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relentless

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Everything posted by relentless

  1. thanks Jan. I didn't know that. Would whole milk have the same sodium content? I prefer whole milk.
  2. I got the results of my tilt and nuclear stress test. Failed tilt = drink more fluids/salt, zebeta 2.5 mg at night. nuclear = negative. Heart @ 73% capacity. Normal is anything over 50%. ????? I tried betablockers years ago and would just about pass out because they lowered my BP too much. I do NOT want a repeat of it. Seems like if you BP bottoms out you should raise the BP rather than lower it, so now I'm confused. I also get headaches and when I check my BP with my husbands bp monitor it's high. Wouldn't more salt make that a problem? After not seeing a doctor for 10 yrs and the same games of going in the wrong direction with medications, I am SO disgusted. I asked the nurse if the zebeta would cure my fatigue and dizzies that I have every day. She said, well no it won't cure everything. So...***?!! How about telling me why I have these nasty symptoms and give me some direction to cure them. I am so disgusted!
  3. It was recommended that I drink Gatorade when I had my tilt test, but I can't drink that stuff, or soda, lemonade, etc. It's too sweet and makes me gag. I used to love sugar so much that I could skip the meal and go straight for desert, but now I literally can't stand anything sweet. My husband buys foods that he thinks aren't too sweet for me, but one bite and have to throw it out. When I put a small bag of m&m's in the freezer it takes me a year to finish it. My taste buds changed big time. I do drink alot of bottled water, eat salty foods, and limit my intake of high potassium foods potatoes and broccli. I drink occasional milk and black coffee in moderation. My BP flucuates from high to low, so I'm concerned about increasing my salt intake. It was 135/96 last night and a few hours earlier it was 94/66. How in the world can it flucuate like that? sorry for the thread drift.
  4. thanks OLL! I will definitely start taking B vitamins. Years ago I got on a vitamin kick and my body really got out of whack. I've since learned to only take multivitamins to keep them balanced. The only other part of my body that swells is my feet/ankles.
  5. I don't know how you guys stand having the tests mulitple times! There is no way I will ever subject myself to those tests again. It's time for them to **** or get off the pot. First it was Sick Sinus Syndrome, now who knows. Either they're sharp and put 2+2 together or they're not. I have little patience if they're not. Doctors love to run endless tests when they don't have an answer.
  6. I was feeling pretty good except for lack of food-water-and coffee. Had the tilt test and thought "this is going nowhere". I had instant nausea which progressed to a headache. I'm usually dizzy and get periods of blurred vision every day, so who can tell if you're "more" dizzy or not? I have a neuropathy and weakness in my legs so they had to tense really tight to hold me up. The tech said 14 more minutes, and if they didn't get the results they were looking for, they'd give me a shot of nitro (?). I was getting really hot flushes and more dizzy. My BP dropped to 90 or something and then it just disappeared and the machine went off. He tried twice to get a BP and then quickly lowered the table. I thanked him for not waiting till I threw up or passed out :-) It was worse as the table was dropping and then he lowered it below flat so my head was down. I yelled to stop that's FAR enough, because my head felt like it was going to explode and awful nausea. I begged him to release the belts on my legs so I could bring them up, which helped. I don't know what my BP was doing then, but we waited awhile and then I sat on the edge of the table. It dropped again and the BP cuff got pumped up to 256 looking for a BP. omg squeezed the crap out of my arm. I told him to not worry about it because I always feel like crap and manage the best I can. I had another test. I told him I appreciated him not taking me over the edge and he said once my BP went to 80 they had all they needed, so I don't know what the test will tell them. He told me to rest, drink gatorade (no thx) eat lots of salt and eat a good meal. That was the end of the torture or so I thought.... the nuclear stress test I had an hour later was awful! They give you a dye and take a heart xray in an open MRI looking machine. My frozen shoulder was put where it doesn't go (ouchies!) while the machine did it's thing for 10 mins.... Then they took me out of the machine and injected me with adenosine (?) OMG OMG OMG!! I got dizzy and blurred vision and thought oh crap. That was nothing compared to what came next. My chest felt like it was crushing and I could barely breath. I begged them to stop with a few swear words thrown in!! It would come in waves and hit me again and again. Like an elephant on my chest. OMG did I swear for them to stop. "2 more minutes" "40 secs more". It took a minute or more to wear off when they were done. Then they waited about an hour and took more xrays. Weird because I thought the point was to xray at rest and again WHILE my heart was under stress. I sure hope they knew what they were doing and got the results they need from both tests to figure out what the heck is going on and help me, because I don't EVER want to go through that again. I loaded up on coffee and salt at Wendy's on the way home. Man I couldn't wait to get out of there.
  7. Funny you should bring this up, b/c I know now that my periods from h-e-l-l with white outs, etc were autonomic reactions to my period. I had 3 surgeries for endo. The last one had so much scar tissue/endo that they had to cut my bowel loose from my abdominal wall. The scar tissue remains to this day.
  8. I get that wiped out on a dime exhaustion too. It comes seemingly out of nowhere and you feel like you've been hit with the flu. I figure I'm down for the count until it passes, but it's REAL irritating when you have things you have to do.
  9. Got that right dizzy dame! Why pay someone to abuse you? The only way I know of to control fainting is to immediately stop what your are doing and sit or lie down. To me, fainting is one of the most horrible feelings I can encounter in life. You feel like you are leaving this world and may not wake up. It's eerie and scary. If that were my doctor he'd be long gone. Something is definitely WRONG with that guy, not you. Sorry, I didn't know he was from Canada. What I would do is take a tape recorder and record his abusive, callous comments. Then I'd turn to him with recorder in hand and ask him, "Would you like me to replay this for you, or the medical review board? Your choice". He sounds like a bully and the only way to stop a bully is to stand up to them.
  10. I overlooked this part of your post. YES OMG YES! "Commitments" will actual cause me to have panic attacks, because there is so much uncertainty in how I will feel. I can't commit to an unknown. I've become a 'play it by ear' person for the past 15 yrs. People hate it, but that's the best I can do. I avoid schedules like the plague.
  11. That's what I'm afraid of. I want it all fixed. I'm so tired of having no life. The cardio assistant did say I would probably need a pacemaker, since I am allergic to so many meds. I just don't know what it will do for the autonomic problems. For me to take this step in even seeing doctors after so many years, I want it fixed as much as possible once and for all. Wishful thinking I know Also, I am total self-pay, so I don't want unnecessary tests on wild goose chases. My dad had neuro problems, and my son is like me, only younger and healthier to withstand the symptoms. I will let you know how I make out. At least this gives me hope.
  12. I have a cure for that - tell him to clean what bothers him. lol it will do him some good. Virgos hate to be disorganized, so he'll cope better if he just does it NO ONE can do it like a virgo. We get the stinking toothbrush out to get that last bit of dust I'm married to a retired Leo. Lion bossy sometimes. When I caught on to it after 20+ years of marriage (slow learner) I finally broke him in and let him know what bothers him when he's snitty, is not my problem. He does ALL the housework, shopping, etc. Retirement did it for the most part though. He decided he needed a 'job' managing the household after years of me taking care of everything. It took some compromise on my part, but I felt so bad physically that I gave in. Can't say I enjoy it more than when I would do it myself (loved cleaning), but hey it gets done! Cure for looking/feeling nasty - don't look in mirror Cure for dirty house - look straight ahead
  13. Thank you. That gives me some relief knowing they won't do invasive tests. I did read here where someone had an ablation and it worsened her condition badly. That kind of thing scares the heck out of me. Also, I'm glad they can tell the difference between syndromes. thank you so much.
  14. thank you persephone. I went to my cardiologists website to see who the doctor was. The site doesn't list any credentials, but a google search of his name shows that he is listed as one of the "CANDIDATES FOR ADVANCEMENT TO FELLOWSHIP" (sorry for the caps - it's a copy/paste) at the American College of Cardiology in Bethesda, MD. http://www.acc.org/about/cip_advancement.htm Maybe that is good? lol I'm sorry. I've just seen to many quacks in my time to have much trust of doctors at all. Thus the 10 yr gap in seeing a doctor. At least the cardiovascular group that I am going to is the largest in my state, and after 10 yrs+ of abnormal ekgs, the cardio decided to refer me to look further. What kind of tests can I expect? I still think a tilt test would tell them more than any other test, and it is not invasive. I googled electrophysiologist, and their cath tests look scary. After having several TIA's in the past with resulting damage, my sphincter muscle (that that one) is totally hosed. I'm scared to death of anything invasive that could cause me to throw another clot. I'm sorry for being such a whiner!
  15. boy can I relate - I'm a virgo I used to be so anal about cleaning and now I could care less if it gets done. It's amazing how feeling light crap changes your perspective! I have found if I feel good (rare days) I get a sudden urge to clean. Forget vacumming though. That is too much to handle... but light things like windexing things and some sorting of things, does wonders for my psyche
  16. My cardiologist wants to send me to a electrophysiologist after the results of my holtor monitor. They said it showed sick sinus syndrome. Fast/Slow rythmn's. I couldn't complete the stress test because my legs give way on the treadmill when I get extremely dizzy. Do electrophysiologist know about autonomic disorders? I had an earlier post about my body buzzing while laying down, and between that and the dizziness, fatique and memory loss, I'm hoping one doctor can put it all together so I don't have to see a neurologist. thank you for any input. I'm hoping I'm on the road to an answer and a cure. I really can't take the bad, bad, BAD days anymore. Walking from 1 room to another somedays, or just getting out of a chair makes me feel like I'm going to pass out. I want my life back while I am still young enough to enjoy it. I feel like I'm 90 most days.
  17. Not really. I don't think much has changed since my last echo 10 yrs ago. A tilt test would glean far more info I think, as I think the arrythmias are triggered autonomically. I did contact a cardio research study affliliated with my cardio and they said my EKGs are all over the place. Several MI's, etc on the readings. I think my heart just goes nutz and can't find a happy rythm. PITA it is. Thanks for all your feedback. I'll find out more about the tilt test this week and take it from there.
  18. Bummer. Then it's back to neuropathy of unknown origin. Will a tilt table test be conclusive to rule out the heart or would I have to take a myriad of additional tests?
  19. Interesting. Don't nerves control BP and heartrate? I've also been told I have a peripheral/polyneuropathy, but they could never find the cause. And I had a severe case of RSD with nerve damage after a wrist fracture. The severe pain of RSD seemed to clear up except for flare ups, although the bone degeneration and atrophy caused by RSD remains. Seems like the nerves that control blood vessels would be the cause. I haven't a clue what part of the nervous system controls those. I would encourage those with this problem would bring it up to their doctor if it doesn't cause too much stress to tell them. I know how that goes. That's why I've stayed away from doctors for 10 years. Few answers and I didn't appreciate the cost and mental anquish on top of not knowing how to interpret so many abnormal tests.
  20. Please wear support stockings! A few years ago I had to fly and my ankles swelled so bad I couldn't stand the pain. Walking was excruciating! The swelling lasted the entire time I was gone (6 days) and when I flew back I thought I was going to die from the pain it hurt so bad. Here's a pic of my ankle when I got home. I am normally 5'11" -140lbs, so my ankles are normally skinny. Just looking at the pic brings back the memory of that severe pain. My skin is all screwed up too and that remained after the swelling went down. If you increase salt and don't wear support stockings you are asking for trouble. No alcohol either. That's just my experience, but it was SO awful, I thought I'd share it.
  21. thx for the replies. Glad I am not alone. I wouldn't be afraid to bring it up with your doctor. The biggest problem with mentioning it is 'describing' it. It sounds looney toons, but it is very real. A good word to describe it would help. Back in the mid-90's when I was seeing a cardio post TIA's, I was able to narrow it down more specifically, but this time it is the vibration only, as far as I can tell. I don't try to get out of bed when it happens. It jerks me awake. 10 yrs ago, It happened as soon as I laid down. One night I got fed up with it and decided to not worry about it. The next morning when I woke up, my body was like ice and STILL vibrating. It had gone on all night long. My husband reached over and he said I felt like a dead body I was so cold. When I tried to get out of bed, I had such bad whiteouts that I could only raise up inches at a time. It took a good 10 minutes before I was upright sitting on the edge of the bed... By the time I got to the bathroom the vibrating stopped. When I got back into bed and laid down again, it immediately started again, so the cure that day was to not lay down at all. I immediately saw my cardio and explained what happened and he said it sounded like my heart was pumping so fast that blood wasn't being pumped into the rest of my body (ice cold). We did a holter then which showed about 5 different arrythmias working against each other and I was put on Procainamide. I felt 20 yrs younger, but developed an allergy within a week and had to stop. So it is related to the heart and BP. Probably more BP not being regulated when laying down than the actual heart, but I really don't know. The difference this time is my hands are going numb and my body doesn't get ice cold. My lungs feel like they are stuffed to the brim when it happens and my breathing is very shallow. I'm trying to ward off another TIA, which was the result of the body buzzing for about a year before I stated having TIA's 10 yrs ago. I really hate like H to have to go through this again with doctors. Maybe the tilt test will tell them more than the other cardio tests I've had. I do have MVP with regurgitation (echo) and haven't had a normal EKG in 10 yrs.
  22. I am in the process of trying to find out what is going on. I was previously told I had heart arrythmias, orthostatic hypotension, TIA's, blood pooling and swelling in legs. I have had gait disturbances, white outs, nausea, presyncope. What scares me the most is when I am awakened to my whole body vibrating. I tried to do a search on the forum, but I don't know what word to use. The best way I can describe it is, I am awakened suddenly and my whole body feels like it is vibrating very, very fast. Also I am waking up in the morning and both my hands are almost numb. They feel swollen and stiff and my fingers don't bend, but looking at them they are not swollen. I had similar trouble about 10 yrs ago which resulted in some TIA's and I don't want a repeat (scary). After not going to a doctor for 10 yrs, I am starting the process again with a cardio. I don't have the results of the 24hr holter yet, but I couldn't complete the treadmill stress test this week, because the moving treadmill causes sever gait disturbances. My equilibrium gets all screwed up and I feel like I'm climbing a steep hill on a 10% grade. This happened 10 yrs ago also. My heart rate when from 88 to 122 within 40 secs and they couldn't get a BP in either arm (typical for me when standing) for several minutes. Then it was 122 over 88 and very weak sounding. They stopped the test and said that I should get a tilt test or a stress test where they inject you with something to increase your heart rate, because I can't complete the treadmill. Thanks for any insight about the pulsing/vibrating while sleeping or lying down. I'm thankful to have found a forum where others are going through the same things. I've lived my whole life whiteouts on standing, etc and my son seems to have inherited this problem also. Answers would be wonderful, as I am in my 50's now and it getting much worse. thank you
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