Sophiekins

I recently saw Dr. Singer at Mayo for a drug study for POTS and he was very pleasant and seemed caring. I haven't seen him as an actual patient of his but one of the people who was helping with the study mentioned that he is very detail oriented and a good doc. Hope that helps!

Oh, and I did a little research in general on hyperadrenergic POTS last night and found a few studies and papers that were especially helpful in explaining the different subtypes of this kind. It's still very confusing but it sounds like even the researchers don't really know what all they're getting into. But, I did get the idea that with hyperadrenergic POTS neuropathy type stuff like what I've been experiencing is quite common. So, I'm gonna do a little bit more reading on it all and then I think I'll at least have some good questions to ask my new doctors. I had to switch from one system to a different system because I was just labeled a nutcase at the first medical system and my primary there was just sitting on her hands. But, now that I've been diagnosed with something I've got a new primary doc at a different system and I lucked out because she told me that she happens to have a couple other POTS patients! Woohoo! So, I didn't have to explain anything to her and she won't think I'm a nutcase. Although I'm sure a diagnosis from Mayo helps a lot! And, she wants to see me next week already because we weren't able to get through everything in one visit. Then I'll be seeing a cardiologist in the area who deals with POTS I guess. But, if he isn't any good I have a referral to someone else not too far from here. But, at least with my new (hopefully investigative) primary doc and a little knowledge from you guys and from these studies I found, maybe I'll at least know what questions to ask and what tests to ask for. Thanks so much!

Thanks so much guys! I will definitely check this info out!

Also, I guess I have the "hyperadrenergic" type of POTS because my norepinephrine level was really high when I was standing versus when I was lying down. So, I'm wondering if some of my symptoms could just be that I'm stuck in fight/flight mode as I would assume that would make digestion difficult because you're supposed to be relaxed to be able to have proper digestion. There are probably many different reasons why people have POTS. So, maybe knowing that I'm hyperadrenergic will help you answer some of my questions. Also, if you had the MCAD thing wouldn't you have a tendency to get hypoglycemic? The docs haven't mentioned much to me about my blood sugar and haven't mentioned diabetes or anything but my boyfriend and I have noticed that (when tested) my blood sugar tends to be on the higher end of things. But, again, maybe that's just because of the hyperadrenergic state? I remember one time when I was in the ER and they thought I had an allergy they gave me steroids and they commented on how high my blood sugar was but then they decided that was probably because of the steroids and the epipen I had taken. So, maybe being in a hyperadrenergic state might make you have higher blood sugar than normal??

Hmm...I see what you're saying. Eating can be a major trigger of my POTS symptoms, too. But, I got the impression from looking it up that if you didn't eat you would get weak and/or sleepy and/or possibly even pass out or something. Usually if I don't eat my body eventually adjusts and I can almost feel when it's burning away my fat as that process seems to be a much more smoother process than eating is for me. I got the impression that MCAD was when you didn't have the necessary ingredient to burn the fat from your body. Right? I guess I don't know what the symptoms would be for it then. When I eat and things aren't going so well I can get chest pain/heartburn-type stuff. Sometimes it's really, really bad! Lately, the chest pain hasn't been a big issue. I also get a pain at the very end of my ribcage especially on the left side but it can be on the right side sometimes. That's more of an irritated nerve-type pain (kinda sharp but not super super painful). My throat will sometimes tighten a little for a short time after about 15 minutes after eating. And, my heart might flutter and/or I'll feel like my breathing will kind of pause for a second and reset itself and I'll feel more relaxed but in a forced way for a little while after eating. It's not like I'm drowsy but just more relaxed for a moment. And, usually, I'll have a mild burning feeling in my chest when that happens. Then, I will get endless little burps that can last for hours and/or hiccups that last a long time as well. Usually the hiccups come closer to the end of an "episode" though and mean that the burping is coming to an end. Usually once things have moved down to my intestines things aren't quite so bad as down there seems less stirred up. However, I can have moments where I'll have a little crampiness. And, I often feel bloated. I tend not to have liquid bms but I do have much more frequent bms than I normally would. And, generally, they look a little more premature than they should be. But, not too horrible. When my digestional stuff was really, really bad (and before I was on PPIs or Zantac regularly) I would also get horrible burning in my throat and just in general everything was much more dramatic. Also, I could clock everything on the dot. After I ate, it was exactly 3 hours later that I would start getting horrible chest pain (like, think that you are dying chest pain). My left arm would go numb and I would sometimes get the shakes/chills. My throat would also be burning during this time. After an hour or so, I would then usually get hot and I'd kinda feel things move down into my intestines. Then I could rest a little and my throat wouldn't be irritated anymore. However, I could feel everything pushing down really hard and I would feel so bloated that my stomach would hurt from being stretched so much. It was almost like I looked a little pregnant! Then, it would finally work it's way out and my throat would start burning again and the process would start all over. So, what kinds of symptoms do you get, then? How would a person be able to know if they have the MCAD thing? Thanks!

Luckily, I've been able to exercise on land. (I'm not a fish by any means!) I've actually found that walking on a treadmill while it is at an incline momentarily helps my dizziness somewhat. If I walk flat, though, I can get dizzy very easily. But, that's fairly easy to push through. I actually feel much better overall when I exercise versus when I'm just trying to do normal things like cook (I'm only good for about 5 minutes at a time of standing in the kitchen, so I have to plan everything out to be very efficient). And, standing to hug my boyfriend is difficult, too. So, he only gets a little split second hug from me every so often before I have to lie down. Somedays I fantasize about being able to go through life in a remote control bed or on a remote control treadmill that is set at an incline. I might be totally fine then! I looked at the MCAD stuff but that doesn't sound like me. I wouldn't be able to go for very long without eating if I had that, right? I've always been able to go for a long time without eating, although it seems to vary some now. Fairly recently, though, I actually felt much better without eating as eating seemed to spring on my symptoms. I lost a lot of weight. So, that doesn't sound like that could be an issue with me. I'll have to check out the EDS site. I'll admit, I'm a bit in denial about the EDS yet. I mean, I knew I was hypermobile but the rheumatologist I saw at Mayo was all dramatic and told me I couldn't even play volleyball and that seems extreme to me. I never was one to play sports so I'm not grieving that per se but it just seems extreme. I don't have overly stretchy skin so I don't know. Plus, I would think one would want to keep their muscles as strong as possible. I'm looking forward to working with a PT who hopefully knows a lot about it. I've been having some neck, lower back and knee pain so I'm hoping PT can help with that. I'm set up to see one in awhile so I'll see what all he knows (if anything). In the meantime, I think I'm going to keep dancing (folk and ballroom) as I can. I've been folk dancing ever since I was in the 4th grade. I hadn't done it in the last few years. But, there is this one folk dancing group that I used to be involved with and they are a really relaxed and small group. I've explained my situation to the leader and I hope to go every so often and just see how it goes. Maybe I'd only do one dance a night at first or 2 of the easier dances. Some of the dances are just kind of like walking anyway so they're not super rigorous. We used to have a member who was in his late 80's and he managed quite well! Granted, he used to dance with me a lot because I was young and extra stretchy so I could accomodate his stiffness. So, maybe I'd better make sure my partners are young and spry from now on so that I don't overdo it with stretching. But, the good thing about dancing is that your partner can catch you if you start getting dizzy. One of the members gets seasick easily from all of the spinning so everyone knows to go easy on her when they twirl her. So, maybe I'll just avoid the spinning dances at first or request the same treatment as her.

Well, Mayo is currently having me try Remeron because my most debilitating symptom is probably my stomach issues when it's bad and they're hoping that will help calm that down. I lost about 20 pounds overall. I'm normally a buff farm girl and weigh around 150. I was a bit chubbier than normal when all of this started and so was 155. I got down to 131 or something like that at my lightest and I hadn't weighed that much since maybe 7th grade! My stomach improved somewhat with taking PPIs and Zantac and I've been able to get my weight back up to the 140lb range. But it appears that if I miss even one dose my throat at least will start getting reactive again. That's one of my symptoms...my throat will tighten and react to things seemingly randomly. The only thing I can figure is that I'm making too much acid in general and so now my throat is hypersensitive. One of the things it definitely seems to react to is citric acid so I try to avoid that. I used to not even be able to drink anything cold or my throat would instantly tighten. I also couldn't eat any fruit, of course. But, it's finally calmed down enough that I can drink cold things and eat a few raisins and other dried fruit. But, I still have to keep tabs on it. The dizziness and everything else is definitely hard to deal with but I actually had that somewhat badly as a teen and young adult and so I am used to that so it's easier to deal with. Back then, though, I primary just had the dizziness and feeling short of breath upon standing, fatigue, and fast heart rate. It was much more easier to manage as I pretty much always recovered quickly. I usually knew, for example, that if I slept in I'd have to wake up to feeling dizzy. And, then if I took a hot bath (which I loved to do) I'd have to deal with feeling super dizzy afterwards, too. But, it was just something I learned to push through. It was only really hard if it kinda stuck around for too long and then I'd really feel fatigued and I'd start feeling depressed. But, I found that usually only happened on days when I would laze around. So, yeah, I've pretty much had the low blood pressure and heart rate stuff ever since I was a teen. I think it was particularly bad as a teen because it was after my growth spurt and because my mother actually had high blood pressure so she cooked with absolutely no salt! I got used to not eating any salt then and never added salt to anything I ate. When I went away to college it improved some. I think it improved because I was walking to class all the time and so using my legs regularly. Also, I started eating a lot more junk food which, of course, has loads of salt packed into it. In fact, I kind of became a bit of a junk food junkie. I started drinking soda for the first time. I never liked it before then. And, I think the caffeine helped to sustain me, too, although it could be too much at times. And, I'm sure I wasn't drinking enough water. Even though I had improved some, I still had bouts as a young adult and pretty much every time I walked up the stairs to my dorm I would get a little dizzy and short of breath and my legs would feel heavy. I even had a handful of moments when my face would feel randomly numb and as if I was having prolonged low blood pressure. But, usually, after a little rest or something I'd be back to normal. So, that only ever lasted a couple hours at most. One time, on my way to a CNA class, the nurse used me as a guinea pig to teach about how to take blood pressure. I had just woken up, downed a Pop-Tart and had just run into class and up the stairs so, of course, my heart was pounding and I had just felt a little dizzy from taking the stairs but this was fairly normal to me and I wasn't feeling too incredibly dizzy. So, after she took my blood pressure she asked me if I was feeling alright. I said, "Yeah, I always have low blood pressure," and smiled but she looked at me like I was about to keel over or something. Ha! Then, she asked for a different guinea pig. Also, I do remember times as a teen when I would wake up with one arm completely numb or something but back then I just assumed I had slept on it wrong and it didn't happen enough to be concerning. And, I never felt so incredibly out of it like I do now or nearly as many tingling type sensations. Once or twice as a teen, I remember feeling my heart flutter. But, it passed really quickly so I didn't worry about it as I seemed fine. I just made a mental note of it. These days my heart will flutter pretty much every day more than once a day and for awhile there it would happen literally after ever meal I ate. So, overall, I've definitely had a history of especially the low b/p and fast heart rate stuff but I always felt like I recovered rather quickly from my bouts and they weren't nearly as debilitating as they are now. Plus, everything was a lot more predictable. I knew that if I walked up steps or held my hands above my head to do my hair for too long I'd get short of breath and dizzy. So, I just wouldn't keep my arms above my head for too long. I've also noticed that I have a habit of fidgeting with my legs while I shop. I'll walk on my toes and then on my heels or do a little version of fake tap dancing while considering which type of cereal to buy. I used to think I did this because I was just a big kid but I think I probably do it to keep the dizziness I get from standing too long at bay. I also don't feel bad about leaning on my cart and using it as a scooter, which I still do. I'm now 31, btw. My recent symptoms all cropped up again shortly after I turned 30. It seemed like the dizziness hadn't been a huge problem for a number of years prior to it hitting real bad again (plus, it got really, really bad) so that's why it seems so sudden and out of the blue to me. But, looking back, I guess I've had this stuff for a long time. The Remeron doesn't appear to be doing much so I'm waiting to hear back from them about possibly prescribing something else. They had mentioned beta blockers but wanted to help me calm down my stomach first. It sounds like there just aren't many great drugs out there for this stuff. That is interesting that you mention leading a very active life before this. On some of the Mayo brochures they mention stuff about how POTS tends to happen to overachievers more and I hate to think this would have a psychological component but I do wonder if maybe overdoing it can bring on a really bad bout. I'll admit that I was an overachiever in school. However, with the EDS I think I'm pretty much just physically predisposed to this. And, there are tons of times when I was running myself ragged that I didn't end up with a bad bout of this. I mean, it was generally something that was only a problem when I wasn't warmed up for the day. So, at night, I could pretty much stay up forever and study or work on whatever project. And, the less I slept in, the less of an issue it was, too, in general. However, there were a few times growing up that I remember getting a mini-bout of it when I just hadn't had enough sleep or something like that. And, prior to getting it really bad this last time, I had been running myself ragged by being in a community theatre production plus working full time. I was also taxing myself physically because I was carrying all of my hair and make-up items and everything I needed for the show to and from the theatre in a giant bin every night. I probably should have let one of the guys in the show do that carrying but I always liked to be a buff farm girl. Plus, in general, I'm not a fan of cardio and so hadn't really been working out at all. So, even though I was very active I probably wasn't "fit." And, I wonder if that makes a difference. Like, maybe I was just doing too much too soon all of a sudden instead of easing into it. And, maybe I just didn't have enough leg muscles anymore because of the boots I had been wearing. The second to the last performance I got especially nervous because all of my co-workers were there and they had never seen me act before. Granted, I had been acting for years, but I was still really nervous because I was going to be walking around all sexy-like on stage and my boss and everyone would be watching! So, maybe that extra jolt of adrenaline put me over the edge? I also injured my neck seemingly shortly after the show was over as I got huge muscle spasms and an MRI showed a herniation at C5-6 later. But, most of the spine docs seem to brush off the idea that that had anything to do with causing all of my symptoms. They say that any number of people may be out in the general population with this very same "minor" herniation and they won't have any symptoms at all. However, I don't think any of them have truly taken into account my EDS. I would think that what might be a minor herniation to someone who is normal, might be a catastrophic event to someone's spine who has EDS. I mean, my muscles would react differently, one would think. I got some bad bouts of dizziness before the official muscle spams, though, so it's hard to say. Either way, the neck pain didn't help me any as it caused me to rest and to get deconditioned. I don't know. I've been searching for answers, obviously. Thanks for your thoughts and sorry for rambling!

Hi! I'm new to this forum and not even sure if I'm posting this correctly. But...I was recently diagnosed with POTS at Mayo Clinic finally. I had a heck of a time getting diagnosed (as it sounds like most people do...anxiety this, anxiety that...yadda, yadda, yadda). I am hypermobile. According to the most recent rheumatologist I saw I have EDS Type III (although he said I was kind of a "teaser" and that I was in between Type II and Type III. I am new to this stuff so I'm not certain if EDS III is the same as just regular hypermobility or what? As a teen I had POTS symptoms but I was always able to just push through them and they were never accompanied by chest pain or digestional issues. The POTS symptoms got super bad last year at this time kind of suddenly. Granted, I was in a play at that time and also working full-time so I was burning the candle at both ends. So, even though I'm kind of set up to have POTS anyways, what sorts of things really set it off for other people? I've spent the whole year battling it and just when I thought things were improving a little I'd be down for the count with a new symptom. These days I'm not working (but hoping to return sometime soon...ever the optimist). And, quite honestly, I'm not shocked by any random aches or pains or anything else that happens to me anymore. So, I guess what I'm wondering is do other people with POTS get really bizarre symptoms, too? Like, do you feel drunk? Do you have random tingling numbnesses? Muscle twitches? Nerve type pain sensations? I had my neck spasm up for quite some time for awhile in the beginning and I'm wondering if that could have just been a POTS symptom or if that was a real injury? I still get some neck and eye pain here and there but it's improved a lot. And how bad can the digestional issues get for others? Mine has gotten so bad before that I literally couldn't eat much of anything for awhile. If I tried to put food in my mouth, I would have the urge to throw up, which is extremely unlike me normally. And...how long does exercise usually take before it "takes hold?" I was told by a Mayo doc that it can take 6 to 12 months but I'm just curious what others' experiences have been. And, are there any specific exercise tips that you would suggest? How does the exercise even work to "cure" you exactly? Any suggestions about supplements I could try to take? I've wondered about herbs that could help my vessels to constrict? Also, because of the hypermobility, does eating protein help? Should I be taking anything in particular? I know they sell oral tablets of collagen but do those even do anything? Thanks so much! I'm sure I'll have a bazillion more questions later. It seems like, no matter how much I've read up on POTS myself, there's just not enough info for me. Guess that's because they obviously don't know much about it in general. So, I guess I'm in need of hearing about some personal experiences of others!!! Looking forward to having some understanding Potsies to bounce things off of!!!! Thanks again!