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Everything posted by southbel

  1. Look for the detergent called "Win". It's a sports detergent specifically made for sweaty clothes. My husband works outside in very hot heat and this is a problem I have had to combat. I wash his stuff in this and it works. There's some other brands that make sports detergents but that's the one I recall off the top of my head. Key is looking for one that's called sports detergent.
  2. Never have tried that but unfortunately it really is a complete pain to get your records, especially if you have seen multiple ones as most of us have! Interested to know if the insurance company helps though. My best to you!
  3. Hmmm, well I can, at times have an issue with being rather haughty and dismissive myself. In situations like this, I have a tendency to get rather sarcastic and passive agressive. I have been known to say "well, I thought you were up to date on the latest research. My mistake. Perhaps you can point me to a colleague that is indeed more informed on my issues?" This is almost to the word how I have responded in the past. I have seen primarily two reactions: one of equal disdain or one of a conciliatory nature. My husband, who often accompanies me to these appointments, just starts shaking his head if the doctor tries the disdainful approach with me. It really is about delivery I think. Something us Southern women have learned since birth, I believe, is how to deliver withering insults wrapped in a polite and charming wrapper! So, in short, I think you should simply call him on his poor skills but remember to do so without emotion. Do not give him the power of your tears!
  4. It depends on each doctor's policies. As an aside, some doctors will charge for each sheet copied from your record. Due to HIPAA, they will also require you to sign a release. Honestly, some offices make it very, very hard to get your own records. Now, I go to a system that each doctor is associated with a private hospital here in town. One of the advantages of that is the system uses electronic medical records and I can just go to the hospital's central records office to get all of my records for each of the doctors in their system. However, I still must go in person due to HIPAA. Do not know if this answer helped at all because truly the answer is that it depends but you can be sure that HIPAA regulations will be a part of your getting access to your records.
  5. One of my worst symptoms. I've already lost 30 pounds from it. Add the nausea and ugh! I have noticed that when I take a Benadryl, it seems to help some. Wonder if that signals some kind of mast cell issue - dunno. My doctor has me taking Flintstone vitamins now because I keep testing low on various vitamins, etc. I am sure it's due to my very, very overactive bowels. I could pretty much live with the tachycardia if this would go away. It's really one of the things that ties me to the house the most because it can come without much warning and for no seeming reason.
  6. They're called ocular migraines. I get them as well, which coincided with my POTS onset.
  7. Wow, my first thought on reading this is what a major HR mistake and in writing too! At the end of the day, you must take care of you. If you don't take care of yourself now, you might end up being out of work longer if you wait. It's not your failure, it's a health issue plain and simple.
  8. Oh if a doctor said I was wasting his time, I would respond, and yet you're still getting paid, so who is wasting time again or is it just my money you're wasting? Seriously, I would not let anyone speak to me that way. I would definitely not go back and make sure your rhuemy knows you refuse to go again and why. Otherwise he will continue to refer to this doctor. Wouldn't cast aspersions to make it seem personal, simply say that you're not going to visit a doctor that says you're "wasting his time" and thus found his professionalism lacking in your visit.
  9. Honestly, anxiety is a diagnosis of exclusion but it seems so many doctors want to make that a first diagnosis without testing or meeting the criteria. Not to mention most of the doctors that do that aren't even that well-trained in the diagnostic criteria for anxiety. My suggestion would be to just ask them how they came to a diagnosis of anxiety. Make them defend their diagnosis. Ask them the hard questions (e.g. why, when anxiety is a diagnosis of exclusion, are you assuming facts not in evidence). I have found when you make them actually think critically, you get the best results.
  10. I am so ridiculously Type A that is immediately apparent to anyone that meets me. I was the person that was always striving for more, regardless of my accomplishments. It wasn't enough to get one degree, I had to get four. Had to graduate at the top of my class. Wasn't enough to do well at my job, I had to be the best in my field. Wasn't enough to publish more than my peers, I had to publish the most. This carried over to my parenting, my home life, and my marriage as well. I used to literally love that I could get everything done on a minimal amount of sleep. I always had an intense drive to be the best and just do more. Thus, it makes me wonder on this correlation as presented in this poll. I think most doctors would be led to believe our Type A personalities caused our POTS. I am inclined to think that our Type A personalities are being caused by the same mechanism that is causing our POTS. It is almost as though our bodies, subjected to intense adrenaline that creates our Type A personalities, finally says 'enough' and we develop POTS. If it was simply overworking our bodies, our adrenals would show the fatigue but for me, at least, my adrenals test perfectly fine. Thus, something else is driving this inappropriate adrenaline response.
  11. Most hospitals live and die by Press-Ganey now (patient satisfaction). Suggest a letter to the hospital describing your visit and care (or lack thereof). Did the ER doctor indeed lie about speaking with your cardio?? If he did, that would be something I would add as well. Believe me, hospitals take complaints seriously.
  12. Went to the cardio today. He is concerned that I am not tolerating the Metoprolol and thus changed my meds again to Verapamil since I've had bad luck on Beta Blockers thus far. Just took the Verapamil so I'll see if it makes a difference. The reason he thinks the Metoprolol might be to blame is because the intense jaw pain started at the same time he upped my dosage since the lower dosage wasn't touching the tachycardia. I'm very worried about the Verapamil after reading some on here but I figure I'll try it. Shoot, they're getting used to treating my anaphalaxis in the ER from so many of my other med tries. Guess it's there if I need it.
  13. I've been having a pretty tough time lately between not sleeping normal hours due to adrenaline rushes and just a pretty good flare of my tachycardia/lightheaded symptoms. One thing that has driven me absolutely nuts of late is the jaw pain I've been having. Feels like a very tight muscle issue. I would say TMJ from the symptoms but I am not a clencher, grinder, etc. This has coincided with the start of the adrenaline rushes. Has anyone else had this problem? I've noticed that Benadryl seems to help with the pain. Ibuprofen hasn't touched it.
  14. Yeah that seemed to be the key for me too. They're pretty quick to say stay home when you tell them you're a fainter.
  15. I got a jury summons and I didn't say that I had a medical condition that prevented me from serving because of the same issues. Instead, in the 'other' information section, said that I would be happy to serve but I might pass out at random that requires ER medical care. If they were fine with that, then I was fine with performing my jury duty. Put all my doctor's names and numbers on there too. Oddly enough, got a call saying I was excused.
  16. At this point, very little has been done to help with these adrenaline surges. Thus far, my cardiologist has only recommended natural therapies including Melatonin and Chamomile Tea. I have an appointment next week that my cardiologist already told me I would get another holter monitor if the natural therapies did not work. I will ask him what other suggestions he has because I have not slept through one night in over three weeks now. It's making functioning on a daily basis impossible. I am unfamiliar with Dr. Cheney's protocol. To put it mildly, you need to dumb it down a bit because I honestly have no idea what you're talking about! When I was first diagnosed with POTS, my initial instinct was a bit of denial so I am not nearly as well versed on the research as other members on this board. I'm learning but feel a bit behind the curve here.
  17. Thanks - been suggested on my other thread about my lack of sleeping. Just need to convince my cardio is all. I'm also on a very, very small dose of Metoprolol. I wonder why POTS makes us all so sensitive to medication? I know, for a fact, that I wasn't this way before the onset of POTS.
  18. No, you are not alone at all! I was the same way, so believe me, I understand. I've tried to do the mind over matter thing with this - yeah - that didn't work out at all!
  19. Still not sleeping. Dear god, will I ever sleep???? Have an appointment with the cardiologist next week. He's going to give me another holter monitor - sigh.
  20. I completely understand this feeling. When my tachycardia gets going really bad, I think to myself, a heart is not meant to go this fast for this long. My cardiologist has done every test in the book, including a cardiac calcium score test due to a family history of early and massive fatal heart attacks in my family. The only one that managed to catch hers early in my family is my aunt and she only caught it because she also has autonomic issues (which caused me quite a bit of fear too!). He was very understanding of my fear and did all the tests to assure me that my heart was healthy (I think he was assuring himself too given my family history). But, even with all that, I still have that fear in the back of my head. I just can't help it. You hear on news programs, from doctors, etc that you should listen to your body. Well, my messed up body is telling me 'holy crap!!' That doesn't help at all. One of the functions of our autonomic system is our body's ability to give us clues when something is wrong (e.g. feeling of impending doom). I think with our messed up signals, this is a natural thing to have. I keep telling myself that, sometimes over and over again.
  21. I am that patient and have been for many years. In fact, just recently I skipped all the specialists appointments I had because I was just tired of going to doctors. I find a bit of brutal honesty is best in these situations and heads off the 'scolding', which is something I detest. I literally told my cardiologist that I am notoriously non-compliant and while I do not do it on purpose, I have a very great understanding of my self, my habits, and my willingness to accept large changes in a short time period. After that, I said, can you still work with me based upon that? He laughed and agreed to help me. As a result, I've had a fantastic relationship with him from the beginning. Also helps when I tell him that I have or have not done something, he believes me because he knows I'll be truthful if I didn't try a suggestion. For those doctors that try to deride me or say 'well you aren't willing to change', I fire immediately. If I tell them that I can't drink 6 gatorades a day, I can't and no amount of scolding or condescension will change that. So, I guess my suggestion is...go forth and be bold!!
  22. I tried Propanolol first and did not do well at all on it. Seemed to increase my adrenaline surges. My cardio put me on Metoprolol and that has worked pretty well with decreasing my tachycardia from standing, etc. Now, just to get something to decrease my nighttime adrenaline surges. I am also a person that reacts to just about every medicine. I get the same fear. Just make sure you have Benadryl on hand would be my only suggestion.
  23. . Me too! Eating makes me feel awful, but if I don't eat for a while it makes me feel bad too. I'm on this weird schedule where I won't eat for a day and then if I feel better after that I will eat too much which makes me feel bad... Ugh vicious cycle. Count me in that group too! I get where I don't even want to look at food because of how bad I feel after eating. Then when I finally do eat because I just get too weak, etc, it makes me feel awful again. I am starting to have a bit of a hate relationship with eating because of it. Although, I have found yogurt seems to be kind to me for some reason.
  24. Before I was diagnosed with POTS, I kept thinking I must have a brain tumor or something because I was so off balance. Couldn't have passed a field sobriety test stone cold sober. Now, I recognize it and understand that it's all part of the ever annoying symptoms I have.
  25. Definitely something I've dealt with as well. I have adjusted my pillows and sleeping position to help. Oh and I fully advocate the use of heating pads. That's made quite a difference for me.
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