shannon

Thanks, badhbd!! Glad you have had a good pregnancy! I hope your delivery goes super well too! Do you mind me asking if you've been on any POTS meds while pregnant?

Hi everyone, It has been a long time since I posted here, but I am looking for your thoughts on this. I am planning to start trying to get pregnant in about a year (for the first time). I would like to start planning ahead in regards to my POTS treatment and management, but I know that my local doctors are very uneducated about POTS and I actually don't trust that the advice they give me will even be founded in research and evidence. I am trying to self-educate as much as possible. A little background: I am 29 years old (As of yesterday!). I was diagnosed with POTS at age 17; symptoms were there throughout childhood and worsened at age 13, staying consistent until about age 22 or so. I take Mestinon everyday and Inderal everyday, and my symptoms are very well managed right now. I work full time, I have started running, and I live a very normal life. I still need to maintain a strict eating and sleeping schedule or my POTS flares up (but can get back under control again within a few hours usually). I also still tire more easily when up on my feet, but I manage MUCH better than I used to. Mestinon has not been researched in connection with pregnancy, so I would like to get off of it (which is kind of terrifying!!). I am not sure, but I believe inderal will probably be okay to stay on (though I worry that it will make my BP too low without the Mestinon counter-acting that effect). My goal is to have a natural birth if possible, using breathing techniques. I have been searching for research on POTS and pregnancy, and it seems to be limited. Does anyone have good resources on this? Has anyone had a positive pregnancy/birthing experience while having POTS? Are there any specific risks that you know of that I should discuss with my doctor in advance? I am planning to have a midwife as my primary provider throughout the pregnancy and labor, but I will also see a doctor for managing the POTS aspect. Thanks in advance! -Shannon

Racer, Glad that things are looking up a bit for you since the weather warmed up. I also just want to share this resource - a 24-hr hotline that anyone can call if they are in an emotional crisis and/or feeling suicidal. 1-800-273-TALK(8255). Sometimes it's nice to be able to talk to someone. Also remember that we are always here for you on this forum! We've all had our ups and downs and are here to hold each other up. You are not alone! Take care

So sorry to hear that your boyfriend's mom responded that way. It hurts when people make assumptions about what you can or can't do, or place value judgements on you like that. I'm glad your boyfriend is more supportive! It sounds like the two of you have a good thing.

I have similar problems, and it is definitely frustrating. I am not a big partier anyways, but sometimes it feels like people feel I am just being a prude. there is such an expectation to drink if other people are drinking, and they don't understand the effects on my body. I have found myself having one drink just to fit in even when it makes me sick. i know that is not wise!!

Hello, I am so sorry to hear that things are tough for you right now. When I look back, I can remember feeling so hopeless, so frustrated, and so tired of being sick. The notion that things could get better seemed unrealistic back then. But things have truly improved for me. I was diagnosed with POTS almost 10 years ago. At the time, I weighed less than 90 pounds, and every day was a battle. After I was diagnosed, I tried multiple treatments before I finally responded well. It took some time, but now I live a very normal life. I work full time, and I even have energy to volunteer outside of work for various programs. I still have POTS, and I still need to be careful about keeping a regular sleep schedule, eating on time, not standing for too long, etc, but these adjustments have become so much part of my life that I barely think of it on an average day. I know there are others who have not shared my experience and I will never understand why some of us get healthier and others don't. It's not fair. But in response to your post, I wanted to share my own story of recovery. I have even grown to have a love/hate relationship with POTS. When I think of all I went through, of course part of me wishes that I had never gotten sick. But at the same time, now that I am healthier, I know that POTS changed me for the better in some ways. I am a more compassionate person. Now, anytime friends or family share about health problems they are having, I know that I can be one of the few who does not respond with discomfort, but instead genuine care and interest. And that is a gift. That is maybe the tiny gift in all of this. I have hope that things get better for you. Take care! -Shannon

Thanks for your feedback. I saw my doctor last week and am taking 2 prilosec per day for the next 2 months, then going in to see if I need a scope or more diagnostic tests. After reading some of your feedback, I will try my best to assert myself and educate the doctor about POTS. Ahhhh, I just wish doctors didn't see symptoms in such isolated ways. It seems like the only time they think they have to consider POTS is when I'm having issues with HR/BP, which is completely ignorant. Thanks for your thoughts, though! It helps.

Just wondering if any of you have had issues with acid reflux??? I've been having issues off and on with tightness in my throat, nausea (but different kind of nausea from my usual), an acid-like taste in my mouth, and some chest discomfort. It seems like acid reflux because when I go on Prilosec for a couple weeks, it goes away, but then seems to come back awhile later. When ever I have new symptoms, it's confusing to figure out whether its POTS-related or something else. Has anyone had these issues? I haven't seen a doctor yet, but if I do end up going in, I know I will see someone who doesn't know what POTS is and probably won't investigate whether it could be related.

1. With POTS, do you think you will be able to do a long hike without making your symptoms worse? Nope. 2. With POTS, does Xanax-type medication make your symptoms get a lot better or even go away? No. 3. With POTS, is it possible to work out 1-2 hours a day and feel fine during the workout? Does cardio or weights make you worse? Cardio and weights make me worse. I think I am healthy enough that I could find a workout plan that works (I just haven't done this yet) ... my doctor has recommended swimming. However, I'm not sure if I could handle a full hour of that even. 4. With POTS, on days where you feel bad even when sitting or lying down, does standing up and walking around make it even worse? Yes. My best position when I'm really sick is laying on my back with my legs propped really high up on pillows. 5. With POTS, do stressful events or situations make your symptoms worse? Sometimes.

Just wanted to share my experience with Mestinon. I have been on it for about 4 years now. I take 180mg timespan each morning. I had some side effects early on (mostly digestive), but now I honestly don't have any, and my POTS is better than ever. This med definitely was the answer to my problems!!! I know everyone is different, but I hope it ends up working out for you too. Best of luck!!

Welcome! I hope you find the answers you are looking for with your doctor's help. The forum is here for you anytime you need support!

Interesting. I get the eyelid lag thing a lot (I'm having it right now), and it does seem to correlate with other POTS symptoms, although I don't think I ever made the connection until now. I also get the extreme thirst sometimes. And the sensitivity to crowds/brightness is big for me. Just sitting in a crowded mall makes me feel sick even though I used to love shopping and crowds and I'm outgoing. I think this is a common symptom for POTS people. Thanks for posting this. Interesting!

Janey, I am so glad you found the forum. I remember what a relief it was for me to know that other people out there understood my symptoms. All of us are different, but in my case I have seen unbelievable improvement in my functioning. At the time of my diagnosis, I had pretty much lost all hope of ever feeling better .... my symptoms were very unpredictable. One day I could go to school, and the next I would be unable to get out of bed, would be out of breath, chest pain, vomiting, ears ringing, cold sweats, just totally miserable. It has now been 7 years since I was first diagnosed, and while I still deal with POTS everyday in some capacity, I am definitely able to hold a full time job and function quite normally. In addition to my medications, I have to be very routined and scheduled with my sleep, eating, etc. If I don't drink juice in the morning, for instance, I will get sick. But the good news is that I bounce back much more quickly than I used to. On the average day, I feel pretty healthy. It took awhile to find the medication that worked, but hopefully your doctor will find one faster. We're all here for you anytime. Feel free to message me anytime you feel like venting. This is not an easy thing to go through, but I am glad you are finding support. Best of luck!

Yes, I take it for migraines, but I am also on Mestinon which helps to offset the Propranonal's side effect of decreasing BP. I started at 10 mg 3 times per day, and then moved up to 80 each morning. I tried 120, but could not tolerate it (my BP dropped to 52/25 !!). As far as POTS, it is not a good med for me, but everyone's different. It does, however help my migraines some. Best of luck! You are working with a good doc

Good for you, Rachel!! Way to raise awareness. Best of luck on the speech. Shannon

Any word on when the POTS documentary will be available to order / view? Shannon

I'm so sorry that happened to you. I will never understand what causes people to be so suspicious of chronic illness!! I also have people in my life who have said similar things. I don't think there is a way make the emotional pain from that completely go away, but there are ways of lessening the blow. I try to use positive affirmations in situations like that. I think I used to be in a rut where if someone told me I was "blowing it out of proportion" I would feel guilty and think that I should be able to put up with more. Now, I reframe that thought in my head and say to myself: "NO, I have a legitimate illness. That does not make me lazy or selfish. This is my reality. When my body tells me to slow down, I am not going to force myself to be miserable at work all day because I deserve better than that. If people choose not to believe me, that is there problem, and I refuse to listen to them." So basically, I talk to myself to deal with some of this stuff. It helps me, though! Of course, this doesn't mean you should have to put up with such insults at work. I also think that talking to HR is a good idea, like others mentioned. Best of luck, and I hope things get better for you. -Shannon

Things I Wish I'd Known When I First Got Sick - Doctors don't know everything. - If people choose not to believe me, that is their problem. This is my reality, and I know my symptoms are real. - It is okay to listen to my body and give myself a break when I need to. - I am not lazy. I am not blowing this out of proportion. - I do not need to be the "disability hero" who never asks why me, who never complains, who just keeps trucking. Sometimes I need to be angry. Sometimes I need to complain. Sometimes I even need to cry. And that is okay. That does not make me weak or selfish. It makes me human. - This illness will impact my life and shape me in many ways, but it will never define who I am. I am not POTS, I am Shannon. Now add your own to the list, folks!

Thanks for the feed back. No, I'm not in Sinus rythm. Laying down always relieves the symptoms to some extent, but does not necessarily make them go away. My BP can stay very low even after i've laid down for awhile (i'm sure you can relate). thanks!

Hey guys -- I have asked this question of my doctor, but never seem to get a clear response. Very frustrated! How low is TOO low (as in, need to go in to ER or something...) for blood pressure? I have been getting as low as high 60's / 30s. In your experience, have you come across any information about this? Shannon

I've been on it for about 4 years, and it has changed my life immensely! My POTS has improved so much. I have small daily symptoms but nothing horrible. The only time that I still get super sick is during my period, and my doctor does not seem at all interested in changing that...

I have noticed this correlation as well, but have never asked my doctor about it, probably because i was embarrassed. Luckily, my POTS symptoms have improved greatly with treatment over the past couple of years, but I still often feel pooling to my legs, warm, and nauseas after a bowel movement. interesting!

A second opinion might be worth something. Yes, the ovaries continue to produce important hormones, and loosing these may place women at greater risk for breast cancer. Doctors are eager to do these surgeries, but as all of us on this forum know, doctors can be wrong. Best of luck though!

Hi! I just returned from my 5th trip to Mayo Clinic. I am very lucky that my treatment plan has worked amazingly well (for the most part!). However, I do still have some daily symptoms which become much much MUCH worse during my period. I tried to talk with my doctor about what we can do to lessen the POTS symptoms during menstruation, and he was completely dismissive and invalidating. He tried to walk out of the room a few times, and I had to interupt him and keep pushing. In the end, he was only interested in me as a research participant and didn't care about my case once he had his numbers and data from me. It made me feel very used. I gave him the data he needs to get published, and he left me with nothing in terms of improving my health. Anywho, I am just wondering what all of you (women) do to alleviate the worsening symptoms during your period. Any tips? I can't go on the pill because it causes severe migraines for me. -Shannon

Hey there! A friend of mine who works at the local hospital told me that she has met other POTS patients, but obviously she cannot disclose any other information. I was very excited to hear that there are other POTS people in my town, though, and I am wondering if any of them are on this website. Anyone live in or near Fargo-Moorhead? -Shannon