RunningWild

Yeah I can understand that. I'm not a very patient person. haha.

Yeah, I read that- but everyone reacts to it as miraculous. I want to know if it can be expected for more than just some of us.

Before POTS, I was a distance runner... working my way up to be able to run a full marathon. The months before the onset of POTS, I ran my first half marathon and it was one of the happiest/proudest moments of my life. But since then, I've barely made it back to running 3.1 miles(5k), and even then, I feel totally horrible. I am about to start taking Inderal, and my neurologist who is also a runner told me straight up "you're a runner... running is never going to be easy for you again once you start the beta blockers"... crap! I need the running as a form of stress/anxiety release, but I've found that with the increasing exercise intolerance, it has only been adding to my stress. Anyone run before POTS, and then make it back to that place?

Linda- Thanks for your input. I live in Pittsburgh and my parents live in Cleveland, so I just drive back and forth for the two days of testing. I will stay with them again tonight, and then take my mom along tomorrow for my tests. I guess I'm just confused because I have already been diagnosed with POTS and I thought it would be more about finding the cause then continuing to diagnose the same issue. She did take my typed up sheet of papers and make a copy of them before I left so she could review them and follow up with me tomorrow. The nurse also told me that while she is great at testing, there isn't much she is likely to do other than start me on a beta blocker and send results to my PCP... which I am fine with, but I think I was hoping for more options. Looks like it might just end up being referrals elsewhere. What's acrocyanosis?

I work in IT, so I was sooooo tempted to just be like "oh let me type that for you."

I feel like I'm trying so hard to get answers so that other people don't think I'm crazy but all that seems to be happening, is that I'm feeling crazy myself.

Well I had the initial appointment with Dr. Fouad, and everything I had heard about her was true thus far. I spent a good hour going over my history with the nurse, only to have to repeat the whole thing to Dr. Fouad as she typed it out (Very, very slowly). I have a hard time when I don't eat breakfast, and sitting in the little exam room with loud chicken-pecking typing was aggrivating my headache so much that I was just ready to get out of there. I then had the QSART and left. I feel like this was kind of a waste of a 4hr round trip drive to Ohio, plus an entire wasted day. I really hope the testing on Friday does me some good. Dr. Fouad wouldn't answer any of my questions until after the tilt test on Friday.

Well that went way differently than I had expected :/

You guys are wonderful. I will definitely write some questions down today and see what she has to say. I've heard the same feedback that Dr. Fouad is very concise with her questions- and I'm worried about the entire thing because I'm not even sure what's going on with me, let alone how to ask or answer questions about it!

So I have my first apointment and first set of tests at Cleveland Clinic with Dr. Fuoad this week. Tuesday and Friday. I was wondering if anyone could provide some tips on what I should cover with her while I'm there? Like good questions to ask, or anything that I should make sure we address? I'm anxious but glad the time has finally come.

Ah I guess i misunderstood what you were saying- that it was difficult to get a referral. Nvm. Insurance companies can be tricky.

Im curious why it was such a hassle to get in to be seen by Dr.G. My EP wanted me to go to Cleveland Clinic for some more testing/to speak with someone that knows what theyre talking about- and this was as simple as calling that Drs. Office, and asking for an appointment. Its weird that its not always this easy? Huh. Anyway, I have appointments and tests next week at CC.

Thanks for the responses. I really have no idea what its related to, but similar to Katybug, it has me in the fetal position on the bathroom floor, the pain is that bad. I have an appointment at Cleveland Clinic in two weeks with Dr. Fouad. Maybe I can ask her if it might be related, or I'll talk with my PCP about getting a referral.

So about once or twice a week, i get this horrible stabbing pain in my stomach/abdomen. It is very severe, like a 9 on the pain scale, but comes in waves. It makes it hard for me to stand up straight, and usually just goes away after a while of horrible, exhausting pain. Ive never been diagnosed with stomach issues with my POTS, but I know they are common. Anyone have any ideas on this one?

I have pulmonary stenosis, so I've got some abnormalities with my echo. I also had the transesophogeal one, which found some tricuspid regurg, and a PFO with atrial septal aneurism. The cardiologists aren't really concerned about any of this.

anywho- the tramadol worked at the beginning, and not so much as the month went on. I think you're right, issie, that maybe if i stop for a while, and take a little bit again, it might help. this headache hasn't broken yet, though- and i cant see anyone about it until march. i hope it doesnt last that long.

Omg- This just makes me hate my PC Doc, and his inability to properly address any problems i might have. He put me on 300mg, 3x a day, TO START I'm also on Xanax that he prescribed, and I don't know that they go well together. I'm also on midodrine, but I don't take it unless im feeling like im falling into that black hole of pots... regardless, i sorta feel like hes just throwing pills at me now to make me shut up.

So.... weird story? I've been getting headaches and migraines constantly for the past couple of months. They have been so bad lately, that my boyfriend even says "i think something is wrong with you"... in a nice way. My doctor put me on Tramadol after he diagnosed me with migraines, and I was taking this for a month. I guess the script said take as needed, up to three times a day.... I was taking it three times a day, and sometimes two at once. I know that's wrong, but the pain wouldn't subside. So recently, I've had a migraine that wont go away at all. I am having trouble sleeping because of it, and can't keep food down. I called my doctor and as soon as I told him about taking the Tramadol, he said "STOP TAKING IT! YOURE GOING TO BE ADDICTED!" So i stopped, and he had me make an appointment with a headache specialist, but I can't get in until mid-March.... I asked for something for the pain in the meantime, and he prescribed me Gabapentin. Ive taken a few now, over the past 24 hrs.... I feel high as a kite. Is this normal? I get very loopy feeling, then crash a bit, then feel high again. The headache pain NEVER subsides, even when i get loopier. Confused...

I wish I could forward this to my EP who works at Pittsburgh's Allegheny General Hospital and brushed me off---- but I don't know his email address. Regardless, great info, and something I can share with my family so they might stop thinking I'm nutso.

POTS hit me right after about 6 months of half marathon training, and a race. I haven't been able to run much over 2 miles since then.

When I was on Florinef, my potassium level plummeted and I was feeling whole body cramps/aches, and just a general feeling of garbage. They gave me a potassium supplement and took me off Florinef. ER's ****.

When I was hospitalized and getting constant saline, I found I was still blacking out and getting dizzy upon standing (which I had to do often since I had to pee like every 10 minutes)... But my nurse was also always running in and asking if I was okay because they could see my heartrate spike like crazy on the machines.... Idk that it really helped me much, but would like to see if would help during a really bad day (like yesterday omg)...Good thing my ER copay is down with my new insurance! lol

I am always tired, but if i don't take something to help me fall asleep, I have a hard time with that. Lately, the Xanax has been knocking me out every night, but I used to take 2-3 Excedrin PMs, and a few years ago I was drinking Nyquil everynight. The problem with this is that I can fall asleep better, but I often wake up multiple times in the night, and then have an even harder time falling back asleep.

Naomi- I don't know why i mentioned the midodrine- other than it makes most of my potsy stuff go away but not the ear stuff. also- i was given tramadol for my migraines, and it makes the ear blocky feelings 100x worse. sigh.

I never have been- but i wasn't totally sure if the issues were related at all so didn't know if there was a point. :/ That and the constant dismissals- im staying away from drs. lately.