Libby

On meds: lying down is usually around 68-72, while standing is usually around 110-115. Without meds: lying down can vary from 60-90, standing will push it up to around 135-150.

That's interesting. I just checked mine and they're basically identical - 97/66 for the left and 99/64 for the right. But I think that I've noticed a discrepancy in the past. I'll have to pay more attention...

Hi Purple! Welcome! Usually, what they mean when they say the TTT was negative is that you didn't pass out/have pre-syncopal symptoms (mainly a large drop in BP/HR) to a degree that forced them to tilt you down. Do you have the minute by minute breakdown of your HR/BP? POTS is currently defined by most as a 30+ BPM jump in HR (or a jump to over 120BPM) w/in the first 10 minutes of standing. According to the literature, you're just at the cut off - but I don't know when you hit 96, or if your resting HR was lower than 66, so I can't say for sure. The iso is used to increase the chances of getting a faint. It's fairly specific in that it generally only induces syncope in people who would normally pass out, but who are having a 'good day' the day of the tilt. I don't think that the HR the adrenaline generates is used towards POTS diagnosis, though. I think your doc might've meant the tail-end of the original 30 minutes?...but that doesn't mesh with the 'first 10 minutes' clause, hm. I can't answer the question about the effects of the iso, though - didn't make it that far. My body crapped out 15 minutes into the tilt.

I smell burning wood occasionally. It never lasts more than a few breaths, and I can go months without smelling it and then have a handful of episodes in one day. I mentioned it to my POTS neuro and all she did was ask me if I have migraines (I don't, but my mother does). She didn't seem too concerned, and I don't notice any issues accompanying the smell, so I just shrug it off. But I'm kind of angry (but not surprised) that the ER didn't take your issue more seriously. It's not something that's happened to you before; what if you were having a stroke?

I'm not sure what's going on with my GI tract lately, but these new symptoms are killing me. About 10 days or so, whatever's going on with my stomach abruptly migrated south. I fit all the symptom criteria for IBS except constipation - and it *****. I haven't been on antibiotics, I haven't been ill (at least not with anything non-POTS related), and nothing's changed meds-wise. There's not a single thing that I can pick out that might've triggered this. I wasn't even on my period. And even if I did pick up a stomach bug, two weeks is a long time for it to have stuck around. My POTS doc said that she couldn't/wouldn't do anything for the GI symptoms and recommended I go to my primary. I don't have time to spend researching gastroenterologists for my inevitable referral. Sigh. I know ibs can be neurologically mediated, so I suppose it makes sense that it would show up alongside POTS. But then I have thyroiditis and eczema, so maybe it's something immune mediated? This is so frustrating. My stupid body needs to stop collecting symptoms/diagnoses like baseball cards.

^ word. It's frustrating that certain diseases/illnesses get such great PR, while others get an article, usually uninformed, in a random newspaper twice a year. Not that I don't think that diseases like breast cancer deserve to be recognized/researched, but it'd be nice if we could find a way to share that wealth. And thanks, everyone, for your understanding comments. My mom has been noticeably more aware of my POTS since the incident. I think something finally 'clicked'. Totally worth almost passing out, lol.

Oh, fantastic! Thanks for sharing this! It's been down the last few times I've checked.

Amen, flying squirrel. Vaccines have done more good for the world than arguably any other scientific advancement. The fact that nearly all of the US population has been immunized against so many diseases is what allows vaccination opponents to ride the coattails of herd immunity and remain healthy - and alive - while they protest. Even if my POTS were triggered by immunization, I wouldn't stop immunizing myself or my (far, far, in the future ) kids. If I hadn't gotten that immunization, who's to say that the flu I would have gotten that year wouldn't have triggered my POTS? I think that there are times that we have to look at the bigger, statistical picture. Even if we ourselves fall into the less favorable percentile.

This forum seems to be related to Miracle Mineral Solution; honestly, that alone makes me wary of the logic behind the argument. MMS is an industrial paper pulp bleaching agent which is marketed as a cure-all. Cancer, HIV, you name it, MMS supposedly can cure it. It's sale has been banned by Canada and the US FDA issued a warning against its use in July 2010. Additionally, the article itself makes a lot of fairly specific claims, but doesn't offer any research links to back it up. It's interesting information, though.

Hi! Welcome to the forum! Your BP numbers remind me of my TTT, actually. It doesn't look like you'd be diagnosed with POTS, but you may be on your way to syncope. Neurocardiogenic Syncope/Neurally Mediated Hypotension/Vasovagal faint (there's a lot of names for the same thing). Here are my numbers, just so you can see how mine played out: 0 Degree 15 min BP 116/69 70 Degree 1 min BP 123/69 70 Degree 2 min BP 129/68 70 Degree 3 min BP 120/66 70 Degree 4 min BP 119/65 70 Degree 5 min BP 118/64 70 Degree 6 min BP 117/55 70 Degree 7 min BP 124/50 70 Degree 8 min BP 109/47 70 Degree 9 min BP 108/50 70 Degree 10 min BP 115/37 Comment of feeling hot and nauseous 70 Degree 11 min BP 106/35 70 Degree 12 min BP 106/36 70 Degree 13 min BP 98/34 70 Degree 14 min BP 98/28 70 Degree 15 min BP 70/22 Comment of loss of vision The pattern of sort of one of the two numbers holding steady, then a big drop, then holding steady/rising a little, then dropping, that your numbers have makes me think that if you stood for at most another 10 minutes, you'd drop. You might want to ask for a TTT, specifically. I had never fainted either, before that day (though I think my doc had to put syncope on the prescription for the TTT to get insurance to cover it.). And actually, I was still conscious at the end. Just feeling really crappy lol.

Sorry to barge into this thread like this, but I'm so excited that you brought this up. I've been looking for information on this for years, but I can't find anything to really tell me what it means. My respiratory sinus arrhythmia is reversed. My heart slows down when I inhale and speeds up when I exhale; I remember one of my docs telling me that when I was 14. He was kind of surprised no one had mentioned it to me before and when I started to pay attention to it, so was I. It's really, really obvious. So, anyone have any info on it?

I'm on 100mg of toprol XR (the extended release form of metoprolol). Actually, I was on 150mg for a year or two before I (at the recommendation of my then-new POTS doc) dropped it down. 100mg was as low as I could go without feeling cruddy again, with tachycardia and the palps. Some people (even us notoriously med-sensitive POTS people lol) just need higher doses of certain meds. I know a lot of the current research indicates low-dose bb to be the way to go, but if you're not seeing a real difference, why not see if a higher does will help? If I were you, I would keep upping the dosage (w/ your doc) until I either felt a significant amount better or side effects popped up. You can always drop it back down. Some people can't tolerate certain betas (you'll know when you hit one - propranolol knocked me out completely), but from what you've said I'd guess that you just haven't reached a dose which will help you yet. My beta blocker turned out to be a godsend, but it definitely took a while to get to a dose where my tachycardia was controlled.

It happened while I was emptying the dishwasher, which I totally called months ago, but more importantly it happened in front of my mother. She's never really understood, or tried to understand, what POTS is like. How it's limiting. I can't tell you how many times she's screamed at me over the dishwasher, me not emptying it immediately. I've told her that standing in one place for that long can be difficult, she didn't care. Now at least there's some 'proof' behind what I've been telling her. I haven't been this happy to nearly pass out since my TTT

Hi Sara! Welcome I know I'm late on this - How was you appointment?? - but here are a few answers. POTS is a type of OI. Did you get the full report of what your bp/hr was throughout the test, or just the doc's summary? Having the exact numbers would definitely be helpful in figuring out what might be going on. When I was first diagnosed, I had every 2 weeks/monthly appointments while I was trying out meds. Once we figured out what worked for me, we bumped it up to 3 months, and now I'm at once every 6 months. As for how long I tested a med, it really depended on what med it was. With florinef, I was on a dose that did nothing but make me feel fat for about 2 weeks, then we increased the dosage and suddenly I felt fat and like my head was going to explode. So I stopped that med after about 2 weeks and 4 days. With midodrine, I knew immediately it was for me. Within a half hour of taking the first dose. We increased the dose after two weeks, same as with florinef, increased it again after 2 more weeks just to see, then decreased it back down after a few days. With the beta blockers, I stayed on propranolol for a week, maybe less. It made me feel so lethargic. I couldn't handle it. But this was my primary, not my POTS doc. A lot of POTSies seem to have a very low tolerance for meds (not me ), so docs familiar with us may want to start their patients out with very low doses. You may want to talk this over with your doc, if you know this does/does not generally apply to you - like I said, I don't have a low tolerance. If anything, it's high. Start me out at a POTS dose/increase regime, and it's going to take years for me to feel anything - and my doc, thankfully, considered that when she prescribed the drugs. It depends on the person.

I keep track of mine most because I'm curious, honestly. I like to know what bp corresponds to what symptoms. But with midodrine, in the beginning I would check to make sure that my bp wasn't going too high. Especially when lying down - your body would normally stop constricting your leg veins because gravity isn't so much an issue anymore, but midodrine doesn't care that you're lying down. So your bp might be higher lying down than it is when you're standing. That's why you might hear to be careful about taking naps while on midodrine. Now, I don't really check it for that anymore. I've learned that my bp generally doesn't hit 'normal' even with midodrine, no matter what position I'm in. But it's something to be aware of. Good luck! Midodrine was a godsend for me, I hope it's the same for you!

puppylove - oh, hon, it's not pathetic. It's just ****** that it's come down to that. And frustrating. I've cried over eating more times than I care to count. What's worse is that, for me, I may or may not get a little nauseous right after eating, but the worst symptoms don't show up until several hours after I've eaten. And I can't predict what foods will make me sick, so it feels like I'm rolling the dice every time I eat. Sheila - thanks for the info! For me, the nausea usually starts 5-ish hours after the meal. Then suddenly, after a couple hours of wanting to die, I'll feel my stomach finally start to churn (emptying itself, I think) and within a few minutes the nausea is gone. Liquids are the only thing I can tolerate during the nausea - and even then, it's only ginger beer and maybe water - but I'll have to keep trying a liquid diet in mind. When you say liquid diet, do you mean a meal replacement shake or something like that?

I work Monday through Friday, and I've definitely experience symptoms at work that have made me want to just go home and pass out or throw up. But I've noticed that the days I'm my worst are generally Saturday and Sunday. Bad for my social life, but good in that I can keep a job. Is this a self-fufilling prophecy? I give myself permission to feel crappy, so I do. Everything I can measure shows up worse on the weekends, so it's not ALL in my head... Is there a pattern with anyone else?

That's fantastic!! I'm so happy for you! Were you a runner before POTS?

There's no medical proof that you need to have your period every month. At least none that I've seen. The people who first marketed birth control thought women would be more receptive to it if it mimicked their normal cycle, which is why it's 3 weeks on and 1 week off. And, actually, women who are on hormonal birth control DON'T have a period. They have withdrawal bleeding, a reaction to the cessation of the hormones, which isn't the same thing. The long term health perk that I know of is that it drastically reduces a woman's chance of developing ovarian cancer. Something like 60% if you're on hormonal BC continuously, for 10 years. It also reduces the risk uterine cancer. It increases the chances of breast and cervical, but the increase is small and disappears soon after BC is stopped (the protection against ovarian cancer lasts much longer). Plus, breast cancer has a 96% (or very close to that) cure rate. I'd take it any day over ovarian, which has something like a 20%. If they catch it early which unfortunately doesn't happen very often. Anyway. Though there may be differences in the hormone levels in each bc brand (i haven't looked), the concept is the same across the board. If you're using hormonal birth control, you ARE suppressing your period, even if you bleed every month. Just something to weigh when you're thinking about your options. Good Article

I feel like crap. I just want to sleep, but my stomach isn't emptying what I ate at 5pm. I haven't felt it move, at all, in the last 9 hours. No mechanical digestion, no grumbling. Just sitting there. I really, really hate this. I see my pots neuro in a little over a week; should I ask for a gastric motility test, will that tell me anything useful? Is there anything that can be done? God I hope so, because I can't handle much more of this. Once a month is one thing, but a couple times a week? It's killing me.

My brain doesn't want to think right now, so I won't be much help on the adrenal exhaustion theory. But I just thought I'd mention that I had limited success when I tried Ritalin - I ended up switching over to Adderall and it was like night and day. I remember asking my doc if this is how normal people feel, all the time. My POTS has gotten worse (and/or I've developed a wicked tolerance) so it's not as effective as it used to be, but for a while I was doing incredibly well. If you are having adrenal exhaustion, not sure if adderall would give you much different results...but I definitely have had a similar crash with adderall (can't remember ritalin, it's been a few years). My mind just goes completely blank. I can't focus, can't find the words I want to use. The frequency of that dropped significantly after a month or so on the med. I also have a second dose to take in the afternoon that gets rid of it, if it's happening.

It takes a while to build up in your system. I'd give it at least a week or two at the initial dose. Your doctor should increase it if you're not feeling anything by then.

I'm on 100mg of Toprol XR a day. I love it. If I had to pick only one med to take, it would be my bb. I don't think I ever really had side effects from it. It's debatable if/how much it contributes to my Reynauds/acrocyanosis. Random things I've learned: Be careful if you use any sleep aids, even nighttime cold meds. I took some NyQuil a few years ago and it slowed my hr down more than I thought was possible. Scared the crap out of me. It will stick around in your system for a few days, even without the pills - fairly long half-life. On the unfortunate occasions when I've forgotten to re-order my prescription, it's usually not until the 3rd day that I really start feeling sick.

Oh, the differences between US and UK food selections. When I was in London, I had a few of my co-workers try Gushers - gummy fruit flavored kids' snacks with a pocket of fruity/sugary syrup in the middle that 'gushes' out when you bite down. Their reactions were hilarious. Probably as hilarious as mine while trying marmite, haha. What about take away/delivery? I know that noodle shops like Wagamama can have some nice vegan options. If I recall, their portions are rather large - could last for a day or two. It's been a while since I was in the UK (study abroad in London, pre-POTS - I had the best time), but I remember being impressed with the vegetarian labeling on food packaging. In the US if you want to know there are no animals/animal by products, 98% of the time you'll have to read the label (it's irritating)...I can't recall, is it the same with vegan? Could you easily pick out a few meals that aren't too taxing to prepare for the days you're not feeling up to cooking? The perk to a lot of the pre-packaged stuff is that the sodium content is usually high. As for the social thing, I think you should go if you can. One of your biggest stressors seems to be social. I think it will help to be out with friends - it'd be worth the price, for me at least.

Thanks for all your replies! Dizzy - that enzyme info is really interesting. I'm definitely going to look into that. I totally meant to reply to you earlier on this. But I know EXACTLY what you mean. TMI (it's gross, haha) - there are some days when I'll burp and still sort of taste what I ate the day before. It doesn't taste like vomit - just like the food. Like it's just been sitting there, not being digested. It's revolting.