morgan617

mesumeh, they don't deny I'm not feeling well, they just say it can't possibly be from my heart, as my rate doesn't go as high as 180 and stay there, and my runs of v-tach are benign. I have a pace maker and therefore, it has to be something else. Maybe it is something else, but they are completely invalidating that I could be symptomatic from arrythmias that don't bother other people. I think we are too complex for them to make judgements like that, and that is what annoys me. I have more than POTS going on, so don't deny that many factors can be involved in feeling worse, but I can't discount that I no longer tolerate even minor arrythmias. I just think they should be a bit more open minded. I try to look at everything from 360 degrees, out of necessity. But if I cut my arm off, I'm going to guess it's what's causing the intense pain I'm in, and therefore, if I am having a lot of arrythmias and feel like hello, I will also guess it's from those. Why I am having so many more arrythmias is a different ball of wax.....I have been dealing with this office for awhile, I never call them, as a rule, because it's been pretty useless. I will be asking the manager if I can switch to a regular cardio (I see an electrophysiologist, how ironic is that) but most of the offices here won't let you switch doctors in the group. We'll see. But thanks for your input. Thanks for everyone's input. morgan

He might have requested a duel at dawn if you'd hit him with your stockings! I had a doctor tell me there was no such thing as inapropriate sinus tachycardia, 3 days after ablation for it. Tachycardia 24/7 was perfectly normal....gosh and I spent so much on that procedure. My favorite is still the one I read on some records I just got. I had a very anxious flat affect. Maybe my stockings were too tight... seriously, sorry you have to go through the ordeal of finding another doctor. I have yet to find one that doesn't believe I'm 5% sick and 95% crazy. They MAKE me crazy.....morgan

I think you are right tearose! Thanks for the link. Great minds think alike you know.. morgan

tearose, I am the same and I think it's that letting go of things feels like losing another part of myself...like my license. That was a biggie, but even giving up the small things now, feels like big things. I'm not sure I have any big things to lose any more, so the smaller things seem more important. I'm not sure I'm making sense, but I do totally understand what you mean. I've been slip sliding for a year now...oh what a slippery slope it is...totallygetsitmorgan

I'm a perpetual popsicle and it sounds like a great idea. I have to keep our house at 77! Every one is cooking and I'm still whining about the cold. We just got a heating bill... so I need to find something to help. My muscles literally paralyze if they get cold. Dave bought me some rice filled booties and mittens and they help with those, but a cool breeze down my back will finish me off. You can't wear them all the time because they are stuffed with fragrant rice and my dogs think I'm a stuffed turkey... The link would be great....our average temp in December was 22 I think and it snowed 20 out of 30 days. Holy cow. morgan

Glad it went well and they found something to treat. I also had a lot more ectopy from irritation for about a week. Feel better real quick...morgan

Tearose, my primary wants me to get a defribillator, as he is convinced one day these will be lethal, but the cardio just flat refuses. To even give me an event monitor. They did interrogate my pacer and it's showing weird stuff, but it's not 180 and sustained, so I can't have symptoms, the nurses words, not mine. That isn't "just a tachycardia", it's some weird rythm that is making me sick, but she disagrees, even though they haven't seen it. Yesterday, the echo tech said, it looks like everything is okay. I think she expected me to do cartwheels, and it's not that I want something wrong, but I do want a reason for feeling so bad. I know most of you get that. The interesting thing is, she said, have they bothered to look at your kidney function? So an echo tech is more on top of things than my doctors. I have been trying to get a referral for 6 months. Even though I have preferred insurance, the specialists won't see anyone without one. My primary talked to a couple of them and they said, it can't be renal, no reason to see her. Another diagnosis without seeing me or looking at my chart or blood work, which does indicate renal involvement. Scaredy cats, afraid they may have to say they don't know.....Sorry, to any doctors I may offend, I am pretty disappointed and sick right now....morgan

Most states require that they send documentation as to the results of the complaint, but it can take a long time. But you are right, they do protect each other. In my state, it's peers deciding the outcome of the complaint, so I never hold my breath on that one. I do believe the rules need to be enforced, the rules, not the malpractice insurance. However, I believe part of the problem with the insurance is peers allowing the really bad doctors to continue to practice. Sometimes I wonder what happened to "first do no harm?" We had a doctor here that already had a couple of big infractions, was still doing the same thing, on the third shot, got a penalty of having to go to a seminar that he had to pay for (oh my gosh, horrors) he is now under investigation for medicare fraud, of MILLIONS, and is still practicing while it's ongoing. His response? Why worry, they never do anything...unfortunately he is right. The problem is, he makes it impossible for the good doctors to do their jobs, but since they are the ones not holding him responsible, it's hard to feel sympathy. One bad apple blah blah blah, but if you've got good apples allowing the bad ones to work this way..expect some of the rotteness to overflow and harm you....morgan

Welcome! I stopped driving about 3 years ago after my first syncope. It just isn't worth the stress that I may hurt someone else. I just had a birthday Saturday and my license was due, they refused to renew it. I was upset for a bit, even though I didn't use it, it was a loss to give it up. Since my attacks can come with no warning, it might be different than most people, who have the time to pull over or stop, however, according to the laws in my state, if you have a seizure or any type of loss of consciousness, you automatically are not allowed to drive for 6 months. It's a hard decision to be sure. And it can be scary. A lot of people never pass out if sitting. I am lucky enough to have a ride if i need to go somewhere, not everyone is, so every case is different. Good luck! morgan

Kind of like once you get that conversion disorder diagnosis, it's all you ever have. I think I could go to our ER with a severed arm and I would still get it. I got an ER record from November, where I have a "very anxious and flat affect." HUH. I didn't realize that was possible. "I, of course, denied any psych problems," except I told her I had major depression, OCD, dysthymia, and anger problems with closed minded insecure doctors that can't admit they don't know what to do. Ah well, it's hard to be humble when you are perfect and can slide from one specialty to another as fast as a person with multiple personality disorder changes personas.....morgan

Welcome Harper, I hope you find what you need here, it's very supportive and safe. Many many many of us are on beta blockers. You may have to try a few different ones, or they may not work well for you, or make make you feel much better. It's very different with everyone. Just make sure they start you on a very low dose and titrate up. That's very important. Good luck sweetie..morgan

Sometimes it's day by day, and sometimes minute by minute. I am so sorry other people have to feel exactly like me. Oh for that elusive magic pill waiting out there for us..... I'm sure this is not the way any of us want to envision our new year. Hang on sweetie, it does get better...and sometimes bad. Good luck with the doctor! morgan

Thanks sophia, I felt like shooting him. Just a regular one. I'm sure it will be normal and then he'll be grumpy, but I can be grumpier than anyone, just ask the hubs and kids...

Good luck Angela, I hope they find some answers for you! EP study is a study of the electrical system of the heart. They thread a tiny catheter through the groin and into the heart and try to induce the rythyms that make you feel bad. If it can be fixed, if they find abnormal areas or extra nodes that are causing the arrythmias, they burn them. This causes scarring and hopefully stops the arrythmia. Some types can be cured and some at least get better. It's not nearly as bad as it sounds, they give you a whopping dose of sedatives and there's really no pain at all to speak of. I had one in 2003. You go home the next day. They can last from a couple of hours to several, depending on whether they find anything or not....hope that helps. beentheredonethatmorgan

I got a pace maker a little over a year ago. I am very sensitive to it, meaning, I can feel when it fires in the ventricles, and when it runs a check on itself every day, I can also feel that. It is programmed to do it at 11 pm. It has gradually gotten better, as far as symptoms when it's testing, but a few nights ago, I didn't feel it all, nor the last 2 nights. When I saw my cardio in November, I asked for an echo (he refused) and tried to explain that I was having some new really weird arryhtmia, that, although not overly fast, was making me very sick. Sweating (I do not sweat at all, as a rule) light headedness, nausea etc. Typically my arrythmias are more of a nuisance than anything that makes me sick. I was informed that when my rate went to 180 or above and was sustained, my pacer would record it and then and only then would he discuss them with me. I told him as symptomatic as I was starting to get, he would be discussing it with me at my autopsy. He laughed at me. I have developed swelling, weight gain, and a hacky cough, indicative of heart failure (not surprising after years of hypertension) which I think is part of the reason I am not tolerating rythyms well. My pcp finally agreed to get an echo when he realized my cardio just didn't want any part of me, except my pacer. That is Monday. Today, I called the pacer clinic, and told them about not feeling the testing. So they had me do an interrogation. You call over the phone and put a special magnet on your pacer and this machine takes all the info and transfers it to them. I got a call from the nurse, who said my rate has been jumping above 120 (der) but the pacer checked out fine. I had lots of arrythmias, but since I had nothing sustained at 180 or above, I was fine. I told her I was not fine, as I am getting really symptomatic with them and she talked like a fricken robot. So my point here is...and I do have one...who decides whether you are symptomatic and what will make you symptomatic, and what one person may not even notice, another person may feel horrible with? Since it's relative, should I be ignored, because someone else might be asymptomatic, and I'm not? If you are supposed to be asymptomatic and some rythyms are "benign" does that mean if you fall on your face and get really sick, it shouldn't be treated, because a "normal" person wouldn't do it? Just wondering about this. idofeelitmorgan

Dawn, I'm so happy for you! I have adopted 2 platoons and have 3 penpals. Well, I write them and I have heard back from two of them. 2 are now back home, and so I send to the platoons, care packages and stuff. Tell your son he is the BIGGEST HERO in the world! What a wonderful Christmas present! morgan who's so proud of our military

Maxine, sorry everything just seems to snowball doesn't it? I have a terrible time with my teeth and just despise going to the dentist. Like you, I never minded it until the lidocaine just stopped working at all. I am glad they can save the one tooth. I know it's been a really tough year for you and I am hoping this next year is better. Sending you hugs...morgan

I started valium in 1995 and I would assume I couldn't stop cold turkey, simply for that reason. I have never developed a tolerance, take the same dose I always have, or less, it does take a long tapering. Some of the benzos have a much shorter half life than valium or klonipin (sp, sorry) and that probably contributes to problems getting off it, also. I am not sure what you would take with it Art. An ssri might help in conjunction with it. BTW, my son finally got off the effexor and seems to be doing fine. That is not a benzo and he had a horrible time, so I guess it's relative, anything can be difficult. It's in our make up I guess. morgan

I've noticed lately that I always feel better semi reclined and have developed that dreaded little chf type cough. I haven't had an echo in awhile, so guess I will look into it. It's just finding a doctor that will order one for me. It's hard for me to lie flat, but hard for me to be straight upright also. Going from lying to standing is pretty difficult. I always have to sit up for a bit...morgan

Sorry you have had to join this club. It sure doesn't help with the fatigue factor does it??? But just look at all the wonderful people you in good company with!!!! morgan

Just because the structure of your heart is normal, it doesn't mean the electrical system is always going to work perfectly. I have episodes on a daily basis. I have yet to really get used to them. It's not like you get a lot of warning most of the time. So it's kind of like being blind sided every time you have them. Mark, I am glad you said that, about "feeling" it. I've had doctors tell me (a cardiologist of all things) that I was fine because it wasn't tachy. Well it was hyperandrenergic and therefore, even though not fast, it was beating so hard it made my eyes pulse and they could SEE it on my chest and on my carotids. I think I hate those more than anything, those really forceful beats, whether fast or not. I never ever drink alcohol and virtually no caffeine. The last time I had a wine cooler (six years ago) I felt so awful, I've never drunk again. You need to decide if it's worth feeling so bad, and for me it sure isn't. I have enough health issues without triggering them I guess. It is possible to have a wonderful holiday without alcohol. But I've never been a drinker, so it's not difficult for me. How pathetic, never drank, did drugs, or smoked, and look at this body...maybe I should have been more wild....hmmmm morgan

I have had two therapists ask me not see them any more, because I am so exercise intolerant, but I don't know if that's really the norm. I have a disease that's under the umbrella of Muscular Dystrophy on top of POTS and think that may be more of the problem in my case. You won't know till you try whether it will help you or not. You just want to make sure the therapist understands that "I have limitations" is relative. I told the second therapist that the first one said I was too weak for P.T., and he burst out laughing, saying that was absurd, it was the reason for P.T. After our third visit (he came to my house) he said I was too weak for it. And apologized. So the communication lines have to be wide open. Everything with this illness is so individual, but you just have to try. The worst that can happen is, it won't help and you may feel worse for a bit. Which is not fun, but at least you know. Good luck sweetie... morgan

There are a lot of posts about this, if you click in the archives. Personally I am far more cold intolerant, so never have had the need for one. At the bottom of the page there's a place you can insert cooling vests and all the posts will pop up. morgan

I used to get them quite often and they always went away on their own. I haven't had a problem with them for a long time. My doctor said they were just itty bitty cysts and would go away and they did. morgan

What I will not do is flame here. What I will do is be proud to be an American, flaws and warts and all, have my own opinions, regardless of whether they are popular with the majority or not, and respect other people's rights to their opinions. That is really what makes this country the great place it is. Love it, hate it, and if you hate it enough, just go live somewhere where else that you feel is better. There is no utopia any where on earth, that I am aware of. You either believe people or you don't, and that is everyone's right. What I can do is believe what I believe and not judge you for believing something different. This will be an endless, fruitless and uncomfortable cycle I choose not to engage in and I choose to try not to make others uncomfortable with it. Or my beliefs. morgan