Rene S.

Thanks, Jenn. The only good thing about the atenolol is that if I take it around dinner it helps me sleep but I don't want my pressure plunging so low that I don't get up! Hope things are well with your grandfather. Take care! Rene

Thanks, Tammy. I too take baby doses of everything. I did last night finally decide around 11 to bite the bullet and take the 6.25 mg. (I had been on that dosage in the past with a different cardioligist). This one doesn't get dysautonomia. He says it's something that will pass! Ha! I should direct him to the boards and let him see for himself what really goes on with us. You sound like you are familiar with caths. Have you had one? Know anything about them? I'm so scared. Especially being allergic to the contrast dye and having to premedicate with prednisone and pepcid. My anxiety has excalated and it's two more days to go. I feel like just running away and not looking back. No one gets that our bodies are so sensitive to stimuli and medications. Especially male drs! Rene

Hi. I've been on atenolol 12.5 mg for two weeks. I hate the way it makes me feel, but it's dramatically improved the high b/p. Now the weirdest thing has happened. Saturday was exactly two weeks since I started and my b/p was around 90/47. HR was resting around 72. Last night, I got flushed felt sweaty as can be and I took my b/p and it was 70/40! I got scared, called a friend who suggested salty foods and lots of water. I did get it back up to 90/57 and felt ok just exhausted. I called the idiot cardiologist who said that 12.5 mg could not affect my b/p that way, that it was strictly the dysautonomia! Grrrr. I usually take the Atenolol at around 6pm. It does relax me, but I've found that in the last two weeks that my depression is worse my eyes are dry and my head burns constantly not to mention the fatigue and lack of energy. Now here's my query - I know you just can't stop a beta and I'm supposed to have a cardiac cath on Thurs. and they want me on a beta. However, tonight I took my b/p and once again my diastolic number was around 47. Resting. Got up, moved around and ate some salty nuts and brought it back up to 60. I need to take my dose but was wondering if I should just cut it down to 6.25 and see what happens. I'm terrified of crashing and I'm alone and no one would know. Still can't figure this out since two weeks ago I was at 196/90 for 12 hours. Can the heat do this or is this just typical awful dysautonomia? I dare not call the cardio because he already said that I would do what I want. Would it be ok to take it down 1/4 tonight? Would it lower my b/p too drastically? Thank you so much! Rene

Gary, my heart aches for you. I know all too well the lack of spousal support. I was diagnosed 9 years ago with fibro/cfs (now this lovely dsyautonomia). I was happily married (although I thought!) and once I was diagnosed with the fibro, everything seemed to change. My husband (now ex) became less and less involved with me. Never believed that I was "ill". Resented me and the way my life so drastically changed. 3 year ago, on our 22nd wedding anniversary, he announced he wanted a divorce! broke my heart. We were together since the age of 15. Whatever did happen to better or worse? My kids are grown but I have no support from anyone. My ex (as of last year) is now remarrying someone he worked with and she's younger. Still you would think he would call once in awhile email, etc to find out how I'm doing? There are days now that are so bad that I don't leave the house. I barely drive anymore and have lost so much weight that I can barely function. Glad my ex can't see me now. he would bolt for the door! Yet if the shoe were on the other foot, I would have stuck by him through thick or thin. I'm sorry that your wife is treating you so poorly. Those on the board are indeed lucky to have supportive spouses. It's awful doing this alone. I wish you the best and glad your anxiety is better today. If only I could get mine under control. After 1 week on the Zoloft I just couldn't deal with it anymore. And in the past I was always fine with it. Go figure. Take care Rene

Thank you both so much. I'm trying not to take any tylenol (can't to aleve, motrin, advil, etc. due to stomach upset). I was also diagnosed with anemia and wonder if the headaches have anything to do with that? Rene

Hi. The headaches started before either med was introduced. That's the frustrating part. You're right. The drs should have spaced it further apart. I've been checking b/p and it seems ok. It's almost like a fire in my head if that makes any sense. Thank you both for the suggestions! Rene

Hi Michelle, Thanks for responding - you always do! Not sure what is causing it but you are right, probably tension perhaps aggravated by the atenolol which I started on Sat. I started the zoloft today so that's not a factor = yet! Never considered icy hot patches but perhaps a heating pad? I know my shoulders are all tensed up so that could be playing a part. I can't do Advil. Eats my stomach. I will try this natural rub that I have tonight and see if it helps. My cats will just love the way I smell! LOL. Thank you for all of your suggestions. I'll respond to your PM as soon as I get a chance and get some relief from my head. You are so sweet. Hope you are doing well. Hugs Rene

Hi. I thought the headaches may have been a result of my pressure being high at times. But there's no rhyme or reason. It may be from sitting at the computer and the way I hold my self up. Tension would be it but I was under more stress before so I don't know why it's manifesting itself now. No, it can't be the meds. I wasn't on anything prior to this week. Hmm, I just wonder if the atenolol is a contributing factor. Thanks! Rene

Thanks, Jana. I only started the atenolol this week but it may be a contributing factor. My cardiologist has "dismissed" me because I called him on the floor about having POTs and h/p and he said that's impossible. So, for now, I'm stuck with the atenolol. Just started the zoloft today so it can't be from that. I'm sorry that you suffer as well. And yes, I'm starting on a baby dose of zoloft and it's already making me feel horrid. Just don't know why we can't do meds! Take care! Rene

Thank you, Pat. I know in the beginning it really messed with my sleep. And I'm trying to add more calories because I know it will cause weight loss and I can't afford that! Best, Rene

Hi. Well, I took the plunge. Decided to see if Zoloft would help any of my symptoms. I'd been on it in the past. The first two weeks were always so awful. Now taking it for the first time since my diagnosis. Don't know what to expect. Only on 12.5 but I'm so sensitive to everything. I'd love to hear about your experiences, good or bad. I know the one unfortunate thing is that it will decrease my appetite, something I can't afford to have happen. How was the adjustment period for those of you on it? I know many people do just fine, but for me, it's the awful speeding sensation that really bothers me. I do take klonopin and have script for ativan which the psychiatrist says I can also take, but I don't want all of those benzos in my body. Just looking for a little moral support. Not easy doing this alone. Thank you all so much for being here for me! Rene

Hi. I know that headaches are a big part of this illness, but I can't get mine to stop pounding. Prior to a month and 1/2 ago, I never had them. Now, I feel it in my eyes, the base of my skull, the top and throughout my face. If I even lay on it, I feel this intense burning sensation. It's as if I'm wearing a hat this is way too tight. Does that make any sense? I can't figure out the trigger. Tylenol doesn't do anything. Could this be stress or migraines? I just started today on Zoloft 12.5 mg. I'm a bit scared. I was on it before prior to my diagnosis and hated the initial two week start up period. Does anyone have any suggestions as to why the headaches are constant? I know I was having b/p issues, but now am on Atenolol. Wondering if that's making my headache worse. Any advice would be greatly appreciated. Thanks! Rene

Thank you, Maggie for the info. I've always had a problem with meds and the drs look at me like I'm nuts. Even with some of the smallest doses, I have reactions. I wonder if they do this testing anywhere else besides Louisville? I'm in PA. I wil definitely check out the website. Thank you again. Rene

Thank you. I was told to try and stick it out with the atenolol. I wanted to switch to Zebeta (bisoprolol) but my cardio (former now!) said he doesn't think it's been on the market long enough. I think I will start back on the zoloft tomorrow. I guess I'll prove my cardio right that I'm just a neurotic woman! Does anyone see a female cardio??????????? Rene

Thanks. Originally, it was thought that I had a pheo but the tests were negative. Now I have this nagging feeling that's still where I should be looking. Pindolol is fine with an a/d. There are some that are contraindicated. Yes, I am scared and frustrated and still awaiting a call from the cardio. I had to to my atenolol because my b/p was shooting up as well as my anxiety. There is no justice! I just hope that Idon't have a heart blockage because I don't think you can take atenolol or any other betas if you do. I could be wrong. I wonder if I should post about anyone having a cardio cath but that's not sticking with the subject of disautonomia. Thanks again. Rene

Hi Flop, The first troponin was taken in the ambulance. It elevated, and now I wonder if it's because of the way it was stored because my d-dimer was also taken from the vials of blood drawn in the ambulance. They repeated the troponin twice afterwards both normal. I believe the 2nd was repeated approx 6-8 hrs after the first, and then another 6-8 hours after the 2nd. I did have the v-q scan done - negative as well as a doppler of the leg that's been bothering me. I have had every heart test done, all that you mentioned including a calcium score test which was zero. I don't want to undergo an unnecessary procedure and especially one as risky as a cardiac cath. Unfortunately, I went to a hospital where my cardio wasn't attending. This test is scheduled for friday and now am waiting for the cardio to call me back. I won't hold my breath. You are fine with the zebeta and an antidepressant. They don't interfer. It's ones like metoprolol and some others that do. I want to switch to zebeta since I've heard it has less side effects than the atenolol. Right now I'm just totally frustrated and don't know what I should do. I guess I have to wait it out till I speak to the cardio and perhaps call another for a second opinion. Thanks again. Rene

OMG, that's too amazing! How in the world do you have all that energy to do what you do??? I'm 5 mins from the Applebee's. I live in Huntingdon brook. Just moved myself. PM me if you want and we can talk by phone. Pat, have you found any local drs that are good? It's so hard for me to drive! Rene

Hi. I was wondering if there was anyone in the Bucks County, PA area on the boards. I'm in Southampton and don't have an easy time getting around. I'm only 6 months diagnosed with Dysautonomia and don't have a clue as to where to begin. I'm barely driving anymore due to high h/r and dizziness. Was wondering if there were any groups nearby or anyone in the general vicinity. I live alone and this is so hard on me. Thank you! Rene

Thanks, Jennifer I was thinking of calling Jeff in the morning. I was there once and saw an EP guy prior to my diagnosis. This was when I had the non sustained v-tach and was on metoprolol. I just don't know what the heck is going on with me. I won't be able to drive and will have to rely on someone. And to think I used to drive an hour each way to work! Geez what my life has become. I just want to be admitted and have every available test done! How is it that you are so familiar with the hospitals around here????? And now that I've started the atenolol I wonder if that would skew the tests???? Not that it's doing anything yet for my b/p. Thanks! Rene

Hi Jennifer, I knew I could count on you! No never tried Inderal. I don't have a firm diagnosis of H-POTS but my b/p is constantly elevated where before it wasn't. And I've just turned in the urine test for the pheo. This is the second time. I have all the symptoms but my endo is 100% convinced that it's not. He wants to chalk all of this up to anxiety but there has to be something else. Not retaining any water. I don't know who to turn to. And the ER is getting old. I wish I had one dr. who knew what he/she was doing. I'm getting more and more frustrated with each passing day. I'll keep you posted. Thanks, Jennifer! Rene

I'm in a quandry. For the last few weeks by b/p has been high along with a high h/r. I've been avoiding beta blockers since they tend to make me depressed and lethargic. However, I was rushed to the hospital on Weds night due to b/p reading of 190/90 and horrid headaches and chest pains. Two unfortunate things occured. #1, my first Troponin I was elevated (0.12) the next two were in normal range. Also, my D-dimer was elevated (0.65). I had both a doppler of my legs (my right calf has been hurting and still is!) and a V-Q scan. Both negative. Now, back to the Betas - They started me on Coreg 1/2 of the smallest dose 3.125 I believe. After the second dose, I started getting the worst heart palps. Was dizzy, disoriented and extremely anxious. They still dismissed me. I spoke with the on call cardio, yesterday and he told me to switch to Atenolol which I have previously taken. 12.5mg. Freezing hands and feet, feeling depressed and out of it. I have tried metoprolol, coregard, and pindolol in the past, each with it's own set of side effects. I want to start back on an antidepressant and I know that some of the betas interfer with the a/ds. Does anyone have any advice? I'm just stumped and worried. Even though my troponin level was high just the first time, the oncall cardio in the hospital thought I needed a cath, thinking I could have some cell damage (I get chest pains alot and palps). I'm deathly allergic to contrast dye and afraid that the prep alone won't help and there are risks to the procedure itself. Also, I'm scared about the D-dimer being elevated especially since I still have the calf pain. I don't have faith in any one dr and they all seem to blow me off. Sorry for the ramble, I'm just scared and frustrated and now all my friends basically think it's all just in my head. Speaking of which, I have had an ongoing headache for over 3 weeks now. When I mentioned it in the hospital they gave me regular strength tylenol and even though I'm still losing weight not one dr there was willing to do any testings to get to the root. I'm just so frustrated with this illness. Please advice. Thank you so much. Rene

Hi. I know this is a late posting but came across your message. I can only say that I've had two pills and they gave me the worst palpitations. And it was a baby dose. 1/2 of the 3.125 mg pill. currently trying atenolol for the 2nd time. Betas don't make me happy. Rene

Hi. I know this a late after your post, but I just wanted to add that your palps may be due to the Coreg! I was taking a tiny dose 3.125 (1/2 pill) and only twice and had the worst palps! They would not stop. So, please look into that aspect. Not all meds effect everyone the same. Rene

Thanks, Melissa. Yes, I am plagued with anxiety. I've always had it, but not to this extent. I think the illness only makes it worse. It's a vicious cycle. I'm alone and scared and you would think that a woman of 50 would be able to pull herself together and get over it! I hate not being normal. I hate being told by drs that it's due to menopause and anxiety disorder. I'm tired of the ups and downs (lately more ups of high b/p and h/r). I want this to be over. I'm sure you do as well. Sorry, it's pity party time for me! HOw do you get to a point where you realize that this is normal for you? How do you accept it and live with it? I just want to wake up and have it over with! Maybe because it's all so new to me and all of the stressors that I dealt with in the past. I want my heart to be strong, but how can it when I can't even exercise except for climbing the steps about 20 times a day and then struggling to catch my breath? Sorry for the rant. I just needed to vent. Thanks Melissa! Rene