Newbie

[casey311]

Hello all. I'm here to introduce myself. I am 29 years-old with two beautiful sons and a wonderful fiance. I was diangosed with POTS and NCS in October, October 17th to be exact. Here's my story.

During my second pregnancy I started feeling really bad. Lightheaded and dizzy pretty much from the second trimester on. I kept telling my OB and she kept writing it off as my hormones and I would feel better when I delivered. I knew it was something more b/c it was all day every day and I just knew it wasn't normal. So about week 32 I go to my PCP and he does the whole physical and tells me I'm fine and I can go to a cardiologist and neurologist if I wanted but my OB pretty much told me not to waste my time, so I didn't. I had this feeling I should have but didn't. Well I have the baby and still feel like crap 2 weeks after so I go to the cardiologist and he puts me on a heart monitor for 30 days. In that time it recorded my heartbeat down in the 20's and my heart paused for 7.5 seconds. I got a call the next day not to drive and to get in to get a pacemaker implanted. Got the pacemaker implanted August 21 and was still feeling bad so my cardiologist did a tilt table. My heartbeat jumped but he didn't say anything about POTS and my blood pressure was fine so he pumped me full of fluid and sent me home. Two weeks later I go see my neurologist and he had the first TTT results and wanted to do a repeat b/c the report didn't say how often my heart was jumping and how much and I failed the second one. My blood pressure went down to 50/40 or something like that at around the 20 minute mark. I had just went to a new cardiologist in between the ttt's and he turned my pacemaker down from 65 bpm to 50 bpm and although my heart rate jumped around the same I'm wondering if that had something to do with my blood pressure b/c the first ttt my blood pressure was fine and that's when my pacemaker was turned down. Anyway, I've mentioned it to my cardiologist and he doesn't think it had anything to do with it but I haven't mentioned it to my neurologist. I go to him in a couple weeks. He put me on Toprol, which makes me feel bad and he first had me on 25 mg but my blood pressure was getting low so he changed it to 12.5 but I was still dizzy so he prescribed MIdodrine and I have anxiety so he also put me back on Zoloft 50mg. Had a wierd experience driving where my heart started beating really fast and my entire chest out to my shoulders just felt like it was burning so I stopped all meds for a couple days. Stayed on Zoloft b/c it helped my mood, I was getting really depressed having a newborn and not being able to do anything with him and I started the Toprol again and still felt bad with the blood pressure, it felt like I was jsut going to pass out, so I stopped that and started taking the Midodrine just a couple days ago. I still get these feelings in my chest like my heart is beating in my throat and I'll feel my pulse and it's pretty fast so I don't know what's causing this. I know I had a nasty viral infection a couple weeks before I started feeling bad when I was pregnant so I don't know if that's what caused this whole POTS thing or what. I have an appt. with Dr. Grubb on March 5 and it can't come soon enough. I also have an appt. with the Cleveland Clinic in February but I'm going to try and move it back to the same week as Grubb since I'm traveling from Missouri. Like many of you, I'm just trying to do what I can to kick this. I've been excercising but trying to find meds is hard. I might just stop them all until I see Grubb and see what he says.

Alright, sorry for the book, I've been lurking for a month now and just got granted access to finally introduce myself and start posting. Thanks for listening. And if anyone has seen Dr. Grubb recently can you let me know how the apt. went? Is he still as thorough as he use to be. And any experiences at the Cleveland Clinic would be much appreciated. Thanks so much.

[pat57]

Hi Casey,

I think the pace maker helps with the NCS but not the POTS. Put another way it helps increase the HR but not decrease.

Sorry can't help with anything, but, I don't think its safe to start and stop heart Toprol like that. You could call your pharmacy

and ask about that and the suspected side effects.

[Rachel]

Hi Casey,

Welcome to DINET. I'm glad you found us.

It's interesting that you mention having a virus before your first started having POTS symptoms. For some, POTS is triggerd by a virus. Those who have post-viral POTS have a good chance of recovery. If I remember correctly, Dr. Grubb told me that those with post-viral POTS usually recover within 5 years. Not always, but the statistics are very good.

You said that you get feelings in your chest like your heart is beating in your throat. I have this same sensation. My holter monitor showed that they are just PVCs and PACs, which are benign. This is a common symptom for people with dysautonomia. This may be what you're having. A holter monitor will be able to tell for sure if the heartbeat irregularities are benign or not.

I've been to Grubb and Cleveland Clinic. I had very good experiences at both places.

I hope you can find the help and treatment that you need.

All the best,

Rachel

[carinara]

Hi casey,

welcome on Dinet! Iam so sorry to hear what you are going through at the moment. I know myself how hard it is to feel so sick and having a baby at home. My thoughts are with you! All the best

carinara

[casey311]

I justcwant to thank you all for taking the time out to read my post and answer with your well wishes. I'm so thankful I found this site, like so many others. I wish everyone the best of luck dealing with your illnesses. You are all in my thoughts and prayers!

[Ernie]

Hi,

Welcome aboard.

I saw Dr Grubb in 2007 and I was satisfied with his appointment. He is the one that prescribes most of my meds.