cmreber

OH no guys...sorry to hear that! No worries though...whenever is fine with me Hope you both feel better!!!

Thanks guys! At least I know I'm not the only one lejones1, it's funny you mention the nauseated and thirsty combo, because that happens to me all the time first thing in the morning. I'll be so thirsty and dehydrated but then I take a drink of water and feel like throwing up. It usually passes within 30 minutes to an hour though, fortunately. sue1234, I feel the same way sometimes. Whenever something new pops up it's almost like, should I even bother mentioning it? lol So much seems to go weird with our bodies all the time! I'll definitely let you know if I ever figure out what causes it!

I've been having some stomach issues since the end of Feb and my GP is sending me to a GI specialist for some tests, etc. But starting last night I was drinking some water (same bottled water brand I'd had all day) and it tasted weirdly sweet to me. So much so I asked my husband to try it. He said it tasted fine. Now, all of today, same thing. It almost tastes like I had some sort of artificial sweetener after I have any water. Nothing else seems to taste weird...just water??? I really don't know if this is a new symptom or what. Anyone experience this? Hope you all have a good night!

I found you on there!

Just have to say this gave me a much needed laugh today! I also think having POTS can feel a lot like the traffic scene in the beginning of the movie. You think your actually getting ahead, just to realize you have now, in fact, set yourself back a few car lengths haha!

Hahaha, LOVED "Dog Dean Afternoon"! I have a giant list of favorite episodes (Bad Day at Black Rock, Tall Tales, Changing Channels, Caged Heat, My Heart Will Go On, to name just a few...), but I have always loved how this show just says "4th wall...what 4th wall?" My all-time favorite is The French Mistake. I mean, you have Jared and Jensen, playing Sam and Dean, trying to play Jared and Jensen, playing Sam and Dean...hahaha!!! There are about a million great quotes from that one! http://media-cache-ec0.pinimg.com/originals/fb/94/c0/fb94c0e14c7ba412e4015ed200419be7.jpg Did you see Tuesday's episode? (Meta Fiction) Definitely one of my favorites of season 9 so far!

LOL Becia! If you ever feel like a game of Words, I think my username is cmreber & Mike, I'll find you on there

I play Words With Friends , but that's about it

I don't have the chest/heart pain but often find myself out of breath when on the phone, especially (for whatever reason) when leaving a voicemail message. It's as if I don't breathe right or enough between sentences? Not sure why or how to stop it from happening!

Hahaha! A closet SPN fan! Of course, this is the beauty of Netflix...I seriously watched all 8 seasons in about 2 months so I could be caught up for season 9 when it started. (Yes, I realize I probably have a slight obsession at this point!) Have you watched any of the new season? Yes, gotta love Baby! Remember that time that Sam WAS the Impala? (Changing Channels) LOL! http://favim.com/image/75587/

lemonsin2lemondade, did you ever find out what caused it for you?

xRobin, I was never a person to get migraines either, before my first POTS onset. I'd never really heard of a complex migraine aura, but just looked it up after reading your response. It is interesting that both times I had this happen I ended up with a migraine afterwards. Of course, there is the low blood sugar factor, and the dehydration factor, and a whole lot of other reasons it could have happened. All things to discuss with the doctor I suppose! It's so confusing sometimes, because so much can be affected by POTS!!! LOL

Sounds lovely out! It's the same way where I am. It's always a bit of a bummer when it's so beautiful out and you don't feel well enough to get out and enjoy it. I don't know if you have any sort of porch or deck, but maybe you could set up a chair, hammock, etc. outside so you can get some of the benefit of the great weather. I know that sometimes abrupt weather changes make me feel weird/off too. Haven't had the red cheek thing though. Yum, have never had Italian ice, but it sounds good!

Thanks for the responses everyone! Freaked, I agree, the ER never really seems to know what to say other than anxiety, panic attack, etc. And I think you're right that it goes beyond just that when it comes to POTS. I looked up info on Cerebral Hypoprofusion and it definitely makes a lot of sense, especially since I have Hyper POTS and tend to have issues with adrenaline surges, etc. Bigskyfam, it's interesting because it seems I've actually heard from a lot of different people who have had issues in the car. I wonder if part of it is blood pooling in the legs, especially when sitting in there for a long time. I also have found that I can't sing along to the radio much anymore without getting short of breath. lejones1, I think you're right about them being more like "POTS attacks". I've seen friends who have experienced regular panic attacks and it doesn't look anything like what this is when it happens. They usually just need a few minutes to calm themselves down and they're good to go. If only it were that simple for us! I did notice it helps when I lay down (probably helps get some blood back to the brain! And I usually at least have my salt tablets with me and some water. Unfortunately that day I didn't happen to have anything with me, which was probably a big part of my problem! artluvr09, when I very first got sick 4 years ago with this, I started having migraines every day, or every other day, and it was awful! Once I finally got a diagnosis, got on a beta blocker, and started getting my symptoms under control, I stopped having migraines, except for the occasional one. The interesting thing is that ever since Friday when this happened, I have had either just a regular headache or full blown migraine just about every single day. I think my body is just angry and out of whack right now. My migraines don't seem to affect my speech or anything like yours do though. blue, first of all, so sorry to hear about your father's passing. I can very much relate. The August before last, I lost my grandmother, who raised me and my brother and was the only parent I had ever known. Same thing, she was elderly and it wasn't necessarily a surprise to us when it happened, but even still, it hit me hard, and for months afterwards I found myself having more breathing issues and panic attacks then ever before or since. I also try to tell myself that I'll be fine when this happens and that I just have to get through it and it won't kill me or anything. I do get so very tired of it though and sometimes wonder if this is just going to be something we have to live with forever. BSmith85, it's good to hear you had a remission, and sorry to hear you had a flare up. They are never fun, and in some ways are so disheartening because it's like, you were so close to freedom, only to get sucked back in! Hopefully your flare up will be brief and you can go back to feeling good again! sue1234, thanks so much for the info and recommendation. This is not something that I had thought about, but definitely worth checking into. My grandmother actually had issues with hypoglycemia her whole life (she would talk about her mother having to bring her some toast and juice before she was able to get out of bed). I think I'm going to definitely bring it up to my doctor when I talk with him and also get a glucose meter just because...it can't hurt! Chaos, I do have a neurologist...a few other things happened this past weekend that needed my attention (husband ended up getting burned really badly over the weekend and ended up in the hospital and just got home Monday evening)...so I haven't yet had a chance to call my doctor and discuss any of what happened Friday. When I do I will bring up some of the information I've gotten on here and see what he thinks. And, yes, sometimes I'm not even really sure why I bother going to the ER at all.... LOL

So sorry to hear that. Don't have much to add that's helpful, but just wanted to say I hope things get better!

Thanks everyone! I always love getting all of your input because there is so much we can all learn from each other's experiences. Also, it's always nice to not feel alone in these things. Bigskyfam, I feel for you! I don't have children and can't imagine how much energy that must take (that you don't have)! looneymom, thanks for the info, I might just look into all of that. I have always had trouble falling asleep (always have been the last one still awake if there's a room full of people). gjensen, sorry to hear that! Not only does that make the day (and sometimes the following days) difficult, but it can be scary too. Hope you keep feeling better. sue1234, interesting that they were in the high range. But, who knows, our bodies are so complex anything can throw them out of whack. I would be interested to see if mine were, normal, high or low. LastUnicornLady, I totally understand, especially with a schedule change. One of the hardest parts about traveling for me is the time changes that go along with it! I never have tried melatonin, and may be something else for me to look int. Jackie M, it's interesting you bring up dehydration. I know that I don't drink nearly enough before bed or during the night and that at least part of it is probably because I'm dehydrated by morning! lifeandlifeonly, I tend to be the same as far as mornings=worse, nightime=better, but am opposite in the fact that I feel awful when I first wake up and for the first hour or so, and then I start to do okay, and then get even better on towards evening (with exception to a 3:00 crash where I can barely keep my eyes open! lol) imapumpkin, that makes a lot of sense. My blood pressure has a tendancy to go from low, to high, to low, to normal, to high, etc. throughout the day...but without a doubt it is at its lowest in the morning. targs66, thanks for the article! I will definitely have to look it over! It is so true. My family, including me, have all always been night people, and I never was a morning person. I never enjoyed getting up early, though I never really had a problem with it, physically, until POTS. The "always feeling jetlagged" is a very good description. That's exactly it. (And sometimes I have nausea and some other things that make me feel like I'm hung over, even though I didn't drink anything!) Now, I really would like to test my levels and see if the same is true for me. Thanks again everyone for your very helpful responses!!!

Hey everyone! I have been doing pretty well lately, so I started to think maybe I was on my way to being done with all of this. (I know, wishful thinking...lol!) So I was driving home yesterday from getting my car serviced (fairly lengthy drive, about an hour and half), and suddenly my hands and legs were completely numb. And then my right eye wouldn't stop twitching and my vision went blurry and then it felt like I couldn't breathe. I pulled over, and then my hands balled up and I couldn't move them or open them. Some of this stuff has happened before, so I was trying not to freak out too badly. I decided to call my husband to come get me, but when I went to operate the voice activated system in the car, I found that I couldn't talk, and what I was able to get out was too slurred for the navigation system to understand. At that point, I really did get scared because I was alone and this had never happened to me before. I got out and flagged a lady down, and she called 911 and my husband for me, worried I was having a stroke or something. By the time the ambulance got there, I was a little better and could finally talk, just really slowly and it was hard to get the words out. My husband got there and took me to the ER himself. By the time I got there, I was doing a lot better. They gave me fluids and said I was dehydrated and my blood sugar was low, but that mostly these were all symptoms of hyperventilating. I do know that since my sudden onset of POTS a few years ago I am much more proned to minor panic attacks (never had any pre-POTS), but I've never anything like this before. Especially since, aside from being slightly dehyrdated and not having eaten much, there really wasn't anything in particular to set it off. (Which, usually, there is something that has me stressed out or worried, like flying). I just had another episode while riding in someone else's car today (super embarrassing for me and frightening for them) and I'm starting to wonder if this is suddenly getting worse for some reason. At the ER they told me how to try to regulate my breathing when this happens, and that it can take from 20 to 40 minutes to completely subside, but it was super hard for me to get it under control today and it lasted on and off for about an hour (another long car ride). Also, again it got to the point where I was having a hard time thinking or talking. Sorry for the long post! But I was wondering if this happens to any of you, and if so, is there anything besides trying to stop the hyperventilation that works for you. Also, do you know what sets this off for you? It's weird that it seems to have come on so out of the blue...I'm wondering if this is just something new I'm going to have to live with. I hope not, because it was one of the most embarrasing experiences I've had since my diagnosis! Not to mention scary while it's happening. It's like, I know that I'll be okay, but it still feels AWFUL! Once again, sorry for this being so long! Boy, isn't POTS just so much fun? ;P Hope everyone is having a good weekend and feeling as good as possible! ~Christine

Hello everyone! I haven't been on here too much lately and I'm happy to say that's because I've been feeling a lot better lately. The one thing that I still experience that doesn't seem to change, though, is feeling so lousy in the mornings. I've tried more sleep, less sleep, everything I can think of, and it still is so difficult for me in the morning time. On the flip side, late at night, especially from around 10 to 2am, I feel the best. I know the morning thing is common among us POTsies, but I've never really understood why that might be, other than having been lying down for so long and suddenly changing position. But, when I sleep in till 10/11:00, I feel so much better than if I'm trying to get up at 8. I was thinking about things that change in the body from morning to night, and I started wondering about Cortisol levels. I know they are at their highest from around 6am-8am, and lowest at around midnight, which makes me wonder if that has anything to do with it. Has anyone been tested, or looked into how these levels might affect how they feel in the morning vs. nighttime? Hope you all have a good day! ~Christine

Due to POTS I'm not as active as I used to be, and therefore find myself watching a lot more TV these days. I discovered "Supernatural" a few months back and am now completely hooked. Anyone else love this show as much as I do? (Also, if you haven't seen it and need something to watch, I definitely recommend it! LOL)

I'm a 5

Kms1990, I feel the same way! I spent so much of the beginning of this journey mourning the loss of the person I used to be and focusing on the things that I could no longer do, it felt like things were never going to be okay. But once I started focusing on what was possible and figuring out ways to work towards making other things become possible, it changed everything. And I honestly believe that my shift in perspective and attitude really helped the healing process. Things have been so much better for me just in the last 6 months, it is astounding. And though there may be things that will never be the same again, and there might still be limitations (and there WILL be bad days, of course), my acceptance of those things has made me overall a much happier person, which makes me feel a lot more like that person I was spending all of my time mourning the loss of.

IceLizard, a friend of mine who has Lymes shared this with me, and I thought it was beautiful: "In illness, you're suddenly not yourself anymore. The question is: Are you going to cling in panic to some idealized self that no longer exists? Or are you going to cross the threshold and acknowledge that you're on a journey, though you don't know to where? You haven't chosen it, but now you're different in some way. This is one reason physical illness shows up as a turning point in so many spiritual biographies or as the catalyst of shamanic initiation. It's a profound shock to the system. It dislodges you. You look in the mirror, and one of the unfortunate ill stares back. But in a way, you could say that disease also abrades away, painfully, all of these superficial ways in which we judge our worthiness, even life's worthiness. Our worthiness, as in: "Am I strong, beautiful, competent, undamaged goods?" Or life's worthiness, as in: "Life is good only when it makes me happy, or aggrandizes me, or favors my enterprise." But who's bigger, you or life? There's a Rilke poem Robert Bly has translated: "This is how he grows - by being defeated, decisively, by ever greater beings." by Marc Ian Barasch

I don't know about others on here, but I do have bad reactions to mosquito bites as well, though it has been that way my whole life. I think for me it is just an allergic reaction. Very irritating though, for sure--especially since they really seem to like me! lol Bug spray is definitely my friend in the summer!

MightyMouse, I'm just like you with the coffee in the morning (which my doc also suggested). They think I'm hyperPOTS and during the day my BP tends to go all over the place, including up when on the TTT, but in the mornings, it is super low and I feel like I have no blood in my body when I get up. For some reason, having a cup of coffee really helps with that. But, also like you, if I have too much it can be equally as bad.

Very powerful, thank you for sharing!