higher hr. I've read that tapering first before you stop completely will help prevent it. I think took my stress echo on meds, but they just wanted to image my heart while it was pumping hard. I remember wishing that I had skipped at least a few doses of my beta blocker, because then it wouldn't have taken so long on the treadmill to get to the hr they wanted LOL.

Oh, poor kid. Those are no fun at all. For me, it was prozac that caused the majority of my night sweats. It was happening every night. I was sleeping with icepacks, trying to prevent them. I stopped taking the med and the frequency of my night sweats decreased to what it was pre-prozac, about once a month.

For a creative outlet, I act. I think about it all the time, haha, and rehearse a few times a week when I'm doing a scene, but I also take a class. It's 3-4 hours, once a week. Fantastic for my mental health but it's not always the best thing for my symptoms, honestly. We start each class with a warm-up exercise that involves a bit of movement, which always leaves me lightheaded. Also we'll do freeze tag improv (two people will improv a scene until someone watching yells 'freeze', tags one of the people out and starts a different scene using the frozen positions), and the standing will get to me. But we have it in an old theater that usually has some overstuffed prop chair or desk lying around that I can sit on. But the majority of the class is scene study, so I'm either sitting the entire time watching/critiquing someone else's performance or, if I'm doing a scene, the high that comes with hitting the emotions usually keeps me good. I minored in creative writing, so I'll dabble in that too. Less physical effort and it's useful in acting - practicing character development.

Aww! Your last few days really have been ******! But I totally get what you mean about embarrassing. On bad days, I'll see stars when I use the toilet, and I've always giggled/been horrified at the thought of passing out in that position. I passed out for the first time a month ago in the bathroom, but while getting my dog some water. (the combo of it being 3am and squatting/standing didn't work out too well for me) Woke up smooshed against the toilet and my dog staring at me like 'Uh, where's my water?". She's not exactly Lassie, haha. But I'm glad you're feeling better! And even more glad that you're getting treatment from people who have bothered to educated themselves about POTS.