turtlefairy5

Thanks again for the responses, everyone. HoudiniCat, I'm a little relieved that your doctor, too, prescribed the .1mg twice daily. I'm glad to hear too that I'm not the only one who was hesitant. And I'm glad to hear that it's been okay for you. I'm still hesitant. Especially after reading this info article (scroll down to the part about Florinef). That and reading the various dosages here, I felt that my doctor was immediately putting me on the higher (highest?) end of the range of doses, and I wondered why. I didn't like it. The last dose I took was yesterday morning. Too, I have a cold right now, which is making me feel miserable. I read somewhere that Florinef can affect the immune system and the body's ability to fight infection, so that freaked me out, too. There's just a lot of stuff to be freaked out about about this drug (not to mention that I'm a bit of a hypochondriac). It bothers me that my doctor seems to have put me immediately on the higher dose, and it bothers me that he didn't really mention any side effects, even when I asked for a run down about side effects - he seemed pretty non-chalant about it. I'm concerned about the potassium thing too; the website I linked mentioned taking a potassium supplement (regardless of blood test levels) but, again, the cardiologist didn't suggest that, he just ordered blood work to check it. I'll probably, maybe start the Florinef again after I get over this yucky stinking cold mess, though at a lower dose. Grrrr. Frustrating medical treatment. I don't know how to tell my concerns to the doctor. I don't want to come across as questioning him, but, I guess that's exactly what I'm doing. I've just learned the hard way to be, what?, obstinate, I guess. ya know? I'm also dealing with all kinds of other meds for other (mental) conditions, serious no-kidding drugs that I worry about taking too, and it's difficult to know how to balance all this medication and trust the different doctors or even the pharmacist to know these drugs and how they mix and the affect they're going to have, on the other drugs or one of my conditions, or just my physical or mental health in general, short or long term. Thanks for letting me worry and rant, Amber

Thank you, THANK YOU for all your responses! I'm feeling a little bit better about things. Still worried 'bout the Flo'nef, especially because my dose seems a little high comparitively to all ya'll's. Hmmm... We'll see how it goes. I know that I certainly don't need psychosis - I'm mental enough as is (note my signature). I'm just going to have to get over the blood work. Stiff upper lip and all that. I've done it before, I can do it again. Nothing like a little exposure therapy for a phobia. I don't know why I'm so scared of it. Anyhoot, thanks again... Amber

I have some questions concerning my struggle with POTS. If anyone can weigh in on any of these, I would be grateful. 1) My doctor just prescribed Florinef .1mg twice daily. I'm anxious about taking it because of what I've read here on the boards concerning side effects, and because of the long list of side effects I read when I Googled the drug. Among the rather long list was anxiety and agitation. I already have a problem with both of those, so I'm concerned. I'm also concerned about the physical side effects, as well as the blood work - I hate needles. I go to extremes to avoid blood work. So, can anyone give me any encouragement about the side effects and blood work? How often do you have to get blood work? How bad are the side effects? 2) When I get tachycardia and fatigue while standing, walking around, trying to go about normal life, I also get hot-flashy. I'm 29, not really in the realm of menopause. Does anybody have heat waves/hot flashes/general feeling of being to warm with their POTS symptoms? 3) I know the normal resting heart rate is supposed to be somewhere in the 60 - 70 bpm, but what is the normal "active" heart rate? Not the aerobics/exercising heart rate, which I think is supposed to be around 130 - 140 bmp, but the heart rate of someone who is, say, taking a shower or unloading the dishwasher? Mine is usually in the range of 100 - 120. Is that range of heart rate what's making me so tired just trying to do everyday things? Thanks, Amber

Thank you, Thank you, Thank you! I was doing a search for another issue, but I found this thread. I cannot count the number of times I have come to this forum and felt so validated. As awful as the symptoms are, it is such a relief in a way to know that others are experiencing the same thing, that I'm not alone, or that I'm not just weak or crazy or hypochondriac or...whatever, ya know? Though I wouldn't wish this plight on anyone. For as long as I've been struggling with this issue, I've been dealing with feeling worse - weak, shaky, tachy, woozy, hot flashy - after taking a shower. It is so frustrating because, for me, taking a shower means I'm about to go out somewhere (otherwise I don't bother), so the last thing I need is an increase in symptoms. SO so, frustrating!!! I get out of the shower, and the first thing I go to do next is my make-up, and my hands feel shaky and unstable while I'm trying to apply eyeshadow, mascara - things you need a stable hand to do, ya? I also feel SO HOT, long after I've gotten out of the shower, like I'm having an enormous heat flash. I hear the advice about taking cooler showers -- such a bummer, though, because I usually like the water as hot as I can get it. crapola. yeah, hot tubs are out for me too, which was a bummer not only to me but also to my girlfriend at the time (now ex-girlfriend, partly because she couldn't deal with my illness) - she had a hot tub and liked to enjoy it frequently, so that was just one more thing that I couldn't do with her - she resented it. Amber

I have been taking antipsychotics for several years now. I've read on this website that some antipsychotics can aggravate POTS symptoms, and I'm wondering if this isn't the case with me. Granted, I first went to the emergency room with a rapid heart rate at a time when I wasn't taking any antipsychotics, but I'm wondering if there is anyone else here who is dealing with both POTS and mental illness who could give any advice on coordinating your medications? I have depression, anxiety issues - suspected bipolar disorder, also PTSD and PMDD. Often, when I ask my cardiologist or my psychiatrist how the medicines they are prescribing will interact with my other medications, or my other diagnoses, neither knows. I often have to remind my psychiatrist about my "heart problem." Maybe I just need a new psychiatrist. He's recently switched me from Zyprexa (one antipsychotic) to Geodon (another antipsychotic) because of the weight gain with the former, but I'm concerned about the effect the latter will have with my tachycardia, especially after reading a little bit about it. Anyhoot, if anyone can relate or offer advice...

This past March, I had to leave my position as a middle school language arts teacher. I was exhausted, sick all the time, and finally landed in the emergency room. I filed for disability, and in the meantime am working as a private violin instructor. Thank God for spare talent. I'm working on a novel. I blog. I clean the house where I'm living, do the laundry. A lot of the time, I feel like a purposeless blob, a waste of bone and skin tissue. I wonder what was the point for me to exist if this is the way its going to be. I'm depressed a lot, but try to hide it. So, that doesn't really help you, but I can say I know what it feels like to be held back because of your illness. Sorry for the downer post reply.

Thanks for all your responses! It is starting to feel better today; much better. I hope that this doesn't happen again for a long time, because the pain really is dreadful. Allergies, tonsils, really tough bacteria...thanks for giving me somethings to consider. If this does happen again (and again, and again) I'll take the issue to my doctor rather than suffer. Thanks again!

Last year when I was teaching, I kept getting these cold/flu like symptoms, feeling run down, loss of appetite, feverish, runny nose, but the worst symptom was a tremendously sore throat. It was so painful to swallow. When I looked in the mirror, I could see how inflammed and red my throat was. I went to the doctor, and when she looked she said that it looked like textbook strep throat, but the test came back negative. I learned to just suffer these episodes, eating a lot of popsicles and ice cream, until they were over. When summer came, I stopped getting sick all the time. Now, it's back. Sore, inflammed, red, painful throat. I feel run down, have no appetite, feel feverish, have a little bit of mucus going on in the back of my throat, but the worst thing by far is this throat pain. It is almost unbearable. I'm assuming that I should just wait it out again, but, if this is going to be like last year when I had one cold/throat infection, or whatever the heck this is, after the other, well, that's just going to suck. I've read that sore throat can sometimes accompany Chronic Fatigue Syndrome, but I can't believe that they mean something this bad. I feel like I'm getting throat infection after throat infection. Does anybody else here have chronic throat infections like this? Is this part of Dys/POTS? Somebody tell me there's an answer!

I don't have tinnitus constantly, but I do experience it from time to time. Sometimes it is the typical high-pitched, sustained beep, other times it is a fluttering like bird's wings flapping in my ear. Strange, but true. I am sensitive to noise in that it makes my anxious. I feel overstimulated and desperately want quiet. I hope this gets better for you soon; I don't know much about Meniere's. Actually, I've never heard of it!

I've a history of GERD, and I've wondered too if it was POTS/Dys related because I've noticed that others on here deal with it. I don't have any new suggestions other than that if it is bad enough, OTC meds may not help heal the damage. You might want to go ahead and check in with your doctor. hope you feel better soon.

Today I went outside to pluck my eyebrows, better to see them in the sunlight, and I wasn't outside five minutes before my gut went haywire. It was warm outside, and it was as if the heat had caused my bowels to puree. Sorry for the description, but I'm wondering if anyone else's GI system has this sensitivity to heat? I know that a lot of us have temperature dysregulation issues, so I didn't know if this reaction was part of it. I've heard that dehydration in the heat can cause diarrhea, but I was really only outside for about five minutes. I have a history of GERD/bowel issues so....I dunno... Can I get an amen on this, anyone?

I would second what Julie just said. When I take it easy, I don't feel as awful all of the time, but if I try to be "normal," ie work a full-time job, handle stress, etc., then my symptoms flare up and knock me back out of the game for a while. I don't know if you could call feeling semi-okay when not engaging in a normal life "remission" but, my symptoms do abate.

Thanks, everyone! warm-fuzzies.

thanks again!

I got it! Thanks everyone! I'm so excited.

Hi everyone, I am going to meet a guy this evening to discuss teaching private violin lessons for a small music school. I can't express how perfect this opportunity would be for me on so many levels. Not only would it restore my confidence as a contributing member of society, provide me with at least a little income, and allow me to work part time hours in the afternoon, but it would also allow me to reconnect with a skill I had pretty much abandoned. A few months ago, I sold my violin because I needed the money. Before that, I had quit my job as a middle school language arts teacher, I profession in which I invested a lot of time and effort, and for which I was educated, because I was too tired to do my job. If everything works out, this job would do so much for me. So please keep me in your thoughts/prayers/etc. this afternoon. Thanks, Amber

Hey ya'll, I was reading someone else's post about a kidney infection, and it made me start to think about one of my scariest health scares, and I have a question for you. Back in February, before I was diagnosed with POTS, but am convinced that I had POTS symptoms for years before that, I came down with a flu/viral infection. My fever was 103 and my heart rate went into the 190's. I do NOT want that to happen again, yet I know that when we get sick, come down with colds, etc. our bodies, including our hearts, work harder to help us fight it, thus, I'm assuming, the even higher-than-normal-high heart rate. My question is, when ya'll feel like you are coming down with a cold, or a flu, or any type of such infection, how do you handle what that may mean for your POTS symptoms, especially the heart rate? It really, really scared me, and I don't want to end up in the emergency room if there is something I can do about it. Take an extra dose of Metoprolol? Tylenol around the clock? 2000 fl. oz. of water/gatorade? Please give me your regimen for when you're sick on top of sick. Thanks, Amber

I've had the same thing happen to me. Seems to be random. Doesn't help that my girlfriend has a big, huge screen tv that is, well, a mighty presense in the living room. If we watch a movie with the surround sound, sometimes my heart rate will jump and I'll get the anxious/malaise feeling that I hate so much. Same thing if I'm riding in the car with loud music. My girlfriend likes to ride with the music loud, so sometimes that will set me off, too. I find that the heavy bass is the worst. That thumping rhythm makes my heart go right along with it, and it is not a very pleasant thing. It makes me feel like a goober, some overly-sensitive twit to be affected by these things. I try not to say anything because I fear that others will think I'm crazy or overly-sensitive or a baby or a party pooper, what have you. I just try to take deep breaths and get through it the best I can. My girlfriend and I just the other day had a conversation about amusement park rides, and I said pretty plainly, "I can't really do anyting that's going to make my heart race." She understood. I can't afford many of my prescriped medicines right now, including the Ativan, so no, I don't take more medicine to try and get through it. I hope you feel better soon. Amber

Thank GOODNESS! I am so relieved for you. That principal was acting crappy, and I'm very glad that there is someone who has some sense and that will stick up for you. It is a shame that that person wasn't your principal. Go you! Amber

I guess I should clarify that I feel all of those symptoms to a lesser degree all the time as well, but during what I'm calling an episode, they are all very intense to the point that I couldn't, say, type a post or a response on a forum. It is very much a world-stops-turning event.

I hear people on here talk about having an episode, and I've always wondered if I've ever experienced one, or atleast experienced the same thing that you all are talking about. I just had what *I* would call an episode, and it would help me if ya'll could chime in and give me a "Yes, that's it!" or a "No, we're talking about something different." When I have an episode, it feels like: - extreme, unusual fatigue - anxiety - scary palpitations - a general sense of feeling sick, ill, malaise, but not with any specific thing such as sore throat or headache - I've got to lay down right now - I can't even speak because talking, even one word, seems to make my heart race and my anxiety worse - sound, light, noise are too much, make me feel jittery/anxious, make my heart race; I need soft lamp light and soothing white noise - feel depressed - wonder if the episode is ever going to end - scared that I'm going to have to go to the hospital again because of the tachycardia - usually happens if I eat too much, have a full belly, or have had too much sugar, or if I'm exposed to too loud music or stimulation, especially thumping bass like when riding in a car - comes on suddenly and usually goes away within 20 minutes to a couple hours later So help me out guys; this is what happens to me - am I describing a POTS episode? or something else? I've considered reactive hypoglycemia and "simple" anxiety, but would love to know if I'm on the same page about what others are talking about when they say they've had an episode. Thanks, Amber

I, too, had increased anxiety when my symptoms started, leading up to when I finally realized that I may have POTS. I was a very, very bad case. I was taking ativan nearly every day, spending hours online trying to find out what was wrong with me. I was terrified of what was happening, why I was so fatigued, why my heart was racing. Having all those questions, not having a diagnosis, but knowing that something was wrong was a horrible feeling. Many days, I didn't even get up off the couch, much less leave the house. Today, my anxiety is much better because I am secure in the knowledge that I have POTS. Even though that is not really a great thing, knowing what is wrong, and knowing what I can do to make it better really helps. I'm not longer taking ativan every day, and I am trying to piece my life back together, priorty #1 being to get a job. So then, my anxiety was related more to my questions about my health, not directly caused by POTS. I would say though, that the physical sensation of tachycardia, I would believe, may in some instances cause anxiety. Tachycardia is a symptom of anxiety, and I think the reverse might stand, that anxiety might be a symptom of tachycardia. I hope your situation gets better and that your anxiety, whatever is causing it, abates soon. Amber

My fatigue and joint pain is much, much worse just before my period. I also have cravings for no-no foods, basically chocolate and dr. pepper. My remedies are rest, those heat-in-the-microwave pouches with seeds or beans in them for my aching knees and tylenol (since it doesn't aggravate my already perpetually aggravated tummy), though advil works better. I also have mood problems with my pms, to the point that my psychiatrist diagnosed PMDD, and I'm hoping that soon I'll be able to afford the SSRI's to treat it. In any case, I hope you find some treatments/techniques that will help you deal. Amber

When people are that off-balance, I think it is best to ignore them. Walk away, taking deep breaths as you go. Also, it always helps me if I mutter under my breath, "Idiot." Yes, "idiot" does nicely in this case. Amber

"I screamed. A lot. With much arm flailing." Cameron, Even in describing a stressful situation, your humor in your writing voice is lovely. Do you blog? You should. It's (another) place to vent your frustrations. I had an endoscopy (tube goes down the other end instead of up the, well...) back in April due to on-going acid reflux issues despite treatment. I was put completely asleep as well, as opposed to just being sedated. I was whacked out nervous, too. Terrified of the anesthesia. Did you receive a questionnaire to fill out for the anesthesiologist? If not, I think you should have. Maybe they will have you fill out something just before the procedure, or perhaps they will ask you questions before the procedure. In any case, I think you should bring up things like brady or tachycardia (which I'm assuming you have, like most of us) and/or sensitivity or allergies to any drugs. Although I'm not a doctor, I feel fairly comfortable telling you that everything will be okay. I was okay, and like I said, I was terrified as well. In the end, I was proud of myself for being brave and going through with it, which is more than I can say for the girl next to me in the prep area before I went in for the procedure; she had a big ol' hissy fit and they didn't do her procedure, they sent her home. BIG hissy fit. Everyone involved with me was super nice, and the procedure went fine. I woke up running my mouth, chatting up the nurses. lol. You'll be fine. Good luck! Amber