bttrflyamby1981

That is a very good point, thanks for your insight.

Sometimes I do in fact want to give up, but I feel so awful that just isn't an option. I brushed it off the first year thinking whatever it was would just go away. Then I lost my insurance when I finally found a Dr. who found possible answers. Now I'm going in reverse. But I'm sure many if not all of you have been there too. There is just something about the POTS that has me set on this being the diagnoses. It just makes sense. I was so lost and confused and the Dr mentioned POTS so I looked it up and everything just seemed to fit. I have questioned myself though, many times. But then things will happen that make me think....it's GOT to be POTS. If this next appointment doesn't go well or FEELS worthless (like most of my appointments have felt) then that's ok. I have another office lined up to have a consultation with another EP. I have come to a point that I NEED a diagnoses just to be proved sane! But I won't take just any diagnoses.... When they said I had SVT I thought ok, but there is more going on. I feel I will know in my heart when I have the right diagnoses. Things will make sense, and my questions will be answered. Thanks for your concern, I'll get over this hill eventually. Amby

thanks guys!!

Hi I just started Florinef 3 weeks ago, I did get major head pressure/migraines for the first 2 weeks. They have gone now and I feel better. I'm on Toprol XL and Florinef and this is the best I have felt since I got sick. (Not that anyone knows what's wrong) I agree that everyone is different, you just have to find what's good for YOU.

Thanks for your replies. I have an appointment with the EP Feb 6th. I call in the morning to see if they want me in earlier then this. I already have another office lined up if things don't go well. Something I was trying to avoid, but if they keep telling me they don't know what's wrong, then I need to move on. Thanks again, Amber

Hi there, I had a Diagnoses of SVT in December after wearing a 30 day holter monitor. I was also put on Florinef to help control my blood pressure but it was giving me bad side affects. Mainly major head pressure which triggered my migraines.They also increased the Toprol XL to 50 mg. I pushed to get in to see the Dr cause I felt so bad. So they set an appointment with a different Dr (kidney specialist) I have a TEAM of Dr's and this is one of them. Anyway, my appointment was Friday. I left very upset. He told me that I didn't have SVT and that my blood pressure was normal 88/65 normal? Anyway he told me to tapper off the Florinef and I started too, but the side affects seem to have passed so I'm going to stay on it until I see the EP specialist. Again they are trying to say anxiety when I feel that this illness is giving me the anxiety, not the other way around. The kidney guy said that there wasn't anything else they can do, no more tests to run. He said sorry and that they just didn't know what was wrong. The Cardio said I didn't have POTS because of the one TTT that came back normal. (almost 2 years ago) So I guess I'm at the bottom of the roller coaster climbing to the top looking for the answers. I don't know if the EP can help or not? He was one who said he thought I had POTS even with the normal TTT. We'll see what happens I suppose. Just wanted to stop by... sending my best.

Yes, I've had 3 holter monitors. I don't have the results from the last one however? I guess they forgot to copy it with the rest of the stuff I asked for? I didn't even realize it until just now. I just got done with the 30 day event monitor a couple of weeks ago. I think my best bet is to find a dr who is more familiar in this area. The doc I have now ref me to the EP specialist for further care, but I went back to him because of a communication problem with the EP. At this point though I think I would rather deal with the communication barrier. I told the NP at the last visit that it was fine that I don't have POTS but I felt that I had something similar. She agrees more is going on but then she said she wanted to do the anxiety med. [shrugs shoulders] The EP that I had been ref to put me on Midodrine and said that later if need be he would put me on Florinef to raise my BP. I didn't give the Midodrine even 24 hours though, so I'm wondering if I would have given it more of a chance then I wouldn't be having issues right now. It made me feel very wired and it scared me so I was afraid to take the second dose. The Toprol also has side affects though but passes after awhile, so I was thinking the Midodrine WAS the way to go? Thanks for all of your opinions...you ALL have been a big help.

I had been on Propranolol before the test....they stopped it because it was causing me to have low BP. I don't recall if this is when they put me on Toprol Xl at the time? My Nero was changing my meds trying to treat my migraines. The Cardio took me off of them because they were messing with my BP. So to answer the question if I was on meds at the time of the test, I don't know. It was a roller coaster time with meds. I know they took me off meds before a test but I don't remember what one it was for. It very well could have been for the Tilt. These doc's that I have don't answer my questions with straight answers....I have asked about CFS and wasn't answered. But I asked about POTS at the same time. That's when the NP said that the doc said no I didn't have POTS because my tilt was neg. I'm just confused because he had ref me to a EP and this doc, even though I had a neg tilt was "treating" me for POTS. BTW most if not ALL my symptoms are when I'm standing. I'm fine sitting....unless I'm having a "bad' day.

That is so great to hear!! I'm sure over time you will become more accustomed to speaking in front of the class. More so because it will be all the same faces. Wishing you the best and that any anxiety is minimal!

That probably would be helpful.....thanks for the thought.

I too am more symptomatic around this time.

I have a problem with noise, heat, being crowded and so on. Being on meds helps a little but not completely.

Oh ouch! I'm soooo sorry.....wish I could help.

I have no idea what I FEEL anymore. I don't even know if I think it's POTS anymore. I just know that I'm worse when I stand up. I'm symptomatic if I'm standing period..all the time. I'm usually fine sitting. Of course sometimes I do feel a little icky even when sitting. I have felt like just giving up and letting them do whatever. Thanks for answering my post

I'm so sorry.....I understand. But that's the problem, unless they "know" how it feels they won't understand. And even then they still may not understand because most people who have experienced a bit of this because of the flu or whatever, get better and "forget" how it feels. They can't comprehend the fact that YOU won't get better after a certain amount of time. You vent all you want....just let it all out!

Yes Cardiactec, those were AFTER the Nitro. I only had 18 bpm difference before the nitro. And yes even though I was symptomatic I was having a "good" day. I'm worse now then I was then....about 1 1/2 years ago. I was on different insurance when I had the TTT done, so not sure if the insurance I have would cover getting one again. I have copies of my results...I ask for them now ahead of time so they are ready when I go in for follow ups.

I agree Tearose, Something is screaming at me NOOOO to anxiety. I don't know what exactly, because at one time I would have been ok with trying the meds? Something is just telling me this isn't the right step. My gut tells me I don't have the right dx or maybe not ALL of one. Thanks

I think it's pretty challenging finding things that help. Things that can help others may not help you. What is your DX? There are so many informative sites out there that can help. For some diet can help, others can be the meds they take. Is your Dr familiar with what your dx with? They might try certain things to help improve everyday living? I hope I was at least a little helpful....I'm not a doc though so I can't advise you.

My highest BP reading was 122/77 the lowest was 98/55 The lowest heart rate was 94 and the highest was 130 Is that what your asking? The lowest BP reading was after I had the Nitro, as well as the highest BPM. Thanks

Hi, Most of you know how hard I have been trying to get dx. I'm upset with my results. They tell me it's just SVT. That I do NOT have POTS. Not that I want POTS or anything. But the Dr.'s reasoning was I didn't have POTS because my tilt came back negative. HOW MANY have had negative tilts though? I want them to be very sure before they rule it out. I have more symptoms then I can list and the NP seems to believe that there is more going on then just SVT. Unfortunately, she says she wants me to try an anti anxiety med. I'm not ok with this!! Of course I'm stressed, but because they have run out of options they want to label it anxiety!! This just doesn't sit well with me. They have increased my dose of betas, and said that if it didn't help bring the Tachy down that she wanted me to go on the anxiety meds. I don't feel right with this though.....should I try it anyway? Thanks for listening, I'm just curious as to what you guys think. Amber

I know for me I feel that my body is working hard as it is just trying to function, so any added stress makes it work that much harder. Being ill all the time makes it hard not to stress. I take deep breaths when I feel agitated.

Good news is always great to hear!! Congrats! Amber

Hi and welcome, I understand the husband thing...mine offers little support(he doesn't know how I think). Support is very important for our sanity!! Especially when we are told nothing is wrong.

I'm mostly Tachy, but my event monitor picked up a couple of Brady and PVC episodes. There was a mention of Possible WCB on one as well. What's WCB? Someone told me and I can't remember. I was only recording when I pushed the button, so not sure how that all works? I was told I had SVT but they didn't tell me what type. She only said that it was an electrical problem? Thanks

I'll have to keep my eyes out for this.