houswoea

Dr. thought it was giving me unbelievable chest pain because of how it effects potassium, but after I stopped it just kept happening. I just had other medicines that worked better at that point.

Wow, so much drama in the medical field lately. I know they mostly can't help it, but it makes me sad because the patients are the ones who hurt because of it.

My doctors just seem so afraid of me, like I'm this daunting case where there is always something wrong and I never get better. I feel that way too sometimes. But still... I wish someone could just understand.

But yes, tennille, the therapist has been the greatest physician for me (Well, God, then the therapist). Getting my depression and anxiety over this situation has been the biggest help in getting me back to normal.

Thanks everybody for the help! You are all so great.

I did wonder about that, but I thought maybe your hormones were so balanced, it was like there are none?? lol.

I've tried an integrative doctor, but I felt like they were just pushing supplements at me all the time. And it was expensive!

I'm going to try a new primary doctor that someone on here had suggested in my area, and hopefully he will want me.

Oh my gosh donating blood?! Wow that is crazy! I think I would die! Lol

Even getting my blood pulled for test, I have to lay down or I pass out.

I'm not sure if I can yet, I always get disqualified in the screening round! But I figure if some people feel worse than we do, I should try to help them out because I can't even imagine feeling worse sometimes!

I am told 80/40 is fine by some of the docs, I have a midodrine script but not filled it yet, scared of it lowering my pulse.

What is frustrating is I feel crappy at 80/40 but then when it's up to 100/60 I still feel crappy, so not sure if it's the low BP doing anything or not.

Really? Midodrine did nothing to lower my pulse, though I wish it had! Usually the way I feel relates to how fast my HR is rather than my blood pressure. SSRI's made things way worse for me. I vote you just go ahead and try things, and if isn't working, you can always stop and try something new!

Well, I keep trying to donate blood but they won't let me donate if my bp is 90/50 or lower (which makes sense). Before midodrine kicks in, usually sitting down I'm around 70-80/40, but I don't notice unless I am at a doctor or the donation center or something.

I know it's too low when the wooossshhhhh bbuzzzzzzzzzzzzzzzz sounds are in my ears. Then it's time to lay down! Or if I wake up on the ground. Then I know it was too low :-P

I actually live within driving distance of Rochester, right outside St. Paul, MN. They were wonderful.

But I want a doctor that I can see in a hurry if I need to, or someone I can call with questions, or you know, who remembers who I am! So if I have problems there will be someone who has seen me and knows what is going on.

During one episode, my roommate and friend said I tried to hit them because I didn't want to go to the hospital! They said they laughed though because I couldn't stand on my own. I don't remember things from my episodes, but I wish I could remember that!

Anyways. I have problems with anger. I get angry with people who I trusted that have said terrible things about me since I've been sick and abandoned me when I needed them most. Anger is the easiest coping mechanism for a profoundly hurt heart, but it's certainly not the best!

It took me a while and two amazingly wonderful counselors before I can finally say I have a better handle on it. Counseling was the best decision I have ever made. It has been the best treatment for me. Not because I'm crazy or needed medication, just because this whole deal can be overwhelming and sad.

Churches often offer counseling free of charge! I've been to both regular clinical counseling and counseling through churches, and I usually like the churches better because they don't treat you like a patient, but a person.

I'm not an expert with computers or anything, but if you use google and search only dinet.org, you can search through all the posts.

Maybe it's congenital? I have an upside down EKG, but it's not a problem, it's just the way it is

I'm having trouble finding someone to stick with me, and I'm not sure what to do next.

My primary doctor is terrified of me, and never even heard of pots before me. The guy who diagnosed me is an electrophysiologist who has kind of followed me, but I tried to schedule my 6-month check up and they told me since he doesn't have any more ideas that I shouldn't see him anymore. I haven't seen a neurologist where I live in over a year now, and I saw great doctors at Mayo, but they're too far away and not readily available.

So now I'm just a bit scared that if I ever need something, I will have no one to go to! I'm good right now... but it just scares me.

If it helps, for a long time, all my doctors kept telling me I was just crazy. I even started seeing a psychiatrist.

When I was at Mayo, my doctor said "Just because we don't know what's wrong doesn't mean you're crazy. You're not crazy. It's our fault we can't figure it out."

He was the first one to say that to me.

I found it was easier to get in with a regular neurologist and then get referred elsewhere in the dysautonomia specialty than to wait for the POTS guy.

I had a good experience with Mayo in Rochester. I waited about 3 months to be seen. They were the only ones who would help me when normal treatments weren't working for me.

I thought I would update everyone on how things went.

I didn't request the shot without epinephrine, which was a mistake. I had read that mixing propranolol and epi was dangerous, but I figured he'd only use a little, and I only take a little. Anyways, they kept the heart/ bp monitor on the whole time, so after the first shots, my HR and oxygen stats went way down and my blood pressure went way up. Freaked them out to no end... but then it got better. I was relieved that the two doses were so low that it was okay.

I haven't fainted yet, so that's always a good sign.

I found out I'm allergic to the vicodin they gave me, but I was half expecting that anyways. So that's all! Still walkin!

I get one liter over one hour at a clinic.

Oh good. Well, I'll quit worrying then.

Okay, I know I've been asking a lot of questions, but I feel like you all will have good insight on this!

I am getting my wisdom teeth pulled next week. I've had dental surgery in the past, and it was no big deal. But now... I just feel like it could go really well or really, really poorly.

Is there anything I should be concerned about? I'm mostly afraid that the pain pills and laughing gas (I forgot the actual name) will make me sick, but there;s no real way to test that.

And also, were you able to walk after? Or should I bring a back up, like a wheel chair, stronger person than my mom, ect.

Can't be more painful than what I've already felt with POTS, just worried that I'm going to miss something important.

The thing that helped me the most was letting my body rest for a few months. I think they may be thinking of pots as a one-cause condition when really it's only an umbrella term for a bunch of different things that make your heart rate go up when you stand.

Doctors are always saying I'm non-compliant (translate: I can't stand up, but they want me to walk somewhere) but it's always worked out in the end. As long as people know it's a problem, we will get good treatments eventually!

Hello again! Hope everyone is doing okay!

So, I'm a bit confused. This has been a bit of an off-week in comparison with how I've been feeling lately, so I decided to break out the blood pressure monitor just to check it out.

Usually, I can get a good reading while I'm standing but every time I try to take it today it's giving me the E (error)sign. It's fine when I lay down, but it won't take it standing up.

I figure since I'm still functioning and conscious (although I did pass out hardcore earlier this week) that it can't be anything I should worry about.

So I'm wondering... what does it mean? That my BP is too low to be detected? Or just that I'm not supposed to do that? I'm trying to decide if I want some IV saline or if I want to wait it out.

Thanks as always! You're all so great!

That's why crazy doctors like levine are so dangerous, they push their nutty ideas long enough and it gets into the main stream. Don't doubt for one second this guy is saying he can cure POTS and if you aren't better you're just to lazy. Just the fact that the doctors from Vandy didn't jump all over this guy is scary, very scary.

I agree... the best thing I did to help my body heal was actually to rest and stop pushing it so much. When I was working so hard to get better it only made things a billion times worse.

But the fact that doctors were there and asking questions is still great. They talked about stuff that we already know on the forums. I wish my st. paul doc had been there! He would benifit to know all the other medication options besides midodrine. He doesn't right now.

Any press is good press?

Id be surprised if doctors from Vandy suggested exercise was a 'magic cure'. the only doctors suggesting that are from Austin and seem to be pretty picky about who they include in their study protocols

I thought that as well. Exercise didn't really help me when I was really sick, so I am always a bit confused. My dad said while the TX people were pushing only exercise, the Vandy people said to push exercise but also use meds.

There was a lot of talking about how POTS patients would benefit from exercise but are usually non-compliant and I was like "hey now! that's not true!" but otherwise there were a lot of good things mentioned.

The doctor from Austin is just good old doctor Levine. No wonder there was such a push for exercise.

I think my dad said that the doctors told them all that out of every POTS patient, he's only ever put in two pacemakers.

It was just a regular old conference, my dad just happens to work with pacemakers. For the most part, they emphasized exercise as the "magic cure" so to speak.

And Sue, I will try to get the names of the doctors for you.

Hi friends!

I was excited about this and I wanted to share it with all of you!

My father is a biomedical engineer and he works with doctors who put in pacemakers. He went to a conference last week, and he went to two sessions on POTS, one by people from vanderbuilt and one by people from Autsin, TX.

He said both sessions were completely packed with cardiologists asking tons of questions and wanting more research and stuff!

I looked at all his notes, and I'm pumped that awareness is increasing.

Okay, have a nice night! Or day if you read this tomorrow!

Hello!

When my first cardio told the "low blood pressure is common in girls" story, I broke down crying and told him about how much it was affecting my life and how it just HAD to be more than normal "low blood pressure issues".

He believed me and took my troubles seriously. He just didn't know based on my explanation how badly off I was. If you trust your doc, try explaining how terrible things have been. If you don't, I really think the drive is worth it.

Hope things get better for you!

Woah, Victoria... exact same experience for me!!! I just aviod them at all cost because by the time we got there, I'd still be still, but my heart would be semi-normal, only a little high.