Newly Pots...my Situation, And How Do I Fix?

[Becia]

Howdy all!

My name is Becia (Bek-ah), and I was just diagnosed with POTS exactly one week ago today, and literally since the tilt-table test and the doctor going "Oh *****, get her flat!" then telling me it was definetely POTS, I've felt thrown to the wolves, trying to figure out how to manage, and what I can and cannot do.

I've watched the video that was posted here, and cried and laughed through it all. I say laugh, because in the listing of things to avoid, there was one that said "Doctors that dont know anything about POTS". I kept thinking back to my experiences, and just laughed, in which I ended up passing out, and had to rewind it.

My POTS experience, I believe, goes back to last year. I ended up in two ERS because of having a racing heart, chest pain, and just general "ugh" feelings. I was diagnosed with a lot of PVCs, told I would live, and that was it. In March, when at the doctor for a checkup, she listened to my heart and said it was way out of whack, and asked if it bothered me. Yes it did, and everything else I still dealt with did too. But I also had a pretty intense job at the time (backroom work of Walmart, I would walk at least 9.5-13 miles a day, and that doesn't include the climbing of ladders and such), and kinda chalked it up to work being too hard. Well, she sent me to a cardiologist, who did all sorts of tests, yep, you've got major pvcs, two medications later she sent me to the EP cardiologist on staff. Had an ablation on 5-30-13, and three weeks later, I was back in his office because I couldn't function and was passing out. Told to increase salt and water (which I was already drinking over 170 ounces a day), and another EKG showed my PVC's were back with a vengance. So, on 7-1-13, another ablation was done.

I feel I never recovered from that ablation, because I was still dizzy, weak, lightheaded, exhausted, and raising my hands above my head lead to disaster. I made the decision to quit my job, because I felt I couldn't do it safely, no matter how much I loved it (and I did... crappy company, but MAN, I loved what I did, and was really good at it), if I was on top of a 12 foot ladder (which was common), and passed out, I would hurt myself and others more than do any good. I also revisited with my doctor who told me that desk job would be beneficial, because the more I'm on my feet, the less likely I am to recover from this. RECOVER. Yes, he used the word recover... I'm kinda shocked. He stuck me on Celexa, and I was having horrible side-effects with it (shaking, passing out still), but he kept saying "You'll be fine, you're healthy, nothing to worry about." My shaking was not nothing to worry about, that's a major "Something's wrong here" with that drug.

Two days later, the family I live with had to start picking me up off the floor. I passed out coming out of the bathroom, and couldn't move. I had no strength, I was numb almost. They knew I'd been passing out, but never to that extent. It took me a good couple hours to get going, and even then, I was woozy as all get out. They picked me up off the floor again that evening, when I got done with my shower and was heading to bed. That took about four hours to get my strength back.

The next day was the day we all went "What they hey?!" and it all broke loose. I'd been passing out, but nothing like the previous day, until that evening. I was unconcious more than concious. Dragging me to the ER while texting my doctor because I couldn't walk, he was still saying "Oh, there's nothing wrong, she just needs to drink more". Dave, one of my friends, was making me drink Gatorade every chance I was awake. They got me on a monitor at the ER, and every time I tried to sit up, I would pass out. Yep, heartrate spiking, I apparently stopped breathing a couple times, but laying down, it would regulate out. The ER kept thinking I had done something to my head, but thankfully, Dave said no to the CT scan, and showed them what the doc had texted him. Did they do that treatment, no, but we decided (when I was awake enough), to see my cardiologist in the morning.

I woke up after 2 hours of sleep (my usual, i have insomnia like crazy), and while I felt really crappy, I forced myself to get up, dress, make my bed, and get another glass of water. That was it, after that, I passed out in bed, just laying there. I'd been doing that a lot as well, which is wierd. We finally get to the cardiologist office, and I pass out just trying to get onto the table for an EKG. Suddenly, this got real for this office, and they could tell something was wrong, and Dave wasn't going to leave until we had an answer (Dave and Lori, his wife, are totally awesome people, and you just don't ignore them, I've learned this a LOT lately). Admitted to the hospital, where the next day they did the tilt-table test that led to the cardiologist over that test, cursing and throwing me back down.

I cried. I fought passing out, I did pass out. Dave started looking online for information, because its not very confidence building when the doc comes in and says you're only the second patient he's ever seen with this condition. When he comes in and says this is life-altering, and he doesn't know how. When you have a ton of questions, like "Am I going to get back to biking? Am I going to be able to work, and if so, how do I explain this to potential employers so I can get a job?"

So yeah. I feel thrown to the wolves with my diagnosis. I'm relaxed by the fact we have a diagnosis, and not a "she's fine, it just takes time," like we've been getting from my usual cardiologist. They started me on Proamatine, as well as the water and salt thing. But I'm still passing out a lot that leaves me with no strength, and in need of assistance to sit up/stand up/get to bed, and I have so many questions I'm afraid to ask, because I'm afraid no one will know the answers.

I always knew I was broken. I've dealt with a lot in life. But am I broken so much now that I can't be fixed? I'm unemployed, not allowed to drive because I've nearly crashed my car several times since the second ablation (in fact, Dave took my car key in the hospital after the doc said no driving till I'm cleared, which could be October), and I'm dealing with all of these symptoms that have inpacted me in ways I cannot seem to get my family to understand. I can't even play my drums for long (I'm a drummer for a band at church), and my deaf ministry has been put on hold, because signing wears me out. I can't talk long for a conversation, although most the time I don't make sense, so that's probably a good thing.

Where do I go for info? Who can I talk to for advice? How do I need to word my questions, so I can get answers? Help?

Sorry for the long post... this is the two hours that I seem to feel halfway human... I'm lucky if I get that in a row...

[misstraci]

Oh wow, I am so sorry for what you have went through! I feel bad that you feel so bad but glad you kind of have an answer now. I'm not sure why the proamitine (is that midodrine, right?) wouldn't alleviate some of the passing out. Maybe if that one doesn't help they could try the flourocortisone (i know that is spelled wrong) but hopefully something can help soon. Yay for Dave and his wife. Having good people around who care and understand is very helpful! I'm sorry you had to quit a job that you really enjoyed. As far as where to go for info, I can't really answer that as I'm not so certain myself. Most doctors that I've been to know about as much or less of POTS than I do. I think this forum is a really good spot for answers and advice, a lot of people on here are very knowledgeable!!! For your PVCs, aside from the ablation, is there a medicine to give for that to maybe help out? Could the passing out be from the PVC themselves in addition to the POTS?

Anywyas, I really hope you are having a better day and I hope some peoples on here can help with some answers and advice for you.

[Becia]

Yep, proamatine is midodrene, or however it's spelled... My focus is way off today, sorry, lol. I have a call into the doc because I'm not sleeping, and trying to apply for some local aid has been really causing havoc, but it's one of those things I've been told to just wait time and time again. How long am I supposed to wait and go on like this without getting any answers? Patience may not be my virtue, but at some pint we all have to step back and go "okay, this isn't working, what's the next step?"

And Dave and Lori are totally awesome. Anyone who makes sure I pass out comfortably (well, as comfortable as possible), and then have lifted me to bed when I still can't feel or move, is a saint. I'm a whiny, whiny patient.

And the pvcs, they are saying those are gone, but they did see PACs on the monitors when I was in icu last week. All I know is I really don't want another ablation, if the ablations I had might have set me on the course I am on. I've always suspected something else was weird in me, but it wasn't until that second ablation that heck really broke out.

[Hope]

Yikes, you've got it bad On the home page of the Dinet.org website you should be able to navagate to a list of POTS doctors. It's a start. Then there's the biggies, like Mayo clinic, Johns Hopkins, Dr. Grubb, Cleveland clinic, etc... It just depends on what area you are in. You definitely need to take charge because regular docs tend not to pursue help for you. It's good that you have a couple people to help you. In your state of being, it would probably be impossible to do it on your own.

[Hope]

Also, on the Dinet.org page there are "What helps" and "What to avoid" if you have yet seen them.

[Becia]

Yep, I've been pouring over this website since I discovered it a couple days ago. This place has been way more helpful than the packet of info I got when they released me from the hospital last Friday. Being the second person that the doc has seen with this, I guess we are all lost. I live in Ohio, but being without insurance, I'm kinda at the mercy of whatever I can afford, which isn't much, so seeing one of the specialists, I may never be able to do so.

[Katybug]

Hi Becia. Welcome to our community. Sorry you find yourself needing to be here. In my experience,tis website and forum are by far the best resource I've found for POTS information and getting support and questions answered. I do see a specialist who is great and who answers my questions but that's only an hour once every 3 months and POTS is more complicated than that. Keep in mind that there are many people that do recover from this so it is possible and they aren't hanging around this forum anymore to give feedback. I know this is scary but you should be prepared to take one day at a time and do a lot of your own research even if you do manage to see a POTS specialist. I am on my phone and have no idea how to link info from here but I know I've read some papers that are out there regarding ablation and POTS. You may want to do a Google search on that. I will get on my computer later and see if I can find them and link them. There are a few drugs that are front line defense against POTS that you may want to talk over with your doc...fludrocortisone (Florinef) and beta blockers being most common. Keep in mind, we all have found that what works for one of us may not work for another. But this is a great place to share ideas. Keep asking questions and we'll do our best to keep answering them. Hang in there.

[davecom]

Becia, my heart goes out to you. It was heartbreaking to read your story. I do believe you can get better, so you can't give up hope. I wanted to point you to a story very similar to yours of someone who recovered:

http://www.dinet.org/stories9.htm#pots%20recovery

It's called "POTS Recovery" by Kerk on Page 9 of Stories and he also had PVCs, PACs, POTS and multiple ablations (spoiler - he recovered... so I just wanted to give you some hope).

[Guest Alex]

Becia,

sorry you had to find this site, but like others have stated above, it has provided me with more information and support than anyone else. Hopefully it will do the same for you.

My heart goes out to you. I'm so sorry that you have to deal with this and you haven't found a doctor who can help you yet.

As others have said, browse through the resources available on the main website, post on the forum if you have more specific questions or search for topics of your interest and see what other members have gone through.

In terms of treatment - midodrine(proamatine) sounds like a reasonable medication for you - maybe your dosage needs to be adjusted?! Also have your drs ever suggested florinef , desmopressin or octreotide? They may be worth looking into. The first two are usually helping you retain fluids so they boost your BP by increasing your blood volume. The octreotide works somewhat similarly to midodrine by constricting the blood vessels in the gut area.

Don't give up looking for answers and most importantly don't give up hope. We're here for you.

Stay strong.

Alex

[Becia]

Well, last night was a bust... I ended being transferred to the local er after passing out twice, where they thought I broke my hip. Thankfully, a severe sprain, but oh my goodness... I was educating everyone in between passing out and screaming in pain. I called the doctor yesterday too about the meds, but never heard back.

So frustrated.

[corina]

Welcome to the forum Becia!