outofadream

Thank you @Pistol for the advice on the holter, I hope it tells them something about all this. Yeah, they told me that the tilt table showed vasovagal syncope as well as POTS too. I hear you on the usual suggestions never helping much...in the past I think I got some benefit from the beta blocker and compression, but during this relapse, nothing so far seems to be making much of a difference. The very wishes to you too, I definitely hope you get more relief from all of this!

Thank you Pistol, I truly appreciate all your thoughts and insight. It sounds like you've been through a heck of a lot with it over the years. This is part of what I've been trying to tease out...I'm not sure yet if my hr is high and THEN dropping, or if it's low the whole attack. I've never been sure of my POTS type, but had a similar experience with tilt tables years ago...they told me hr and bp rose, then dropped like a stone (fainted both times). They have me on a holter now, so I'm hoping that might shed more light on whether that's what's happening now too. Thank you gertie. I definitely hear you on the fear, it's such an awful feeling and very difficult when you don't know when it will hit. I hope you get some relief too.

Hey DizzyGirls, just been thinking of you and your girls and wanted to check in. Any luck in finding a good beta blocker that's working better for them? The movements do sound really similar (the flailing ones in particular...those are tough!). I think I've had that too where the overload gets so bad it's like the world stops...just freeze, can't talk for a brief time, etc. I sure hope the cardio has some ideas, I know it's got to be hard to cope when there's so many potential triggers!

I'm so sorry it progresses to such a bad level Pistol! It sounds very challenging and miserable to have to deal with I've been on a beta blocker for years, but the doctor never seemed to feel I was a good fit for fludrocortisone or midodrine. My typical POTS symptoms in recent years have tended more toward stubbornly high heart rates and relatively stable bp, so that was working out..at least, until these attacks started up a few months ago. My neuro and I are still trying to work out what med adjustments or even a different med to try now. If you don't mind, I'm curious what your heart rates are like during your attacks? During the worst of the attacks, I noticed mine seemed to be sitting at normal and wouldn't come up in the situations that usually make it go through the roof. Sometimes, it even felt like it was suddenly dropping. Is that what you tend to experience as well?

I definitely appreciate the suggestions, Pistol. I just don't understand these spells. Some of them seem to be set in motion by things that could well trigger a vasovagal response, but once it gets going...it's like it doesn't want to stop. I'll get waves of this intense lightheaded feeling for the next two solid hours. I've tried drinking cold water, lying down, etc, but those only seem to make it worse. The only things that seem to help at all is sitting back and tightening my legs and trying to get the accompanying stomach upset to calm down. And even that doesn't necessarily shorten the attacks or help much.

Hi DizzyGirls, I wondered if you would feel comfortable saying more about the sensitivity and movement symptoms your girls have been having? The reason I ask is because a couple years ago, I developed bouts of very strong sensitivity to things like light touch or sounds, and also some intense jerky movements. I spoke to my neuro about both, and he hypothesized that increased adrenaline was overstimulating my nervous system, leading to the sensitivity and possibly "spilling over" into the movements. I don't know if that would relate at all though, since mine wasn't triggered by a change in beta blockers. I'm sorry your daughters have been going through such a hard time both in finding a med that works for them, and facing such tough neurological symptoms I hope you guys get some better answers and relief soon!

Hi Aida, I'm so sorry you're dealing with this. I can relate strongly to that feeling of floating (I felt like I was on a tilting boat and couldn't get off). I had to walk holding onto the walls when it was acting up, and it also seemed to happen regardless of what my stats were like. Mine seemed to track very closely with how bad the POTS symptoms were though...it actually improved significantly over time (although now that I'm having a POTS relapse, it's more noticeable again). One doctor suggested vestibular rehab might be of possible help, although I didn't get the chance to try it yet. I'm also curious whether your neuro ever thought any kind of vertigo or balance testing might be helpful in pinning it down?

Hi bombsh3ll, thank you a lot for the thoughts. I'll definitely try the cold water the next time it happens, it's really good to know there's strong evidence that helps! I'll give elevating my legs another shot too. I can understand being extremely frustrated with how limited the advice seems to be when it comes for dealing with presyncope... it's such a miserable experience to keep having.

Hi all, it's been awhile. I've been having these nasty spells where I start to get that definite and strong presyncope feeling and turn white as a ghost, but if I lie down...it doesn't seem to get better and often actually seems to intensify. If anyone else has experienced this, has anything helped you? I know usually they tell you to lie down if you feel faint, so I'm at a loss as to how to manage these attacks better.

For some reason my neuro chose not to do an EMG. He only did an MRI (I assume to rule out MS?), which came back clean. I hope your autonomic neurologist has some answers though! I hear you on the electrolyte concerns...haven't been on florinef but I have been on PPI's for a long time, which can potentially lead to low magnesium. I find the twitches really fluctuate too, so when they're bad sometimes still go through that panic...and then the electrolytes always turn out to be fine like you said, haha. Can imagine it's even worse trying to deal with PVCs at the same time!

Hi andybonse, I started with all over tiny muscle twitches a few years back too. Same story with normal electrolytes. The neurologist diagnosed it as being benign fasciculation syndrome in my case. I've always wondered too about how it connects with the autonomic issues though (my neurologist at the time knew very little about POTS and couldn't weigh in on any potential connection). The twitches started years after the POTS symptoms began for me, but the POTS was having a real nasty flare at the exact same time the twitching started. I do think sometimes the twitches are a bit better when blood flow is better, and they're always REALLY active just after doing physical activity like exercising. They certainly are annoying and tiring, sorry you're having to deal with that on top of all the other struggles!

I’m sorry it’s taken so ridiculously long, but wanted to make sure you all knew I really appreciated your thoughts on this. Doctor ended up doing doppler to make sure no blood clots (was clean), and concluded that since only happens when I stand up, is probably some kind of POTS shenanigan. I wonder if it’s because I went through a time where wasn’t able to be up on my feet much, and then started suddenly standing for a much longer time than body had been used to...maybe caused some manner of pooling wasn’t getting before? Compression stockings definitely seem to help, so that’s been good at least. Will finally be seeing one of the POTS doctors on the official list in January, so hopefully he can shed some light, since it’s been kind of a busy year in general for new symptoms popping up unexpectedly. I really appreciated you guys putting me on the right track though, the link to dependent acrocyanosis was particularly helpful Clb75. I definitely get that kind of pooling too statesof, the old tomato hands problem :/ I don’t sit too often that way TCP because it makes the POTS so surly, but it does seem to cause the leg pooling when I do. Thank you all again, seriously!

Been playing the old game of “POTS or not?”. I noticed this past month that every time I stand up, the creases behind my knees turn a bruised reddish-purple color, and then a flush of red creeps down just the back of both calves and a bit up into the back of the thighs. As soon as I sit down and put my legs up, both the dark crease and redness go away almost immediately What’s been puzzling me is I don’t see much evidence of blood pooling elsewhere…the front of my legs, ankles, and feet look perfectly fine, no really obvious pooling. Haven’t noticed any obvious changes in POTS symptoms either, although it’s been so unpredictable lately that it’s hard to be sure. The only thing that’s changed (and not sure if it’s related), is been getting some vague leg pains haven’t had before…burning, tightness, tenderness that comes and goes in various places. Has anyone here happened to have blood pooling like this? Just trying to get a feel for if this is POTS’ latest trick, or if I’m barking up the wrong tree

Hi shathaway, I think I’ve been experiencing almost exactly what you’re describing here…for about a year now, been getting recurring low grade temperatures in that range that come with tiredness, weakness, aching all over, etc too. Unfortunately, I’m afraid I’m still in the process of tracking them down too, so I don’t have any definite answers. I’m curious though, have you ever tried taking any fever reducing medication (ibuprofen, acetaminophen) for them? I might be wrong about this, but my understanding is that true fevers will often respond to those meds, but temperature regulation issues don’t necessarily? Certainly nothing I’ve taken seems to make my temperature go down, so I’ve strongly suspected it might be dysautonomia related in my case at least. I also found that I often get spikes just after being on my feet…I’ll get something like 99.7 just after being up, and then half an hour after sitting back down, it’ll be back down to around 98.6 again. And like Ancy mentioned, mine definitely track with my cycle too. Even if I’m lying in bed doing nothing, those temps and symptoms will also show up anywhere between 3-10 days before my period, and last pretty much all day every day until it shows up. I do hope the cardiologist can give you some answers! Those symptoms are pretty uncomfortable and I've found they really slow me at least down at times, so I hope he has some insight and suggestions that help.

Hi navyblue, sorry you’re fighting a nasty cold on top of everything else. I can understand the concern (every time I’ve gotten a cold on top of POTS, feels like death warmed over AND feels like it’s going to last forever). Not fun or easy, particularly when you’re still trying to sort out what the heck is going on. For what it’s worth, although it sometimes takes me longer than it used to to get over colds, it’s mostly that it takes slightly longer to get full energy back, maybe an extra couple days to occasionally a week. And usually even during that time, it’s a gradual process of feeling a little better each day. I haven’t personally had the experience of a cold triggering a full blown POTS attack, or anything really nasty like that. I hope you’re able to get some rest and go easy on yourself till you feel better, and I hope you do start to feel better soon!

Hey Heartandsoul, sorry about the cold, that does seem terribly unfair at this time of year :/ I'm curious, were you sitting or standing when you got the 100 reading? I haven't noticed that heat drives my temperature up, but recently found that standing for more than a few mins raises it every time, sometimes even to a little past 100. It goes back down a few minutes after sitting. I wonder if it’s something similar, some form of temperature regulation dysfunction...?

Hi Jamesldavis1, wish I had more to offer. I tried Effexor several years back (for depression). My own experience was that it caused somewhat more heart racing in the first few hours after taking it, which was noticeable, even when lying down, and enough to cause me to be pretty tired for awhile, but nothing dramatic or overwhelming. Everyone’s different of course, I know some people found it helped with their POTS. Is there someone you could ask about your concerns, a doctor or pharmacist? I know it’s extremely difficult to get info on how a given medication interacts with POTS, but they might be able to tell you at least whether it would be a concern with high heart rate or with raising bp. I know they also started me on the lowest possible dose, which I think helped a lot. The other thing that I really wish someone had mentioned is that it's possible to get some nasty withdrawal going back OFF Effexor. I was only on it for a month or so, at the lowest dose, and it was still brutal for the first week off and took about a month to recover fully. I don’t think everyone gets withdrawal from it, but since it’s known to cause that issue and especially with POTS sometimes causing sensitivity to meds, it might worth knowing. I’d definitely recommend that if you do try it, and then later find you want to get off of it or drop the dose, have people around for the first day or two, and make sure you have someone you can call for advice in case you do run into issues.

Something like that just happened to me too! It all started with a trip to see the nurse practitioner (new symptoms, always good times). She wasn't happy when she found my heart had suddenly decided this was a 180 bpm kind of day and it wasn't too interested in slowing down. So she sent me off to the ER for some quick testing and IV fluids. So of course at the ER they ran an EKG, and the kindly woman reading it told me it was fine. But when I got the tests results back, I definitely did a double take when I saw the words "abnormal" and "non specific ST wave abnormalities". For what it's worth though, I've always been told my EKG's are normal, but when I looked back through, I found that almost every one of them had some notes about T waves or other cryptic commentary on them. I'm assuming that since had all the usual echo, holter, stress test, etc, they've concluded it's not a problem, just a "creative" variant on normal, and not going to drop dead of it. The latest one definitely said that they'd compared it to prior ones and concluded there wasn't any "significant change". I hear you on the running around with twizzlers though, it's definitely an "uhhh...." kind of moment. Will be keeping my fingers crossed that the tests come back soon with the news that the computer villains are to blame! (Also, I hope your finger was OK! ATM machines must be hungry beasts...)

Hurrah for the happy dance! I'm glad you guys got some initial answers, and that's awesome that there will be a clinic with more expertise coming soon! I hope the florinef's been going OK so far, will be keeping fingers crossed that things keep looking up.

Thank you guys so much, your input really helped. I took your advice and brought up the issues with my doctor, and decided to go back to the beta blocker was on before (Nadolol) for the moment. Just trying to get things more stabilized at this point, and seem to be doing better on it so far than was with the Metoprolol. It was just a relief to know I wasn't the only one having trouble with Metoprolol and to get some explanation as to why. Hope those of you who had bad experiences with Metoprolol or bb in general have been having better luck with other treatments :/

Hey p8d, just wanted to say hope you're feeling better, and getting some of the med reactions sorted out :/ Been going around that merry go round too with the lack of answers and weird reactions, so I know how exhausting and disheartening it gets, especially when you keep having to wait for the next step. Hope things are gradually getting sorted out though, and that some relief is on its way to you very soon!

Hi all, looking for experiences of those of you on beta blockers. For those of you who found your bp went UP when you started a new beta blocker, did it come back down in time? If so, how long did it take to settle? I’ve been trying my luck with Metoprolol, and was a little surprised and uneasy about the first day side effects. I knew was likely to cause extreme tiredness, but bp was the highest I’ve seen since a tilt table several years back on a REALLY bad POTS day. General POTS symptoms weren’t too great either (hands and feet like ice, slightly blurry vision, vertigo, nasty head pressure, brain fog). I’ve also been running recurrent, low grade temps for some time now, and it rather puzzlingly seemed to make those worse as well. I’ve been on a different beta blocker before, and it did NOT seem to have these initial side effects, so trying to get a sense of whether to try to stick this one out and see if I adjust, or if that’s not likely to happen and just isn’t the right beta blocker. Any insight and experiences are greatly appreciated!

Hi Dizzygirls, just wanted to say sorry your daughter had such an awful night, and hope she's feeling a little better now. :/

Hey Mike, for what it’s worth, I’ve had almost exactly the same experiences you’re describing. Sometimes it feels (or even looks) like things are shifting around slightly, definitely had the disconnected from the world one (I REALLY hate that one), and the disoriented/spaced out issues. I haven’t noticed issues with my glasses or contact lenses, but particularly if I’m on my feet too long, I get disturbances something like you describe…sometimes seems like looking through a fish eye lens, where everything is slightly “bent” or things look further away than they are, like I’ve suddenly grown a foot or two. Definitely disconcerting! I get that slightly blurry vision too, and pretty sure it’s tied with the pupillary dysfunction for me, because if look in a mirror, can sometimes SEE my pupils are bigger than usual. I hear you, I’m the kind of person who hates stuff messing with my mind too (refused to get drunk or take drugs either, for about the same reason…everyone in college thought I was very boring, haha). I still find those symptoms some of the hardest to live with, because nothing ever feels or seems quite right when they’re happening, and that can be SO unsettling. It can get very painful and isolating too feeling like you’re living in some alternate reality from everyone else, when that disconnection is being particularly nasty. For what it’s worth, though, I do think these issues have gotten at least somewhat better for me over time. One thing I found helped was to do what it sounds like you’re doing right now, keeping an eye out for what triggers them. I find that as I learn more about what situations they happened in, they become somewhat less unpredictable (it's really hard when they're pulling unexpected sneak attacks all the time, and you have absolutely no clue why). Also, that helped me figure out what to do for some of them..for example, found it helped to rest and lie back if the blurry vision was getting really bad, and found that being on my feet in shorter intervals with rests in between would ease the disorientation and weird visual stuff some of the time. Everyone’s different, but I also found it helped to strike a balance where I eased back into doing some of the things I was uneasy about, but in VERY small doses. I had that same trouble where it was so disorienting and overwhelming to go outside too. I found it helped to encourage myself to go out for very short amounts of time, letting myself rest and go back in where I felt safe when I needed to. But over time, it seemed like the gentle exposure actually helped, like my body and brain started to adapt in a way, and the issues became less intrusive. It also really helped to have people around who could help when I was getting really out of it and disoriented, so I didn’t have to worry about whether I could make it back home. Again, everyone’s different, and hopefully others will have more insight about their experiences, and how they cope with or treated these issues, but hang in there…you’re definitely not alone!

Hey db2504, I'm curious what you meant by paranoia. I'm not sure if this is what you were thinking of, but very rarely, I'll get what I can only assume is a spectacularly large adrenaline rush, and everything suddenly feels dangerous and threatening. It's not that I actually believe people are going to hurt me, but it's like my brain is suddenly interpreting everything around me, every move as a threat and danger. I'll find myself jumping, shrinking back, etc when people get too close, even though I don't mean or want to. It's awful, and somewhat embarrassing when it happens. I don't know how much truth there is in this, but someone once described the sympathetic nervous system to me as being like an alarm system. When something is wrong (whether that be too little blood getting to our brains or some danger in our environment, like an oncoming car) that alarm bell goes off, adrenaline gets kicked out, and it all produces a feeling of something being terribly wrong. I could imagine that if the POTS seriously imbalances this system and sends it into some kind of overdrive, where it's producing huge amounts of adrenaline, we might get a very strong sense of anxiety, strong enough to make us FEEL in danger or like something terrible is happening. And maybe sometimes, the adrenaline and that feeling is so strong that our brains start to see danger everywhere for a time, including sometimes making us jumpy or uneasy with people. Certainly the way she described it, people's brains automatically react to adrenaline and the feelings of danger by looking around to find the cause, if it isn't something obvious (like an impending car). I can imagine that if our brains can't find one (because the issue is the system itself, not something in our environment), then our brains might just keep looking, seeing potential danger everywhere until they can pinpoint what's causing the alarm bells, or until the alarm dies down again. Again, I have no idea how true any of that is (my knowledge of the nervous system in general is pretty darn shaky), or even if that's what you meant by paranoia, but if you do happen to be experiencing something like that, just wanted you to know you're not alone in it.