sjprice23

So, anyone who drives and feels comfortable enough to drive with pots? Please share your experience, tricks, cautions, stories from not driving to getting well enough to drive again, anything. My biggest goal is to hopefully get well enough to drive again...I live close to the middle of no where, but need to drive into the city to get places and public transportation and rides are very limited for me. And if I can get well enough to drive, I think I will be well enough to work at least part time, not sure though ~ just what I am hoping to happen, of course! Please share. Sarah

I'm not entirely sure I have exactly what you get because I have a real hard time describing my symptoms or knowing if I get those things until I actually have someone else explain it then pay attention the next time I get what is similar...if that's makes any sense. But, for now, I do know that I get at least some of those symptoms when/after I eat. No matter how much or how little I eat. I'm going to assume you get fatigued as well after all this. That's what I notice the most of all my symptoms after eating. I get shortness of breath too, or like I can't take a deep breath. As I said, though, I'll have to pay attention the next time I eat to see if I get any of the other things you've mentioned. I do know, however, which I'm sure others will agree, having pots and eating, blood goes to the abdomen during the digestion process and can cause many of these symptoms. Eating is probably the worst "regular" trigger I have for pots episodes, so my doctor tries to treat me with that in mind, which is why she put me of midodrine: to help stop the pooling of blood in the abdominal area

Okay, just wanted to update everyone: I saw my diagnosing Doc today, and even though it is a tad frustrating that she doesn't spend much time with me when I visit, so even if I write down questions, there still isn't enough time to get them all out, but she seems to just know what needs to be done next, tired next, etc. And although she seems to know these kinds of conditions very, very well, I am attributing all of you for helping me be able to describe how I am feeling all the time, so the Doc is able to only ask a few questions of me and my symptoms to be able to figure out that something isn't working and something new needs to be tried. She is starting me on midodrine and told me to stop taking the florinef. I couldn't tell myself if the florinef was working or not, but my blood pressure was way up, so she didn't feel comfortable with me taking the florinef anymore. So, we'll see how I am doing after a few weeks on the midodrine. Thanks everyone for having so much to say about symptoms, pain, etc. that helped me be able to describe how I have been feeling. Sarah

Hang in there Wibbleway! I completely understand how depressing the bad days can be. One thing that helps is to find some way to lift your spirits up, then eventually, your physical self will follow, I promise. Try having your husband write a list of your good qualities for you to see ~ this helped me out in the past when I had my boyfriend do this and it lifts me up everytime I read it because that's why he fell in love with me and I still have those qualities. It just makes it that much easier to get through those bad days. Or just make a list of very small goals you want to do when you're feeling a bit better of things that you're interested in and are attainable. Hope you feel better soon! Sarah

Sorry Michelle!! Won't happen again, just got carried away! Sarah

I do, it usually starts in the lower back for me, but then sooner or later my entire back is hurting at some point in time. The only thing that helps it on me is to put a heating pad on it for awhile, it at least relaxes it for a little bit. Or if you have someone to give you a light massage for awhile. That pain, along with so much more is very aggravating isn't it? I could deal with it if it was just one part of my body that was hurting most of the time, but to have so much of it hurt most of the time is what makes this whole thing so horrible sometimes. You move one way and this hurts, you sit another way, then that hurts, you stand up and this AND that hurts...Bah! It just all in all stinks sometimes! Sarah

And if he doesn't ever admit that, then so long, good ridence...just be glad he's gone and take your time, because it will take time to heal. Sarah

masumeh- I just posted something earlier tonight on another post, I can't remember which one, about a doc thinking I had hyperventilation syndrome as well (before they found the pots) and to carry a paper bag around with me to use. The way he diagnosed me with that is he had me lie down on the exam table and breathe really heavy, really fast, and I got dizzy, but wouldn't anyone get dizzy doing that? I had my boyfriend try it, he got dizzy, I told my mom about it, she did it, she got dizzy, but neither of them have anything even remotely close to what I experience ~ both of them are fairly healthy when it comes to the cardiovascular system, etc. Weird doctor. The only thing the paper bag has ever helped me with are hiccups! That's about it. As I told my doctors, many times that don't know pots, I know how to breath, its that my body, the ANS, sometimes won't let me! Some people, I'm sure it does help, but for me, its the pots episodes that are bringing on anxiety, so its not true anxiety, but with medication, my primary doc now, is suggesting I take anxiety meds to more or less help with the more manic depression I have been getting since getting sick (regular anit-depressents used to work for me, but my depression seems to be morphing more towards the manic side~great ) Which is taking a toll on my pots symptoms of course!! Urgh!

After reading these posts in this topic, it reminded me what two different docs told me was wrong with me before we found the POTS (which I found a doc in my own research and had to make an appointment to see after doing a lot of research on my symptoms and asking around). The first doc told me it was anxiety just because I broke down and started crying a little in his office because I was so frustrated with the lack of treatment and care everyone was giving me when I would see any doc about this and because I was fidgeting (which was me trying to stop from passing out because I had been sitting so long waiting for the doc to come in!!!). So, I stopped seeing him, found a new doc... Then this next doc told me I had Hyperventilation syndrome (or something of the sorts) ~ I just don't know how to breathe right! How does someone that has been fine for 23 years, breathing "correctly," not getting dizzy go to breathing "incorrectly?" "Bring a paper bag with you everywhere you go," is what he said. What?!? To test this, he had me lie down on the exam table and make myself hyperventilate to see if I would get dizzy! Wouldn't anyone?!? I would think so! So, yep, I had hyperventilation syndrome! I don't think so. He also told me that he KNEW I would pass out when they give me the Tilt Table Test and that if you take 20 people off the street and give them this test, at least half of them would pass out, even though they don't have any disorder or symptoms. Guess what? I didn't pass out! My heart rate just sky-rocketed way high within seconds of the upright position. And even more so after they pumped the adreniline drug in me. Doctors, I tell ya! Sarah.

Okay, first of all, LOL! My boyfriend and I have joked about this many times as a way to get money ~ so now, I've been trying to convince him to try this since my health is falling, but he keeps saying that our corner isn't busy enough to get enough money! And secondly, I have almost to the tee, the exact same problem, but I do not know what it is either and all the docs are just beginning to look into it now, so I will let you know if I find anything out, if you would be so kind to do the same. Or anyone else on here as well! I don't know if this is true for you or not as well, but the pain that I get in the front of my head, above my eyes and on up, that throbs like my heart beat feels like my head is being crushed by some sort of steel contraption; its that painful for me! Then, the face/neck/arm pain...the worst of it for me, where I first notice it is in the ears and teeth, then it travels to my shoulders/neck...And NO! No pain medicine I've tried so far helps it. I just have to suffer through it. And I've tried completely hydrating myself and upping the salt intake to make it stop like its something to do with POTS or being dehydrated, but nothing has even come close to getting rid of it or deafening it at least. The best way I can describe the worst of it is just as I said, like my head is in some sort of steel contraption that you would see in a horror movie or something, that is just crushing your head causing your veins to beat, beat, beat like when you constrict circulation in your hand by wrapping your hand around your wrist tightly and the pulse feels like its going to jump out of your wrist...but with crazy pain! So, anyone that gets this...please help willows and I out! It's not fun AT ALL!!!

Yes! And to further strengthen yourself, I've found that the best way to "get" to him that makes you stronger is to not talk to him (or her) unless you absolutely have to. Make yourself act like you are not bothered by the cheating bastard (sorry to be so harsh) and what he did to you, and you'll believe it sooner or later (Fake it until you Make it!). And I guarantee that will bother him more than anything! It's classic reverse psychology. The louder they yell, the quieter you should talk ~ it will bother the crap out of him! And you'll have your harmless revenge to feel better about the situation as well as focusing on yourself, your health, and your future. No man is perfect, but the question is, is he perfect for you? (I know we've all heard that before, but it rings so true.) And he definately was not perfect for you, that is for sure! I had a boyfriend where I ended it with very harsh words, and as soon as I stopped acting like I cared was when he came crawling back to me, wanting me more than when he first wanted me and by that time, it was way too late: he couldn't have me and that visibly bothered him more than anything. Even though revenge is not the answer, this kind of revenge is harmless enough and I think it is really healthy for both parties because it might teach him a lesson that he needs to learn in order to not be as much of a jerk and you will feel more confident about yourself.

Unfortunately, I do not have much more to add to this because everyone has said it all already, but to hopefully make you laugh a little, I would love to give you some of my hair!!! My hair is sooo thick, I could use a little natural thinning! Sorry if that made you upset in any way, but basically, I understand, because even though my hair is so thick, if I were to start losing it, I'd feel the same way you do. I know beauty is on the inside and all, but I'm very self-concious about the way I look...I went through too many years when I was younger thinking I was ugly when I wasn't (depression), so much that I would constantly fake sick to stay home from school on a bad hair/face day, and now that I am older, I am a lot more confident about my looks, but going through what you are going through would make me slide into depression just the same. But hang in there, you will get it back if it is stress related, and I'm sure you look beautiful even with less hair!!

I understand completely!!!! I am only 25 (24 when the symptoms started) and I was already older/more mature for my age, now even more so since all this started. And to your comment about having kids/husband...the husband/boyfriend thing is much easier than the kid thing, I'll tell you that! I know there are many here that have their own kids and although manage somehow, do have trouble keeping up with it. I have a boyfriend whom has 3 young boys!!! It's not easy to take care of them when they are over (only part-time). They are boys, they are young, and they are VERY full of energy. Over the recent months I have explained to them, as much to their understanding, that I am "sick" so at most times when my bf is not there to step in, they will have some degree of understanding to settle down or relax a little. I have become a second mom to them so they understand completely that I have authority over them and that they have to listen or they will be punished, but it is very, very difficult physically to take care of them. Most of the time the only thing that keeps me going is that they are young children and they need to be cared for, not only cared for, but loved (becasue they're real mother is somewhat of "trailer trash" ~ I hate saying that, but its true ~ so she doesn't care for them the way they should be cared for). So, I trudge along each day they're here and I think I'm on auto-pilot when it comes to physically doing things and even mentally/emotionally caring for them (which is the most frustrating for me), but it gets done, and they don't notice the difference. One good thing that has come out of it is that the oldest one of the three has learned to be more of a good example to the younger two than he probably would have because I have made him understand more about my condition than the younger ones and have talked with him face to face about being responsible for his actions because they directly link to those of his younger brothers. And because of talking with him, I have noticed a huge difference in his behavior from helping the younger ones be more quiet more often to just plain over all behaving like sweet little boys instead of tearing through the house like its a jungle gym (which is what their mother lets them do). Why did I go into so much detail about this part of life? Because in my opinion, the kids part of life is the hardest thing to do out of all the things you've listed Cardiactec since it is a 24 hr/day job. Children never stop needing in some way or other. And all the rest is in my opinion, much easier, although, obviously, not "easy" in laments terms! Because its still a struggle everyday for me to keep the relationship with my boyfriend a good one (despite what he says that he loves me more than anything and is here for me no matter what my health ), and I am still not working, but am trying on that last one to figure out a way to bring home money! So, keep your head up, and use that bench in the store!!!! I'm jelous, my stores don't have benches! Use it for me at least if not for yourself! ~Sarah

I just wanted to say that, exactly. That my heart goes out to so many of you. So many of you, more than I've read on here, and I've read a lot so far (fairly new here), have gone through so much in regards to health issues, let alone life issues as well I'm sure! Of course I am still at a young age, and I'm not sure where everyone is age-wise, but I can only imagine going through what so many of you have gone through. From Dizzy Dame, to Quiet Spike, to Jess, to Willows, and that's just to name a very small few! I love so much that I have this arena to turn to for my health concerns, to listen, to learn, and to just simply lend an ear because even though I've been fairly vocal since I've signed on, I read a lot more than I let on to and speak on. You are all so wonderful to be going through what you go through, then be here to lend a helping hand to others that have questions on numerous concerns and issues. So, I just wanted to say thank you for me and for many others I am sure, and that my heart goes out to all of you for sharing your stories, new and old! Sarah

Thanks Emily (and Spike!) I did a search a few days back on the forum here, and yes! I did find a lot of topics that helped me through my thinking, thank you.

{I can't resist continuing on with some more from my side of things as well as all of you whom have continued throughout this post.} For me, its not the embarassment at all (okay, well maybe .1% embarassment), but mine is being scared! Scared out of my mind sometimes. Everytime I've fainted, I have hurt myself in some way or other, sometimes bad, sometimes not so bad. Also, as I've said before, driving is the main thing that I will not do yet. I got into a really, really bad car accident before I got POTS symptoms, so I very much fear not having control of my car and hurting or killing myself or someone else. And my ex-husband had a seizure disorder, with grand-mal seizures, where I had to call 911 almost everytime he had one because he had fallen and hit his head, leg, arm, something so bad that he could barely move (and he was about 150 lbs heavier than me, so there was no way I was going to carry him to the hospital). So, to sum it all up, honestly, I really couldn't care what anyone thinks, I just don't go anywhere by myself because it brings me some comfort to have someone there with me, so they can help to calm me down if the adreniline is too high, or to be there to help me if I feel like I am going to go down (along with medication to chemically keep the adreniline factor low). I'm just afraid of getting hurt so I limit myself to what I do, which is what it seems that most people try to do. And on an ending note, to give you an idea of who I am, how I try my hardest to not let anything get me down, I worked in a factory with heavy, moving machinery that would kill you if you fainted anywhere in close range to it, for at least 5 months after first getting symptoms because no one could figure out what was wrong with me, most people, although believing that I was dizzy, did not believe the severity of how I felt. So, I continued to work because I needed the money and nobody could support me. Then, one day, I just decided that I didn't want to risk my life anymore, I stopped driving, I went on medical leave from work (which is still where I'm at today), and it forced my family to realize how severe my condition is, even though I wasn't diagnosed with anything until a month ago. I just know that we all deal with our situations differently probably based on what sort of support we have, along with our own problems and body systems. Patricia, I think it's absolutely great that you can feel the way you do about it, and I'm sure a lot of that has to do with having a close family member (your daughter) that has a lot of the same health problems as you...it sounds like it makes it a lot easier to deal with.

DSM3KIDZ ~ I agree with Jan on all this. My guess is that it is POTS and anxiety. Mostly the POTS, but as she said, anxiety can easily bring on the POTS symptoms and make them worse. I've been having the same problems...I don't drive currently, except to move my car from the driveway to the street and vice versa. All the idiots out on the road when I'm driving brings on an attack like you wouldn't believe! Even being the passanger in the car with a driver I trust brings on attacks everytime I go somewhere. I have talked to my therapist about this and she has tried a certain type of hypnosis on me that I was supposed to also practice on my own and eventually I was supposed to be A LOT more calm. But that didn't work for me and the therapist strongly thinks its just because it is more than just anxiety, it's also the POTS! If we didn't have the POTS symptoms/problems, the anxiety was supposed to be very short and sweet, then eventually go away because I have never had any type of anxiety problem before I became POTSy. But even with trying all that she told me, I was getting the dizziness, heart racing and feeling all around potsy after the attacks just the same. So, its mainly the POTS, but as Jan said, the anti-anxiety medication wouldn't be a bad idea to try. I know it helps me and I have to be really careful not to get addicted because I have very addictive behavior (that is actually the main reason I am seeing the therapist ~ I have to ~ although, I don't mind...it helps with dealing with POTS as well). So, hang in there. (I know that's not much of a pick me up, but its the best I can do right now. Sarah.

Yes, I know it is possible. With my mom being a nurse, this is what she told me after we left the ER. She said this is probably what will happen since they didn't find anything with the doppler. They just dissolve on their own, more often when they are in the lower part of the leg, but they can dissolve on their own anywhere in the body.

Thanks for more info Masumeh. I'm beginning to think that it might not be a blod clot (bc of course I do not want it to be). It's just been my experience with my mother being a nurse my whole life, she would never freak out or worry about any health concern unless it was something more serious. So, to see her freak out and want to take me to the ER was a little disconcering at the time. And also, I have followed fairly closely to my cousin's health issues throughout my life (with things in the genes anyway), so to have her have a possible genetic blood-clotting disorder, and me not being able to do too much of moving around these days, kind of had me scared. The pain is still there, but I don't have any swelling, so I'm not too worried about it right now. So, again thanks.

Thanks Spike!

If so, what is your story regarding this? Any info would be helpful. Thanks!

I know I'm not crazy, because I see most people's signatures list many medications that they have been on and aren't anymore and I'm sure most of you have gone through many trial and errors on getting the right medication and dosages. I'm just a little confused because I have only been diagnosed since last month and have only tried two medications (no dose changes on either), and it seems like my doctor and the doctor's assistant think that I should be responding to something. I'm no where near better yet, I definately cannot drive or work yet, but they seem to think somehow that I should be able to. I just don't get it because my doc is one of the few specialists on POTS in the area. What's up with that? Has anyone else here gone through any similar situations?

Ya, I figured you were joking about throwing in the towel on your pickle/olive eating contest! LOL! I love them too!!! And most people I know or have ever lived with don't as much or at all, so even before being put on a high salt diet, I would eat a whole jar of olives in one sitting every few days and people just think I'm weird! But now, the real joke is I'm justified in eating them! I hope you do find something out next week...as we all know, the waiting game is absolutely horrible at times. I feel like I'm in the army; when it comes to having illnesses all you do is hurry up and wait!!! If you know what I mean?

I still have the pain and tenderness, but I was told to keep an eye on it for the next week for worsening pain, for it to move up my leg, etc. etc. Thanks for asking!

My mother (whom was a nurse for 25 years) just took me to the emergency room because what I described to her of the wierd pain in my leg and the little bit of discoloration sounded like a blood clot. I do not have that much of a high risk for blood-clotting (maybe blood pooling in my legs could cause one, and my cousin has APS, a blood-clotting disorder that they know could be a genetic disorder, but no doc will test me for it). They did an ultrasound on my leg, but could not find anything today. I was told to keep an eye on it, but I was wondering if anyone here has had problems with blood-clots, or if they get pains in their legs in segregated areas that is more centered around veins and not muscle or joint/bone pain?