Carly87

I knew there was a thread here about costochrondritis. I have recently been diagnosed with this, and am wondering WHAT exactly is the connection to POTS/Dyt? It seems like a lot of people here also have costo. Does it have something to do with the collagen structure in the chest? If so, that sounds like EDS too...Man this disorder is so confusing! So many possibilities to have checked out! I always take Advil or Motrin (any ibuprofen) when my chest hurts really bad. It works (most of the time.) But the pain always comes back.

I have taken Nature Made "Super B-Complex" in the past. I still have about half of the jar of vitamins left because I'm sooo bad with taking them every day. I end up taking my vitamins every other day for awhile, then slowly forgetting about them for weeks...Its bad I know. I'm going to have to try taking them everyday for awhile to see if they make a real difference! Like many of you, I have not had any problems after taking this supplement except the neon pee, haha.

Lots of great and helpful replies! THANK YOU!! Its funny that you mentioned V8 because I just recently gave this a try. It actually makes a difference and helps A LOT! As for taste, well let's just say I definitely wouldn't drink the stuff if it wasn't healthy/helpful for POTS. It helps me hold on to fluids like no other...Gatorade never really worked well for me because the high sugar content made me feel a bit jittery, and while I love my propels they really don't seem to make a huge difference. I can drink a glass of V8 followed up with a glass of water and maybe even a cup of tea and I won't have to pee right away...Seriously, that's a miracle in itself because I usually have to go to the bathroom within 15/20 minutes after drinking!

I have had all of the above! I have also been diagnosed with MVP though too, so that may have something to do with it. Either way, all these things are usually benign unless there is heart disease present. The irregular beats bother me sometimes. I'm so used to the tachycardia now, but when I get the 'skips' or other weird beats, I tend to get freaked out even though I shouldn't.

I can't answer any of your questions, but I have the burping thing too. It comes and goes for me, depending on how much I eat. If I eat a lot, then it will be bad. I'm guessing it has something to do with the vagus nerve...From what I understand, people who have POTS/Dysautonomia are quite sensitive to the vagus nerve, and when we put any pressure on it (such as through our stomachs via eating,) our bodies try to relieve that pressure. I always feel a little better after I burp, like a lot of pressure is lifted off my chest and my heart slows down a bit. That is just my hypothesis based on research I've done on my own.

Sorry, double-post.

Thanks for the replies, I'm glad I'm not alone in all this! I've never talked to anyone who has shared these weird symptoms, so thank you for sharing!! Carinara, I used to LOVE going on rollercoasters, and amusement park rides in general. I wouldn't even attempt it now. Sorry you had to go through that! This happens to me too, but not when I'm about to start talking. Usually when I'm staring off in to space I notice the walls or whatever moving up or down slightly. Hard to explain!! Oh and all these posts have me worried about flying! I'm most likely going to be taking a long flight sometime within the next year...Oh boy.

Yes this happens to me sometimes. My mom too, and she doesn't have POTS. Sometimes it happens to me randomly. I just put my hands up for awhile so they aren't so uncomfortable and it just eventually goes away. I can't really explain it.

Since I've started my whole journey with dysautonomia, I've had some weird neurological symptoms. I'm pretty sure they are just part of the dysautonomia package, but I wanted to see if anyone else here experiences some of these things too. When I'm particularly symptomatic and walking a lot...All of a sudden I'll stop walking and I look around and the ground and landscape around me seems to still be moving forward. I usually don't notice this too much unless I'm feeling really symptomatic. Is this a type of dizziness? I also cannot, for the life of me, ride an elevator (even when I'm feeling good!) without having crazy amounts of dizziness! Not like vertigo, but I feel like the ground is just bouncing up and down after I get off. This can last for a few hours too! Not fun. Something like this happened to me the other day, I went on a seesaw at the park and when I got off I felt like I was still on it, moving up and down. I am also prone to more migraines. Although I've had them my entire life, I feel like I'm MUCH more sensitive to triggers now...ie the sun, if my blood sugar dips, stress, tiny amounts of alcohol etc. I haven't checked any of these things out with a doctor specifically because they haven't really affected my life...Just weird things that happen when I'm not feeling that great! Can anyone else relate? I'm sure there are many more things I'm missing too...Feel free to add your own neuro symptoms that you get, I'm sure I've probably gotten em at some point too

Hey Villen, I'm sorry you are having such a rough time right now. Your post reminded me a lot of myself...I know how it is to have a "good week" followed up by a horrible week and how depressing that can be!! I've dealt with all the same symptoms you do, for 2 years now, and yes it gets tiresome after a while. You mentioned something about rapid heart rate when you roll over. Well, I used to be worried about that exact symptom because it happened to me no matter how much sleep I got. I did some research on it and found out that happens to EVERYBODY not just POTS people. We just notice it because we are so sensitive to our bodies, especially our hearts. My advice to you is to try to identify what triggered your bad week. When this happens to me I can usually identify a cause...It might be increased stress (usually the cause for me,) or I could have gotten off track with my eating habits, not drinking enough water, or over-doing it. I know summer just touched on this issue in her post about overdoing things when we feel normal...I tend to do this a lot. When I feel semi-normal, I just wanna go out and have fun and active and do all the things that people my age do. But 90% of the time I end up paying for it for a few days (atleast.) As for exercise, I highly recommend it. Make yourself a promise to do something every day! Easier said than done, I know. Walking is good and I find that even when I'm feeling bad I can still walk a bit because the blood pumps through the body easier. If you don't feel like you can go out for a walk try to do a few lunges or squats here and there for legs. The stronger your legs are, the better. One more thing, I can totally relate to you on the anxiety thing. This condition has caused me SO much anxiety...I used to have multiple panic attacks every day, agoraphobic, etc. let's just say I've been through **** and back with the anxiety. I'm much better now, but I still deal with some today. I can honestly say once the anxiety is treated it will make POTS much more livable because stress makes it so much worse. Have you ever talked to a dr. about the anxiety aspect? I don't take any meds on a daily basis for anxiety but my doctor prescribed xanax for me to take when I need to. I take one pill (.25mg) a few times a month at most, only when the anxiety is getting too hard to bear. It really helps me from going into that downward spiral that will set off my symptoms for awhile to come. Sorry for being longwinded, your post just reminded me of something I would write!! Hope this helps you.

I thought a thread where we could share our experiences exercising might be helpful. It doesn't matter how little or how much exercise, whether it be climbing a flight of stairs, walking or riding a bike around the block, maybe we can motivate each other! I'm just beginning a new workout plan and it is kicking my butt! I know that if I can get through it a little easier every day, that I will become stronger and my symptoms will lessen. My boyfriend is a personal trainer for sports performance and he has set me up with a plan. Right now this is what is included in my "workout:" -Walk/ride my bike around the park near my house if I feel good enough. Usually I feel best at night, so lately we've been taking my dog out for a lap or two around the block. -Different types of lunges and squats (how ever many I can handle) -lots of calf raises -Stuff called "movement prep" in the Personal training business...Basically the stuff they have athletes do to get ready to work out, = MY WORKOUT! haha -Finally, lots of leg stretches. My biggest problem with the exercise is being constantly aware of my heart pounding...I don't even have to do much to set it off. I wish I could just forget about it!

I looked up the calorie content of propel online and depending on which kind you get, they have 10-15 calories per serving, and 3-4g carbs. Not bad!

There's also G2 (the new gatorade with less calories and sugar.) I just tried Propel Vitamins the other day, which was really good, hardly any calories and no artificial sweeteners.

I have problems with hypoglycemia. I've been dealing with it for quite some time now, and have gotten it pretty much under control. It is of a reactive nature, so I've solved the problem by eating smaller meals/snacks throughout the day. For tests that require fasting, well, I've never had to do one for more than 6 hours...If I had to go ALL day/night like before a surgery, I don't know what I'd do! I DO know there are liquid protein drinks available, so maybe that would work. Another tip for those hypoglycemics out there: The best "on the go" food to bring with you (that works really well stabilizing blood sugar) is a packet of NUTS! Any kind. If I'm in an emergency, I usually will have a small cup of juice or something sugary that I can get my hands on, followed up by the nuts. Granola bars like the clif mojo bars are good in this case too. I always have something on me...My friends think I'm weird because I always randomly pull something out of my purse!

What do you all do when you are dehydrated? I'm trying to drink a lot but it just keeps going right through me..And I keep feeling worse? I did something I probably should not have done this weekend...I went camping with some friends and I had a few beers, not to mention ate horribly (burgers for every meal, candy, chips.) I was feeling fine beforehand so I figured maybe I'd be okay, since having a few drinks is either hit or miss with me. WRONG! I felt horrible and it acted like an extreme diuretic to me...I only had approximately 2.5 beers and I feel like I peed out 6 that night alone!! And it just kept going. I also got a migraine Sunday morning which made it hard to eat all throughout the day. Needless to say, I'm feeling horrible right now, have barely any food/water in my system, and I just feel like my body is totally out of wack. I'm feeling anxious and getting horrible adrenaline rushes, which hasn't happened in a while. Last night I even had to take a xanax to stop them before I went to sleep. I don't want to keep taking xanax on a daily basis (I take 1 or 2 .25mg pills per MONTH right now) but I can't go on feeling anxious like this either. I don't know where to begin. My stomach (thankfully) is feeling alright and I've been able to eat today, but the water is just going right through me. Would a bit of salt-loading help in this situation? I feel really dumb that I've gotten myself into such a situation

Don't worry, there is really nothing to be nervous about with the beta-blockers! Everyone who knows me in real life knows that I'm a serious med-phobic...I go crazy looking at side effects and all that before I take anything, which makes me really nervous! I take 25mg Metoprolol...12.5mg AM and 12.5mg PM. Very small dose, but it does the job. The good thing about the beta-blockers is that they have relatively few side effects. The tiredness is probably the biggest complaint most people have. It seems like many people get that symptom when they first start out. If you think about it, it's only natural because your body is adjusting to a new 'norm' I guess you could say. You may not have the increased fatigue, but let me point out that once you push past that initial 2 weeks or so, your body will adjust and you'll feel better than before. Maybe even start out on a really low dose and work your way up if your doc prescribed you more than minimal dosage. One thing to look out for is breathing difficulties...Many people who have asthma cannot tolerate BBs very well. I don't have asthma, but I am quite sensitive to meds and when the doctor put me on 25mg, after the first hour of taking the pill I would get these funny feelings of losing my breath for a second and hiccup-like breaths out of nowhere. Once I reduced my dosage these feelings went away and I felt that the BB worked great for me on a lower dose. Hope this helped

Happy Birthday, Ernie! Your story was such an inspiration. It's just what anyone needs to push through those hard times. I'm new and I've never heard your story before, so thank you very much for sharing! HAPPY BIRTHDAY!

Since coming to these boards, I've found that many people use different techniques to raise their blood pressure in order to keep symptoms under control. I was just wondering, if these techniques work so well for POTS patients, how come beta blockers (which tend to lower blood pressure) also work for some? I am one of those people who beta blockers work really well for. Granted, I am on a small dose, but I am still very sensitive to meds and it does decrease my blood pressure by a few points. My quality of life before beta blockers in comparison to after is such a difference! Would raising my BP through means of either meds or diet work better for me than the beta blockers do? Even if I were to find a great doctor to guide me through this process, I am tempted not to mess with a good thing. If anyone has any insight on these questions I would love to hear it!!

Hey Hannah! Welcome. I just joined the other day too, and everyone here has been so friendly and welcoming! I'm sorry you have had such a rough time. I know how it is having to compromise schooling...How dare your school call you a truant! That is the downside to this illness...It is so unknown by most people (and hey, most doctors too) that nobody understands... Have you told any of your teachers specifically about it? If not, I recommend it. Most teachers will be very accomodating, I'm sure. If you are looking for people to relate to, this is the place to be.

I hope you don't take offense to my comment, but I can't help but think that aspects of this diet don't seem very healthy. Processed foods, hot dogs, bologna, chips...I don't know about anyone else, but when I eat these heavy and unhealthy foods my symptoms actually seem to get worse despite the increased salt intake. I don't understand why people on this high sodium diet don't just drink sea salt water every so often instead of loading their bodies with food that slows the body down and doesn't help it perform to its highest capability. I recommend sea salt over regular table salt because sea salt is natural and has other notable health benefits. I'm considering sea salt as well.

Thank you everyone for the warm welcome! I appreciate the advice about taking it easy. I've definitely had times where I've pushed my limits a bit too far and wound up feeling worse for awhile. I'm learning more and more as time goes on how important this is, and what exactly my limits are. I got out of school in May and I have been "relaxing" ever since! Even though I was feeling alright, I opted not to pick up a second job working nights this summer (even though I need the money ) My other job starts in about a week and a half. Until then, more relaxation

This is interesting info for me. I was diagnosed with MVP way before my dysautonomia started coming along...But my doctors basically brushed off the MVP like tons of people have it and it is hardly ever problematic. Weird thing, last time I went to have an echo (Dec...so approx. 7 months ago) my MVP didn't show up at all. Cardiologist said nothing looks remarkable on my echo.

Hi! My name is Carly, I'm 21 and have been dealing with dysautonomia for close to 2 years now. I'm so glad I found this place! I've struggled with this condition on my own for way too long! Here is a little bit of background about me and my journey with dysautonomia: Well, I'll start by saying that I've never been 'officially' diagnosed with POTS, or dysautonomia for that matter. I slowly began getting symptoms when I was 19...Weird changes began happening in my body that I couldn't explain. I began getting winded much easier, I'd feel lightheaded and my heart rate would increase significantly whenever I would stand up. Each morning was horrible with the tachycardia...I couldn't get out of bed or even shower without getting heart rates of 150+. As a college student already in a stressful environment, this made my life a complete ****...I had recurring episodes of hypoglycemia (never happened before this) as well as an intolerance to alcohol. I was very fit a few months prior, so I had no idea what was going on. Needless to say, I developed an anxiety disorder...No doctor would believe me that my anxiety was NOT the cause of these symptoms, but rather these symptoms were the cause of my anxiety. Panic attacks made my life and condition so much worse that I eventually gave in and tried some SSRI's at my doctors discretion...Bad idea, I'll leave it at that. Basically at this stage I was a complete mess...Lost 20 lbs cause the anxiety was so bad I couldn't eat (I was already thin...Went from 135 to 115lbs which is very skinny for my height.) I was so desperate for SOMETHING to change but no one could give me answers. I hit an extreme low and I decided to take things into my own hands. The doctors didn't understand, so it was useless to sit around in fear all day every day. I searched the internet night and day about things I can do to help alleviate my symptoms and I was shocked when I came upon the description of POTS and Dysautonomia! I had almost every symptom listed. After researching, I felt a lot of my anxiety lift because I was assured I wasn't dying. I could eat again, I no longer got panic attacks. My heart symptoms were still prevalent, but I wasn't as scared of them. I basically just "lived" with my condition for the next 6 months or so, until one day I went to the ER with really bad chest pain. My heart rate was also very fast. I went through the ringer with all the tests and the only thing they found "off" was low potassium. I have been diagnosed with MVP since age 11, mild regurgitation, but my new echo showed there was NOTHING wrong with my heart, no more MVP! This made things A LOT harder with the docs. They wouldn't even hear me out about dysautonomia, etc. Its all just anxiety, anxiety, anxiety. One thing I am thankful for, although my doctor doesn't hear me out, he was concerned about my fast heart rates and near fainting episodes he decided to put me on beta blockers (25mg of Metoprolol/lopressor morning and night) which I agreed to because I knew from my research that POTS can be treated with them. The beta blockers DEFINITELY made a big difference in my quality of life, however when I took the 25mg at once I had breathing difficulties. So from then on until now I take half in the morning and half at night. While this has increased my quality of life a lot, there is still a lot of work to be done... I'm happy to say that I've come a LONG way since the days of being so afraid of this condition, but I still have a long way to go. I'm a much stronger person now, I've hit rock bottom so there was no where for me to go but up. I exercise, eat almost all organic diet, and try not to stress and it has helped tremendously. Despite feeling better, I still get major symptoms in the heat, PMS, and when I get stressed. I'm trying to think of other things I can do to help offset symptoms, but as a broke college student, I can't afford to go to a place like mayo that specializes in this area of dysautonomia. If I even asked for a referral from my doctor, he probably would tell me to quit worrying about it. My plan right now is to increase my exercise regimen when I can in order to build stronger muscles (which I hope will help make things easier!) I have a big big year ahead of me (Senior year at college!) in which I will be applying to law school and all that goes along with that. I know that will stress me out, so I NEED to be able to handle it! Phew, sorry I wrote a novel here, but I've never really been able to share these issues with anyone who would understand. I wish all of you the best of health and I look forward to chatting with everyone on here.