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outofadream

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  1. @DizzyGirls Hope the cardio has some good options for your girls! That's brilliant that you made sure he'd done his homework ahead of time and was prepared, haha. It makes me so frustrated that everything the medical profession doesn't thoroughly understand yet they ascribe to something psychological. It's so terribly unscientific, not to mention harmful and disrespectful to everyone involved. I can imagine how you must have felt when the doctor said that, I'm sorry you and your girls had that experience (and you as well @Pistol, especially with everything you went through! I'm glad you got access to the IV fluids and they've helped!) My issues for the moment are being defined as a "functional movement disorder," which basically means "something isn't working right, but we can't see it on any kind of scan." They did an eeg on me a well to try to rule out seizures, and that came back clean. I kind of got the sense that movement-related issues are a field that there's still a lot unknown and more research is really needed. And there are a lot of downright shameful assumptions. Even the doctor who diagnosed me made an off-hand comment that maybe it had something to do with the "stress" of living with a chronic illness (she also didn't know anything about POTS, which probably didn't help). I've noticed my movement issues are often worse after being up on my feet awhile, which certainly seems to suggest there could be an autonomic connection somewhere (and I think my POTS doc suspects there could be one too). I really appreciated you mentioning the video...anything that clarifies how this all hangs together is helpful! But mostly, I hope your cardio has some good selections for beta blockers lined up for your girls and that they get some relief very soon Will be thinking of you all, and please do keep us posted.
  2. @Derek1987, I can certainly relate to the misery of the BP swinging up and down. I haven't gotten a good reading during the worst of the recent attacks, but in the past, my bp often seemed to swing back and forth when I had a lightheaded attack. I'd take one reading and it would be low, a few minutes later would be high, and that would repeat. I suppose that does explain why I get the lightheaded feeling in waves (presumably every time it does a short but significant drop). Then again, I've never noticed the strongest relationship between my vitals and how I actually feel overall. I can sometimes feel terrible even when they're perfectly normal and at least passable even when my bp is a little on the lower or higher side. I hope you're having better luck smoothing out yours!
  3. I've gotten the shot for years without it seeming to have any effect on my POTS symptoms. The one possible exception was last fall. In retrospect, I think I was coming down sick with a sinus infection/cold the day I got the shot, and didn't realize because I didn't have much in the way of symptoms yet. The night after getting the shot, I spiked up a 101 fever with body aches and generally feeling terrible. I assume my immune system kind of went into overdrive between reacting to the shot and fighting off an illness, and hence the strong reaction. I felt a lot better by the next day (except for the regular cold/sinus infection symptoms, which ran their course about a week later). The only reason I mention this is because I did notice a worsening in my POTS symptoms around that same time. It's very possible the POTS symptoms were already getting worse (and were completely unrelated to the shot), or it could be that because my immune system was really revved up, that set something off. I have noticed that while minor illnesses and shots don't usually seem to cause me any issues, if I'm sick for an extended period of time or with something more serious, I've sometimes had some weird and erratic symptoms awhile after that.
  4. I think these are awesome victories! And frankly inspiring, knowing how much it takes to make them happen.
  5. 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!
  6. 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.
  7. 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!
  8. 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?
  9. 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.
  10. 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!
  11. 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?
  12. 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.
  13. 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.
  14. 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!
  15. 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!
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