bellaluna

YES! I thought I was weird! Turning the corner of the aisles in the grocery store can be HORRIBLE sometimes... it's amazing what we have to put up with sometimes, that "normal" people take for granted... Mary

You can add me to this list too- I also get this way, and I've read that people with the hyperadrenergic form can also tend to have hypertension instead of the hypotension. And I've experienced the exact same narrow-mindedness from doctors- if it isn't low, then it must not be causing my symptoms... WRONG! That is what I hate the most about doctors- everything is this or that, it can't be something in between, and if it is something that doesn't seem to make sense, or something that is unusual, forget about it. They won't be able to help you, you'll pretty much be wasting your time, energy and money. It's maddening at times. Mary

My department, in fact my entire building, and the division that we are a part of is being reorganized by our company. As a part of the reorganizations, many, many changes have happened, many of them very suddenly. And, recently, management has taken the liberty of reducing staff and telling us "well you'll just have to do more with less". They are pushing me into a crash, I can feel it. I was doing better for so long, and had actually just gotten the ok to go back to full time hours, and just this past week I have been SO symptomatic, it's been awful. Some of you may have seen my previous post about my unexpected reaction to an unpleasant email, I nearly blacked out on the spot, and I have been having the "dizzies" and the awful headaches that go with the dizzies. The fatigue is worse and the shakiness is worse, and in the past few days I've been having really bad digestive issues, ranging from severe nausea to diarrhea (sorry if TMI) to stomach cramps but not being able to go... it is horrible. I want so badly to tell my superiors that what they're doing is harming me, but I'm afraid that they'll basically tell me that if I can't handle it then I shouldn't be working. I can't afford to live on the disability that they pay (1. because it is only a fraction of my regular wage, and 2. because I'd have to wait a month before getting paid anything, and I can't live for a month without income at this point- I've got DOCTOR bills to pay!)... I've tried to apply for other positions within the company, but have basically been told by our HR department that I won't be allowed to move during this "transitional period". So, I'm stuck. And they're killing me. At least that is how it feels. Not looking for anything here, just wanted to vent more than anything, but hugs are always appreciated. I'm so glad I can come here and let it all out because nobody else really understands what it is like, but you guys do. Mary

Thank you Cat Lady. Normally, I don't really let things bother me too much, I'm a little more laid back, at least I try to be... so this really came out of left field. Scared the heck out of me! Knowing that it could potentially affect me this way, I will really have to work on keeping myself in check from now on... Mary

I feel your pain, as I go through almost the very same thing with my husband (and basically everyone else in my life- parents, in-laws, friends, co-workers) and I have yet to find a way that truly explains what it is like to be me (or anyone else that suffers from POTS). It's just one of those things that unless you experience it yourself, you just cannot know what it is like. I will be watching this thread with interest as well! Mary

Thank you my friends, these explanations make perfect sense. Thankfully stupid nasty co-worker backed off today... Oh the joys we get to live with on a day to day basis! Mary

Ok, so I know some POTSies become more symptomatic when under stress or when they're upset, etc., and I can say that is generally true for myself as well. But today at work, after receiving a not-so-nice email from a nasty co-worker I became upset, and nearly blacked out on the spot. I KNOW this is not NORMAL, but is this a POTS-y thing? If so, can anyone tell me what causes it? Afterward, my head hurt terribly, and I felt weak and tired and just sick to my stomach like I was going to be ill... I still feel really poorly. Blah. Stupid nasty co-worker. Gonna go lay down. Any insight will be greatly appreciated! Mary

I had to do a double take looking at your post- my name is Mary P too! And I'm with you all the way on fighting docs. I have been fighting with multiple docs since September (which is nothing compared to some here) and just a few weeks ago found a doc who actually believes something is wrong with me... it can be the worst part of all of this- being so ill, but not being believed. Welcome to the board- you'll find a lot of great support here, from people who really understand what you're going through. Mary

Add me to the club- my symptoms get way worse at "that time of the month". Both before and during. I'm on a beta blocker that keeps things pretty well in check the rest of the month, but the week before and during can be hellish... Sorry you have to be a member of this particular club, but welcome! You'll find lots of great information on this board, and tons of support from great people who understand what you are going through, which is so nice when most people have no idea what its like living with what we live with. Mary

Oh Morgan- I'm sorry to hear things are bad right now. I'm sending you great big cyber-hugs and hoping that things get better for you. Come back to us soon! Mary

Ernie- yes, I had a TTT done in November. I did not pass out, but blood pressure and heart rate went up, and I became very ill (especially after the isuprel was given)... doc was testing me for neurocardiogenic syncope, and since I didn't pass out, he classified the results as "normal" even though other medical professionals that I've shown the results to think they are anything but normal. Just trying to get through day to day for now... Mary

Thanks again for asking about me... I've been off work the last 2 days, and it was SO nice to just rest. I find that early on in the week, I feel ok, but after a few days of pushing it, I start feeling really bad. Thursdays and Fridays are the hardest (I'm lucky that my husband has Fridays off, as I basically come home from work and go right to bed). I'm coping day by day. What else can I do? My biggest fear is that after pushing myself like this for too long, I am going to end up at the point where I can't do anything again. I don't want that. The appointment with the cardiologist went surprisingly well. He believes that I have "some form of POTS". So, finally somebody that believes that I am actually sick! I was not expecting him to say that at all. We did an echocardiogram and that came out fine- nothing structurally wrong with my heart, and the EKG we did was good too. Right now, I'm on Atenolol which seems to help keep things in check. I also take a multivitamin every day, don't know whether it helps or not, but I figured it can't hurt, right? Anyway, that's about it. Just plodding along for now. Mary

Oh morgan- I'm sorry to hear about this... I know it must be difficult for you. Is it possible that you might have an infection? The only reason I ask is because you say the problem is not when your bladder is full. Sending you big cyber HUGS. Mary

I have experiences very similar to what you've described also. As Morgan said, I also just ride them out. They are awful, and I hate them, but I know that they will eventually pass. Also, as Pat said, the adrenal fatigue thing could be an issue. My physical therapist had a book about it and had me take a quiz at one time to see if that could possibly be a problem for me. I was surprised at the result- I did have adrenal fatigue according to the quiz results. I wonder if there might be some kind of overlap between POTS and adrenal fatigue, or if it is just that the symptoms can be so similar... Anyway, I hope you can get in to see somebody sooner. The waiting is the worst... Mary

I had an appointment with a cardiologist today. He's got an impeccable reputation in this area and people really, really like him. We discussed my symptoms and the problems that I've been having and guess what? I HAVE POTS! Ok, call me crazy for being so excited about that, but it feels SO good to FINALLY have my illness recognized for what it is, and not be told that I'm just depressed or that it's all in my head. I was grinning from ear to ear when he said it, which took him by surprise a little. When I explained all I've been through in the past 6-8 months and that I had suspected this all along, and that I felt somehow validated to finally hear a medical professional agree with my assessment of what was going on with me, he understood. So from here nothing really changes. He's keeping me on the same meds, since they seem to be helping, and basically at this point he said it is just about trying to learn to live with it, which is what I've been doing for months. I feel like I've slayed the dragon though! Mary

Thanks for asking about me- I've been kind of avoiding the board lately because I've been so discouraged, and basically work is taking the little bit that is left of my energy. I'm working 6 hour days now, and it has been VERY tough. I struggle through the day to day stuff (tired, weak, headache, shakiness, etc.), but this past Sunday I had a MAJOR crash. I woke up and I could not be upright at all without getting horribly dizzy and feeling like I was going to die. I'm gradually "recovering" from that, I still feel a little off, but at least I can get up and try to manage. Seeing a cardiologist tomorrow, not that it will do me any good. I am so disenchanted with the medical field right now. Nobody believes that I am really sick, and it is so hard to explain to them that I may look fairly normal, but my illness can be truly debilitating at times... people just don't understand. Even the people who were my support system previously seem to be falling away. I sometimes wonder if my husband even believes me... I would give anything to have my "normal" life back. Sorry if this post is kind of negative. I'm just in a bad place right now... Mary

Thank you all very much- I do feel better now that I know what it all means. Least I feel pretty certain I'm not going to drop over dead anytime soon! I'm going to send the records over to the specialist's office- keep your fingers crossed for me that he will agree to see me without a referral! Thanks! Mary

If anyone thinks they can educate me, please feel free... Since I am basically fed up with the docs in my area, I obtained copies of my medical records, and am in the process of trying to get a specialist to see me. I was reading through my records, and found the results from 24-hour holter monitor, which my doc told me nothing was found, but here's what it says: "The underlying rhythm is sinus having an average heart rate of 99 beats per minute. A low heart rate of 46 beats per minute was seen at 07:38:49. Maximum heart rate of 156 was seen at 15:09:28. The longest R to R interval measured was 1.8 seconds at 07:38:50. Two supraventricular ectopic beats were recorded. These occurred as isolated atrial premature contractions. 34 ventricular ectopic beats were recorded. All of these occurred as isolated premature ventricular contractions. There was some bigeminy noted. The patient reported symptoms of dizziness on two occasions and on both occasions the rhythm was sinus, though sinus tachycardia was present with a rate of 102 during the first episode and 124 with the second episode. At the time of maximum heart rate, the patient was without symptoms." On the day that I wore the holter monitor, I was only mildly symptomatic, and so I am surprised that they found all of this. Can you tell me what it all means? Thank you in advance. Mary

I've noticed a "weird" feeling in my throat too- I mostly notice it when I'm trying to swallow meds (they tend to get stuck, which I've never really had a problem with before). I could swear I read something about swallowing changes and POTS, but I can't remember exactly what it was... sorry. I hope somebody else can be of more help! Mary

That's really great to hear Morgan, especially after your son was denied... I'll bet you feel relieved to not have to worry about that for now! Good luck to your son with working- I've only been back 1/2 time for 2 days now, and I'm feeling pretty rough... Mary

Congrats on finding a doc who isn't a complete bonehead. I'm sure you were so relieved! Mary

Thank you all for the kind words. It is really nice to have people who do understand what I'm going through. Since I have no choice, I'm going to give it a go, maybe things will be ok. Morgan- I'm sorry to hear about your son. Unfortunately, in these kinds of situations, the decision making power is almost taken from us, because we need income to survive. We can't decide to remain off work when we are too ill to work, because we cannot afford to live with no money. It's a kick in the pants for sure. I'll keep your family in my thoughts, maybe something good will happen from this. Mary

My current doc is not willing to extend my leave any longer, even though I have had virtually no improvement in months, and so it looks like I will be forced to return to work on Monday. I'm terrified that I will be pushing myself too hard and I will get much worse again. I don't know what to do, and frankly the anxiety alone is making me feel 10x worse. I just want to cry. Thanks for letting me vent. Mary

Congratulations to you! Mary

I'm so sorry to hear that your little grandbaby is not well. I will say a prayer for her to get well soon, and hopefully have no long term effects from the illness. I can't imagine how scary this must be for your family... As far as you- I would definitely check with the doc. Just getting a respiratory infection is hard enough for POTS sufferers, and so something like this would be that much worse... hopefully you'll dodge the bullet and not come down with it. Sending big cyber hugs your way. Mary