sonshine456

i have this too. my lovely docs told me i was overly aware of my heart beating. That's not what it is. I haven't found anything to help...I'd also love to hear if anyone has.

anyone see Mystery Diagnosis last night? I didn't catch the very beginning of it but it was talking about a girl having all these weird symptoms and the docs thought she had POTS. Of course our phone rang at this point of the show so i didn't catch all they said about it but it looked like they did talk about it and explain what it was anyway. In the end she had chiari and another thing wrong with her skull/spine. Did anybody watch this? I'm curious to know what exactly they said about POTS.

i've also tried a calcium channel blocker. it didn't work for me. I was just interested to see what other people's experiences were with these antiarrythmia meds since they've had such a bad effect on my POTS symptoms. thanks for the responses

i've been on flecainide and rythmol (not at the same time)

those of you with pots and other arrythmia's (i also have SVT)...how does your POTS do with the antiarrythmia meds? My POTS keeps getting way worse when I'm trying these other meds...otherwise it's been under pretty good control. When i stop the meds my pots symptoms eventually get back to "normal". I'd like to hear other people's experience with this.

well it's definitely not menopausal...i'm 26. i sure hope not anyway :-) i had my ablation almost a year ago.

I did wear a 30 day monitor and and the dr said it looked like SVT. i don't get this tachy when changing position at all like i have in the past with POTS. This just comes out of no where. i did have 2 areas that the doc saw with my first ablation but he didn't chase after one of them so he's thinking it might be that one causing the problems now. goldicedance...what's junctional tachycardia and how did the drs determine that's what it was?

I know this is a topic that has been discussed a few times on the board. I would just like to get people's opinions or shared knowledge on this. I had svt that was causing problems every single day. I had an ablation and it did get fixed. after the ablation i started having major problems with pots...probably had pots before the ablation cuz I have a sibling who also has it. I eventually went to mayo cuz none of the meds were working and mayo started me on mestinon and the POTS has been extremely well controlled now. I recently wore a monitor because I was having a new feeling tachy and was able to catch it on the monitor and doc says he thinks it's SVT and does not think it's related to POTS(I don't think it is either). I get these episodes when I'm just sitting or standing or i guess laying down for that matter and i get a hard thump in my chest, then it goes racing (into the 200's) and usually within a min and I get another hard thump and I go back into normal rhythm. dr said options were medication or another ep study. i'm starting the med right now but don't know if it will work...didn't work before when i've been on it. I had a doozy of day the other day when i just had episode after episode and was exhausted by the end of the day and my body will be messed up now for the next week at least. so after that i'm thinking i'm going to do the ablation. I am very concerned about the POTS getting worse. even though i'm dealing with this pots thing now I don't regret for a second doing the first ablation. Are ablations still a problem if the area of tachy is not related to pots? Since my body isn't naturally compensating for the low blood pressure without the mestinon would the ablation really make things any worse since my body already doesn't have that capability? Since being on the mestinon I very rarely have pots symptoms...this tachy that I'm getting is definitely different than the pots tachy i would get. I would love to hear what any of you have to say about all this or what your docs have said. My doc doesn't think it will be a problem and he is a wonderful dr but everything i've read says that pots and ablations don't mix well.

this makes me so mad. I was told my problem was anxiety for a good 3 years...a little over. Then I went to see a cardiologist who ended up doing an Electrophysiology study and then an ablation and came out of there saying "we were able to set off the tachy so easily you must have been dealing with this everyday" UH, YEAH. and then after the ablation came the POTS stuff. I'm also a very calm, laid back person and dr's thinking that anxiety was what was causing my stuff is what caused me the most anxiety...not the illness. In trying to figure out what was wrong with me I got the point where I knew that I wasn't going to die from this and it wasn't doing damage to my heart. At that point I was able to explain to dr's why I wasn't having anxiety about the stuff. I just told them that when I get the weird stuff going on with my body I know it's not going to kill or hurt or me (plus i had been dealing with it for 3 years..i did my freaking out the first year I didn't know what was going on) and that I could handle the not feeling good part as long as I knew we were moving forward in trying new things and looking at new things. I think it would be a very good idea to go to your primary and talk to her about your concerns and frustrations. it's hard cuz you don't want to look like you're trying to hard to prove anything but on the the other hand...you know your body and you've gotta be straight forward and make sure they are hearing you. If this dr isn't hearing you...change dr's. I've "fired" a few when it's been clear they're not listening to me and have made their mind up before even seeing me. I think if dr's can't pin point what's going on right away...it's anxiety. I feel your frustration (obviously :-) )

Take a look at this article....fourth paragraph down under SYMPTOMS. http://home.att.net/~potsweb/POTS.html

i've been on it for almost 6 months now. i've tried a lot of the other meds and none of them have helped me like the mestinon has. mayo clinic prescribed it for me. I've had to do a lot of playing around with the dose. I had a week where I felt COMPLETELY normal and then for some reason i kind of went backwards again and havent had that really really good feeling again but I'm definitely way better than i was. I dealt with nausea every day all day and that's pretty much gone. i was having major trouble with my walking and that's improved big time. I don't feel like passing out nearly as often. i still have that yucky feeling at some point of the day everyday and go through weekly bouts where things just aren't right but at least some things have gotten better. I wouldn't be afraid to try it. The only side effects i had were muscle twitches which have gotten better with time. Just gotta make sure you eat when you take the pills.

I'm curious what exactly happens with everyone else's legs when this happens. What do you feel, what do your legs do?

I've had this happen to me also. Just told it was from extreme weakness due to the tachy. It comes and goes for me

thank you!

I'm sure there's someplace else to direct this question but i don't know where it is. I'm trying to get in touch with jane benett from the meet others thing but the email address doesn't work and the "contact us" email doesn't work either. Any suggestions?

well what happened with me is that my appointments were soooo scattered over a period of 2 weeks and I was able to get them all in within a 4 day span. That's what i meant by being able to get appointments moved up or get in earlier than what they have you set up for. There won't be any problems with your scheduled appointments...just saying it's possible to get stuff done quicker than what they have laid out for you. Sorry about any confusion there. And I absolutely agree not to skimp on the accomodations. At first we went to a cheaper hotel thinking it didn't really matter cuz we'd barely be there....we moved after the first night and we were so glad we did. You definitely need a nice place to relax at the end of the day. I walked into mayo the first day and refused a wheelchair from the front door man as my husband was trying to get me to take one. It took me maybe 5 minutes before I ended up in one. There's a lot of walking to get to the different places...especially if you're going back and forth trying to get in early somewhere. The front door man gave me a hard time when he saw me at the end of the day in the wheelchair :-) I lost that battle. We stayed at 6th ave hotel and suites. Nice and clean, good price, and they did have a shuttle service.

Kathy, I'm curious what your dr's told you about being on a beta blocker when you have asthma. My docs don't even want to consider it with me because of my asthma. They've wanted me to be able to try it so badly but decided it wasn't worth the risk. I'm on a med that seems to helping some right now but I was just curious about what your experience had/has been with the beta blocker.

I had a sleep study done. I'm always so tired. It came back okay so I guess it's just the POTS. When I went to Mayo the doc said that fatigue is the number one complaint they get from POTS patients. Makes me feel better knowing that. I know I'm not just lazy.

You should get an itinerary for where and when you're going to certain dr's or tests etc. I didn't get one until I actually got there though. Things I learned from going there....you can almost always get into an appt. earlier than what they have you scheduled. You just have to go up to the desk and ask. When they tell you you can wait to see if an appointment opens up check with them to see how many other people are already waiting for an appointment to open up. We learned this after sitting for hours only to find out that we were number 5 on list of 6 and all of us were waiting for an appointment to become available. If you're one of the first few on the list than it's worth waiting otherwise don't waste your time. And if the front desk people tell you what times you can come back to see if you can get in..they always told us about a 4 hour time frame...get there about 15 minutes to half hour before the time they suggest. I personally didn't feel that they were very efficient there but the dr's were very good. Good luck!!

thank you all for your responses. i personally am at a point right now where it would be really difficult to go in to a workplace and be a "normal" employee. There's days when I can barely walk and have to lay down flat numerous times so I don't pass out. That's not something you can just work through which brings us to the big question of who the heck would even hire someone like me and if there are people who would...what kind of job could a person like me do? It would be wonderful if something could become clear to me....sooner than later. I really do appreciate all of you who have responded. thank you

this is nice to read...i get these weird feelings also but would be afraid to say anything to my doc cuz I've had to prove so many times that my symptoms are not anxiety. I get the same feeling often when i'm driving. It's hard to focus. Don't worry...I haven't been driving for quite some time now cuz my POTS hasn't been under control. Do others have the same thing with driving?

I have the same problem. I was diagnosed with asthma when I was younger but haven't had an "attack" for quite some time. I'm on advair and singulair. I still have problems with my breathing. Since I started having problems with POTS I've been asking my docs if they think it's the asthma or the heart. They always tell me they can't answer that. I get the same thing that others are talking about which is feeling that I can't get a deep breath and my breathing just feels more shallow than it should yet i know i'm getting enough air. I personally think that most of the breathing issues I have now are from POTS. When I did the tilt table test I got the same yucky breathing feeling before I passed out. my peak flow at it's best was around 550. when i take it now it's usually in the 400's. I also never wheeze but i never have even when my asthma was really bad when i was younger. I wish there was some way to test to figure out which is actually causing the problems. It's certainly not good to use a rescue inhalor if it's actually a POTS symptom.

I am coming to terms with the fact that I am going to have to change the course of my life. I'm in my 20's and have come to the realization after years of dealing with POTS that I'm not going to be able to move forward with my intended goals for graduate school because I won't have the stamina. I have decided on a different profession that I can move forward with by taking classes online...I don't know if I'll be able to handle that profession down the road either but it's more of a possibility than the other profession I had intended on going to school for. So I have a plan for that. I've been putting off moving forward with either school or work because I've been thinking that I will start feeling better and i'd be able to do what i wanted. SO I'm at the point now that knowing I'm not going to be able to do what I had initially intended to do with school I need to get a job while I do the online courses. I'm curious to know what other people with POTS do for jobs. The only thing I can think of that would work for me personally would be to work from home so i can lay down now and then. Medical transcription is the only work from home job that i know of that's legit. I would just like to know what others do for jobs because I'm having a hard time figuring out what in the world I would i would be able do. I'm tired of waiting for things to get better so i can move forward with my life. I need to do something now. Thank you for any responses