iheartcats

Thanks for this - the pharmacy was able to cancel. To start at 30 I'd have to cut a 60 in two so that will be better. I'm going to talk to my EP in a few weeks and will start it then. I don't know how it is supposed to affect asthma. As long as I take my allergy medication + nasal spray I don't have too many asthma related issues. It's primarily exercise and/or allergy induced. I wonder, though - how do you get your asthma 'checked' (ie, how much has it improved)...especially since it rarely acts up now!

I tried to PM you but your box was full - popular! I've had to cut ties with a doctor because when my appointment came close, I became panicky. Seeing a physician shouldn't increase anxiety - and I was just getting a vibe that the doctor wasn't 'that' concerned...test after test, yes, but then what? Not getting back to a patient during a very bad flare-up is never good practice. Hope you find some helpful docs in DC. I would think they'd have some great physicians in that area.

I had a couple positive ANA test, but am showing no signs of Lupus/Rheumatoid Arthritis. I saw a Rheumatologist who told me to just be aware and watch for symptoms in the future. My vitamin D was good, though...but I do drink a lot of skim milk (maybe 5-6 glasses a day, on average) so I think that is what keeps it up. I'm not a sunbather! It does slightly worry me, but I know some people have positive ANA and never develop anything so fingers crossed.

All this makes me feel so much better. My doctor was wondering how much they'd want to know, but I'll tell him to keep it to the minimum unless they demand more. Intermittent sounds good because it covers my 'sick' time, but I will try to schedule my appointments in advance as I don't want to seem unorganized/dump stuff on my coworkers. But at least I won't have the worry of being 'let go' because I've used up all my time and it's either get treatment/go to work. I think that in and of itself will help my stress levels. I'll be covered for my appointments and if, and I hope not, I have an extremely bad spell.

I hate the urination frequency/urge with POTS. I'd get checked for a bladder infection, just in case, with the stinging. But last year (before I was diagnosed) my poor PCP sent me to a urologist and here I am...this young women he can't find a thing wrong with (even had a CT Scan of the bladder). I can't tell you how relieved I was to find out it was POTS in the end... Anyway, at least you know the frequency/urge is POTS. But if you get a stinging, it's better to get a simple test for an infection as you don't want it to progress to the Kidney's if it is an infection. Good luck!

That's my concern, too...and since you can't break the 180's, can I tell the pharmacy to cancel that order? My appointment with the doctor is next month and I figure I've gone this long without it, what's a few more weeks? 180 twice a day does sound high, compared to what I've found in searches on the board for this. Plus the whole asthma issue.

I've been trying to research Mestinon as my doctor wants me to take it now...but I saw that it's contradicted in patients with asthma and can worsen asthma (something I do not want to have to deal with right now). Also, I've read it can take a while to get used to and I don't have any time to take off work right now and sitting at work suffering doesn't sound very pleasant. I am always very anxious about trying new medications. And this one has side effects that may affect my asthma (and even a warning of death regarding breathing muscles). I hate going to my next appointment and saying I was too scared to start the medicine (and this has happened before)...and it may happen again! Anyway, the dosage is 180mg/two times a day and the tablet can't be broken in two...timed release...and I worry this dosage is way too large. But it's already called into the pharmacy. Please share any experiences you've had starting this and if anyone has asthma and takes this, what should I watch out for? And what about starting with that dosage?

Well - I'm out of sick days/time off and it's only 2/3 through the year (not a surprise for POTS people, but stressful). My doctor and I discussed FMLA (which I'm eligible for this fall). It will be intermittent to cover appointments/flare-ups/illness (which of course flares up my condition)/treatment/etc. I'm working out a schedule ahead of time as much as I can, and will try to limit the non-planned-in-advanced days as much as possible. My concerns are: 1. Will my work have the option of moving me to another position? (I'd rather not have this happen...) And if so would they have to put me back in my current position once I no longer need FMLA? 2. Will my work require a letter stating my 'conditions of being able to perform my job' (I don't want to dig myself into a hole here). Can the doctor note something like when my condition is under control, I have no limitations except standing for extended periods? Part of my treatment is rehab to make things better...does he have to note that? I always hear to say as little as possible. 3. What do I have to tell coworkers? I think legally it's nothing, but everyone knows how other people 'wonder what's going on and why you are off.' Thanks for any input/stories you can share, too!

Looks like I may have to get my script rewritten...I have another refill of ProAmatine to get me through to the next visit with my EP. But it's still $50 cheaper if i do it through the mail so I'll have to deal this month with the extra cost. Like POTS isn't a pain already, we have to worry about generic vs. non-generic.

My copay for Midodrine is much less than ProAmatine. Plus I'm sure it 'rings bells' when I keep refusing generic with the insurance. I had to have my prescription re-written (mail order is cheaper than pharmacy)...but noticed it's for Midodrine rather than ProAmatine. Has anyone tried both and noticed a difference? Aren't generics legally required to 'work the same.'? The cost difference and having to find time to get a new script written is stressing me out about this! Thanks for any input.

I have to file for FMLA next month. I'm almost out of vacation time/sick time (used it all for POTS this year, sadly, but 1 day). My doctor says it will cover appointments and illness (ie - flu causes my heart to race, dizziness, etc so could use FMLA as it is POTS-related). Did you have to do something special to file for intermittent? I wont' need the whole 12 weeks at once and don't want to approach work until I'm eligible for FMLA (afraid for the ol' job otherwise). Maybe this could help others, too - being able to take it intermittently.

I feel better in the fact that I'm not alone in all this - I also try not to make it an issue at work. I use my time off for appointments/POTS related illness and don't 'abuse the system.' I wish I could take a half-day for a trip to the mall, drinks and dinner. But my half-days are a trip to the doctor then home to rest to prepare for the next day (or if I'm really lucky cooking dinner or doing laundry). This is my first summer with POTS and my goodness, the heat/humidity make it worse. I thought I was bad during some really cold spells last winter. Then summer came. I just keep telling myself I have to take care of myself (and keep my job!)...but my health really has to come first and doing whatever I can to balance work and health. It's so hard. I feel so bad for all of us. It shouldn't be this way, really. Not to mention - you need health insurance, so you have to keep your job, because even if you got a new job you'd have a pre-existing condition! So unjust.

I am so tired of the 'but you don't look sick' sort of treatment from people. Any suggestions on how to deal with this in the workplace? The comments/questions/etc. I get from some coworkers...it just seems like they don't believe I have a real condition. I don't look sick and I try to keep a good outlook, be friendly, etc. (I have to work so I try to make the best of the situation). But I don't like coworkers thinking I'm getting 'special time off' or skipping out of after-work outings for fun - I'd rather have a normal existence! I'd rather be involved, go to work, live a normal life than have POTS. My 'time off' is going to doctor visits or for being sick from POTS. Never anything enjoyable. Getting through the work week and doing a few things around the house is all I can really manage during the week right now. I hardly ever go out with my friends! I'm just so frustrated and this isn't helping. How do you LOOK sick!

I've been thinking about this a lot lately. My husband really wants to know what the cause is, too, and it's hard to pinpoint. Some people remember having weird things as a kid. I had asthma - worse than I do now - but that's such a common ailment for children. I wasn't an active child & was a chubby grade-schooler, but nothing jumps out as being really off. I played kickball and tag and stuff. I ran up and down stairs all through my childhood and teen years, in high school I did sports/activities, worked and went to school, etc. In recent years I've worked and traveled and didn't notice anything really fatiguing. I'd get occasional migraines, but I think that was more hormone related (and they run in the family). In February of 2007 I caught the worst flu I've ever had...I was at my desk feeling a bit down in the morning, and by noon I felt worse than I'd ever felt in my life. I had to grab a taxi home and on the way home I saw a guy get HIT BY A CAR and fly in the air and had to call 911, etc (talk about stress). So I was sick for days. About 3-4 months after that mess of an illness, I started to notice weird symptoms (fast heart rate just walking around, tiredness, urinary issues) and my doctor did some tests but couldn't find anything. I 'ignored' things until January 2008 when I was finally diagnosed with POTS. I have 'ok' days and 'crappy' days...but I've not been bedridden unless I get very ill (like the flu). I haven't got worse since last year, so I am told that's a good sign. I'm afraid of getting worse every day, but I keep telling myself the longer I go and don't get worse, the better. In January 2007, before the flu, I did a huge trade show for work and was 'tired' but not anything unusual for the amount of work I put in, crazy flight delays, etc. If I'd had POTS then you'd think I'd have been completely overwhelmed/exhausted. So everything points to the flu in February 07. I just wish there was a way to test for it, but there's not. I wonder what's being researched - it'd be great if there was something that could help heal whatever was damaged (or find out what was damaged!).

I'm so sorry to hear this - it's just not something you need on top of everything else. With so many online organizations, I'm sure there is a cancer support group with advice to help you through this. Whatever you can do to make it easier on yourself and your body is worth it. You have to come first. I wish you well.

I'm so sorry to hear what a bad week you're having. You are usually super-duper-positive, but no one can be like that all the time. I'm suspecting even Ned Flanders has his days. I hope you have the weekend off and can just rest/relax. Mandatory trainings and the such get to me more than other things because I know I 'can't miss no matter what' and I get panicky and then things get worse...(and I know this, but I still do this, it's unending!). I'm hoping you just had a more stressful week than usual and you'll be back to baseline in a few days. With these types of illnesses/disease/whatever one will call it stuff tends to pile up. Where a normal folk might shake it off and move on to the next thing, we tend to keep stacking one thing on another. The weeks almost over. Let us know when you get better! Because you will!

http://abclocal.go.com/wls/media?id=6237597 It's nice to see it getting more coverage - especially since many of us with it look 'healthy' and people don't think you are sick. The more we have to share, the better!

Thanks so much for your advice. I need to try to find a box of some sort for elevation and have to check out cooling vests. I'm so looking forward to fall...this summer stuff is no good!

I've been doing ok, not great, just ok, since I started Midodrine. Heart rate has been 100-115 in the AM when I'm up and about (better than 135-150!) and 80s and 90s when sitting for the last few weeks overall. Obviously it goes up with lots of standing/exertion but still better than before. Well today it was 135-140 getting ready and now it's around 100 sitting at work (no place to lie down). Usually a latte helps a bit, but that doesn't seem to be cutting it even. The only 'change' is the humidity/heat is increasing. 80s weather didn't bother me too much as long as I wasn't in the sun for extended periods. But that's the only thing that's changed. I'm eating salt, drinking Gatorade, etc. It's making me nervous to have a sudden spike in symptoms when things have been going ok. Any suggestions? I'm trying to stay cool, I'll try to drink more water/Gatorade...but do you just 'ride out' these heat waves? Since that's the ONLY change I've had this week I have a feeling it's playing a part...but am still worried/upset. It's tough when things are going well then you hit a downturn. CatLady

If I have to fly...I drink a lot of H20 and Gatorade. I wonder if you can still get away with taking CLOSED Gatorade on the plane? I know they are so picky about liquids sometimes...but I saw Gatorade 'packets' at the store you can put in water so that may be more viable. If I recall correctly, they threw out my closed bottle of water last flight. I think now I'd have to tell the stewardess/steward I need a bottle of H20 asap (maybe take a doctors note). Dress comfortable, don't carry anything too heavy, bring something to listen to/watch to keep your mind off things... Those are all things that help me! Good luck!

While it's annoying this stuff causes POTS to flare up, I'm glad it's 'normal' for the condition. I do think stress + symptoms = anxiety which = even worse symptoms. What an illness to deal with - it's so hard to get people to understand. And it's hard to 'brush off' your emotions...that's so difficult to do.

I had a similar experience with the Endo...I guess it ruled out a lot of things, which can be helpful. Now I'm primarily back to seeing an Electrophysiologist who is familiar with POTS and has other POTS patients. But follow-up visits tended to be quick chats, blood pressure checks (which I can do at home/PCP), and discussing Midodrine dosage (which my Electro is also familiar with). I got to a point where it was stressful for me juggling work/family/POTS/doctor appointments here there and everywhere. I feel it's important to have a good doctor who knows and understands POTS, and I think it depends on the luck of the draw who that will be in different locales. I also think it's worth some testing to rule out other things just in case, but that's just me! Good luck!

When I have a 'stressful' moment of some sort (work, argument, etc.)...I can get a POTS flare-up instantly. If I'm having a 'decent' symptom day, and something really stressful/anxiety-inducing comes along, my heart rate will jump more then I think it 'should' with a normal person. Before POTS I know my heart rate increased with something upsetting (that's typical)...but now it will increase faster and pound, I'll get a dizzy, and just feel wiped out for a bit afterwards. I'll try to sit and be calm for a few, but it really seems hard to get the POTS symptoms under control after the stress/anxiety pass. Does anyone else experience this? Or does anyone have tips on how to deal at work/home/etc. when this happens?

I am so glad to hear it's helping you this much. I know you've been through a lot so I am glad they are able to help you. It is a good feeling to be able to do more than one has in a long time (which happened recently due to a new medication change for me)...so I hope things continue to improve for you!

Thank you (and everyone). This has made me feel much better about my decision.