turtlefairy5

Thank you, thank you, thank you! This forum is so awesome.

I have the same question. My cardiologist diagnosed POTS, but I'm unclear as to whether that means that I am also necessarily experiencing autonomic nervous system dysregulation.

Along with the POTS, I've been dealing with depression and anxiety for years and years. With my recent health problems, both have gotten worse.

For the past few months, I've been experienced something that I can only describe as sudden bouts of acute malaise. Not just tiredness, but tiredness plus. It's a feeling of yuck. That's why I describe it as malaise.

When I realized that my heart rate was increasing when I stood, described this to my doctor, then my cardiologist, and my cardiologist said it sounded like POTS. I was relieved to finally have a diagnosis other than anxiety, because, with these physical symptoms that are beyond the symptoms I've come to recognize of anxiety, I was getting pretty frustrated with not getting any answers that met with my own knowledge of my body. Something was going on beyond anxiety.

Anyhoot, it turns out there hasn't really been a change in treatment. I'm still on the beta blocker that I was prescribed in the ER a few months ago, and I've been told to load up on fluids and salt.

Now, I'm not frustrated that I'm not being given different/more treatment, as my treatment seems to be along the same lines as everyone else here.

My problem is that my treatment doesn't seem to be helping all that much, and might be making it worse?

I've noticed that every morning about two hours after I take my morning line-up of Aciphex (for the GERD), Metoprolol (for the tachy) and Zoloft (for the depression/anxiety), I feel so tired, worn-out, lazy, etc. Some days I end up giving in and taking something like a 2 - 4 hour nap. Since starting the Zoloft, I think, so far as the depression goes, I've actually started to feel worse. I find myself thinking "What's the point? What's the purpose of life, anyway?" a lot. Not suicidal, just feeling a little lost and inconsequential, lacking substance, maybe? I recently left my job as a teacher due to the stress/fatigue, so that has something to do with it also. I need to be doing something of consequence to feel fulfilled, and I feel very unfulfilled and meaningless lately.

I want to feel productive/alive/energetic again.

I fully intend on discussing these issues with my doctor(s), but I wanted to ask ya'll...

Has anybody else experienced these symptoms (malaise, sleepy, worn out) from their treatment? (I think I've read some who have.) How did you handle it?

Thanks,

Amber

Your story sounds very similar to mine Cameron, especially the timeline. My troubles started in February as well.

Well, actually, in hindsight, I'm thinking it really all started several years ago with a really bad virus. I had searing back pain, was incredibly weak. I went to an urgent treatment center (bad idea); they did nothing for me, just declared it "a virus." My vision went bad; it was like someone dimmed the lights. A couple months later, after trying to suck it up and continue my work as a teacher, I finally went to see my general practitioner because my fever was so bad. I had pneumonia.

Fast forward a few years, and this past February, working as a teacher at a different school, stressed out, still having GERD symptoms that had been going on since way before the pneumonia, I woke up feeling sick. I got dressed, fully intending on going in to work anyway. I made it to my mom's apartment and fell to the couch, not to move again until I went in to the doctor. From the doctor's office, I was granted a ride to the emergency room courtesy an ambulance, with a heart rate approaching 200 bpm. They did a bunch of tests, found nothing, sent me home with an antibiotic. I returned to my very stressful (for me, at least) job as a teacher (takes me a while to learn my lesson). Less than a month later, I drove myself to the ER after waking up with that awful feeling of hearing my heart racing in my ears. It was only (ha, only!, funny how I think nothing of it now) around 160 that time.

Since then, I've had doctors brush me off as simply suffering from anxiety, which I do, but there's also something else going on, and finally, recently, a cardiologist mentioned POTS. Thank goodness for that ER doc who treated me kindly and referred me to a cardiologist.

Since then, I've been prescribed a low dose of a beta blocker, along with increased fluid and salt intake. I try to be easier with myself and take it easy.

I'm glad that I've found this forum, as it's really helped me feel supported and not so alone.

Thanks for starting the thread, Cameron.

I hope you find someone who looks beyond the physical/superficial soon.

I've been in a relationship while going through the confusion of poor health and struggling to find the correct diagnosis. We've been through hard times because of my illness, but it's been good to have someone who cares.

This may not be what you're looking for, but I use a sports watch that has the ability to check my heart rate. It doesn't record my heart rate or connect to the computer; it is pretty much what you're talking about athletes use, but it's relatively inexpensive (around $30 at Wal-Mart), accurate, easy to use and not as ugly as some of the others. It's made by Sportline and the version made for women (mine) is grey/lavendar.

Good luck.

Gatorade!

Gatorade, Gatorade, Gatorade.

alternate with bottled water.

I went to yee ol' Wal-mart and picked up a cheap-o (less than $1) 16 oz. water bottle with a sippy-lid (don't know how to descripe it, it has the thing you pull up to sip, push down to close so it doesn't spill out) and I use it all day.

I try to drink 4 of those every day, two gatorade + two water = 64 oz. of liquid in a day.

One thing that helps me is to actually note down in a small notebook or journal how many of the full 16 oz. I'm drinking every day. If I only drank two yesterday, I know that I'm behind and that I need to step it up the next day.

Also, I find that I'm using the restroom less when I drink gatorade as opposed to water, so I suppose my body is holding onto the gatorade better than the water, which is a good thing, yes? I've read on here that it has salt/sodium, which I've also read on here helps retain water/liquid...(so THAT'S why my cardiologist told me to eat a lot of salt!..hmmmm...why don't they explain it to you so you know why you're doing what?...I'm curious!..I want to know!)

Water goes through me like...well...water. It's aggravating getting up over and over again, especially when you are trying to nap or sleep at night....double especially when you take something to sleep and it makes you stumble on your way to and fro the bathroom!

Good luck! Stay hydrated!

I'm not sure exactly what you mean by irregular heartbeat, but I have definitly had the thing where you can hear, feel AND see your heart beating, whether it is beating within the normal bpm range or if I'm having tachycardia (which is all the time). It is especially bothersome when you are laying down to sleep at night. You feel like something out of an Edgar Allen Poe story. *winks to those who get that reference*

My doctor has said that everything is fine as well, fine being relative, meaning that there is no heart disease, clogged arteries, etc. things that go under the label of definitly not-fine.

If you aren't in need of obvious, immediate medical assistance, in other words if you are "fine" and suffering from an on-going syndrome (such as POTS) that bothers your life and really puts you out, as opposed to, say, "not-fine" and having a heart attack, in my experience doctors tend to take more time in dealing with it and tend to have less direct treatment suggestions. Instead of a medication or surgery, you may need to make pretty major life adjustments, for example.

Your doctor should still listen to you, though, and hear that you are uncomfortable and try to do something about it.

If your doctor has said you are "fine," reiterate to him/her the symptoms that are bothering you and ask him/her what you can do to stop them and/or feel better. If your doctor shrugs or otherwise doesn't seem concerned or responsive, seek a second opinion.

There may not be a whole lot you can do, but your doctor should at least be able to offer some sort of suggestions.

jump's advice sounds great. just to second that opinion, I'll say that it's definitly important not to try to hide your illness at all, but at the same time don't beat them over the head with it. If you try to act like you're perfectly fine, as I have in the past, your body will eventually speak up for you, and it'll be screaming. Don't want that.

However, if you go into a long, tense explanation of your illness, or talk about it too much, you're likely to scare/freak the other person out and they may not want to persue the relationship anymore, which could be a big loss for them and for you.

I'm recently diagnosed and am just starting to learn to speak up for myself when I need breaks, nourishment, etc, but not drone on and on about my worries, concerns and fears like I did in the beginning - that can get old, and depressing - for you and for your partner. I was several months into my relationship when I first started to come to grips with the fact that something was wrong other than simple stress, that my body was thrown off whack in pretty major ways.

The things that have helped me keep my sanity and my relationship have been information (educate yourself, be proactive about finding info, just for yourself, not necessarily to share, unless asked, as jump said), optimism (doesn't come naturally for me) and speaking up when I need breaks/food/water/etc.

As for finding a dating pool, I would say you're on the right road avoiding the bars and such. Those places tend to house people that are into more active party lifestyles. If you can afford it, try persuing your own interests in a social environment, for example if you enjoy writing, take a course at a nearby college or university. Find places and activities that are calm and soul-nourishing, and you'll generally find people that are calm and soul-nourishing.

Like Sara said, there are always stinky fish, bad apples, etc. euphemisms, so don't be afraid to kick those immediately to the curb/garbage/disposal as soon as you realize that they are no good for you.

Good luck!

Amber