Rene S.

Thanks, Jana, You are so sweet and caring. It's ashame that drs can't be that way! Thanks for your support. I truly mean it. I hope things are well with you. Take care and we'll talk soon. Hugs, Rene

Hope everyone is doing well. I've had the week from you know what. It started last Sat. with extreme shortness of breathe, dizziness and I actually passed out. Enter the ER on a holiday weekend. Ok, draw the typical blood work and throw in another D-dimer. Well, it's high. Grr. Since I was complaining of shortness of breath and pain when inhaling in comes the wonderful VQ scan. Of course, it's read as being moderate probability for small pulmonary emboll. Kept me over night, no monitoring no cardiologist or pulmonologist. 4pm the next day, house dr. breezes in and says you are discharged I don't think it's anything. Go home. Still feel like you know what. Tuesday seek pulmonologist. Had report. He's not impressed. Says if it gets worse, go to ER. Great. Seek another pulmonologist yesterday. Make it to his office, barely able to breath and he takes one look at me and sends me directly over to the hospital. Immediately started heparin. This time no VQ scan but it's the big guns. CT Angiogram. Morgan, this is where you come in! If you remember last month I had a cardiac cath but needed to be premedicated to due anaphalaxis with contrast dye. But that was done over the course of a 1 1/2 days with 40 mg of prednisone 3 times and pepcid and bendryl during the cath.. Yesterday, they did what they call the emergency prep. 125mg of Solu Medrol plus 50mg of benadryl. I'm freaking out. They also gave me an added dose of beta blocker, which I thought was a no-no but the dr. wouldn't llsten. Ok, I'm drugged heart racing and now down to the CAT scan. inject dye. Just can't swallow. Can breath, but no swallowing. Since it was done late in the evening, they keep me overnight. Slept ok I guess it was the benadryl. Today, anxiety is skyhigh. I was pacing the halls at the hospital. My heart rate and b/p were elevated. The admitting physician (a woman no less and one who should understand) has a psych. come in because I'm so darn anxious. He knew right away it was probably from the steroids. Offers me more klonopin. Does nothing. 5pm the admitting physician comes in and says that if I don't get my anxiety under control that my life will be ruined. I'm arguing with her (having a spliting headache to boot) that the anxiety is caused from the steroids and that I'm never this bad. Also I notice a lovely sunburn on my face but I've not been in the sun. Dye allergy? My question = Morgan do they usually push 125mg of Solu Medrol and 50 of benadryl? Can it make you anxious, heart racing, increase blood pressure? How long do the side effects last? I'm speeding away and no sleep in sight for me tonight! Anyone else have this experience? I guess it's safe to continue on my beta blocker? Oh, outcome - lung inflamation. Not sure, but could be beta blockers? I've been coughing all week more than usual and I know that betas can cause a cough??? Who knows maybe I'm just one of the people who can't take the bbs. Any insight would be appreciated or if you have similiar stories to share. Grrrr. I hate doctors!!!!!!!!!!!!!!!!!!! Do they not read drug reactions? Even one of the nurses commented on how steroids can make you crazy. Rene

I have the shaking/trembling, teeth chattering almost always on a daily basis. I feel like there is ice running through my veins and I cannot get warm or stop my knees from knocking together. Also, what's weird, is once I shake, my b/p goes up! I may get a reprieve, feel suddenly warm (at night) and then my b/p plummets. My handwriting has become awful due to the tremors. And sometimes I get the palpitations with the shakes. Very frustrating.

Please let me know how it goes! You can PM me if you'd like. Good luck. Rene

Jana, you are too kind. Those photos were taken pre-dsyautonomia when I had at least another 18lbs on me. I fear that I'll just waste away. Yes, I know what to count! LOL Thanks for being so sweet and thoughtful. I'll talk to you during the week. Hugs, Rene

Absolutely has changed mine and not for the better. I started out pre-pots as weighing 104. Now, 7 months later, I'm 88 lbs. My hair has gotten thinner, my skin is saggier (loss of muscle tone due to exercise intolerance). I look and feel older. I notice red circles under my eyes. There is a horrid frailness about me. I look breakable and where in the world did my breasts go? My eyes have lost their sparkle and there's no spring in my step. Sad. Rene

Thanks. Didn't know he's in the hospital. I have him being in the Riddle Health Care Center. Seems like you and I have opposite problems. My pressure is high, yours is low? I too take klonopin and now am on propranolol and not enjoying the ride! I do take the CoQ-10, 100mg daily. I'm glad he's receptive to your ideas. Most drs aren't. They have their own regime and want you to stick to their rules. Well, unfortunately we're not like other patients. How were you able to get off the meds? Glad you are doing better! Rene

Thank you HoudiniCat. May I ask, does he also do bloodwork or do you have to go elsewhere for that? He sounded genuine and sincere on the phone. I'm glad that you had a good experience with him. May I ask what he recommended for you? I know we all present differently and there is no one size fits all catagory. I just want to be functional again! Rene

Oh Bella, I'm so sorry You being so sick and having to take a cab home. And hospital staff don't get it at all. Nor do drs. My cardiologist was yelling on the phone to me about that no one can be that sensitive to so many beta blockers that it's anxiety on my part. Sure, the anxiety right now is giving me a stuffy nose, a headache and feelings like a zombie. He treated me so rudely and advised me to seek pyschiatric help. I guess if your a good, compliant easy going run of the mill patient, who doesn't ask lots of questions, who can tolerate their meds at their doses then they are fine with you. Throw one monkey wrench into the situation and right away they get flustered and dismissive and rude! I hope you continue to recover at home and I'm so sorry you had to do this alone. I know what it's like. I'm divorced and my girls are basically out of the house. I hope you get the wheels and they give you more freedom. Be well too! Rene

Bella, I have a feeling that I'm probably not suited for any of the betas. So, may I ask when you switched did you give it a few weeks or wait a few days then switched? My dr. isn't much help and it's so frustrating. I'm still on the propranolol and not enjoying it at all. So sorry that you have the flu. I hope you are feeling better. Thank you again for your warm wishes. Rene

Hi. I have an appt. with Dr. Michael Goodkin (he's on the list) in 3 weeks. Has anyone else on the boards been a patient of his? I actually spoke to him on the phone and he seemed very genuine and caring. Just wanted to know! I asked his receptionist if he know about dysautonomia and she said yes. I'm keeping my fingers crossed that I may have found the man that will answer my dreams! Rene

Hi. No antihistimines, they make me crazy! Seriously. I get the opposite effect. Wire me. So that's not the cause. I'm glad you got used to the procardia. I don't know how I'm going to get through the next 3 weeks till I see the specialist. Laying in bed is the only time I feel semi normal. Thanks!

Hi Pam, I can't take NSAIDS so no problems there. I try to eat healthy but the bbs take away my appetite. How much of the propranolol are you taking? I see you take 2.5mg -5 mg is it three times a day? They're so hard to break even though they are scored. Frustrating. I'm to take 5mg three times daily. I took my first dose this morning at 7:30 so I guess in theory being that it's 1:45 here I should take another 5mg? I don't know why it seems to be raising my pressure not lowering it. Also, do you experience palps? I have lots of PVCs and PACs.Great Oh please, this dr can't be believed. Yelling at me on the phone that the reason why I can't take bb is because I can't accept my illness. He knows nothing. Just three more weeks till I see the specialist. Seems like forever. I won't do the salt - although a few weeks ago on the atenolol I had to since my b/p dropped so low. Now it's always high. Thanks! Rene

Hi. Same way. Laying down in the am it 's low to normal. Standing increases. I think for me the propranolol is just making me depressed and causing more palps. And I too get the nightsweats then find that my pressure is lower! As soon as I lay down pressure does drop. But I don't want to spend my whole day laying around. But Im so dizzy on the bb's that I have no other choice. I do have a call into my pcp since my cardio has me convinced that there is no way that a b/p med can raise your pressure. Grrr. When you say wean down and replace them, I'm taking such baby doses does that mean you would be on two at the same time? Thanks for your info. Rene

Thanks, Jana. I know I shouldn't be switching, but they make me feel so awful that I don't know which is worse - the dysautonomia or the betas. I'll try to give you a call later. thanks for your well wishes, Hugs, Rene

Hi. I'm making the beta blocker rounds. Did atenolol for 1 month. Sometimes my pressure would drop too low, briefly (70/40 at it's lowest). But I've never truly had low blood pressure. Switched over from the atenolol to propranolol (small dose) and my pressure seemed better but still the high end of normal. Maybe 136/72. Did propranolol for 4 days but had stomach cramping and lots of palps. I know I shouldn't have, but I did a switch again to Zebeta 2.5mg on Monday and it made me so nervous and anxious that I thought no more and not only that but my resting b/p was 183/85. Not good. I layed flat and it did come down, thanks Firewatcher! I called the cardio yesterday and was due for meds at 1. He didn't call until later and read me the riot act that I was to pick either the zebeta or propranolol and stick with it. Well, my pressure was high until around 2 then it dropped to normal without any beta blockers on board. I wound up taking 5mgs of propranolol at 5 but prior to that, my reading were better. 129/72, etc. Ok, now I'm all over the place. Especially after movement of just walking around my b/p today has been as high as 171/80, h/r at 75. I'm to take 5mgs of propranolol 3 times a day. I realize that I hate all beta blockers. And don't know why my pressure is high. I can't call the cardio for when I did tell him that my pressure seemed to rise with the bb he told me that was impossible that I was making it happen! Thankfully, I will see the specialist, Dr. Goodkin in 3 weeks but in the meanwhile I'm stumped. I don't think can change betas again. It can't be good for my body. And firewatcher, you are right. The atenolol seemed to control my b/p the best, as well as my palps. So now what do I do? I can't call the idiot cardio because he thinks that this is purely a psychiatric problem! That I can't accept the terms of my "illness". So just checking to see if anyone else had h/p vs. low. Mind you in the am and late at night it's usually normal to low. So frustrating. I guess it would be called labile hypertension. And I wonder how dangerous it was to switch from one beta to another. I was always on baby doses. atenolol 6.25-10mg daily, then the propranolol around 10-15 mgs daily and the one day of zebeta 2.5mg. Thank you! Rene

Well, chalk up another beta blocker for me. After being on atenolol for a month, I was switched to propanolol for 4 days and started getting weird heart beats and just not feeling great. Enter zebeta (bisoprolol) at 2.5mg. Felt ok for the first hour or so and then, wham! Major anxiety attack. Felt like my whole body was being bombarded by adrenaline. Couldn't eat felt lousy and had some minor chest discomfort. And to boot, my pressure skyrocketed! Of course I have a call into Dr. G*d who's yet to call me back and I'm due shortly for another dose. Not sure if I should just take 1/2 at 1.25 or what. I know it's dangerous to just stop bbs but what if he doesn't deem to call me? I also feel like I have a hangover with a horrid headache. Any advice? Has anyone else ever experienced this while on zebeta? Thank you. Rene

Oh Bella, you are so kind. Thank you so much. As for the meds, my cardio takes days to get back to me and I don't think he'd be at all sympathetic for what I'm going through. I just wanted to make sure that I won't be harming my body by switching again to another beta. My body just seems to hate them all. Thanks again. Rene

Jenn, Glad that you figured out the problem. Sorry you had to go through all of that. Wow. Glad you are feeling better now. Side effects of meds stink. And I always get the obscure ones! Hang in there! Rene

I had the option to switch from Atenolol to either Zebeta or Propranolol. I opted for the propranolol. Today is my 4th day and not liking the way it makes me feel. Very anxious (I know it's supposed to relieve anxiety) and I'm having weird skipped beats. Only taking between 10-15mgs per day. I did have a stressful weekend, unfortunately, my younger brother passed away suddenly from a heart attack at 48. That may be contributing to the anxiety/skipped beats, but I noticed it happened the first and second day as well. I do have prescription for Zebeta, which I originally thought I was going to try, and was wondering if I could make the switch over tomorrow morning. The propranolol is short acting where the Zebeta is 24 hours. So if take 5mg of propranol tonight, should it be ok to switch in the AM? I consulted with the pharmacist and he didn't forsee a problem. I took my 10mgs of the propranolol this morning and know that I'm due for another dose now, but having had pesky heart flip flops, not sure if I should or not but then again, I don't just don't want to stop it since my pressure is up to 140/76 and the warning on the drug info says not to just stop it since it can cause serious side effects. Thanks for any responses. Rene

Oh Morgan, I am so sorry for your troubles. I know how frustrated you must be. And gallbladder pain is awful. I had mine out the year after my daughter was born (20 years ago) I was a guinea pig, one of the first in PA who had it done laproscopically. So sorrry about your financial woes. Can relate to that one as well. Divorced, forced to move out of my lovely home into a townhouse which I still can't get used to. As for as the ER, well we all know how that goes. It's as if you're a non entity. Just know that I'm wishing you well and hope things change for the better, and by now you had the pain meds that you need. So very frustrating. Hugs, Rene

Thanks. Sometimes I think that their secretaries run the show. Years ago, I used to work the front desk at my daughters' pediatrician and I never spoke to anyone that way. I always put myself in their place and would want to be treated in kind. And half the time the drs don't even know how their patients are being treated, nor do they care. Very frustrating. Have a good night! Rene

Hi. Well, after about a month on Atenolol, I have come to the realization that it's been this drug that has been causing the shakes and burning headache. So, I called the cardio yesterday inquiring about Zebeta, and of course never got to speak to him directly and the receptionist said he would call me back. Never heard from him. Today, again no phone call from him. I called the office again because after reading all of the posts on the board, I wanted to get his opinion as to whether he thought propranolol would be a better option for me since it works on anxiety. Well, I got his snooty secretary who said she already has a script ready for me for the Zebeta. (2.5mg). I kindly told her that I wanted to speak with the dr since I wanted to pose the question about the propranolol. She said he had gone for the day and that I have to pick one drug and stick with it. I told her that was not an acceptable answer that I had questions about the two drugs that only the dr. could answer. (Ok, he probably can't!). She then informed me that I call too often and I told her that if someone had managed to take down the message properly and pose the question to him, that there would have been no need for a follow up phone call from me. So, now I have a prescription for Zebeta waiting for me at the pharmacy. I've stumbled through the boards, reading some of your comments on it, and many seemed to center around feeling anxious and nervous. Has anyone been successful on the Zebeta without the jittery nervous feeling? It's the last thing that I need right now! Sorry if I've rambled but I've been frustrated all day waiting for the idiot dr. to call. Thankfully, I see the specialist next month if I don't wind up climbing the walls from the drug! Rene

Jenn, sorry it's been rough for you. You are my pillar of strength and I hate to hear that you are totally frustrated and I feel your pain. Doctors have a way of dismissing you if you're not bleeding profusely or have a limb that has been severed. That's my take. They hear what they want and discard the rest. As long as you are functional and breathing, and you give them your co-pay, then you are a good compliant patient and they chalk you up to being well due to their interventions! Hah! You know the stuff I've been through, "oh you've had a normal cardiac cath, therefore any chest pain cannot ben originating from your heart" to "it's just your anxiety and try adding an extra klonopin or two". Extremely frustating the way we all are treated. I wish you better days and I must say, you are one of the strongest, courageous people I've known. Hang in there girl, I need you for my moral support! Rene

Hi Maggie, I just turned 50 in April and my symptoms started in October. I flunked the formal TTT in February. Prior to the dysautonomia, I was diagnosed with both fibro/cfs approx. 9 years ago. Welcome to the boards. You will find wonderful information here with great supportive people who understand what you are going through. Rene