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Rene S.

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Everything posted by Rene S.

  1. Hi Pat, Sorry I didn't get back to you sooner. I've actually seen two EPs. Both barely have the time for me and quite frankly, I think they are sick of me. I guess if they can't fix it, they don't deal with it. I was using the Group out of Abington Hospital (there must be about 15) and saw the EP. The other guy is in Jenkintown with PA Heart and Vascular. He's the one that dismissed me. Are there other type of drs we go to? This is all so confusing. And during my tilt table test at The Braemer Heart Institute at Einstein my b/p went to 40! You kind of wonder if that can trigger a major flare up and that same week is when I had my nuclear stress test. After not being able to walk that much to suddenly be running on the treadmill really took a toll on me! I wish everyone well and if anyone else in the area knows of someone, please pass their good info along! Many thanks! Rene (ruekat)
  2. Thank you all so much. This is so frustrating. Today I was supposed to be my first day off of Paxil and I'm already having withdrawal effects and I was only on it for 7 day at 5mg. The dr. says it's impossible. I called my gyno and she said I can start up with my vivelle dot. I'll shoot for Friday. I don't understand why my pressure was so high yesterday and low this morning. Grrr. Now it's probably high again. And I too get the chest pains going up the steps. I feel 90, not 49. Yes, the times I have attemped various beta blockers have left me even more weakened. I'm so frustrated. I 'm tired of drs. I live in Bucks County, PA. (outside of Phila). Does anyone know of a good dr. who deals with dysautonomia? I do believe it's POTS but was never given a name. I just want to live again. I'm tired of shaking and feeling as if a load of laundry is a big accomplishment. Thanks for all of your imput and suggestions. Ruekat
  3. HI Tommy, My heart goes out to you. We have to stop blaming ourselves. We didn't ask for these conditions. I get so frustated too when I think of all that I used to be able to do. I can't even take a simple 20 min walk anymore. I'm lucky if I can go up and down the stairs a few times a day. Take care of you! I know "normal" people have no idea of what we're going through. They don't understand why we can't go and walk through a mall or supermarket shopping. Anytime you want to vent, we're all here to listen. So vent away. We can totally relate. Hugs, Ruekat
  4. Hi Broken Shell, I like you are super sensitive to meds. If you recall, I started Paxil this week and it's been sort of a bumpy ride for me. As far as the klonopin goes, I've been taking it for 8 years (small dose for the fibro) and I've not really noticed any bad effects. It doesn't make me sleepy and I seem to function ok with it. Once I tried Xanax and I had a rebound effect I was flying! Everyone's body chemistry is fine. Klonopin is used all the time for people with fibro/cfs it just take the edge off of things when everything is overwhelming or sensory overload. Good luck to you! Ruekat
  5. Hi. I was diagnosed with dysautonomia back in Feb. Had symptoms since November. Prior to that I was fine. My b/p was always 90/60, and pulse 60. I always had palps so they put me on the Cardionet event monitor. Well, I had one bout of non sustained ventricular tachycardia (I was sleeping and didn't even feel it!). Since then, my life has been ****. They threw me off antidepressants (I have fibro/cfs) and my HRT. I had an MRI of my heart and it was structurely fine as well as a stress echo. I was started on atenolol (couldn't tolerate it, then Coregard, also couldn't tolerate it, then finally metoprolol, made me depressed and exhausted all were small doses). They seemed to raise my b/p so I was checked for a pheo and it was negative. To make a short story long, I saw another EP and he said that I didn't need the beta blocker, even though at this point my heart was always racing when walking or standing. Now comes the fun part. Since Nov., my symptoms were getting worse. B/P all over the place from extreme lows to highs. Whenever I stood pulse was over 100. I've had chest pains, rapid weight loss and shakiness all the time. Prior to the tilt table test my cardio thought it was all anxiety/stress related. I was on klonopin. I've been to the ER several times with horrid chest pains and they all say non cardiac. I even had a nuclear stress test. Ok, here's my point sorry - I saw my EP today and he basically dismissed me. I started Paxil 7 days ago, don't feel great on it and he just suggested to go off and go back on the hormones. When I mentioned the fact that he was going to put me on Pindolol (another beta blocker) he said there wasn't a reason. So, here's my question, it can't be good for our heart to go from over 100 to 80 in a matter of seconds. And my pressure goes up which I don't understand. Going up and down the steps winds me, like I've run the marathon. I get tired so easily and fatigued and have awful night sweats. Even prior to the dysautonomia presenting itself, the heart tests were normal so he's going by all of these. Basically telling me that everything is in my head. Grrrr. I know not everyone here is on a beta blocker, but do you get chest pains? And does just simply walking up steps increase your heart rate and leave you short of breath? I'm also nauseated all the time and can only eat small amts. Sorry I'm just scared and I will probably call the cardio tomorrow and let him get mad at me again but I want to know why I'm tachy. Can lack of hormones do this? And why all of a sudden does my b/p spike? Thought maybe it had to do with the Paxil but I could be wrong. Any suggestions would be greatly appreciated. Or explanations! Thank you all so much! Ruekat
  6. Thankful, you could be me! I always thought my pressure should just keep dropping when standing, but lately it's been shooting up! Grrr. I'm tired of this. And I started a low dose of generic Paxil which isn't making matters better. It's causing even more anxiety. I'm tired of having no interest in food and as for driving, I haven't driven in a week since i had such a bad experience where my heart was racing so that the palps came and I thought I was going to pass out. This is no way to live. I see the EP cardio on Tues (providing I can find a ride and maybe then I'll decide to start the small amt of Pindolol that he recommended. Thank you. Rene
  7. Thank you Potsgirl. Today is day two and I feel so darn jittery, and it's only on 2.5mg. YesterdayI thought I would crawl out of my skin. The symptoms abated somewhat last night, I was able to sleep, but woke during the night a few times. Every A/D I've ever been on has caused this. So infuriating. I was talking to a friend yesterday and he takes 80 mgs of the stuff! I'd be swinging from the rooftops! And the Paxil is generic so I can't compare it to the brand since I've never taken it. I do notice my heart doing little flops and that my pressure is up. I don't know if it from the anxiety the med is producing or what. Every day is something new. I thank you so much for your reply. Best, Rene
  8. Sorry Flop, trying to get a handle on how to reply to sugjects. I did have a tilt table done here in Phila at the Albert Einstein Braemer Heart Institute. I didn't pass out until the nitro was administered. I felt faint and woozy during the pre-nitro portion and not sure how low my pressure went because I never got the report, but I was told after I passed out and came to (what a horrid feeling!) that my b/p was 40 and my pulse was 130. I was sick for two days. Flop, I noticed that you are on Paraxetine (generic Paxil). Sorry to change subjects but I wanted to know how you are doing on it. The reason I ask is that I'm to start it tomorrow. I never much cared for generics but that is all that my drug plan will allow. I'm to start slowly 5mg (I'll probably take it down to 2.5). Has your heart been any more tachy since you started it? although I see you are on a beta blocker. Just wanted your thoughts opinions about the drug. Thank you so much. Ruekat
  9. Sorry about that Fearless. I didn't mean to duplicate your reply. We share many of the same symptoms. I'm so sorry that you have to go through this nightmare as well. I thank you for explaining about the med and also your experience with the rapid heart beats leading to chest pains. Whenever I drive (and maybe that's why now I have a phobia), I get all tensed up and the palps are non stop. As soon as I'm home and safe they dissapate. I have been tested twice, including an CAT scan for a pheocromcytoma and it was negative. I'm supposed to get my morning cortisol levels checked but haven't been up to it. I'm tired of being nauseated and not being able to eat. I have to force food down my throat. Potsgirl Thank you for your reassurance about the Paxil. I'm starting at a baby dose if I get up enough nerve to take it tomorrow. 2.5 even though the psychiatrist said start at 5mg for 4 days then double it to 10. Not with my system! Do you get any palpitations or anxiety with the Paxil or did you when you first started? Have you ever tried to wean yourself off? The internet can be a scary place filled with horrible experiences. I often wonder how real the postings are. I wish you both well and keep your fingers crossed for me. I only fear that by taking the Paxil, I'll give myself a heart attack from just the fear alone. Have a good night. Rene
  10. Hi. Forgive me if I'm repeating myself. I'm so wrought with emotions that I don't know what I should do. I'm majorly depressed (please read about me to find out way; too long otherwise!). In the past, I've taken Zoloft with much success then it stopped working. Never got to a high dose, but it started bringing on anxiety even with the klonopin. Then I was switched to Lexapro, only got to 7.5 mg. and that was great for anxiety but not so great for sleep or depression. As I mentioned in my first post, I had to stop everything cold turkey when the CardioNet event monitor picked up one incident of non sustained ventricular tachycardia. The drs felt it wise to stop everything cold turkey. (HRT, Lexapro). My therapist firmly believes that could have triggered the dysautonomia along with other stressors in my life. My biggest fear - having a heart attack. All heart tests have been normal, but I'm afraid if I stay in this depressed state I will cause myself to have one. I want my life back. Geez, just trying to unstick a kitchen drawer this morning caused major fatigue and my heart rate to go to 115. I miss shopping, exercising, socializing, laughing, eating, etc. I'm basically home bound and not happy about it. Sorry that I'm pouring my heart out, but none of my friends, my daughters or others understand what I'm going through. So tomorrow I'm supposed to swallow my pride and fears and swallow that darn Paxil pill (I will take only 1/2 of a 5 mg pill due to drug sensitivities). I'm just so fearful of it. Meds and I don't agree. Please, if someone has some great experiences with Paxil, I'd be grateful if you would share. I live alone and I need someone to hold my hand. There are so many negative references to Paxil on the internet, even one that it can damage your heart???!!!!! That's a biggie for me. Oh and the withdrawal effects that I've read sound dreadful. Sorry to be a bother and thank you all so much for allowing me to vent. Ruekat
  11. Ernie, May I ask what is Proamatine? Sorry I'm trying to learn by reading everyone's posts. Brianala, Thank you. I'm so sorry that you had to go through a divorce as well. And I too experienced depression from the betas even on a small dose. I'm so sensitive to meds! May I ask how you deal with the anxiety/depression? For me, it's overwhelming and paralizing and I don't know how to move on. Potsgirl, Does the Paxil increase your tachycardia? I'm just scared of the starter effects as I've experienced awful ones on both Lexapro and Zoloft. And yes, I know to go slow on the dose! I'm supposed to start at 5, but knowing me, it will be more like 2.5. Do you remember the dose you started with and did it increase the anxiety? Broken Shell, Thank you for your warm welcome. My cardio seems to know someone about Dysautonomia. We'll see. Now, about the palpitations anyone know why they are worse when my heart rate is higher or b/p is elevated? It's all so confusing. Thank you for allowing me to be a part of your community. Best, Ruekat
  12. Hi. I had my official diagnosis of dysautonomia on 2/9/08 after having the tilt table test done using nitrogylcerin. I did the part ok without it, felt sick, dizzy but still was functional. 5 mins after the nitro, I crashed. B/P went to 40 and heart rate went to 130 passed totally out. Never felt so sick. Just a bit of background on myself: I'm 49, divorced, 2 adult daughters. Diagnosed with fibro/cfs 8 years ago. Did well on zoloft and klonopin for all of those years. Experimented with Lyrica (hated it), Neurontin, and Skelaxin. I also went through early Meno and was on bhrt from the ages of 44-49. I had switched antidepressants to lexapro, helped with anxiety, not so much with depression. Well, my world crumbled at the end of October. I was wearing a cardioNet event monitor when it picked up one incident of non sustained ventricular tachycardia for 9 beats. I was sleeping and totally unaware. Right then and there, they threw me off the hormones and antidepressant and tried various beta blockers, which led to more depression. Crashed big time. Had tons of heart test including MRI and everything was structurely ok, but I was falling apart both mentally and physically. At the time my divorce was being finalized and I was in the process of moving and grieving. My b/p was always 90/60, heart rate 60-65. After all of this, my heart start racing whenever I stood up. The next cardionet showed basically all tachycardia. My anxiety level has doubled and I'm totally depressed. Started back on the Lexapro with my new cardio's permission but this time I couldn't handle it. Major palps. So, figured try the Zoloft and once again the same thing happened. Here are my symptoms: Depression/Anxiety Rapid heart rate (just standing goes to 115 or higher) When lying in bed, b/p is normal, but sometimes when I'm anxious or even standing I get high b/p 150/80 or higher and when this in combination with the high rate, I get hard strong palps that seem to go on forever. My appetite is in the toilet. I've lost about 14 lbs in 3 months and I only weigh 90lbs now. I'm nauseated all the time, no appetite and now my gerd and IBS is back. My life as I knew it is over. I've become afraid of driving, won't leave the house (horrible anxiety) and this is totally out of character for me. I get dizzy, I shake all the time, both internally and externally and go from freezing cold in the day to night sweats. I also notice that when standing, my legs seem to change colors (reddish) and if I touch them you can actually see where my finger prints are. Horrible chest pains which have landed me in the ER numerous times - everything checks out ok. They look at me like I'm nuts when I say I have dysautonomia. Exercise intolerance. I used to be able to walk 3 times a week even with the fibro/cfs, now I climbing the steps is my only form of exercise. I also get short of breath easily. I am seeing a therapist and just started seeing a psychiatrist who wants me to start Paxil. I'm scared to death to take it. One of the side effects says tachycardia! I do take .5mg of klonopin 3 times a day. My cardio wants me to eventually start Pindolol (beta blocker) 2.5 mg daily. For now he wants me to increase sodium, but my pressure is never really that low. I have gotten myself stuck. Does anyone else take Paxil or Pindolol? I'm so sorry for this long rant. I'm at my wits end. I'd love any suggestions, imput or similiar stories. Thank you for taking the time out to listen. It means so much to me. Ruekat
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