LastUnicornLady

I've been struggling with POTS for a year now, although it only really started getting serious this past summer. At first, it was so frustrating to feel awful all the time. We had no idea what was wrong with me, and my first debilitating symptom was nausea 24/7. I didn't feel like going anywhere, and I was miserable all the time. Eventually , the nausea kind of calmed down a bit. However, a whole slew of symptoms followed that. I started getting dizzy when I stood up, and fainted in front of nearly a hundred people. By this point, I had already seen two different GPs multiple times, and had a sonogram that didn't show anything. I was referred to a GI doctor, who suggested that POTS might be the answer after she heard about my fainting. We the proceeded to visit two separate cardiologists before getting a diagnosis of POTS. It was such a relief at first to finally know what was causing me to feel so ill. After the initial relief wore off, shock set in.I was very upset at the fact that this was a chronic illness that's very hard to treat. That there was no certain cure for me. But my faith brought me through that very hard time. I finally accepted that, even if my illness never went away, it didn't mean my life was over. While incredibly sick, I raised $1000 to build a well in Asia. It was an incredible reminder that, no matter how weak I am, God is my strength. I truly believe that this illness has helped me to learn patience. I have learned how to accept help from others, and I have been reminded of how much people care about me. It has showed me that I have so many great friends who are with my through thick and thin. I have learned to make the best of my circumstances, and enjoy the little things. And I have learned that normal is all relative.

Just wanted to let you know that I'm thinking about you, and I'm also very worried for you. It sounds like this is a very difficult and potentially unsafe situation. Please update us as soon as possible! I really feel a certain connection to everyone on here, and although I've never met you, I really care about you.

I decided I wanted to try out a few essential oils before heading in to the doctor, as they would probably just prescribe an antibiotic, and I'd really like to skip those if at all possible, you know? I don't remember which oils I'm planning to try out, but I'll share those whenever they get delivered. On a side note, does anyone have any experience with essential oils?

Ugh. I get this a lot. It feels like there's a tight band around my chest. Maybe one of those exercise bands? Not sure what causes it or how to get rid of it. I usually just end up laying down with my arms behind my head in an attempt to open my chest up as much as possible.

So... about 3 weeks ago, I came down with a cold. It was pretty awful, but went away within just a few days. Unfortunately, this cough has stuck around now for three weeks. That's too long for me to be comfortable with, so I'm heading in to the doctor tomorrow. Feels like I'm just in and out of the doctors lately, because of POTS, mostly. And I just went in last week for a plantar wart... Ugh. Anyways. Not sure what's causing this lingering cough, I just hope it's nothing too weird. Seems like everything is coming against me lately. Nothing can be simple.

So glad you were able to get a diagnosis, although I wouldn't wish this on anyone. I am perhaps facing a diagnosis of EDS as well as my POTS... Interested to see how that goes in May.

I am sort of on Midodrine. I say sort of, because I got the prescription and tried it while on .2 twice a day for Florinef. I got awful headaches, palpitations, ugh. Terrible. I quite right away because of the palpitations, but decided to taper down my Florinef to just .1 twice a day, and try it again. I didn't get the bad reaction I got last time, but I really don't see any improvement. But I know a lot of people depend on their Midodrine, so I'm really not sure why it doesn't work well for me. I'm hoping to give it another try this week, and maybe it will work better... Good luck!

I've had a pretty good experience with my Florinef so far. I was on .2 twice a day, but now I've gotten down to .1 twice a day. (Definitely preferred the .2) Is it possible you've come down with something like a bug?

Ugh. I had my first illness after my POTS onset, and it was terrible. It was a simple cold really, but I was definitely more POTSie than normal. (Er... you know.)

Yes, it can. My family has a history of Vasovagal Syncope, but I'm the only one with POTS. I also likely have EDS, and there are a lot of various symptoms in my family history, but I'm the only one with significant hyper mobility.

Stairs are really hard for me! I made the mistake one time of thinking it would be fine to walk up three flights of stairs at a time... HA! What a joke. They wear me out, and I then have no energy for anything else. I also have proprioceptive issues (possibly related to my suspected EDS), which means I just have more problems judging how far to lift my leg up, how far away the step is, etc. All in all, a bad idea.

OK, so this is rather not related to the actual question per-say, because I don't have anything really to add, but I just wanted to say how funny it was to see that there was a test with my name on it. My name is Anastasia, but everyone calls me Ana...

Huh. See, I HATED doing the treadmill stress-test, and think I would have done SO much better with the stationary bike. Unfortunately, they didn't have it at the place I was being tested... Ugh. It was the first time I'd ever walked on a treadmill, and I just felt so awkward.

Thanks guys! This is definitely helpful, and I'll be talking with my doctor. Anyone else, if you have any tips, suggestions, recommendations, comments, etc., I'd still love them! Always like to hear from people.

I have a really great chiropractor, although he hinted that I might have a conversion disorder, which irked me a little. He's really great in all other ways, though. I've definitely benefited from seeing him, especially with my joint issues and chest pain, although I am on a downward spiral as far as that's concerned...

Hello, all. I've been doing a lot of searching lately for treatment options that AREN'T based on medication. I currently rely on my Florinef to function, and started doing Midodrine as well, but saw no relief. (Glad I didn't have such an adverse reaction, this time!!!) I'm looking into a lot of different things from chiropractic care to dietary changes, and came upon IV Saline therapy. I think it would probably yield good results for me, because I saw improvement whilst on a constant IV fluid drip in the ER after I fell and hit my head. All of this being said, I'd really like to talk with my doctor about IV fluids, and whether he is comfortable using them. Before I talk with him, I'd really like to know if anyone here has used this therapy, what their experience was, things they learned, whether they suggest it or not, what it costs (we do have insurance, but we pay towards a very high deductible, so until we get to about $5000 worth of medical bills, it's all out-of-pocket), etc. Also, any tips on bringing it up with my doc would be much appreciated! I'm a normally very shy person, so bringing something up is very difficult for me. Also, he is only sort of knowledgeable on the whole POTS thing, so he really doesn't know too much to begin with. I brought up compression stockings and got him to prescribe me a pair. Pretty much the only thing he really knows about is the Florinef, unfortunately. Anyways, whatever you guys can share is much appreciated!

I totally get where you're coming from, sister. Mornings are NOT my friend. Lately I've been on a really weird schedule that I'm currently trying to get out of where I end up waking up around 8 in the morning through no conscious effort on my part, stay awake but in bed till between 10 and 12, then go back to sleep and wake up around 3ish. Then I fall asleep pretty late, wake up early, and the cycle starts all over. I'm not really sure what cortisol levels are, but I may have to look into them. I also noticed that taking a melatonin drink every night helps to some degree. At least it means I fall asleep earlier.

I forgot to mention that, like Raisin, my GI troubles were actually what started our journey with POTS. My first symptom was relentless nausea, then abdominal pain.

For me, the Florinef helped, but it took a while to kick in. It was really so gradual that, for me, I didn't really entirely notice the improvement until I started going off of it. Now I'm realizing how much it helped me... I'm doing .1 twice a day, and I'm trying Midodrine again after a failed attempt to start that. As for increasing your salt, I do salt tablets because I really don't like how salt tastes. I also do Ramen Noodles frequently for lunch, and broth is another good option. I also drink Gatorade, especially on days when I know I'm going to be doing a lot of stuff.

I have suspected gastroparesis and/or muscle spasms, though it's never been officially diagnosed. I have found some relief in essential oils. When I ingest two to three drops of peppermint each day (in tea or hot chocolate, for example) I actually see marked improvement. I have to keep it up and can't miss or it comes back. I also find momentary relief putting the essential oil DiGize on my stomach when it's hurting. The DiGize also helps with nausea as well as the pain I experience. I definitely recommend looking into essential oils. I'm afraid I don't have any experience with pyloroplasty, although I personally wouldn't opt for any kind of surgery having dysautonomia unless there was no other option. Sorry I can't be of more help!

I've read that some ataxia can be caused by Vitamin B12 deficiency. Do you take a B12 supplement of any sort? Is it possible that you are in need of one? I didn't realize it had a term, but I actually get ataxia, too... Especially after the dance classes I take.

Hey, friends. Sorry for the TMI post, but it needs to be said. I started having explosive diarrhea about two hours after eating this afternoon. This is the first time it's happened. What I'm wondering is, when do I worry? If it keeps up, when do I get in with a doctor?

Definitely get this checked out by a doctor, preferably a neurologist who specializes in dysautonomia. Good luck with the diagnosis!

Thank you for the encouragement everyone! I realize that EDS is not the end of the world, but I was so hoping that the cause of my POTS would be curable, not just manageable. I guess it's not meant to be. The soonest we could get in with the doctor who wants to investigate EDS is May, I have a while yet to wait. Ugh.

Hey, all. I've been having a really rough week. I got a cold a while back, and as I'm sure you all know, illness is about 10 times worse now that I'm dealing with POTS. And like it usually happens with me, my cold has developed into bronchitis... Fun fun fun, huh?! Yeah. Well, enough whining. What I wanted to say was that I'm now about 95% certain that I'm facing a diagnosis of EDS. And it's gotten me really down... I talked to my mom the other day to get some info on our family history and such, and everything matches up. (Thankfully no sudden death due to cardiac causes or organ ruptures.) I mean, it's insane. That, combined with my own hypermobility, my POTS, and my joint issues combined makes me pretty well certain I'm facing a diagnosis of EDS. And to be honest, I'm partly relieved and partly upset. Relieved, because it's gratifying to know that there's a real cause for this. Upsetting, because this takes away a lot of the hope I had for growing out of it. EDS is for life. I feel like I'm grieving all over again for the life I had wanted to get back. I was still holding on to some shred of hope that I would get over this and move on. But now... It just is so very hard. I would love to get some support from other people with EDS. Tips for dealing with it, lessons you've learned, etc. Whatever you want to contribute is good. Feel free to PM me if you want.