turtlefairy5

This may sound extremely crazy and off-the-wall, but I'm just throwing stuff out there - GERD? (acid reflux)? I had coughing really, really bad with GERD; it was like I had a cold that was hanging on and would flare up when I ate or got upset or exherted myself. Does the warmth feel like possibly hot burn at all? Again, just throwing something out there. Amber

I don't know if it's helping with your POTS or not, some other people can weigh in on that, but it certainly seems to be helping with your pain and seems to be encouraging you so, whoo-hoo physical therapist? Is he cute, too? haha.

I am the same as all of ya'll here. I wouldn't sleep without something to put me down first of all (Seroquel, it's a crazy med, not a POTS med). I don't feel physically or mentally capable until at least 1 or 2pm (that might have something to do with the Seroquel, though). I get tired again sometimes in the late afternoon or evenings, especially if I've tried to shower or take a walk or go out at all. I'm pretty much tired 24/7, though, but sometimes my anxiety issues make me feel tired + wired at the same time. Around 8 or 9pm, though, I'm up-up-up wakey-wakey again, until the Seroquel finally kicks in (between 12 and 2am) and I start the cycle all over again. I hope you get it worked out. Amber

Cat lady, it's good to hear that POTS in most cases isn't progressive. Very relieving (did I spell that right?).

I can't offer any advice or help (I'm a lesbian), but I would like to say that I find it rather refreshing to hear from a man concerned with this issue. I don't hear that very much. Good luck! Amber

oh yeah, I'm sure I probably have some sort of sleep disorder issue going on. Absolutely. I don't know how they would even study me or get to see me sleeping at all, because from what I see the sleep study rooms are dark and quiet, and under those conditions I just don't sleep at all. Can they get any information from you just laying there awake all night? Also, there's the money issue - I'm very quickly running out (took out my retirement at the age of 29), and I don't think I could afford it even with health insurance. I don't really hear voices particularly at night or just before sleeping or when waking up. They come more when I am in a depressed phase, day or night, and it just takes on a different aspect of the critical voice in my head. When I get really, really depressed, I start to hear a voice in my head telling me to hurt myself/kill myself/etc. And I seem to have a very loose definition or sense of them not quite being my voice. It's so difficult to describe. It isn't auditory. Anyhoot, thanks for the help and advice! Amber

Thanks, everyone! Yeah, I thought about asking my doctor to increase the dose of Ambien. I am very, very difficult to put down. Some people can lick a tablet of Seroquel and sleep for hours, but I was up to 100mg at one point. I have a long history of insomnia, plus some post-traumatic stress issues. I have to sleep with a light and the t.v. on, even though that's not recommended, because I will really freak out really bad without those things. I'll feel like there's a demon or ghost in the room coming to attack me. I've had some hearing-voices issues in that respect, sort of. The t.v. and light keep the monsters away. I've considered Abilify and Geodon, but they can have more of a stimulating affect and potentially bring out my mania/anxiety. I'll get this worked out eventually, hopefully. Like POTS, it can be a long journey trying to figure out MI. Like Katja experienced, it can be confusing to diagnose and misdiagnose, and then difficult to treat. Thanks for the encouragement and advice, ya'll! Amber

Thanks so much, Jennifer. Kind words and sympathizing (I know you can empathize, too) really help me to feel better and try to calm down a bit. And I should say that my mental illness is bipolar disorder, just in case people are scared of me from that post. HA! Not too scary, though serious enough. I try to joke about it - you could say I'm squirrly, but not quite batty. Amber *edited to add that I just realized for the first time that your avatar, Jennifer, is an owl. I've been looking at it and thinking eagle all this time. Talk about brain not working right. Owl makes more sense. Ha! Good grief. (rolling eyes at myself)

Okay, so background info. first: I have mental illness. I've been taking what's called an atypical or second-generation antipsychotic (AAP). Due to weight gain, doc wanted to switch me to a traditional or first-generation antipsychotic (AP). But traditional antipsychotics carry with them some pretty scary side effects, things much more scary than weight gain or diabetes, though apparently rare. In any case, I've been tapering off of the AAP in preparation to go on the AP, but, ultimately, I got freaked out and just couldn't do it. I thought (hoped) perhaps I could get off the anti-psychotics all together (I'm on other supportive medicines) and treat my chronic insomnia with Ambien (heretofore the AAP's have helped me sleep). I took 5mg of Ambien last night, but did not sleep. At all. Not an hour. Not a half hour, not even a 15-minute doze. This is typical for me if I don't have a chemical (and apparently a sufficient amount of a chemical) to put me down. By this morning, I felt incredibly weak and shaky and nauseous. I woke up my mom and started crying hysterically. I've felt this way all day. I still haven't slept. I think I might've had a light 5 - 10 minute doze. I feel sick, like I'm coming down with something. I'm having palpitations, and I keep taking my pulse, but it is within the normal range when I am laying down (elevated when I rise, of course). I've taken my temperature, but it was normal, though I feel feverish. My eyes have been watering - they're red-rimmed, I'm pale, my nose has been running, I haven't had an appetite, and I had diarrhea. Also, fluid seems to be running out of me at an alarming rate. This morning I had a couple glasses of gatorade, and over the next couple of hours I was up to the bathroom 5-6 times. I think I must've pee'd out more than I took in. I would go to the bathroom, return to the couch, and immediately feel like I had to go again. Why? Why-why-WHY? This is (I know this will be censored) ****. Aggghhhhhh. I can only type out a scream on this forum because I'm too weak to scream for real. Amber

It's not necessarily getting a cold, but anytime when I have what I guess you would call a POTS flare-up (and mine are relatively minor and short), I just get this anxious feeling that I'm never going to feel better, or it's going to get worse, or that I'm really in trouble this time. I start having all kinds of worries, like what if the other medication I'm taking unrelated to POTS is affecting my condition but the doctors don't realize it? or I worry that there's going to be long-term damage from the symptoms of POTS (the tachycardia, the palpitations) that the doctors just don't realize yet. I get freaked out about my body being in a weakened state - what if I get a serious virus? - could that mean that, because my body is so weak and less able to handle these things, that I could die from something that maybe someone else may be able to come back from? All that kinds of stuff. Amber

I mentioned on a post that I've become fairly desensitized to my high heart rate when I stand - I don't freak out as much, but there's another aspect I've noticed. When I get that run-down, strange kind of different-than-average-fatigue that comes with POTS, or especially when I feel like I'm coming down with a cold, which I know I'm going to experience at a worse level than "average" people and is just going to really, really be bad for me, I get very nervous/anxious/upset. I get a sort of health anxiety, sort of obsessive, and I start worrying a LOT. Thoughts that are irrational, especially based upon prior experience, start running through my head, like "This is it, I'm never going to get better from this, my POTS has progressed to a whole 'nother, even more disabling level." Just that sicky, icky, really tired, can't go to the meeting I had planned on, or shave my legs like I wanted to feeling really makes me very anxious and worried. Anybody else get that way? Amber

I still have an increase of heart rate when I stand, but since taking my beta blocker there has been one important change thus far: I haven't been in the ER with an enormously high heart rate. Now, part of that is I've gotten used to/come to accept/don't freak out as much when I see my heart rate in the 160's or even 170's (I do still get nervous, but not as much) - I've become desensitized, at least so far as my anxiety is concerned. I think it keeps my heart rate from reaching the really high high's that it used to. Amber

How does that motown song go? I second that emotion! I hear you, completely. I had a cold about a week or so ago, and it just totally wiped me out. I couldn't attend a regular weekly meeting I have, which really frustrated me, because I have good social contacts and friends there - which, as you know, when you have POTS, are often hard to come by. I often feel very isolated, very much like a shut-in, which, to a great extent, I am, simply because my lifestyle isn't socially acceptable to the lifestyles of others my age (29). When you get a cold, or a little stressed, you're reminded - oh yeah, I have serious medical problem that really prohibits me. I live, wait for, hope for, the good days. The bad days really get me down. Amber

I would definitly recommend a pill splitter. You can get them pretty cheap at a drug store, and it's well worth the investment. I would be at a loss without mine. It has little rubber flaps that help you place the pill, and all you have to do with mine is essentially close it quickly and with a little (very little) force to snap the pill in half. It's much easier than trying to deal with a knife, and usually more accurate, though sometimes I do mess up with it if I don't place the pill well. I can split pills with or without the scoring down the middle. It's called a "safety shield" tablet cutter, manufactured by Apothecary Products Inc. hope that helps! Amber

Are you using one of those pill splitter things?

I've always been shy/socially anxious, but I've noticed only the last few years or so that I get completely hot-faced and turn noticeably red when I try to talk in a group, or even when I say something randomly embarrassing to one person. I wasn't always like that with the extreme blushing, and the blushing only make me more anxious, which makes me turn more red. urggggh. I'm not sure if it's related to POTS or not, except that it has been occuring, it seems, only in the past few years.

I wonder if the heat in the kitchen when cooking has anything to do with it, in addition to the prolonged standing? Amber

Just to update, I went back to the pharmacy today and the pharmacist had called my doctor and he had called in an alternative - not a different medication, but the "regular" version - plain ol' metoprolol instead of the extended release. So I'm supposed to split the tablet and take it twice a day now. I'm glad I read the little pamphlet they attached, or I would've just taken it once a day. Just a little frustrated because it adds another little kink in my med routine - the pill splitting, the taking twice a day. That sounds like I'm whining over nothing, which I am, I'm just frustrated with all these dang meds. I'm glad to have it worked out in a sense, though.

Hi, Maybe this is just affecting my area, but NONE of the pharmacies here have my beta-blocker. A month or two ago, the pharmacist said that Metoprolol (the generic) had been voluntarily pulled from the shelves by the manufacturer. They said that there wasn't anything wrong with the medicine, but for some other reason they had recalled it. They gave me the much more expensive brand name stuff, Toprol, so that I had something. A few days ago, I went to get the prescription refilled, wondering if my generic would be back, and this time they had neither the generic OR the brand name. A came back home, wondering what I was going to do. My mom finally tracked down a pharmacist who said if I could get to her in the next half hour, she could give me just a few tablets. I have only 2 or 3 of those left. The pharamcist said she would call my physician and ask him if he could switch me to something else. Hmmm. worried. Is anybody else having this problem? Amber

When I first started my journey to discovering POTS, I woke up one morning to get ready to go to work, and I just felt awful. Of course, I pushed myself to go anyway, but didn't make it to work. I stopped at my moms, and later that day she took me to the doctor. I had a fever of 103 and my pulse was 185. They sent me to the hospital. At the hospital, they could find no sign of infection. Now, if I am too active, I get these periods of feeling feverish/hot flashy. They usually only last a couple hours. I take my temp., and it's usually only up a few tenths of a degree past normal, so no real fever, really. I've never had a fever like I did last February, but then again, I haven't been working since then, so my activity has been greatly reduced. Amber

A few years ago I had a horrible virus that I believe kicked off my POTS. The back pain was excrutiating - I've never been in that kind of pain before, I was desperate for a remedy, but Advil/Tylenol/Aleve - nothing touched it. I dragged myself back to work after it was over. Two months later, I had pneumonia. I have noticed an increase in how often I get sick. Last year, when I was still trying to work (a middle school teacher - THE #1 place for germs, in my opinion), I got cold after cold after cold. It was mis.er.able. Anyway, I do think that for some reason people with POTS get sick more often, and sicker when they do get sick, as in we feel it more, worse. But of course I'm not a doctor. Also, unfortunately, getting sick all the time and feeling, I think, more horrible than the average person with a cold, contributes to the world thinking we're just hypochondriacs and complainers and whiners. I hope you get/stay well. I also hope that you can work something out with your job. I do know this - the stress isn't worth the affect on your health. Amber

Thanks for weighing in guys!

I was just reading/reminded on the main dinet page that digestive problems are potentially part of dysautonomia. I've had pretty bad GERD - acid reflux - for years. Nexium didn't help, Prevacid didn't help, then even a combination of prescription (Aciphex) and OTC drugs (dr.'s suggestion) didn't help. I had to see a gastroenterologist and have an endoscopy. He prescribed Aciphex twice daily, and finally it was under control. A few months ago, I stopped the Aciphex, and it was back with a vengeance. I'm now taking the Aciphex just once, at night, and it's helping a bit, but I still burp up a storm. Okay, all of that unnecessarily detailed information was to lead up to this question: Is it possible my GERD, which I thought was just a completely separate, different issue, is actually part of my dysautonomia? Thanks, Amber

Back at the beginning just after I got my diagnosis and was really, really freaked out, I would have horrible anxiety and tachycardia in the morning just as you described. What made it worse is I would sit right up and check my heart rate, see that it was crazy, of course, and get all the more anxious, which would make the heart rate worse and.......you get the drift. I don't have the morning anxiety as much anymore, I think because I've gotten "used to" the diagnosis, and realize that it really stinks, but it's not something to get immediately anxious over the way I was. I'm not saying this is what's happening to you, I'm just sharing that when my anxiety wasn't so bad, my heart rate wasn't so bad. Until, of course, I sat or stood up...that still happens. Also, your thing about palpitations made me want to add one thing, ask a question: At any given time, not just when I'm in tachycardia, but also when my heart rate is "normal," I'll be just sitting around, resting my fingers on my temple, my hand on my neck, crossing my arms, tucking my hand under my leg, and I can feel my pulse pounding through my skin. Also, when I look at my belly or my...er...well, my breast, I can see it jumping with my pulse pounding. I've sat reading with a book propped on my belly, and I can see the book jumping with my pulse. Again, it does this even when my pulse is at a normal rate, like 60 - 90 bpm. What's that about??? Amber

Shimoda, I'm not trying to promote myself, but just in case you're ever feeling alone again and you can't talk to someone right away, go to my blog http://ambershockley.blogspot.com and read - particularly the posts under the categories "mental illness" and "misery diary." You'll see very quickly that there is at least one other person on the earth who has been there and understands exactly. I've been through it, still am going through it, and so far I've persevered. I've got a double dose - physical illness and mental illness. It *****, and I don't always handle it with the healthy attitude that may be coming across in this reply. I'm not saying that you have mental illness - anyone would get depressed from time to time with what all we have to deal with, but I'm just offering my ramblings on my blog to you as a way to know that there's someone out there who has definitly felt depressed too - you're not alone. Not by a long shot. There are others who are right beside you in this. There is a way to get through it, and I way out the other end of the tunnel. I've spent a huge number of days with my *** on the couch, just basting in my own misery. It can/does get better, even when you think all hope is lost. I've been so bad that I felt disconnected from God/religion, too. I still struggle with that. I'm still trying to figure it out. Anyhoot, Amber