hholmes13

This varies greatly from person to person. I've been on STD twice since my POTS came on in April of 2011. This summer, I was off for almost 14 weeks. We were worried I wouldn't be able to return at all. Luckily, I think between a mix of med changes, physical therapy, and rest I started to improve. I had to take it really slowly going back, but I've been back to work full-time since the end of September. I'm not feeling as good as I did...having to go like crazy 40 hrs a week, take care of things at home, and take care of my daughter takes its toll. I've just had to learn to take it easy when I need to. I've really had to lower my standards for what I accomplish in a day, especially when I'm feeling POTsy.

Congratulations!!! Great news! From the well-informed/insightful posts I've seen from you...you've definitely got the brains to be a doctor! Best of luck! Depending on what you decide specialize in...you may have quite an influx of patients from this forum when you graduate. Hahaha

Interesting! I don't take it all the time and haven't really noticed any effects on my symptoms. Whenever I get in a bad flare, my ability to sleep at night goes out the window. I'll take a 3 mg tablet. If I'm taking it for longer stretches, I make sure to take a hiatus for at least a week every two months. (That's what it says to do on the bottle.) For me, I feel so awful when I can't sleep...this stuff has been wonderful for me. Other sleep aids make me feel really weird and groggy or I wake up hating the world...definitely not fun!

Interesting! Glad to know it's not just me. This one has given me a tiny bit of a runny nose and is lasting a bit longer than usual, so maybe this time around it may actually be a cold although not really much of one if it is. Granted, I have been taking vitamin C supplements (Emergen-C or Airborne) 2-3x a day the past few days. I've heard so much about autoimmune stuff possibly fitting in with POTS that I've often wondered if I should have some of those things checked out.

So I get these strange bouts where I feel like I'm coming down with a cold...my throat starts to get sore/scratchy and I feel tired (more so than usual fatigue). However, I never end up actually getting sick (no congestion/aches/coughing/sneezing, etc). It will last for a few days, and sometimes after I feel like I need to clear my voice a lot and it breaks a little. I always think...oh great I'm getting sick, but then it doesn't actually happen. Does this happen to anyone else?

Ugh you poor thing. Sorry both for you and your bum! Hope things get better soon!

It is a very frustrating and freaky symptom. I get bouts of it too. Even if I lay down and consciously breathe deeply/slowly it doesn't seem to go away. Sometimes these spells go on and off every day for weeks. It drives me nuts! I think it is a very common (and annoying) POTS issue.

Well I'm not much of a singer, so people wouldn't be missing out on me not singing. I have noticed when my symptoms are flaring, I do sometimes have a tough time singing. I played the flute for 15 years, and I can't get too far with that without almost passing out anymore. The strange place that I notice issues with is at times when I'm trying to read my daughter bedtime stories. Sometimes I feel out of breath and like I'm struggling to keep up. It's really odd and annoying! I love my time with her before bed to snuggle and read so I hope it doesn't continue to get worse.

I'm sorry Naomi! That has to be so frustrating. I have no experience with SS, but I think you are definitely wise to talk to an attorney. I'm glad she thinks you have a good chance. Good luck with the process, and I hope you receive some good news!

Seems like a wealth of info! Thanks for sharing!

So glad you are going to have someone to help fight for you! Good luck!!

Welcome and sorry you need to be here! You'll find lots of incredibly knowledgeable and supportive people here.

When I'm in the midst of a bad flare...I shuffle like a 90 year old woman! My husband was always teasing me to "Hurry up slowpoke!" I'm back to moving pretty quickly now, I just hope it lasts!

Well at least here's some validation to what a lot of us experience!

I'm so sorry you're going through all this stuff right now. That's a lot to deal with at once. Sending positive thoughts your way for you and your daughter! Hang in there!

Hi miajnt, I've just been back to work for the past few weeks after being off since the beginning of May. My biggest piece of advice is to pace yourself and take breaks if you need it. Are you working with a doctor for your return to work? I've been working closely with a doctor in occupational med at work to help me get back. She had me start with 4 hr days every other day. I did that for a few weeks then went up to 4 hrs per day. Last week I moved up to 6 hrs per day. I'm allowed to try and go a full 8 hrs this week. I still have restricted duty with limited amounts of standing/walking around. The doctor said once I can tolerate full days at work okay we'll remove those restrictions. I'm really glad we did it this way. The only issue I'm worried about is things in my lab are kind of nuts right now. We're in crisis mode to get some grants funded and I find myself trying to help out more than I probably should. I was starting to feel lousy by the end of last week. I'm hoping I can keep it up. I've been feeling pretty well overall lately and want to keep that going. Good luck! Don't try to do too much at once. I hope your boss/coworkers are understanding and don't try to push you too hard too fast. Really listen to your body and give yourself a chance to adjust. I know I've been napping more again since I've been working longer hours. It's hard to adjust being out and about so much. I hope it goes well for you!

I've been on midodrine for over a year and I haven't had much for side effects either. The only thing I got was the tingly scalp and goosebumps/chills. However those have gotten nearly non-existent for me. And actually...for me the tingly scalp thing was just always a sign that okay, my meds have kicked in. I love that I can go from sitting to standing without my vision blacking out every time! I hope it helps you out too!

I've always been prone to motion sickness in vehicles since I was a child (my friends' parents learned quickly to let me sit up front...can't even remember how many times I puked in the back of a station wagon!) but I used to be able to handle any ride, swing, etc. At 16 years old, that changed and any ride that goes in a circle makes me incredibly ill. Before POTS I could still handle rollarcoasters and things that didn't have repetitive motion. (Haven't been brave enough to try since...too worried how I'd handle it.) Now I can't swing on swings without almost throwing up. In fact, watching my daughter go on rides that spin in circles makes me feel queasy. Even though my symptoms are pretty controlled now, I still get really disoriented riding on elevators. I have to go to the 20th floor of my building at work frequently and many times as I get off, I have to brace myself against the wall or sit down for a bit because it makes me really dizzy. A few times I almost blacked out. It's really irritating! Plus people look at you weird.

Thanks everyone!! Libby - I was a runner before POTS. Definitely not a superstar or anything though. I ran track all through high school and have kept it up off and on ever since. It has always been my favorite way to exercise and my source of stress relief. I hadn't been able to run since April 2011...so these past few weeks since I have been at it again have been awesome! I just have to watch how much I do because EDS has made my joints more prone to a lot of pain in recent years. sue1234 - I never really had my POTS classified and never had my catecholemines tested so not sure if I'm hyper or not. I'm guessing not though because my bp tends to run lower. (usually 90/50-100/60) Although...it's confusing because my neurologist said that they like to think of most of us POTsies as being somewhat hyperadrenergic.

Hi All! Hope everyone is hanging in there and doing okay. I'm just really excited because I had a huge accomplishment today that a few months ago I never would've guessed I'd be able to do. I spent all day walking around in the heat at "The Great Minnesota Get Together" (aka the state fair) and came home tonight (this also included traveling a little over an hour each way) and ran 3 miles in 30 minutes! I feel fantastic right now. I was completely wiped out after the fair and feeling super sore and achy. My run really helped to stretch out my muscles. A few months ago, I couldn't even get through a shower without getting out quickly to lay down. Getting dressed was even a struggle some mornings. Mestinon has been amazing for me. It has helped to give me my life back. I think all the cardio I've been doing is also helping even out my hr some. I noticed after my run, it didn't take very long for it to come back down to a more normal level. Anyway, I hope I don't sound like I'm boasting or anything. Totally not my intention! I just know you all can appreciate progress in this area more than anyone else I know!

My doctor had me start with half of a 60mg pill 2x/day for a week. Then I added one additional half pill each day for a week until I got up to 60mg 2x/day. I was allowed to increase up to 3x/day but didn't get that far. I started to feel small time periods of relief (i.e. 30min - 1hr) around 3-4 weeks in, but it wasn't until I hit the 6 week mark that I really started to feel good. I was going to increase to 3 doses/day if I wasn't feeling better or if I felt awful at night but so far so good. I like to take the lowest amount of meds possible to avoid side effects. I've been working again and actually running/exercising too. It has really helped to stabilize my heart rate and my horrible nausea and dizziness are hardly there anymore. I was psyched it helped with tachycardia because my neurologist had me go off my beta blocker for this med. My hr was routinely 140-150 just standing in my kitchen in the mornings without the beta until this stuff kicked in. I've also got way more energy. For the first time since April of 2011, I actually kind of feel like my old self! I'm just hoping it continues. I have been very fortunate in that I had very few side effects from this drug. I mostly got tons of muscle spasms that would occur all over my body throughout the day. It was annoying but way better than the GI side effects I expected to experience. They're pretty much gone now. I had a little bit of muscle weakness in my legs for the first week or so too. Also, I did wake up during the night once because my left leg was shaking so badly it felt like it was vibrating all the way down to my bones...super weird but it only happened once. I have such a touchy stomach and had lost 20 lbs in a year due to nausea from POTS/OI, so I totally expected to be super sick from this drug. However, it really helped me get my appetite back and made me stop feeling so full/bloated after eating. Mestinon has been amazing for me and has helped me regain my life back...I hope it helps you out too!! Good luck!!

Hi Batik, I am really sorry you're having such a rough spell both physically and emotionally. It sounds like you're under an incredible amount of stress right now. I don't have much in the way of advice for you. You asked about going with friends tomorrow...if you are feeling up for it, I would try to go even if it's just for a half an hour. The isolation that being so ill can cause can really take a toll on your mental health. I know for me, when I was in the midst of my horrible spell this year, it felt so good to see people and have some kind of normalcy. For me, it was great to take my mind off how awful I felt. However, you have to decide if you have the energy and ability to deal with getting out. Hang in there! Sending positive thoughts your way!

I totally understand that this is a tough subject. It drove me crazy that no matter how hard I tried to be active, I just couldn't do it. For most of this summer, just trying to go out to the grocery store would make me feel so horrible that I'd be laid up and asleep for a chunk of the day afterward. I'm excited that I'm able to do exercise right now again finally...but I'm not going to count it as a cure all. I feel like I'm just teetering on the edge of a cliff waiting to fall back into a flare up again. (Hoping it won't happen of course!) Sometimes POTS seems to have a mind of its own with regards to how one is feeling. Having EDS makes me wonder that if for me, this will always be at least somewhat of an issue. I mean I can't magically make my collagen not defective. I'm just hoping I can keep it managed well enough to have some semblance of normalcy in my life. At the moment the combo of meds/activity seem to be working, but I just take life a day at a time and enjoy every symptom free moment like it's my last! The problem is doctors like to lump us all together and try to put a one-size fits all bandaid on everyone even though we all have very different presentation of symptoms and possible underlying causes. I agree that activity can be a good thing...but you have to work within what you're dealt.

Ugh. I agree with you all that people shouldn't all be lumped together like that because often exercise doesn't help at all. To top it off, I was exercising 6 days/week training for a half marathon when my POTS came on. It was not from a lack of exercise. The line about exercise before medication bothers me...for me personally, I wouldn't be able to tolerate any exercise without my meds to help control all the horrible near syncope/dizziness! Articles like this frustrate me because they make it sound like people with POTS are lazy and that is why we're ill. Exercise could probably be beneficial for many people...but I wouldn't think of it as a cure-all. Like brethor9 said...people with other underlying conditions have a lot going on that make exercise difficult. I have HEDS, and I have to watch how much high-impact stuff I do because my joints can get really bad and my stupid hips like to sublux. I've been jogging/running again, but making a point to listen to my body and not do it every day.

I've been on Midodrine since May or June of 2011. I've had pretty good success with it. I too had lots of the goosebumps/tingly scalp side effects at first. It got better, and now I hardly notice it anymore. It does help me with all of the blood pooling in my legs. However, now that my bp is stable I don't take 10mg 3x/day anymore. I take 10mg in the morning along with my first dose of Mestinon because that's when my issues are the worst. I may take another 5-10mg in the afternoon depending on if I'm planning on being up on my feet a lot or if I'm feeling more symptomatic. I've had a few episodes of the supine hypertension from it this summer, and I did not enjoy it at all. My bp usually runs around 100/60 or so and I've had it go up to 160/95 while sitting and I got really short of breath and my hr was like 40. Not fun at all. So I have to be careful about taking more than my morning dose. The annoying this is, if I don't take it in the afternoon, just sitting still in a chair will cause my feet to turn dark purple within a matter of minutes. I've tried compression garments but they never help with symptoms and just cause my legs and feet to go numb. Overall though, it has helped me. I have found I can choose how often to take it depending on my symptom severity and activity level.