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Rene S.

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Everything posted by Rene S.

  1. Hi Morgan, Thank you for your response. I have not stopped the atenolol, but rather have cut it back since my distolic number goes down into the 50's and sometimes 40's at nighttime. I was only on 12.5 but took it down to 6.25 and still last night my bottom number was low. I've only been on it for a month and I know not to just stop taking it. I don't want to cause any harm to my body which is already a wreck! I've tried so many different betas, coregard, coreg, metoprolol and pindolol, but only gave the pindolol one shot. I may go back to it and see what happens. I don't think any of the betas so far seem to agree with me. They depress me and give me a headache. I wish I had a fabulous cardiologist who could figure it out for me but I have to wait till next month to see Dr. Goodkin, who is on the list of recommend drs. I'm hoping he can find the right drug combo for me. Take care! Rene
  2. Thanks Yogini. I too tried Paxil, but to no avail. I'm glad it works for you! I was actually thinking of trying Pindolol again since I only took it once and didn't like the way it made me feel but I may not have given it a chance. Rene
  3. Hi. Thank you for your response. I know it's hard to find the right drugs especially for most of us who are so sensitive to many drugs. I was just doing research yesterday on the various beta blockers when I stumbled across those two articles. I know you are atenolol as well, and am glad it's working for you. I am on a small dose, because if I take more, it crashes my b/p, which is all over the place. I have tried many others and my body seems to reject them along with various other medications. I am seeing a POTS specialist next month, and hopefully, he will steer me in the right direction. My intent was not to dissuade people from taking their betas. I just wanted to know if anyone else had read that particular article. Thank you. Rene
  4. Hi. Thank you for your imput. NO I would never tell anyone to throw out their beta blockers. Nor did I intend to upset anyone. Being fairly new to the dysautonomic world, I am doing as much research as I can on the subject and when I came across that article it did alarm me, but not everything you read is true, as we all know. I'm so glad that your beta is work for you. Am I thrilled with the Atenolol? I can say truthfully that it was the first one that I started with and I've been on about 5 others and even though I have side effects it's better than the awful tachycardia. I appreciate your response very much Thank you. Rene
  5. Thanks, Jenn, As I said, I didn't want to alarm ANYONE including myself nor did I intend to cause any scene or make anyone upset with me. I was actually going to call you and ask if your dad heard about the so called study. And I knew you would have further insight on it! I'm not loving the way I feel on the Atenolol, but for now it seems to be my only option until I see the specialist next month. Thank you for all of your support and for clarifying things for me. I'm doing my best to muddle around on these new grounds. Wishing you a great mother's day! Hugs, Rene
  6. Hi. By all means, I don't wish to alarm anyone who takes Atenolol since I am one of them. There's an article on Buzzle.com that states that Atenolol may increase heart attack risk. I've also found this topic on another website. I know you can't believe everything you read but being on the drug I was a bit concerned. http://www.buzzle.com/articles/blood-press...ttack-risk.html http://cme.medscape.com/viewarticle/493299 This was a UK study that stated the people should back off Atenolol due to increased risk of heart attack, stroke and type 2 diabetes. The article states that beta blockers slow you down and lower your hdl and insulin sensitivity, with Atenolol being the main culprit. It's especially dangerous in people over the age of 50. (I just turned 50). Should I think of switching bb? Now, I have been on 6.25-12.5 mg of Atenolol for over a month and it does lower my h/r. I'd just like to know if there is any validity to this article. Also, if you do a google search and type in atenolol causing heart attacks you can find one or two other articles speaking with drs in the US that concur with these findings. Just want some clarification and to see how true these articles are. A lot of us are one Atenolol and I'm sure we'd all like to know if this is a horrible rumor or if there is some truth in the articles. Once again, please, anyone on Atenolol please do not stop it! I was a bit scared myself but I don't want to harm anyone by bringing this article into light. One other question that has to do with Atenolol for myself personally and perhaps others have experienced this - At night, in a supine position, my diastolic number goes to 50 or below, and I can feel it happening. I get sweaty and just know that something isn't right. Once it actually went to 70/40 and that was when I was on 12.5mg of Atenolol. The cardio said there is no way that the atenolol at that dosage could do that! Wrong! Thank you. Rene
  7. Maxine I want to thank you and everyone else on the boards for their support. It's so wonderful knowing that there are caring, beautiful, loving people out there who are there when you need them with their wonderful advice. Morgan has become my angel of mercy along with Liz, Dana, Nina, Jenn, Michelle, M. Koven, Sophiha and everyone else who offered their support. Please forgive me if I left anyone else off the list. Thank you all so much. You'll never know how much it has meant to me. Hugs, Rene
  8. Oh Liz, I'm so so sorry. I hope everything goes well and wish you nothing but the best. Keep us posted. Hugs, Rene
  9. Thanks, Sophia. Still not feeling quite right. I thought by today I would be normal.Just can't seem to gain my strength back. Rene
  10. Oh my gosh, you poor thing! Wow! How brave! I couldn't even imagine. Through your neck? Wow. Hope all is well now, Niina. Rene
  11. Hi Liz, I had the same experience. They had to take another route due to small veins. Ouch! I wish they had given me more to take the edge off! Was anyone's puncture site closed with St. Jude's angio-seal? That's what they told they used on me. I only found out yesterday when I called the lab. They told me that they should have given me a card to carry for the next 90 days until it disolves???? Rene PS When I was reading a few descriptions on the internet it says that they give you heparin? Was in done through the iv during procedure? Is that in all casess? And when I was told to take an aspirin, I took my normal baby. They didn't specify full strength. Still feel weak. Wish this would pass! Rene
  12. Hi Morgan, I just thought by now some of my energy would return. And I have a wicked headache, but that could be from the rainy weather. I remember them telling me to take an aspirin before I came to the procedure but I took a baby aspirin since they never specified which dose. I'm assuming that's what they meant since I take one on a daily basis? Last night I felt some weird chest pains, but I also have fibro so who knows??? I just want to return to "normal". Oh yes, having them induce the PVCs was the worst! Nina did this without drugs????? OMG!!!! The drugs for me didn't even help since I was speeding so from the prednisone. I guess I just have to slowly start building up my strength but I still feel like I got run over by a truck! Guess we're all different and being weak to begin with, didn't help. Thanks again, Morgan. Be well! Rene
  13. Morgan, you are a doll! How can I ever repay you for setting my mind as ease? I don't have a huge knot at the entrance site. Just a bit sore and now turning black and blue. Or shall I say yellow and purple! I was a bit peeved that I wasn't told to remain still the first day. I was most compliant in hospital and then went home with a friend. I had to stop at my house and unfortunately, do one flight of steps but I did them very cautiously. Then went back to my friend's and stayed on the first floor. Yes, I know I got a boatload of steroids. And my dear friend klonopin barely touched the side effects! Wow. No wonder people go out of their minds on that stuff. I have in the past years ago, taken the medrol dose pak but nothing compared to this doozy of a prep. Sorry you had to endure a pacemaker. I hope you are doing well now. Morgan, may I ask what my chances are of developing a blood clot since I'm not as active (not that I was before!) I've been getting up walking around and unfortunately or fortunately, going up and down the steps. Living alone I have to fend for myself. I'm careful not to lift anything and tryint to maintain eating healthy. That's great that the dr. told you afterwards that you could die. How insensitive. Although my dr was not any better. He never even explained the risks! All I got was a printed out sheet saying do things in moderation. I've been pushing the fluids but I thought by now the steroids would be gone since my last whopping dose was on Thurs morning. I did sleep better last night compared to the days that I was on the steroids with absolutely no sleep in sight! I'm glad it's all over and it still has me shaken up. I have a friend who is was a cardiac nurse and she had horror stories to tell me. That's the last thing I want to hear. When they say chance of heart attack, stroke or infection around the heart are they talking about shortly after the procedure? Yes, I'm still freaking out about this. I just turned 50 in April and you would think I wouldn't be such a baby. Just wondering why (I know the answer is insurance!) that they don't keep you longer in the hospital so they can keep a better eye on you. The nurses only came into my room when I accidentially moved my right leg! Then I got yelled at! A friend told me she had it done, and was up and out in two hours and drove herself home! That I find hard to believe! Things have definitely changed for me since the dysautonomia. Everything seems to be intensified and I worry much much more. Thank you for being here for me. You truly don't know what it means to me. You are an angle! Be well, Rene
  14. Hi Morgan, Thanks for the words of encouragement. I don't know why I'm still scared even after the procedure is over. Spending too much time on the internet reading about complications I guess that will do it every time. I've been pushing fluids big time. Not sure how long the steroids stay in your body but I hope by now it they would be gone. Wow, it's a horrible drug taken in such large quantities. 120mg over 17 hours period that and pepcid and then when I got to the procedure room they ived benadryl which always gives me a paradoxal reaction. And I'm sure it doesn't help that I'm under 90 lbs! I was speeding to say the least. You would have thought that the nurses and techs would have been more compassionate instead of telling me that I needed to learn to control my anxiety better and were offering suggestions such as yoga and meditation. I did change the dressing yesterday with a simple bandaid. If complicatons were to occur, how soon after the procedure? I did mention that the following morning I was feeling awful and lightheaded and sure enough my b/p had crashed to 70/48, but it came right back up again after I had some juice and cereal. I don't know if because the day before it was elevated due to stress and the steroids but it did give me a scare. I held off on my beta that day. I so appreciate you answering my post. There are so many horror stories on the internet about the complications from the cath. I think if I had read them prior I would not have gone through with it! Please let me know if there is anything else I should be on the lookout for. Thanks, Morgan for your time and expertise! Rene
  15. Hi Liz, My original cardio was an EP guy but he and I differed in opinions on other subjects such as he didn't think you could have high b/p and have dysautonomia. He wouldn't have performed the cath anyway it would have been one of his partners. I'm not thrilled with the cardio that I picked to do it. Seems like he never went over any of the risks or aftermath. I did get a print out just addressing if something should happen with the puncture site. Yes I was terrified. I think all the prednisone I took didn't help. It turned me into a basket case. And when the nurses and techs kept telling me to relax I wanted to punch them! Even with the versed and fentanyl it didn't do anything to calm me. So sorry that you underwent the procedure twice. Wow. You deserve a medal. I'm still scared of complications that can occur after the procedure. I spent yesterday researching and now I've gotten myself scared silly. Things like heart attacks, strokes, embolisms, fluid in the heart, etc and they say these things are more common in the elderly and women - I guess because our veins are smaller. At what point can I consider myself lucky that complications haven't occured? Do they happen weeks later? Days later? all I know is that my neck, chest and back ache and I'm hoping it's just from laying flat on my back all that time. I question now why I even went through with it. All heart tests prior were perfect including a zero calcium score. Liz, when you say you were sore, may I ask where? I know when they did the procedure the cardio said he was going to trigger pvcs and pacs and I think even SVTs. It was awful. And he told me at one point that my chest was going to hurt briefly during the procedure. But he never even came back prior to my discharge. I guess he just wants to collect his money and run. I'm also more shakey today than usual, but no fever. That I keep checking. So fearful of something going wrong. Not easy when you live alone. Next month I'm scheduled to see an EP cardio that is on the POTS list. Dr. Goodkin. He's about an hour away but I hope it will be worth it. I just want someone now to allay my fears and that what I'm feeling is normal. All the literature that I've read said I should be back to "normal" by now, then again they aren't dealing with what we are. Liz, may I ask your age? I just turned 50 last month. Never thought I'd have to go through this. All because of an elevated troponin level that was a lab error. Very frustrating. Oh and the cardio doesn't even want to see me for a follow up! It says see your primary dr. I should have trusted my intuition and not have done it. But it's over with and there's no turning back. Please let me know if there are any symptoms I should be looking out for. I just don't understand the total exhaustion. Thanks! Rene PS. My chest is sore but I can replicate the pain by touching it. I guess this is ok?
  16. I'm glad you are doing better now. Sorry that you had the hemo. My leg is sore and i'm just totally exhausted. My energy level is sub zero. Just did some laundry and feel the need to lay down. Just want to avoid a blood clot. I guess I shouldn't have done a search on cardiac caths yesterday. Lots of complications can occur. I wonder how soon after?
  17. Hi. Yes, that's exactly how I feel - like a mack truck knocked me down. Then I go and read about complications that can happen after a cath, especially more likely in the elderly and WOMEN! Great. And being the fact that my arteries were clear, I wonder if I put myself at unnecessary risk for further complications. Never a dull moment. Thanks for the imput on steroids. They are totally brutal, to say the least. Did you experience all over body aching after the cath? I feel like my shoulders are aching, headache body aches but then again I also have fibro and maybe due to lack of sleep. I'm just mad that the cardio didn't tell me all risks that could occur. I'm being quite sedentary and I don't want to throw a blood clot. Sorry that you have a couple of caths. Did you have any complications? How long ago were yours done? I'm just a worry wart, but two days out I thought I'd be feeling a little more energized. Take care and thanks again. Rene
  18. I can totally relate to how you felt. You are so right. As soon as the cardio finds out that your arteries are "clean" they want nothing to do with you. After the cath, I was just laying flat on my back and my heart was racing at 118. That was supine, not moving an inch. No one seemed to care and when I mentioned it to the nurse, she said she would put a call into the dr and sure enough he said her arteries are clean, I don't care what her heart rate is! And I remember now him saying during the procedure that the pains I'm experiencing can't be cardiac with whistle clean arteries. So, I'm in the same boat and I'm sorry you went through that as well. Did your b/p go up while on the prednisone? Mine did and then today I had that crash! Wow. Also, I know I was prepped so not to go into anaphalaxis, but at one point during the procedure I remember saying that I couldn't swallow and they retorted back your stats are fine. Relax! Grrr. And today, and last night, my face feels and looks as if it's sunburned? Does that make sense? One more question - i know the steroids made you hyper and anxious as they did me, but did you feel depressed the next day? I'm in such a funk today. I'm hoping to continue and get some answers when I see Dr. Michael Goodkin, a POTS specialist (I believe he's an EP cardio) next month. These regular drs don't have a clue. It' horrible what we all have to endure to try and maintain some level of health. Take care, Rene
  19. Hi Michelle, Yes, I was very scared and today I feel yucky, to say the least. I've been drinking tons of water to get the prednisone and all the other meds out of my body. And to have to start a new beta blocker today well I may just wait on that. Too much shock to my system. Thanks for the info about not tapering. It sounds like you've been through the prednisone route as well. Horrible drug to say the least. I'm not going to change the dressing today, I called the cath lab and they said it can wait till tomorrow. Just not up for seeing it yet and I'm not usually squeamish! Thanks for all of your well wishes. How are you doing???? Take care and thanks for posting! Rene
  20. Hi. Yes, I had horrid PVCs the night before and even yesterday when they had me in the room to prep me for the cath. They all showed up on the monitor so I guess it wasn't just me being crazy. Today I'm feeling totally wiped out. As if our bodies are not under enough stress. I'm just not sure why my b/p crashed so low this morning. Did something simiilar happen to you? Perhaps it was all of the drugs in my body fighting one another and it was too much for me to handle. I did go back in the archives and read what you went through last summer. I'm so sorry for your ordeal. To have to do the steroid prep twice. Horrible. Did you change the dressing the next day on the puncture site? I didn't shower today (afraid of passing out) so I did call the cath lab and they said it could stay on for 48 hours. I'm just feeling rather depressed today and wondering if it's from the prednisone. Also, I'm more shaking today than usual. The cardio just said that my PVCs, PACs are benign. Kind of angry with him. He never even came back into the room prior to my discharge. I'm trying not to lay in bed too much, for fear of a blood clot but my energy level has totally tanked. And the prednisone kept me up for two nights. Thank you for your well wishes and your response. Rene
  21. Hi. Well, I had the cardiac catherization done yesterday. Not a picnic considering the day before I was to be prepped with a course of steroids (40mg at 2pm, 40mg at 10pm and 40mg yesterday morning). In addition, I had to take pepcid 20mg with each dose. (Can't do benadryl makes wired like crazy!). So the prednisone was no picnic. I was as hyper as could be and didn't sleep at all. I was having the cardiac cath done due to chest pains and one elevated tropin level (cardiac enzymes). Since heart disease ran rampant in my family, my cardio suggested the cath. And since I went into anaphalactic shock at the age of 24 due to contrast dye I needed to be prepped prior. By the time I got into the cath lab I was speeding away on the prednisone and as an added measure they threw a bit of benadryl into the mix! They tried to sedate me with versed and fentanyl which did nothing. The test itself was a bit uncomfortable especially when they induced palps and weird rhythms which seemed to last forever. They go in through your groin and then use a collagen plug to close the puncture. Gratefully, my arteries are clean as a whistle so it must have been a lab error with the elevated troponin. I was to lay flat on my back for a few hours (not easy to use a bedpan in that position!). I know that M. Koven had this procedure done as well. And thankfully her's was negative too. Now the weird thing - this morning not sure if it was due to the large amt of prednisone but I started feeling shakey and knew I was going to pass out. I quickly sat down drank some juice and took my b/p and it was 70/48. I shook like a leaf for a bit then it came back to 106/60. Very scary. And now I'm scared to change the dressing on the puncture wound. All in all, I feel yucky and not myself. Just taking it easy today but wonder if I feel so awful from the combo of drugs, the stress of the procedure, etc? I did have some funky heart beats today and I'm supposed to switch from the atenolol to pindolol today but I may just forgo the beta blockers for today due to this morning's incident. If anyone else has had this procedure done, can you tell me how long it takes for the awful prednisone to pass out of the body? Also, I always thought you had to taper, but the pharmacist said that since I was only on it for 3 doses that it wasn't necessary. I did have some groin pain this morning but it passed after taking the tylenol. I'm just too chicken to change the dressing yet. I would love some advice from anyone who's been through this or has taken a large dose of prednisone and felt horrible overwhelming anxiety. Thank you. Rene
  22. Hi. Sorry to chime in so late, but I've been reading your postings and I can tell you that there is a bio-indentical vaginal progesterone called Prochieve which is despensed at the pharmacy with a prescription from your gyno. I was on it for quite so time. It used to go by the name Crinone. It comes in 4% and 8% strengths. The 8% being used for pregnant women to maintain their pregnancies, the 4% to be used by pre/menopausal women as part of the HT regimen. Simple to use, prefilled applicators and it's to be used every other night. Not messy and stays in place. Hope this helps. Rene
  23. HI. Sorry to bother you again. The email I had for my allergist was invalid and he won't be in until later. I have questioned my cardio many times this week and I do believe he's frustated with me but this is my life at stake. He told me to stay on the beta but I'd like a second opinion. I just don't know what I should be doing at this moment. Fear has taken over and I'm paralized with it. I was told that since I had the reaction to the day (over 25 years ago) that since then the dyes have changed and have less iodine however that does not make me feel better knowing that it almost killed me. Any advice would be appreciated. Best, Rene
  24. I'm grateful that you have informed me about the beta. I've read about it as well, and questioned the cardio but he brushed it off and it's been one of my biggest fears. I just emailed my allergist (a friend as well) and hopefully I can get this settled by 2pm since that's when I need to start premedicating. I'm so terrified that I can't see straight and just swallowed a klonopin! Did you do the prep at home or in hospital? I'm only to take 40mg of prednisone 2 twice (at 2pm and 10m with the pepcid) and then again tomorrow morning when I awake. I dread the wiring of the steroids as I'm already as wired as can be. Yes, I do believe that versed an another drug will be pushed through the iv to relax me as if that's going to happen! Please tell me how I go through the archives so I can read your posting. Thank you again for this most important piece of information. Rene
  25. You must be reading my mind! I was just coming to the boards to ask if anyone had been cathed and pre-medicated due to a contrast dye allergy. Thank you for posting! They want to cath me because 3 weeks ago I had a sustained b/p of 195/90 along with horrid chest pains and very intense palpitations. I waited them out through till morning and I wound up calling 911. Unfortunately, my first set of cardiac enzymes were slightly elevated, followed by two normal readings. The cardio felt perhaps I had had a coronary spasm due to the elevated b/p (prior to being on a beta) or perhaps some cellular damage. I get chest pains alot and I guess they want to get to the root of the problem. All other heart tests have been normal and I've had all of the noninvasive procedures done. I have a strong family history of heart disease so I guess they want to rule everything out. Just wish there was another way to do it. I'm so sorry that you had to go through this. Yes my anxiety is already through the roof just from the sheer anticipation. May I ask if you are on a beta blocker and were you at the time of the cath? I'm so so terrified because the one and only time I had contrast dye was when I was 22 and went into anaphalactic shock. It was horrible. Do you remember how your prep went? I'm supposed to do 40mg of prednisone at 2pm (tomorrow) along with a 20mg pepcid, then again at 10pm and then the morning of the procedure, Thursday. I'm in sheer terror and can't get my mind off of it. Did you have any reactions to the pre-med prep or the dye? The whole thing just terrifies me. I would love to hear your story since I don't know anyone firsthand who has been through this and also needed to be pre-medicated. I'm glad yours turned out well. Feel free to either post here or PM me. Thank you so much again. Rene
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