iheartcats

Well, this afternoon I was in a bit of a rush, stressed, and was an hour or so late on my Midodrine. A bit dehydrated, too, so overall pretty bad for POTS moment. Well, my HR flew up to 203 (monitor). I had to 'squat' for a minute, drop it to around 120s, and then it varied from 100-150 (more tolerable). I was able to get to my Midodrine, hydrate, etc. and while not having a great day (more symptomatic/higher rates than usual) I am more stabilized. So this was my most 'extreme' flare-up. At what point do you really get concerned about the HR? Mine was really bad for a few, but I got it under control. And it would've been more stressful trying to get help in ER and explain POTS than knowing what I can do to treat it. Obviously if it continued in the 180-200 range I would've had to do something. But geez. It's hard to remember you are so sensitive to things, you know? I'm just so glad it wasn't hot out. And I want to avoid this kind of thing in the future. This as my 'worst' day since I had the flu last winter...and the doctor warned me about that (180 when I stood up on flu was not a surprise).

This one has rarely gone haywire, and I know what you mean. The worst thing I've encountered is keeping the band damp. Kinda gets uncomfortable (the part that has to get the signal on your skin). I think I have this one: http://www.polarusa.com/us-en/products/fit...#lightsteelblue It's only acted up a couple times at work and I had to stop/restart it (beep. beep). It was amazing watching my HR go from 68-75 to 115 today. :/ I'm 'used' to it but still amazed about my fight with gravity!

earthmother: that was positive, the one benefit is my workplace hasn't been extremely busy due to the economy! sunfish: i am currently on FMLA. i've had to take about 1/4 of it so far...they make me turn in anticipated fmla time each quarter, but i am listed as intermittent so i can take a day for an emergency situation/bad flare-up. how will this affect my taking an 8-12 week chunk of STD? i'm afraid if i use up the rest of my FMLA on STD, i'll be in trouble as i won't have any more time off for my illness. should they have mentioned STD for when i was out longer than a week once? also - my work is aware because i used up all vacation and sick time for POTS (all but one day this year)...so i had to go on FMLA. i'm doing my best, they know this, and my boss has been decent about everything. i'm hoping to get better so i can keep working (i really need to)...but i'm getting to the point if i don't take time to focus on my illness and treatment, i'm not going to get better/even get worse. my doctor is supportive and thinks a strong rehab program will help me and i'll need to focus on that for 8-12 weeks in addition to adjusting meds during this time. if rehab is a few days a week, i'm likely going to be exhausted the other days and am fairly certain i wouldn't do well (or make it in some days) to work. i need to focus on getting better. if the STD eats the rest of my FMLA though, i don't know where i'll stand with appointments and time off.

Hi, With worsening symptoms and recommendations to get in a cardiac rehab program, I may be needed to use my Short Term Disability benefit through work. I've known people who've used this for maternity leave, but that's it. Has anyone had to do this? I think the only way to fully concentrate on treating myself is to have time off to do my rehab, appointments, etc. That can be 3-5 times a week easily, I've been told. I'm wondering what kind of 'resistance' I'm likely to meet from work, how much my doctor has to reveal (you and I know POTS is a serious illness, but many others just don't understand). I'm not mentioning this at work until I'm ready to go into rehab (have to get approval through insurance and acceptance in a local program, etc, which may take a bit)> Thanks in advance!

That was awesome...I've never even thought too look through YouTube. I remember when I was diagnosed I was like, What The...? I read a lot of medical things online but hadn't come across that. Well, it's comforting to know we all have the same symptoms. I can't avoid stairs, and it gets very high, but it goes down quickly. I tell myself at least my leg muscles are getting exercise! You do feel so out of it and abnormal with the fluctuations. It's hard to get anyone to understand so I'm glad at least I can have my Polar to know what's going on and do what I can. Thanks again, everyone. I'm less afraid of it now.

I think it's one of those situations where I knew my HRs weren't great and were all over the place, but now I can verify it! It does help me for my medicine adjustments - I can tell if something is helping more than I used to be able to - but I have to get past worrying about it 'flying up' when I'm taking stairs in the morning. The hard and cold facts in front of you are sometimes hard to deal with. When you know it's bad but have no proof, your just 'deal.' Like I've said before, I don't like this POTS thing.

My husband bought me a wireless Polar Heart Monitor (I think I was driving him nuts stopping to manually to take my HR). But boy have I found out my HR varies more than I thought. And it's rather said when it's below 120 I feel somewhat 'ok' - when it gets above 120 is the dizzy/fatigue. Some days are much better than others (sitting 75-90, standing 95-120)...others not so great (sitting 85-100, standing 114-145). I also noticed after going up and down stairs/walking farther in the morning especially, it can get to 150 and even spikes in the 170s! But it goes down fairly quickly when I stop to rest. Still that's very scary. I watch it jump 3-40 BMP when standing from either a sitting or reclined position. I'm glad I have this, and can even now 'show' people why I feel so horrid, but it's a tad stressful knowing how bad my heart rate does get. I know there are other symptoms of POTS and I have them, but the HR is so literal and scary. Does anyone else use these? And do any of you have extreme variations in rates like I do, even from day to day?

Oh goodness. Hope it's a short trial. How stressful! Hang in there.

Good - I like milk, and chocolate milk. Will incorporate more of that.

Hey, I've heard that Gatorade/G2 is just ok. Real athlete's drink powders/better things. Has anyone tried something other than Gatorade/G2 for the fluid/electroylte balance and does it work? Suggestions are welcome and helpful!

Sunfish, Thanks so much for all your input - I'm really having a hard time lately, sometimes my rate gets to 140BPM and usually my 'max' was 120BPM. 140 is where I start getting pain in the chest and I know it's not a heart attack, but still very uncomfortable. And I try to just get it down on my own because I know going to the ER is overall useless with POTS! They think heart attack/beta blocker/etc if you're lucky. I see my EP about four times a year, and he is available via email/phone. My PCP handles my other medications (allergy, asthma, etc) but knows what is going on. She will prescribe my Midodrine if I need a new script before I see my EP. I think you are right about the asthma doctor. If he feels I should start at a low dose of Mestinon and work up to 180, I think my EP will agree. I have talked to me EP about the lower dosage and he doesn't want to do that if we don't have to. He wants me on 180mg as that's what he sees work best on people. On the one hand, I'm glad it has a short time in the body. If the Mestinon really messed with my breathing, he said worst case I'd end up in the hospital a couple days. No one wants that of course, but that's 'worst case.' If it gives me bad asthma, it should be out of my system in a day or so and I can be back to normal. I hope it doesn't, but the asthma/Mestinon issues sounds like it's really variable by individual. So I'm holding out on Mestinon until I see the asthma doc later this month. But I will give it a try if he gives me the 'ok.' I can't wait until March to see Grubb without doing anything else. With my symptoms being a bit worse, I have been given the ok to up Midodrine up to 10mg. I'm starting with 7.5 in the AM, then 5, 5 (4-5 hour intervals). I can move to 10, 10, 5 but I feel more comfortable doing it in steps. I'm supposed to keep my blood pressure under 170/95 and so far I have. My 'new' dosage has been around 115/75 to 125/89. It does vary a lot, sometimes lower even. Well, thank you so much for this. I hate that my symptoms have been worse, but I have been under a lot of stress and the weather changes where I am have been crazy (we're talking 30 degrees to 70 degrees virtually overnight) and that does bother me. I'm hoping med dosages can at least get me back to my more 'tolerable' baseline!

I'm feeling a bit heartbroken today that I work so hard to at least get my family/those closest to me to understand my POTS. Well, talked to some family tonight and they were like 'a nurse was over today and said she's had tachycardia since she was young and just deals with it - she said she just takes it in stride.' I don't 'just' have tachycardia. It feels like they think I'm exaggerating (I am not). I actually do MORE than I should with my POTS. I push myself too hard sometimes, my doctor feels. I'm so stressed from the arguing that often ensues with people who just don't want to understand that I have a problem with my ANS system - it's not a 'heart problem' per se, it's not something I am imagining, I'm coping with a chronic condition. This has just been a bad day all around and I'm exhausted. Not a great way to end it, whatsoever.

I have 10MG pills now, but I think I can split them into '4' - so I can go from 5MG to 7.5MG fairly easily. Maybe I'll do that - I hadn't really thought of splitting into 4, but I bought the 'name brand' as they cut in two easier. I think I'll try that. 7.5/5/5 rather than 10/5/5. I can always go up if I need to. Thanks for the suggestion!

Hello, I've been struggling along lately & my symptoms have been worse. Higher HR in morning/while standing, dizzy, fatigue, and trouble sleeping. I'm working as much as I can (I have FMLA, but don't get paid for the days I have to take, & really can't afford not to work). The weather changes seem to be bothering me a lot this year, and whenever I feel like I am fighting a cold my symptoms get worse. Last year when I had the flu I was down for days, so I know that's common. I just hope to avoid a major flu this year. Anyway, I'm feeling down because I was working so hard to get better. My EP really wants me on Mestinon, but he wants me on the 180mg Time Released once a day. I am really, really reluctant to take that high of a dose. But he's really adamant about that dose. I have asthma so am seeing a specialist first before I even try it due to the possible complications. I don't know how to convince my doctor to let me try a lower dose at first. I have an appointment with Dr. Grubb next Spring, but if Mestinon could help I don't want to wait that long. Should I bring up my concern with my PCP and see if she'll prescribe a lower does of Mestinon in the meantime? Or just demand a lower dose prescription from my EP? I can't cut the Timed Release version, the pharmacist said, so I never got it filled. Midodrine is helping a bit, and I am going to increase my morning dose from 5mg to 10mg this weekend. My BP has been about 105-120/80-87 in the AM already though and the nurse doesn't want it to go over 170/90. I don't know how much the extra 5MG of Midodrine will affect it (and I wonder WHY is my second number always so high compared to the first number?) The BP seems to fluctuate a lot and it scares me. Any advice would be helpful.

That's a good description - I'm feeling it today - Like I am being pushed deep underwater. I hate the days when this part is bad!

I was going to post about this, too...so glad someone has for this season! I usually get the shot and haven't had major issues, maybe sore arm + headache/a bit tired for a day. I did get an awful flu last year even though I had the shot...but I hear last year's vaccine wasn't really effective (wrong strain in States). Does anyone remember hearing about that?

Hey guys - am back. Power went out for almost four days and work is, well, I am using up my last day off this Friday. Have to meet with HR next week, but I know I'm going to have to go on FMLA. My doctor wants me on this so I can get the treatment I need. He can even vouch I've used my time off (about 90% of it anyway) for medical reasons this year. My car looks like it's totaled...they've hauled it off to a salvage lot for 'inspection' and gave me back my plates. Not looking good to say the least. So while I am hanging in there, my symptoms are bad and am trying to force myself to eat and drink enough. Heart rate was way higher than usual today...but I guess the stress isn't helping me! I will take my BP lying down next time I take Midodrine...I bet it's not an issue. I'm just careful. Thanks for your answers/help/support. I guess I just have to plod thru this like everything else.

My POTS symptoms are worse than usual - dizzy, fast heart rate when sitting, stomach pains, seeing spots, shaking, etc. I'm under a tremendous amount of stress & I can't get my symptoms under control. I am trying to drink G2/Water as much as I can tolerate, but it's hard with a horrid stomach ache. I took Midodrine earlier so am waiting for it to 'wear down' so I can get some rest (lie down). But I'm dealing with major issues outside of my control (flooding - don't know if my car is totaled or not but can't get out as flood waters are high). I've no time off work and now will have to get my car towed Monday. I have no choice as I can't start it in flood water/after flooding (could make things much worse and ruin the engine, I've been told). So I have to get thru a very stressful weekend and talking to my work Monday AM before I can even assess the damage, not to mention deal with insurance. It's so frustrating. My car is a few years old but well-cared for with low mileage.

I know humidity really bothers me...I drag more than usual on those does. I remember someone at work asked if there was any weather I liked. I'm like maybe partially cloudy and 60?

I'm trying some Ambesol stuff...but since it's on my tongue I end up just numbing my lip. :/ Wow. These things are the worst so I hope this doesn't turn into a chronic issue. I've used the same toothpaste for years - wonder if it's worth switching?

I had so many sinus issues until I switched to Allegra 180 in the AM (Claritin wasn't cutting it anymore) and adding Nasacort Nasal Spray. I tried Flonase and Nasonex and didn't like them - too many side effects. I usually only use one 'squirt' of Nasacort in each nostril unless things are really acting up, then I use 2 in each. I don't love depending on a Nasal spray, but it has so far stopped my infections. Let us know what your doctor says!

I've never really had canker sores but I have one now! It's very painful and on my tongue, making it hard to eat and drink. It even woke me up in the night it hurts so bad. I don't understand how something so small can be so painful. I've looked them up and there's no specific treatment or cause. I've had it a few days and just hope it goes away soon. Any tips on how to ease the pain on this thing? Anything that's worked? Gah. Something else, but not a surprise at this point.

That's good to hear - now I don't have to stress about the testing. Awesome!

Since Mestinon can affect asthma, I have to go in for a new baseline test. I don't think I've had this done in more than 10 years (my asthma has been under control). What can I expect? I also can't take my allergy medication for 5 days beforehand...Spring is my worst allergy season, thank goodness, but I'm still not looking forward to dealing with inside allergies. Any tips how to make this more bearable? Once I'm through with all this testing, I can consider starting Mestinon (but I want to start at 30mg, not 180mg which my doctor initially recommended) so will keep you updated. I assume there has to be someone else on here with POTS/Asthma/Allergy. The annoying thing is my asthma is mostly allergy induced nowadays and I have to miss my allergy medication for 5 days! At least they said I could use Nasacort.

Let us know if the Paxil helped. I know when it gets hot and I have no air I feel much worse...but not to the level you are describing. I can still see and my BP doesn't drop to those levels (maybe 90/60). But what you did for the heat is what I do, too. G2/Liquids, Salt, Rest, Cool Compress...it's no fun. Hope you are better.