Tzipora

I'm not on anything yet for POTS though I'm on a considerable amount of meds for various other reasons. I'm never sure just what cuses me to feel "stupid" but initially I'd go through spells where I had trouble talking, thinking, concentrating, remembering... lately it's become a bigger problem and I'm not sure why. I was complaining about this when I went to my neurology appointment on Monday and I was stuck with a resident who made a kind of big deal about it but didn't know what the cause was. He actually suggested I had sleep apnea (then blew it down on his own because I'm close to underweight) and also had the nerve to ask me if I was depressed (and honestly I'm not though I can get extremely frustrated with my mind's inability to work as well as I would like it to!0 But then the senior neuro octor came in and I told him the same thing and he didn't really have anything else to say. I'm generally a lot better in writing and try to communicate important things in that way whenever possible. When I speak I sometimes confuse or forget words or I will forget what I am trying to say or I hear my own voice and I just sound really spaced out. I've also become so terribly forgetful! Like I remember which of my meds are due at which times during the day but I can literally have just taken a medication yet I have no memory of doing so! I was playing a card game with my dad and kept forgetting whod ealt last or even when it was my own turn. And ugh my concentration is terrible! Today I'm even having trouble replying to forum posts and e-mails and all. On the other hand I do know I am way better when laying down. If I lay down I can generally read books (though lately I largely read graphic novels and young adult books because they're easiest but I used to love reading heavy non-fictiony type books...) and yesterday I even wrote a book review while laying in bed which amazed me because if I sit up and try to do that I just can't. Sitting up I feel so spacey and tired and out of it but then I lay down and I feel way better and more awake so I eventually just get back up and it's back to being spacey again. I really hate it. I keep thinking I want to take some online classes and maybe even finish my degree but I don't see any possible way that's going to work out right now.

Hi everyone, I just got diagnosed with POTS and today my neurologist prescribed Propranolol. I'm supposed to start with 10MGs once a day for a week and then go up to 20MGs. I'm always nervous about new medications and all so I was just researching side effects and drug interactions. I keep reading that beta blockers can be a problem for asthmatics. And that there are MAJOR drug interactions between Propranolol and Xopenex (my rescue inhler, also the same med I have for my breathing treatment machine) and the same goes for regular albeuterol. My asthma is pretty mild but I would say on average I have about one major asthma attack each year that involves an ER visit and all. (I actually got diagnosed originally with sinus tachycardia a few years ago when I went to the ER with an asthma attack! And at the time they actually refused to give me a breathing treatment for fear of making my heart rate worse... and my asthma meds got changed all around to lower the risks of them making my tachycardia worse). I don't even use my rescue inhaler much and very rarely ever use my nebulizer. But there's a strong history of severe asthma in my family. Both my mother and grandmother have very, very bad asthma. So I'm generally okay and I take Asmanex every night which helps me a ton (and apparently does not have any known interaction with propranolol) but I'm rather scared that either the Propranolol is going to cause an asthma problem or I will just have a problem down the line and be screwed over in terms of asthma treatment because of the beta blocker. It's too late to call my neurologist today and I'm not even planning to try the Propranolol until Wednesday since I have tickets to a concert tomorrow night and don't want to take any chances. So I've got a couple of days to figure this out. But asthma is pretty common so I can't be the only person here with it, right? So any other asthmatics out there who have tried beta blockers? Any problems? I don't know why my neurologist didn't catch this. The only warning he gave me was that it might lower my blood pressure (and I tend to run fairly low as it is). So I was worried about that but I'm way more worried about asthma issues now! But then again it's only a low dose and I rarely even need my rescue inhaler so I really do not know but I'm obviously (and rightfully) concerned...

When my doctor first suspected POTS he recommended checking my blood pressure in the machines they have at pharmacies and all... of course good luck being at or near a pharmacy when your symptoms are really flaring! But when I'd have to wait for prescriptions I'd try it. Didn't work for me in particular though because the machine says right on it what the arm measurements are that it is good for, my arm is actually too small so I got wonky reads. But it's a suggestion until you do get a monitor. I have a monitor It isn't quite calibrated right but it serves it's purpose. Not sure what it is called or what it cost or anything. I got it from my mother who has high blood pressure issues and she was no longer using this one. So I got mine for free. No clue what it cost her or anything. My guess is insurance covered at least part of the cost.

I definitely agree it's likely nutritional (or it can be related to thyroid issues but I've had the thyroid issues i have longer than anything else and it never caused hair problems before)... I actually wear a wig because I lost A LOT of hair to severe malnutrition. And I had thick waist length curly hair until that point though I had gone through spells of losing it through the year leading up to the major hair loss... each time directly related to various severe GI issues. I saw a dermatologist for it even. But now that I am on IV nutrition and doing a lot better I actually have hair growing back in! But that's my personal story... I have a couple of general things I wanted to add. First off, I suspect my hair loss had a whole lot to do with severe B vitamin deficiencies. Most notably I got scary sick with bad B-12 levels and then my Folic Acid (also a B vitamin) got low... later other ones got screwy but the major hair loss was related to those two. I've also read quite a few things talking about ruling out those same deficiencies in POTS patients. Lack of those vitamins produce a lot of symptoms similar to POTS. Another suggestion is, when I saw the dermatologist she asked me how much weight I had lost being sick. Her own guess was 30lbs. I actually lost 70lbs within about 9 months. But judging that she guessed a considerably lower number and said the hair loss could have a lot to do with that, I realize most POTSies aren't losing such dramatic amounts of weight but weight loss could be another factor.

I literally just got out of the shower about 20 minutes ago and yes, the same thing happens to me! And I only take very quick showers about once a week because it is so hard for me. I actually didn't know until yesterday what blood pooling even looked like but as soon as I saw a picture I knew that was what happens when I shower. Today I was looking at my skin and my toes were all swollen even. I'm super pale naturally too so it's pretty obvious. The best showers I've ever had were honestly in the hospital where I could sit down!

I had never fainted and didn't faint for my tilt table. I actually fainted my first time about a month later while in the hospital and I was in a hospital bed vomiting like crazy at the time. And seriously, if you're going to faint, the best time/ place to do it (not that there is a "best" time, of course) is definitely when you're being watched by medical professionals. That is the most positive spin I can put on it. I actually was having a less symptomatic day when I had my TTT and was kind of disappointed! But while I did not faint and my blood pressure mostly stayed in a decent place, my heart rate went really high, really fast and hence the POTS diagnosis. Also I definitely had a lot of symptoms. The scariest thing that happened to me was that I started shaking and twitching a ton, kind of like a seizure. That had never happened to me before. Everything else that happened and everything else I felt though was pretty normal for me. I couldn't see at one point. I got really warm. I was super dizzy. And I got so nauseous they were holding a bucket to my face while I retched but I didn't vomit (of course I'm also on a lot of anti-nausea meds and in my case because I am on IV nutrition for my gastroparesis I also had not actually eaten food in days, maybe weeks at the time). Honestly when I got the most nauseous was also when I was having trouble seeing so all I know is there was a bucket being held in my face but I was pretty out of it! They did inject me with stuff too. Not sure what because there's a couple of different meds they might use from what I understand but it went in through an IV and my heart rate kept getting higher and higher until very honestly it got so high that they stopped the injection and started flushing saline through, I think. All I know is at some point they're like "Okay we do NOT need her heart rate so high!" and they rushed to stop the medicine! I think it was during that part of it that I was unable to see and nearly vomiting. They actually called my test "mostly negative" and I was kind of bummed but when the neurologist who ordered the test looked at the results he said I had a pretty significant reaction and was highly symptomatic. Actually I've seen the report and they didn't even write down every single symptom I reported having! And they do want you to communicate with them and tell them how you are feeling. As I recall, a few times they even flat out had to ask me "Are you still with us?" So yeah the test ***** and you're probably going to feel a bit crappy for the rest of the day (and be TIRED!) but it's not the worst thing in the world, honestly, I promise! I had an hour car ride home after my test and I don't remember feeling all that terrible once it was done. When it is done they lay you down to recover. Actually I know that while I was recovering I started to sit up a bit and they flat out pointed out to me that just half sitting up sent my heart rate skyrocketing. So I had sort of suspected POTS and it did confirm it, without me fainting. So not EVERYONE will faint. And even if you don't faint it doesn't mean it won't aid in a diagnosis.

I have some degree of GERD and take Prilosec but mine is more related to my Gastroparesis and surprisingly not that bad. I pretty much have every other Gastroparesis symptom (nausea, vomiting, pain, bloating, etc) to a severe degree but the GERD aspect is probably my mildest symptom. It's genuinely surprising to me that I don't have GERD that badly. What have you tried besides Prilosec and Zantac? I know I've been given Protonix in the hospital and it seems to be the best of any medication I've tried for GERD. I had a nasty intestinal infection at that time that gave me terrible reflux but Protonix (with a ton of Maalox on the side) really helped. And I've never tried Nexium but I do know they often try people on that if Prilosec isn't doing as much as it should.

On average I tend to be about 90/50. Sometimes more like 95/60 but pretty close to there. Occasionally it's lower. Last week I was super stressed out over a nasty argument with someone and my home health nurse came over and I was telling her the whole crazy story and all hyped up so my pulse was moderately high (for me, which was like 125ish) and my blood pressure then was something like 116/85. That's "high" for me. It's funny too because I can be in the ER or something really sick and feeling so off and I might get a 115/70 or so reading and they'll be like "That's great!" and I'm always saying "That's HIGH for me!" and sure enough they'll check it when I'm in less pain or whatever brought me in and it'll be really low again (or my "normal"). On a random note, when my GI motility specialist that I see for my Gastroparesis first suspected Dysautonomia I had definite orthostatic hypotension. Then my nutrition got super ugly and now it's better but now I'm just consistently really low when I didn't used to run quite so low but I don't have orthostatic hypotension anymore. I'm so intensely curious about the nutritional aspects of this all. My POTS symptoms are no better, maybe worse since my nutrition improved but some of the symptoms are just different now. I've been wondering if malnutrition and some major B vitamin deficiencies might have done permanent damage.

My other severe illness is gastroparesis, so probably directly related to POTS. In fact I'm not sure which came first. I've had a sinus tachycardia diagnosis for several years and have only for sure had Gastroparesis for a little over a year. but then my major POTS symptoms didn't show up until my nutrition got really bad about 9 months ago (and I only just now got the diagnosis of POTS). I feel like the POTS stuff is more directly debilitating but on the other hand it's my Gastroparesis that is truly severe. I almost died this summer, literally, from malnutrition. And that was at least the second time I almost died from malnutrition/ GI issues in the past year and a half. I'm also currently dependent on TPN (IV nutrition) which puts me at a lot of risk for life threatening infections or in the long term possibly liver failure. So the Gastroparesis and POTS are almost certainly related but I feel like the Gastroparesis is probably shortening my life more than anything. And oh, I'm only 21. So basically I don't know what the future holds. I honestly feel truly blessed just to be alive. But I'll also say that even before the POTS diagnosis I've pretty much been thinking that I don't expect to live as long as I would without the issues I have. I'm not sure how long that is. For that matter on my mother's side of the family there seems to be a longevity gene or something. My great grandmother lived to be 103. My grandmother is doing great at 90 right now. My mom is going to be 68. So who knows. I may have that in my favor. Especially because all of those women have had some fairly serious health issues of various kinds (none of them GI and too my knowledge, none of them neurological either though...) So it's hard to say. I've kind of come to a dead end with Gastroparesis treatments at this point, though maybe treating my POTS could help some... All I know though is that I am focused on making the most of my life while I can.

I'm newly diagnosed with POTS but find this discussion interesting. For whatever reason my own BP has been consistently even lower than usual (and I run low all the time anyway) and my brain fog has gotten way worse in the last few weeks (as the weather has also gotten more and more "wintery"). I've been dreading the winter. It makes me never want to leave my house. And it's so hard to go anywhere because I'm extremely cold sensitive yet obviously heat makes me really bad so it's rough trying to figure out the right amount of layers to keep warm but not overheat once I get inside some place. On the other hand, summer wasn't bad for me at all... but then I was also battling major weight loss and severe malnutrition from my Gastroparesis so I was constantly cold all the time. I remember sitting outside wrapped in a blanket on an 80 degree day. I was always cold. No that my nutrition is better though I get night sweats a lot and have been having a lot of heat issues. Seems like we just can't win! I dream of moving to some place with an utterly perfect climate where it's one mild temperature all year round!

Hi, I'm new here and fairly new to the whole POTS thing but I have been battling severe gastroparesis for quite some time. Actually mine is so severe that I'm dependent on IV nutrition (TPN). So admittedly I'm more experienced with the really bad levels of the disease but anyway... Yes, you absolutely can have some degree of gastroparesis without constipation. In fact if it's just your stomach that is slow and your small intestines and colon are fine, then you actually probably wouldn't have that much constipation especially if your gastroparesis was in the milder/moderate range. When more than just your stomach is slow then you're more likely to have more constipation and to a worse degree. And my own personal theory too is that people with Gastroparesis often end up with more constipation problems after diagnosis because of the dietary changes people with GP are required to make, most notably staying away from fiber. I am intrigued that stopping dairy actually reversed your constipation since from what I know dairy generally causes diarrhea in people with problems with it (I've been lactose intolerant since birth) but definitely given the symptoms you still have and given that you have POTS, having the gastric empty scan would be well worth it. My other thought would be getting tested for Celiac disease 9gluten intolerance) since your symptoms also sound a lot like Celiac (which can lead to dairy intolerance). And honestly from what I've seen talking to a lot of people with Gastroparesis, everyone is different. There doesn't really seem to be a standard way that gastroparesis even looks and the level of symptoms people have often doesn't directly correlate to how well or how poorly their stomach empties either. So it's very individual. Obviously I'm no doctor or anything but I' definitely think you should have the gastric empty scan done. It's pretty much the only way you'll ever know if you have gastroparesis anyway. Also, it's really not that bad of a test. You eat radioactive eggs and have an Xray every 20-30 minutes or so. One more thing, if you have the gastric empty scan done, make sure it's the 4 hour scan and not the 2 hour. The 4 hour scan is much more accurate in diagnosing gastroparesis.

I'm the oldest two and so far my younger brother is pretty darn healthy (though he does have scoliosis). A lot of joint issues run in my family and I've been wondering if I might have the hypermobile EDS. When I was healthy I was heavy into dance and was very well known for my flexibility. I had the kind of super "double jointed" flexibility and also used to feel my joints pop in and out of the socket. My hip joints still do this on occasion (and it hurts!). But no one has ever brought that up. I was torn between what age to mark. I'm 21 now and just got the diagnosis of POTS. However my symptoms first got very severe right before my 21st birthday and I actually spent my 21st birthday in the hospital throwing up and being incorrectly diagnosed with vertigo. I got the diagnosis of sinus tachycardia at 19 though. And have had random issues with tachycardia since I was 17 or so. So I'm not totally sure. I clicked the 21-30 button though since that's when things got really bad. Also, I'm not sure if my mom was actively anemic when she was pregnant with me but I know my mom has been anemic at points in her life (as have I). I was an IVF baby, the first child born to parents ages 46 and 50. Never sure if that has anything to do with my many health issues but it might...

I'm brand new here and as soon as I feel up to it I'll write an intro post about myself or something. My answer to this is complicated. I only JUST got the diagnosis of POTS and I'm not totally sure when my symptoms started. I was diagnosed with sinus tachycardia a few years ago and had problems with it before then. I also have severe gastroparesis (to the point that I am dependent on IV nutrition) and I've been sick with the gastroparesis for about a year. Of course the Gastroparesis and POTS are undoubtedly connected but I'm not sure which came first or even totally sure when either one started. I can say in the last year I have lost 70lbs. And I've battled severe malnutrition big time from the gastroparesis and from a severe C. Diff infection that happened a little over a year ago. I'm not sure if the severe dizziness (which was my first major symptom that lead my GI to suspect POTS) came from malnutrition (I had some scary low levels of multiple B vitamins) or if it was the other way around but I do know that around the time I became for severely dizzy (and it's only gotten worse even though my nutrition is way better) I started losing weight even faster. So I'm kind of a bit of mystery but for me, mega weight loss... likely more from the gastroparesis than the POTS though. But then again the two are probably so completely intertwined that it's hard to say.