leydengs

I've had POTS since I was a teenager but it got MUCH worse after a flu shot and having my daughter 3 years ago but I'm with futurehope, I had to stop meds because the side affects to those were much worse than dealing with POTS. I'm not suggesting that you stop your meds but maybe they can be changed a bit (dosage) to help.

It's great to meet you!! My family is starting to come around and be more supportive but that's only because I've pushed them to learn about this disorder. I'm sorry to hear you had to go so long without a dx, I know how frustrating that is. Thanks, I hope so too!!

Welcome Christine, it's great to meet you but so sorry to hear what you've gone through!!

When I was in the hospital with my worst flare up I was so low I had to take 10 (yes 10) Vitamin D pills a day, now that my vitamin D is back up I'm just supposed to take 2 a day but that still hasn't cured anything.

Thanks lfreem02, I'll try some of those options. I appreciate it!

I'm sure all that stress isn't helping your symptoms, yikes! Can you get another doctor? I know doctors that specialize in POTS are few and far between but could that be an option. I've taken those meds and the side affects to those meds were much worse than just dealing with POTS.

Hi sarahm, I work out daily and I've done long distance stuff (marathon/half marathons) and I've done a figure competition and I'm with you I can be sitting or standing and my heart rate can go nuts during a workout. Leg day is the worst, I can't do a lot of lunges or jumping things because my heart rate goes through the roof and I get really dizzy. Sometimes during cardio, if I'm doing stairs for example I'll be doing pretty quick for about a minute and my heart rate it ok but when I slow down for a minute my heart rate will go even higher so I have to just adjust my workouts to what I can do. Sometimes I take more breaks, sometimes I take longer breaks. I also had the same problem where I can't do medications because they make my other symptoms so much worse. Good luck!!

I get that "pressure" feeling in my head, usually after standing and after a getting really dizzy. It gets to be really painful sometimes. When I did the Valsalva Maneuver test my bp went really high which is what caused that pressure feeling for me (my bp normally runs REALLY low) and each time I did the test it went higher and that pressure and pain got worse. Good luck!! Like lillybits said, it is a rollercoaster ride because it's kind of like trial and error until you find what works best for you but you can manage it. The best thing for me is when I'm tired I have to rest. Keep your head up, keep using the support and it will become easier and more manageable. You're going to have good days and bad days so just take it 1 day at a time

I have autoimmune thyroiditis and eczema as well and I've always had extreme constipation. On average I go (warning TMI) once every 2-3 weeks! Usually I only go during my period. I was diagnosed with IBS but apparently I have the form of IBS that causes constipation rather than running to the bathroom all the time. I have switched to Gluten Free which has really helped with stomach pains, bloating, etc. I did a colonoscopy and even doing 2 jugs of that Go-Litely stuff didn't work so they had to do enemas but everything was fine they said I just have IBS. If you are really suffering you can try suppositories, those work really well and they are over the counter, laxatives do absolutely nothing for me. Good luck I hope you get some answers soon!!

I hate to say it but for me I just want to yell "I TOLD YOU SO" because I've gone 15+ years with this disorder and no diagnosis so my family would think I was faking it and my coaches would think I was faking it because I'd pass out during conditioning. Once my heart rate gets up so high if I don't stop and let it slow down I collapse. My family has become a little more understanding as they learn more about the disorder. For us to say "I'm really tired today" really means you are just physically and mentally wiped out!! There are times that I really do not want to stand up because I don't want to have to have one of my "dizzy spells". People just don't understand that and I don't think they really can. It's like trying to explain to someone who doesn't have kids what life is like with a newborn, you just can't comprehend it until you have to live it.

I have this happen occasionally too. One time I was in a door way and I just kind of bounce back and forth from side to side because not only was I shaking but I couldn't hold my balance either. My doctor suggested sleeping with a few pillows under your head so that you are more elevated. He suggested 5 pillows but that sounds REALLY uncomfortable!!

PHEW! Thank goodness because everything I've ready about POTS says to drink tons of water and if I drink more than 1 or 2 glasses in a row I start to feel really bad so I have to drink a pop (sounds insane but it helps) which I'm guessing is due to the sodium. Thank you ladies, I was starting to feel like I was going a little crazy. I mentioned that to my cardiologist, who supposedly knows about POTS but he looked at me completely dumb founded and had no explanation as to why that was. Puppylove - no worries about not having any advice just hearing that I'm not the only one that feels that way after drinking water helps a TON!! Brethor9 - I'm sorry you had such a bad reaction, that's frustrating!! I am thirsty all the time, I always have to have something to drink with me but I tend to stay away from water which isn't good. Maybe I can alternate 1 glass of water and then Gatorade or something with sodium. Maybe that will help.

I got my first ever flu shot and 3 weeks later I was in a hospital and in a wheel chair and I'm convinced that the flu shot made me have that bad of a flare up.

I saw that there wasn't a support group in Nebraska so I would love to get one started, would anyone be interested? If you are interested please let me know!!

From everything I've read people with POTS need to drink LOTS of water but whenever I do that I start to feel horrible. I tried all last week to increase my water intake and it was the worst week I've had in a year. I was exhausted, sick to my stomach and really dizzy all the time. Has anyone noticed that water does this to them as well. I've tried adding salt to my water like my doctor said but that doesn't seem to help much. I've switched to gatorade but there's so much sugar in that I really don't like that option. Any suggestions?

Hi everyone! My name is Gwen and I'm 31 years old. I was diagnosed with POTS almost 3 years ago. I've had it since I was a teenager but it wasn't until I got my first ever flu shot (1 month after having my 2nd child) that I wound up in the hospital and in a wheel chair. Thankfully I was given the only doctor who specializes in POTS in this area. After a spinal tap, multiple Eegs, MRIs, etc I was given steroids and sent home. The doctors thought I had MS. It wasn't until a follow up with that doctor that I started talking about my "dizzy spells" (as I call them) that he immediately scheduled me for a tilt table test which for a person for POTS that was by far the worst test I've ever had. I almost passed completely out and I almost vomited. My heart rate went so high they had to go get a nurse to check me over before they would move the table and unstrap me. I've tried the different meds but the side affects were so much worse. I've dealt with POTS for so many years that, as strange as this sounds, it's "normal" for me so the side affects from those meds just weren't worth it. I exercise daily. In fact shortly after being diagnosed I did my first figure competition. I've done a marathon and a couple half marathons in the past. Some days it's pretty much impossible to workout so I just have to take it 1 day at a time. I'm glad I found this site, it will be nice to be around people who understand what I'm going through. My family is, shall I say, less than supportive. I had a "dizzy spell" in front of my sister and her response was "Oh, you still have that", as it's just going to magically go away HA! My goal is to start a support group here in Nebraska and to help raise awareness for this disorder. The most frustrating thing is the lack of knowledge about it in the medical industry. I've had nurses ask me "Are you a nurse?" when I explain to them what it is because I've done so much research on it.