Rene S.

I definitely think that I experience vasospasms or variant angina or Prinzmetal's. Whatever terminology you want to use. It happens to me at night. starts out with a muscle spasm down the center of my chest with heaviness, radiates down my arms, horrible pain in my throat and jaw and I sweat. I pop a nitro and it usually dissapates, or I fall asleep. Tired of running to the ER when it happens. I'm still not feeling great after having one on Sat. night. Betas make it worse. I have tried the CCB and they speed up my heart rate. The problem is that I've seen a few cardios who have no idea about our illness and insist that vasospasms are so rare and because I've had a clean cath that it wouldn't matter anyway. Grrr. Unless you are having one right in front of their eyes, they tell me it's esophogeal spasms or heartburn but I know it's not true. Just wish I could get a proper diagnosis for it just by my description. Very frustrating. I did try Coreg for a few days but it gave me horrible irregular heartbeats. Don't know what else is next. I'm supposed to see a Cardio next week who knows about POTS/dysautonomia so I'm keeping my fingers crossed. I'm tired of having my chest pains dismissed just because my cath was clean and stress test was normal. Rene

Hi Noreen, Welcome to the Boards. Sorry that your condition brought you here, but you'll find a group of wonderful, caring, compassionate an extremely smart people. Whenever you feel down, or just want to share, check in. Everyone makes you feel so wanted and have nothing but kindness in their hearts. They have helped me so many times when no one else understood. Take care of yourself. Rene

This is my second winter with dysautonomia. I'm freezing all the time. I'm shorter of breath, more tachy and I shake and tremble even though the heat is on 71. Going outside I can't stand no matter how many layers I have on. I walk around the house with a heavy bathrobe on top of my clothing. Very attractive. My normal body temp. is now around 96. Let's just pray for Spring! Rene

It's pretty lousy, isn't it? Talking makes me feel like I've ran the marathon. Shortness of breath so bad that I have to stop and take a breather and my heart rate goes way up. Jana, sweetie, I feel the same. I feel as if I'm getting progressively worse not better. This is all so frustrating. Sorrry we are all going through this. Rene

Hi Tilly, We could be twins. I've also had readings as high as yours although my diastoliic is usually within normal range. I did the ambulatory b/p monitor twice and showed high readings during the day 168/75, 171/80, etc. As soon as I sit down, it usually comes down to 140/65. It's frustrating, because some drs won't treat it because they say unless it's high 65% of the time, there is no need too. Although I feel pretty lousy when it's high. Then again at night, it goes as low as 90/58 and then I get horribly tachy. I've tried the betas and they raise my b/p. Tried CCB and hated them. The last I was on an ARB, Cozaar and that just made me tachy. Now one of the drs wants me to try Benicar which side effect profile lists tachy and palps as side effects! And my pressure changes within 3 minutes. Very frustrating. Prior to last year, and being on hrt, my b/p was always 90/60 and hr in the 60's. I did have an echo yesterday because I swore that I was wearing out my heart. I too went through early menopause at 43. This whole thing is frustrating. I can go up and down 40 points within minutes. Crazy. Hope you can figure it out = when you do let me know! Rene

Hi Jana, I'm certainly in the minority. I take .5mg of klonopin three times a day, and it never makes me tired. Sorry - I wish it did. Sometimes I actually think I'm having a paradoxial effect - it revvs me up! This happened the one and only time I took a small dose of xanax. How I wish I could find something to make me sleepy! Hope you are doing better today. I'll email you later. Sorry you are having a hard time. xoxoxo Rene

So sorry for his rude manners. I have IST, PACs, PVCs, and one bout of non sustained v-tach. Seen three different cardios this year. All say the same - get back to your normal weight, too thin, do your best to exercise and deal with the tachycardia and the more you exercise the less tachy you will be. Grrrrr. They are clueless for sure. I truly believe it's because we are women. Hope you find a dr that will take you seriously. I'm still searching! Rene

I know how frustrating it is to get a diagnosis of Prinzmetals I had a cath, no spasms. What do they expect, we should carry an ekg machine 24 hrs? Of course when I do the holter nothing shows up. It's frustrating and no one will give me a definitive. I was thinking of starting back on the coreg but I remember the few times I took it I had horrible palps. I hope you find your answer. If the nitro is helping you, ask for imdur or a patch which I think someone else mentioned. Please feel free to email me if you'd like. ruekat@comcast.net Rene

I know how frustrating it is to get a diagnosis of Prinzmetals I had a cath, no spasms. What do they expect, we should carry an ekg machine 24 hrs? Of course when I do the holter nothing shows up. It's frustrating and no one will give me a definitive. I was thinking of starting back on the coreg but I remember the few times I took it I had horrible palps. I hope you find your answer. If the nitro is helping you, ask for imdur or a patch which I think someone else mentioned. Please feel free to email me if you'd like. ruekat@comcast.net Rene

Hi. I know someone on the boards suggested the possiblity of prinzmetal's angina,or variant spasms. You have classic symptoms, especially since they go away with the nitro. Unfortunately, which I found out for myself, that you can have perfectly normal ekgs, stress tests, etc. The spasms usually occur during rest, and may result in higher troponin levels which I have experienced myself. Some times I can go months without them. I also found that beta blockers unfortunately made them worse. Drs. recommend calcium channel blockers and sometimes imdur a long acting nitro. I'm sorry I found your posting so late. And the sad part - most drs don't know anything about prinzmetal's/variant spasms, or the think that it's not happening to you. There's a great wbsite called Inspire.com and if you click on women's heart disease and type in prinzmetal's you will find many of your symptoms. Good luck I know it's rough going through it myself. Best, Rene

Thank you, I jumped in and took the plunge with a tiny 25mg dose of labetalol after having extreme pressure readings this weekend. I feel a bit dizzy and woozy and I hope it doesn't lead to a coronary spasm. I was told by the osteo cranial dr that I am a slow metabolizer and also my gyno today told me that because I'm so tiny that I would be wise to start as low as possible. Thanks for all your support. It's just awful starting a new med when you are by yourself. Be well to all! Hugs, Rene

Thank you. Sorry it didn't work for the tachy or palps. That's what I need it for! Grrr. Do you remember how much you took, for how long and any side effects? Still on the fence on this one. Thanks, Rene

Hi Tilly, I've also been tested numerous times, including urine and blood plus a CAT scan of my adrenals. Still, I have my doubts. My numbers were on the high side of normal and they say that pheos can lurk anywhere. Maybe it's just wishful thinking on my part and it would be a great way to end this all. Especially with the extreme ups and downs with the b/p the tachyness, stomach problems and I also have the flank pain. I've been told that the plasma metanephrines are usually as accurate as can be. I have seen two endos and both try to assure me no pheo. However, Dr. Goodkin (local POTS dr) says there is something called a pseudopheocromcytoma. Need to research that one. Take care. I feel your frustration. Rene

Here I go again on a beta blocker hunt. Both my nephrologist and cardio thinks that this drug would be wise for me. They wanted me at 100mgs twice a day, but another dr. that I spoke with said start verry low more like 25mg. I've had reservations in the past since there is a chance that I have variant spasms/prinzmetal's and betas are contraindicated. But because it's both an alpha and beta blocker I was told it might be safer if I do indeed have the spasms. I'm in a quandry because we all know that I research things to death and some scary side effects and while most of you might be ok, I fear them. Dr. Goodkin was the only one who is against this drug. He thinks it may drop me too low, for I can go from 167/76 to 135/68 in two minutes. Also, I heard that this drug really doesn't do anything for the tachy. I just need something to get better control, for taking nothing is giving me major headaches, shaking and feeling really cold. Any suggestions? Also, I do have the lovely palps, pvcs and pacs and was wondering if labetalol helps with the arrhythmias. Anyone else with heart problems on these drugs? Thanks for any and all opinions. I did try bystolic but found it actually raised my b/p! Weird I was also told that this drug wouldn't trigger spasms but not sure. Maybe it's worth trying again? Thanks for being here all of you. I've never met a group of more compassionate people. Hugs,, Rene

Thanks everyone for your imput. I really liked the dr today. He spent alot of time with me, knew lots about autonomic dysfunction, did some very gentle adjustments. Told me that he's going to do his best to help restore some of my function. Stressed the importance of nutrition and knows it's hard for me with the gastroparesis. I told him about rapidly fluctuating b/p and he said that hopefully through the manipulations and some biofeedback and other ideas that he had that perhaps I can get my b/p on a more even keel. It's just been a week from h*ll and can't stand the lability of my b/p. It's been way too high this week and it's starting to really scare me. I don't want to spend my life staying in bed but this week I can only keep my pressure low this way. Grrr. I also has a nuclear stress test plus tons of blood work this week and maybe that's making me feel so ill? I've been more tachy than ever. So I digress, but I'm praying that this Dr. can help. Too much adrenaline running through my body. Fight or flight at its worse! I go back next week to get the real work started. I'll keep everyone posted. Thanks again. Rene

You can get most of the ssris in a liquid form which can allow you to start at a tiny baby dose. Rene whoops, sorry didn't see Nunn's reply

Hi KC, I had great success with zoloft for 8 years prior to dysautonomia. Now, I'm the same way you are. i've started it up a few times, the last attempt had the same reaction as you. Fine for the first 6 hrs and thought hey I'm ok with this, and wham, by the 7th hour I was a speeding lunatic with the worst headache and feeling of blood rushing through my body. I live alone and it's not easy when starting a new med. Not sure why this happens, but it's happened with the SSRI's that I have tried. Rene

Hi Nikki, I feel your frustration. I was out yesterday and walked around too much and felt like I was going to pass out. Got out of the store quickly and while driving my heart rate was through the roof and I knew my pressure was high. Thankfully, I was close to home, for a felt a definite graying out period. My b/p has been all over lately, but basically high. Thurs night it was at 171/75 (measured at the dr's who told me to go home and lay down) and Fri when a woke it was 94/49! Grrrr. Yesterday after my incident in the store, my b/p was high most of the day. Tired of all this and sorry that this is happening to you and Bella. When I had my neurepinehrines (sp?) They were sky high. Great. The debate for me is should or shouldn't I be on a b/p med? I've had conflicting answers from different drs. Very frustrating to say the least Feel better. Rene

Hi. I spoke with Dr. Michael Goodkin yesterday, POTS specialist in Media, PA. I've been concerned with my symptoms that aren't abating, especially the labile hypertension. He came right out and said that he didn't think that meds were the answer for me, but rather cranial osteopathic manipulation. I told him that the person he recommends is way too far for me to go. While on the phone with him, he took the time and found me someone in the area! Dr. Thomas Sabalaske in Feasterville, PA. Dr. Goodkin seems to swear by this technique. I figured I have nothing to lose, so I'm going to give it a try on Friday. I was going to try labetalol but Goodkin felt it might be too strong. The other night my b/p was 171/75 and I was so sick. The next morning I awoke and was sweaty and took my pressure and it was 94/48! But that was while I was still in bed. The fluctuations are just driving me nuts, as I'm sure they do all of you. Goodkin says that the cranial manipulation is supposed to stabilize b/p and help with the autonomic nervous system. Just throwing it out there. Have you tried it? Successful? I used to go to a chiropractor prior to this illness and went for over 7 years. I asked him if it were anything like that, and he said no. Curious to see what the difference is. Thanks for any imput. Rene

Thank you all to my wonderful friends on the boards. I know what I have to do, it's just frustrating. I truly wanted this drug to work and have stuck with it over 5 weeks now. My problem is trying to find a psychiatrist who gets POTS. Or any dr. in this area. My POTS dr has been in contact with my psych when she wanted to put me on remeron. He thought it was just for sleep and that's why he gave his approval. I placed a call to him on Weds and I guess he'll return it on Monday. In the meanwhile, I know I need to trust ME before I can trust any drs. Dear Jana, you have always been one of my biggest supporters and I thank you. Bella, thank you. I know many can't take the A/d but I want them to work so badly. I took them before bcoming "ill" and now with the anxiety and depression over losing many things in my life, I just want it fixed. I can't believe that I'm still dealing with this issue. Finding another shrink will be a nightmare. Is there anyone in this area that gets it??? Nina, If I recall, I think you said it was Dr. Kempf at Penn? And that's great to hear that you know the frustation in finding a psych in this area. I just want a name of someone who takes my whole situation into consideration. My therapist is ok, but doesn't understand that the anxiety is POTS related and having such a high neurephinephrine level doesn't. Even when I showed my psych the results of my levels she said she had no clue as to what that means. Thanks for the info vemee, I didn't know that having a high neuroepi level can cause cardiac problems. I already have arrthymia problems. Sheesh. And now I'm to choose between the zoloft (she would start the baby dose at 4mg) and that's what she wants me on or another SSRI of my choosing. Well, I'm not a dr. Just frustrated. Kexia, yes zoloft is stimulating to me in the beginning! It's horrid. I guess because my problem is anxiety and it brings it to the surface. Thank you all for your advice. How I wish you were doctors! Hugs to all and a happy and healthy new year. Rene

To those who are folowing my saga, I so appreciate you being here for me. I did see the shrink yesterday Told her emphatically how much I disliked the Remeron. I had a list all prepared of how I felt differently while on it. She looked at me and said "You look so much better". I wanted to scream. She also said that since I'm eating now (had no appetite before) and that I was sleeping through thee night, she saw no reason to take me off the drug. I explained calming and rationally that it's not a great drug for POTS, that I feel tachy when standing and then sitting down I feel strange. That I'm jittery and cold all the time and that my b/p has been higher than usual. She said that's anxiety. Well, doesn't that mean the Remeron isn't working? She then said we could add an SSRI to the mix. Which one? That is up to me, since I can't tolerate drugs. She doesn't believe that, but we all know how dysautonomia affects most of in our ability to assimilate a new drug into our bodies. I had been on zoloft for 8 years then it pooped out on me prior to getting this illness. I tried Paxil for about 8 days and felt horrible, the lexapro was ok but I went into V-tach for 9 beats (I was wearing a cardionet monitor) and this was also prior to being diagnosed. Still she said that Lexapro would be ok but I'm scared of having that heart problem again. I did try it a few weeks back and was so much more depressed and couldn't put a bit of food in my mouth. So, where does that leave me in all this? Which drug do I choose? When I was on zoloft all that time, I still had breakthrough anxiety and some palps. The drug is just so stimulating. And to take it with the Remeron which is also making me jittery? Easier said than done to find a new shrink that will take my insurance as full payment. This one believes that you should be on a med for at least 4 weeks to give it a chance and if I am to have problems, she will not change meds unless I gave it a fair trial. Even if I have awful side effects. She has me taking low doses of klonopin and ativan and they don't touch what I perceive as anxiety. When I had the saliva tests done, my neurephinephrine was through the roof, and Remeron is known to raise it! This dr. does spend over an hour with me, and takes all my vitals every time I see her, but still, she hears me but doesn't listen. She's a psychpharmacologist, graduated from Penn and did her residency there, she's an addiction specialist, (that's one problem I don't have!) but doesn't have any clue about autonomic dysfunction. She called Dr. Goodkin (local POTS dr here in PA) and he said Remeron was ok. When I called him about it, he said it will help you sleep but it's not great for POTS. Why didn't he tell that to her??? Sorry, I just need to vent. Does anyone see a great psych. or cardio anywhere near me? I'm so frusrated. I'm trying so hard to live a normal life and it's not working. I'm in Bucks County, PA, outside of Philadelphia. Any words of wisdom would be apprciated. Thanks again Happy New Year to All! Rene

Hi FutureHope, Thanks for your imput. I know, my dr. keeps thinking that this is the best for me. I'll set her straight on Tues. Right now, I'm feeling strange, I forgot to take my dose last night. My heart seems to be doing weird flip flops but that could also be from eating too much junk today! skyblu, yes I know that the benefits should outweigh the side effects, but so far, I'm not loving this drug and will express it more clearly when I see my psych in person. It may have increased my appetite, but I'm still jittery and anxious as can be. I'll let you know what happens. Thank you both so much! Hugs, Rene

Hi. I thank all of you for letting me know about your experiences with Remeron. Well, me, the one who's terrifed of drugs has stuck with this for nearly 4 weeks. I've come to the conclusion that I'm not liking it at all. I'm shaking now more so than ever, like a full body tremor that makes my legs ache! I feel like I can never get warm, am very dizzy and tachy while standing up for more than 5 minutes. Out of breath and just feeling lousy. The only good thing I can say is that I'm able to eat. I'm on a small dose, 7.5mg and so far it's done nothing for depression and only seems to have increased my anxiety. I spoke to my psych. last night and told her that this isn't working. She very calmly kept repeating "It's not the end of the trial run", meaning that she wanted me on at least four weeks at the 7.5mg dose. She told me to just up my klonopin or take ativan as well! I had started out on 3.75mg. I tried in vain to explain that this wasn't cutting it, that my POTS was worse and that when I had my norephinephrine levels checked (done through both saliva and blood prior to being put on Remeron) that they were through the roof. Remeron is known to increase noreph. as well as serotonin, which I'm low on. She said that when I had the testing done, she didn't know if that meant it was high in my brain, which region, etc. I tried very calming to tell her that my dizziness is unbearable and that I feel like crud. I asked her if I was a patient with an infection and the antibiotic I was on was giving me GI upsets, vomiting, etc, wouldn't she switch me to another class? She once again said, stay on the med, I'll examine you on Tues. when I see you. Then she went on to say that if she were to switch my drug on Tues that I would have to wait a full week to before starting another drug trial. I'm not a guinea pig, but a human being. I know the answer is to find another psych., but they are far and few between around here and it takes at least a month to get in. Furthermore, most don't take insurance (mine does) and I've paid out of pocket one time $350 for 1.5 hrs of a psych's time and she was a loon. I must admit that she returns all phone calls, and does a thorough exam each time I see her to check my b/p, hr and weight. So, I feel trapped. I did half the pill last night (or quarter it) so I only took 3.75 mg. I told her that I was going to do so. Now I have to go through withdrawals, I'm sure. Just looking for advice and opinions on this subject. I feel trapped. My body has betrayed me and I can't relay that to my shrink. We're not like normal people that can take these meds and not be able to stand up or be dizzy or just function! As a foot note, does anyone have a good psych in or near Bucks County, PA? Thank you for any advice. Have a wonderful holiday to all! Rene

Sweet Michelle, I'm so sorry that you are going through all of this. What a kind, compassionate wonderful person you are. You don't deserve this. And your optimism always shines through. I know you are going through a tough time and yet you still have the time to think and care for others. May you have a wonderful holiday season, knowing that you are loved by many of us on the boards. I hope things get better for you and for everyone in 2010. With love and hugs, Rene

Tearose, you are correct. I nearly died twice - both from anaphlactic shock caused by compazine at the age of 12 and then again from CT contrast dye at the age of 22. I've always been sensitive to meds, but much more so since the dysautonomia. I'm now working with both a Cognitive Behavorial therapist as well as my psych. I've gone 3 weeks on a med now and I'm not enjoying the side effects and it takes all I can muster to put it in my mouth. I wish I could say that the drug is working, but so far I'm not seeing improvement. I have no fears taking an antibiotic if it means getting rid of an infection. I know we are all fearful and there's so much on the web that scares us, but then again, when we pick up our scripts at the pharmacy, the inserts on the warnings can be 2 pages long. Sometimes I long for the good old days when I was ignorant, and just took the meds as prescribed and we didn't have the internet to do so much research. Lissy, we both can get through this! Thanks, Jana, you are my hero and I marvel at what you can do! Hugs to all, Rene