cma

Thanks everyone for your input. I'm feeling so confused, I thought I new enough about POTS, but now I don't understand it at all. Today I did a poor man's TTT, standing for 10mins. The highest my hr got was 80bpm, at the beginning it was 70bpm, and my resting hr was 59bpm, so it didn't reach the 30bpm mark. I wonder what does that mean, if SSRI is making such a dramatic difference in my case. And why for some like Akgirl it doesn't help.

Hey, Congratulations on your baby ! I'm so sorry that you are feeling so bad. I know it's breaking your heart to not be able to take care of your lil one. I really hope that it will get better for you very soon. Are you on any other kind of meds except Zoloft? Here are answers to your questions: 1. I did not, I had POTS before pregnancy, it's been 5 years in November since all this madness started 2. I was very weak after delivery, because I've lost a lot of blood and was anemic. My POTS wasn't that bad, I was still able to breastfeed my lil one and to do basic stuff. On most days my standing heart rate was 120bpm, but I've pushed myself and didn't let myself just to stay in bed. I'm not saying that this is what you should do. I don't know for how long you've had POTS and if you are a fainter. I'm not, but I've noticed that if I move around I'm feeling a lot better than just staying in bed. I know it's very hard, believe me, I had days in the past, when I felt so weak that I literally thought I was dying. How is your thyroid? Are you breastfeeding? Some mothers say that they felt a lot better after stopping breastfeeding, this wasn't a case for me. 3. I don't really know what you mean by adrenaline surges. I used to get some kind of weird stuff going on during night sleep, when I would wake up startled with my heart raising and horrible feeling of anxiety. I don't get them anymore. 4. I'm on 5mg of Lexapro, but will have to increase it in 2 weeks, we are just starting very slow. I've noticed immediate reduction in my hr, it took only a day for me, but I'm still taking beta blokers, very low dose, because I used to get SVT's and had an ablation done for that. Well it's a long story actually You are welcome to PM me, if you have more questions or just want to chat to someone about being a new mommy or POTS. cma

Hi corina, do you still have the 30bpm in crease in hr after standing 10mins? what other dysautonomia symptoms do you have, if you don't mind sharing?

Hi bebe127. Well, I don't have medical background, so I don't know, if you should have given it more time. I can only share my experience. I'm on Lexapro 5mg, once a day. I'm taking them at night, on the first morning I felt terrible, sweaty, nauseous, very anxious etc. Now I only occasionally get nauseous. I'm on beta blockers as well, tiny dose, I don't think I could have done SSRI without beta blockers, because in the morning I'm still feeling very anxious. I don't think that I'm cured or anything, I still don't feel like my old self, but my heart rate is definitely lower.

Hi abbyw, Read your post. Congratulations on your pregnancy! I have a 6 month old and was pregnant with POTS, so if you have any questions you are welcome to PM me. I live in Ireland and doctors are not very knowledgeable in POTS area here as either. I've resisted SSRI's for a long time, but it lookd that they are helping somewhat. I'm still feeling lightheaded and fatigued, but I'm just starting on the meds and haven't increased to the required dose, so we'll see how that will go. I just wish that we didn't have to waste our time searching for answers, POTS takes enough of energy from us to begin with. But reality is different.

Hello. I know that some of you have a deeper understanding in this complex illness. I have started Lexapro almost a week ago and my heart rate has dropped down a lot, in fact I don't have 30bpm increase going from supine to standing or standing for a prolonged time. Does that mean that I don't have POTS? Is it just anxiety? I'm quite confused. Thank you.

Thank you guys for your support and replys. I'm feeling better today, so I guess it will take some time for my body to get used to it, as most of you say. I'm taking it at night, this is what my doctor recommended and in the morning I'm feeling more anxious than usual, but then everything settles down and I'm feeling a lot calmer. So I guess I'll give it some time and see, if this med is for me. Thanks once more for all your input.

Hi. I've started Lexapro last night only 5mg, but didn't sleep very well and this morning I'm feeling very anxious, lightheaded, have diarrhea, headache and dry mouth. I wasn't expecting this on such a low dose. Never tried SSRI, but after a long discussion with my GP, he convinced me to try it. Is it normal to feel like this on a first day and such a low dose of Lexapro. Thank you.

Hi. It's good to know that someone got better. Would you happen to know for how long he has had POTS? Is he still taking all the meds?

It was an accessory pathway. I was told that I most likely had it from birth, but it's very strange, because until 3 years ago, I never had an indication that it existed. No extra beats, palpitations or tachycardia. My resting ECG's were always normal, but when I went into SVT's they could see something on them, and told me from the very first time it happened that it's probably an extra pathway. It was very scary every time it happened and I hated the feeling of the drugs administered to stop my heart from pounding. A few weeks ago I had more than a few extra beats and totally freaked out. I though that the same **** was going to start again. I started beta blockers the very next day. I think that the only way to know, if you have an extra pathway is to have an EP study done.

Hi. I had an ablation done two years ago. I had it for a different reason, so I don't really know, if my post will be helpful to you. I used to suffer from SVT's. My heart would start raising out of nowhere to upto 170bpm and I had to go to ER to stop those episodes. I was terrified to have an ablation done, because I've read that for some it doesn't work or might make POTS symptoms worse. I asked my EP to stay away from my sinus node. It might not be possible in your case, because I think that sinus node has to be partially ablated in IST to stop it. I might be wrong though. From everything I've read ablation might make POTS patients worse, because if sinus node is ablated patients might start fainting, because the compensatory mechanism isn't working anymore. Calcium blockers did nothing for my heart rate as well and I've started taking a tiny dose of bisoprolol again, because I was tired of fast standing heart rate. My standing HR without beta blockers is around 120bpm and with a dose of 1.25mg it's around 90bpm. The only downside is that I'm feeling more tired even with this small dose. Is you EP familiar with POTS, did he/she have any POTS patients before? I have to tell you I was freaked out to have an ablation done, but so far it's been worth it and I would do it again. I had no effect on my POTS symptoms, even though I was hoping that it might be the solution for two things.

Hi Issie, This sounds amazing! It's so exciting that you've found a doctor, who actually listens and is able to think outside the box. I was just wondering, were you diagnosed with Lyme disease? I had a rash about 5 years ago, which looked similar to Lyme rash, but at the time I knew nothing about that and a few months after all of my health problems had started. I recently had a test for Lyme disease, which was negative, but from everything I've read, if it's in a chronic stage only Lyme literate doctor would be able to diagnose it correctly. My test was done by my GP. Do you think you'll need antibiotics later on or are you choosing a more natural route? Would you mind saying which herbs are you using?

Thank you issie and corina for your help. I've actually contacted Lette a while ago and she told me the name of the specialist that she's seeing. I asked my GP to refer me to him, but the waiting time is 18months! Until then I need to do something to get relief from some of my symptoms. abbyw, thank you for your input. What kind of side effects have you experienced when you switched to Effexor? Has it increased your heart rate? I don't faint and am able to do some stuff at home, like light cleaning, cooking and taking care of my lil one, which sometimes I find exhausting, but healthy moms report feeling exhausting with new babies, so I don't expect to be full of energy. My main symptoms that are driving me nuts is brain fog, fatigue and feeling lightheaded, sometimes I'm feeling tachy while standing, but not always. I am not sure, if these kind of symptoms are worthy to start messing with SNRI or SSRI meds. yogini, you are so right that I should stay away from reading all the stuff on the internet, but I just can't help it I was prescribed a very small dose for the first week, so maybe I should stop freaking out. My GP didn't mention for some reason that Effexor is one of the most addictive SNRI's out there, and I definitely don't want to be on something for good. yogini and corina, I see that you are on Paxil. Are you experiencing any side effects from it? Thanks everyone for your input.

corina, I don't want to ask my doctor to go look for information about POTS. I'm the only patient he has or probably will ever have with this disorder and I don't think he'd want to "waste" his time on educating himself about it. My philosophy is, if a doctor is really willing to help you, you won't have to ask him/her educate himself/herself about any disease, they'd do that by themselves.

Thank you for your answers. jangle I would love to find another doctor, but there are not many to choose from. In fact he was the only one, who took me seriously enough and agreed to test for lyme disease and refer to me to have an MRI done. He told me that, if those test would be normal ( which he believed upfront that they would) I will have to trust him and try what he'll suggest. I agreed, but now I am feeling super anxious and can't force myself to take even one pill of Effexor. Am I being ridiculous? I'm feeling quite bad enough and am scared that this medicine will make me feel even worse. On the other hand, sometimes I see others being anxious to try florinef, which for me had no side effects what so ever, but didn't help much either.

Hello everyone, I need your advice. It's been 5 years since POTS symptoms started. My GP thinks that I have anxiety and depression. I don't feel depressed, but he thinks otherwise. The only reason I have anxiety, because I can't find a specialist, who could effectively treat this disorder. I live in Ireland and I haven't found a doctor, who knows much about POTS. I had been tested for lyme disease, which was negative,MRI of my head and neck, nothing significant there either. My GP prescribed me effexor ( venlafaxine), but after reading reviews from people who tried it, I'm absolutely terrified to even try it. He told me that I might experience nausea, shakiness, sweating and even tachycardia ( which I already have!), but if I could stick with this med all those negative side effects would go away and I would feel better. Could anyone tell which anti anxiety medication worked best for them. Should I ask for SSRI instead of SNRI? I have a 3 month old at home and don't want to try messing with these kind of meds and want to find the one with the least possible side effects. Thank you.

I would definitely join you guys, but I have only a few days left till my due date and am worried that with a new baby I won't be able to do it consistently everyday. I will try it on my own though and will be delighted to keep an eye on your progress, if you'll update it publicly. I was wondering though, is there any difference when one does tilt training, because for me evenings are much easier, but maybe I wouldn't progress as much then, if you know what I mean. Can I still wear compression socks while doing this.

Hi Alaska. That's very interesting. My doctor told me to do this kind of training as well, but I didn't take it seriously enough. I did it for maybe a week or so, but he told me to start slow and increase the time by one minute every other day. I didn't see any improvement in my symptoms and so I don't do it anymore. I've raised the head of my bead about 9 months ago and so far saw no improvement in my POTS symptoms. Do you also have typical 30bpm increase in your heart rate when you stand up, or do you just have hypotension?

This is exactly how my legs look like, if I've been standing for a minimum amount of time and especially after the shower. My GP told me " Oh, it's nothing, it's normal especially having in mind that you are so tall. It's the problem with most tall women". First of all I'm 5'9". I don't think I'm that tall. Second I never had this issue before, now I don't wear skirts or shorts, because my legs look disgusting to me. Third I became somewhat obsessed observing how legs look of other "tall" women. So far I've seen only one lady, who had similar looking legs, and she was heavily pregnant, but other than that all other women that I've seen have nice even tone on their legs, so it's definitely not normal.

This is the kind of news I check this forum for everyday! This is really great!!! I'm from Ireland as well, and having a hard time finding knowledgeable doctors, who could help to deal with this syndrome. Have you been on any type of medication prior to recovery and how long did your POTS last for? Do you know, what was the cause for your POTS? What do you have in mind saying healthy living - special diet, exercise, etc.? Sorry for all these questions, but recovery is something that we are desperately longing for Would love to get more details, if you don't mind sharing.

Thank you Naomi for the information. I will discuss anesthesia with my OB/GYN and will mention phenylephrine. I think he'll think I'm mad :D I've noticed that doctors don't like patients, who are trying to be proactive doing research and all that stuff. My GP to this day thinks that all I have is anxiety although I was officially diagnosed. The way she explained blood pooling was " oh this is a problem for most tall women" Naomi do you know, if phenylephrine was used in your situation? Frugalmama thank you for chiming in I don't want to take meds either, I'll just try to suck it up, because it's only a month ( or maybe less) left. How was your experience with epidural. Any problems with your hr or bp? I'm not sure, if they'll give me IV fluids, because my bp in stressful situations ( going to doctors always is stressful for me) is not very low. Last time at my antenatal check up it was 127/75. So it's considered perfect. I guess I'll just have to trust them. You're right MomtoGuliana overall I'm not doing bad at all. I'm not bed bound, I don't faint and I'm extremely grateful for that. One more question. Has pain significantly increased your heart rates during delivery? I've read that during contractions women experience increased heart rate.

Thank you so much Naomi and MomtoGiuliana for sharing your experience. I don't have POTS doctor or any doctor, who understands what POTS is and they are too lazy to do any research. My OB/GYN thinks that everything is normal, my blood pressure is low, I don't have any swelling and no protein in the urine and that's the end of the story, my pregnancy is considered normal. I don't think they even measured my heart rate at the clinic. I am concerned about my delivery, I don't know which route should I take, should I opt for the natural delivery, epidural or C section. I'm feeling frustrated and sad, because of the lack of understanding from the medical community. I just hope that there won't be any negative outcome, and they'll know how to handle the situation, if something goes wrong. I guess I can be sure about one thing, that my POTS is not caused by low blood volume, because if it was, then during pregnancy I would have felt normal.

Hello everyone, I was wondering has anyone experienced elevated standing heart rate during the last pregnancy month and got better after delivery? I'm 36 weeks pregnant, second trimester was wonderful, but now my standing heart rate goes up to 140bpm and feels very uncomfortable. Doctors don't know anything about POTS here and are treating my pregnancy as normal. Before pregnancy my standing heart rate was about 120bpm. From everything that I've read blood volume is increased during pregnancy, so I should get a relief from POTS symptoms, shouldn't I? I don't know what I should do, should I ask to be put on beta-blockers, or should I just hang in there and wait until the delivery? Elevated standing heart rate is the only POTS symptom I'm having at the moment. Would love to hear what other moms think.

Hi katT. I don't know what's right or wrong, I can only share my experience. I'm currently pregnant with my first child, 7 months at the moment. I was thinking really hard about this as well and couldn't decide where I should do it, because I was scared that pregnancy might make my POTS symptoms worse. I wasn't taking any medication prior to become pregnant, although I did take beta blockers and florinef at one point. I wasn't bed bound, but couldn't work, so, if you can handle a Full time job I think you are in a better position than I was. All I did and still am was exercise as much as I can, drink water and use salt. First two trimesters were great, I had almost no morning sickness and the second trimester was just a breeze. I wasn't as tachy and had energy, lots of it! At one point I was even thinking that maybe that's it, maybe I'm out of that terrible POTS hole. It's getting a bit tough now, when the baby is growing bigger. I'm feeling more lightheaded, but no fainting and I'm more tachy and out of breath. So far no stretch marks either, hoorayyy for that Even though I was diagnosed, here in Ireland, doctors either don't know much about POTS or they just don't take it as serious as in the US. My pregnancy is treated as normal, I don't get any special attention, and I was told that I will be able to deliver my baby naturally, if everything goes normal in the future. I asked, if tachycardia is something that I should be worried about and if it's safe to do it naturally in my case, my doctor didn't seem concerned at all. So, in my opinion, if you have a good OBGYN, who is willing to help you by educating herself, you are very lucky. I have no idea, how I will be feeling during labor or after it, but nobody knows, even healthy woman sometimes get sick or even worse. All I know is that this is something that I really wanted, feel blessed that I could get pregnant ( took quiet a bit of time) and I am just taking one day at the time and hoping for the best. So far pregnancy hasn't made my POTS worse.

Could someone please explain, what is the point of testing, if it's autoimmune POTS or not. Is there some kind of treatment that's different from regular florinef, salt, midodrine, if it's autoimmune? Thanks.