jenwclark

Wow. That was a bad night! I hope you're feeling better. spike

Thank you! I don't have any particular plans for today, but it just happened that last night I had 3 friends in from out of town, including one from abroad. They brought me a flourless brownie from a local restaurant and put a candle in it for me. So I'm feeling suitably celebrated. spike

I feel that way, too. Like KeXia, I have worked hard to have a broader idea of "success", and when I'm on my own or with my close friends, that carries me through. But when I find out an old friend has kids or is involved in some exciting career, it still hits me pretty hard. Maybe someday I'll have a solid enough sense of my own self-worth that it won't bother me. spike

Yup, that's "normal" for POTS, to the extent the word ever applies to us. Since the autonomic nervous system regulates heart rate, dysautonomia can make it beat too fast OR too slow. And the same goes for blood pressure -- in addition to the postural symptoms, it can go either way for no apparent reason, just because the regulating system is wonky. My resting heart rate is often in the high 40s or low 50s on meds, and it actually never gets above about 75 anymore, even when I exercise. Before meds, it was 40s before I got up in the morning, but 60s the rest of the day, with spontaneous bouts of 120-150. BP was usually 80-100/45-60, with the lowest reading coming before I got up in the morning. You'll find other people here with patterns even more like yours. spike

Yes, it takes me forever to get over the tiniest cold, too! I'm sorry you're having a rough time. I also understand about dealing with other people's assumptions. I feel like people who only see me for a few hours at a time assume that the rest of my life is like those few hours, when the truth is that I spent most of a day resting up enough to go out. People see me doing something one week, then the next week I say I can't do it, and it's easy for them to assume I'm a hypochondriac, or worse, my symptoms only show up when it's "convenient". And some people seem to assume that if I AM up and around, I must be feeling good. I'm sorry the people in your daily life don't understand. I wish I had an answer for how to explain it to them. But we DO understand here. Hang in there. spike

How neat! So he'll keep that exotic charm. I hope all 3 of you enjoy having him around.

He's adorable. Will he grow into those enormous ears?

And after all that, you still have a sense of humor. I'm glad the surgery went well, in spite of the unique complications. I hope your recovery goes smoothly and that you're feeling more comfortable soon. spike

Thanks, Morgan and Em. My cycle has been very irregular the whole time I've been on Nuvaring, and it's not the first time I've bled for 3 weeks straight on it, so this isn't really a change. Last time I saw my OB/GYN, we talked about it, and decided that although something else might regulate my period more effectively, it was worth sticking with the ring rather than having one more drug going through my digestive system. It is an inconvenience not knowing when I'm going to start bleeding, but it doesn't really interfere with my life or my health. And I'd rather have light irregular periods than heavy regular ones. I'd just like to KNOW why it's happening. spike

In my case, my heart rate was 80 before the test (when I was lying down, but nervous), over 130 for most of the actual test, and 60 after (when I was lying down and relaxed). I'm guessing part of the theory is that if it's anxiety, it will show before you're tilted? Just a guess, though. This is certainly more your field than mine! spike

I realize it may be a bit late to throw another question into this thread, but here it is anyway. I've been on Nuvaring for a year and a half, it's the first time I've been on birth control, and I started it specifically to try to lighten my periods. That part has worked -- my periods are much lighter and less incapacitating than before. But they're also less predictable and often longer. The pattern seems to be that at some point in the month I start spotting, and I keep spotting more and more heavily straight through until I take out the ring and have a full blown period. The thing is, this is the second month in a row I've started bleeding within a week of putting the ring in. I've talked to my doctor about skipping periods, but I'm not quite sure what would happen if I tried, since it seems my body really, really wants to bleed. Don't get me wrong, I'm still much happier than I was without the ring, but I'm curious why this is happening? Has anybody else had their cycle become more irregular on the pill than off? spike

I get the jumping eyes sometimes, too. It happens along with something I describe as my "brain blinking". It feels like a black out for just a fraction of a second, but it's not long enough for me to fall down. I had a couple of EEGs to check for seizures, but they were normal. Or rather, the second one was abnormal, but it indicated a completely different type of seizure that would not explain the symptoms I described. A seizure med didn't help at all. So for now, I'm assuming it's POTS related. It's on my list of medical mysteries to follow up on at some point, probably with a cardiologist. spike

Hi, Morgan. You were getting your pacemaker right about the time I joined the forum, so I got your story mostly from other people posting updates. A lovely demonstration of the support and concern in this community. Glad to hear you sounding upbeat, and I hope you and your doctors get the wrinkles smoothed out. spike

Wow! That sounds like a lot. When I ventured back to college, I started with just one class. My hat is off to you, and I wish you the best of luck. School + POTS can be really rough sometimes, but it's totally worth it when you come out the other end with that wonderful degree. spike

Sending good thoughts for tonight and tomorrow.

I have the same experience as Amy. My heart doesn't necessarily race, but it feels like it's pounding really hard. I can see my hair twitching in time to it, or see waves forming in my water glass if I'm leaning on the table. For me, that definitely goes along with feeling more symptomatic. I've been on a beta blocker for several months now, and that keeps my heart rate low (maybe too low), but it doesn't stop that pounding. spike

Em's probably right that you don't need to worry about that amount of lactose, but if you want to avoid it, Nuvaring might be one possibility.

Check out the links page on the DINET website. There's some fibromyalgia stuff there.

Some anniversaries are hard. It sounds like your husband has a good attitude, but sometimes you have to stop and mourn for what you've missed. We're here for you. spike

Hi, willows! My symptoms are different, but I also sometimes find myself alternating between one good day and one bad day. I've even learned to plan around it, and save up any challenging tasks for those alternating good days. I don't really know what's going on. My best guess is that on the bad days I'm resting up, and that makes the next day better, but there may be something completely different going on. So if you are going crazy, at least I'll be there to keep you company. spike

Wow! That sounds like a pretty scary reaction. I'm so glad you happened on a doctor who understood what's going on with you. Hope the 5th try is the charm. Spike

I was in college part time for years while receiving SSDI. In fact, they didn't even take my benefits away when I did a year of grad school, even though I was getting a stipend. Apparently it didn't count as "working", because the stipend wasn't in return for any service I was providing. That was a total surprise. If your disability claim comes up for reconsideration while you're in school, you may have to explain why you can do school and not work, but in my case, they accepted that I could do school because the schedule was so flexible -- I could study when I felt up to it and relax on my bad days. spike

I would judge an alternative health care practitioner by the same standards as a conventional doctor. Does he listen to you and answer your questions? Does he really seem to have an understanding of POTS (including the fact that it takes many different forms)? I have spent many years trying alternative treatments. Some of them helped; some of them didn't. For the last several years, I've been working with an MD who also uses alternative treatments. Her approach is to give me a whole bunch of suggestions and tell me to experiment and see what works. But even she has her prejudices and blind spots. Use your judgement, and trust your gut. spike

Coconut milk can be another good substitute, especially in deserts. I made a key lime pie a few years ago with coconut milk in place of the condensed milk, and a little corn starch to thicken it. The crust was crumbled up gluten-free ginger cookies.

I'm with Carmen. It does sound like time for a new doctor. There's a list of patient recommended POTS docs somewhere on the DINET website. Have you looked at that to see whether there's anybody in your area? You are the expert on your own body, and the best doctors respect that expertise. I have tried to work with doctors who told me I just needed more exercise, or to get up earlier, or to get out of the house more, etc., and not only did they fail to help me, but their "advice" pushed me into paralysing feelings of helplessness and depression. You've been fighting this for two years already, which is a testament to your strength. Have faith in yourself. spike