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Jacquie802

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Everything posted by Jacquie802

  1. Boston medical center and Beth Israel are both in ma and have autonomic doctors as well as testing!
  2. Just curious how many of you take a beta blocker and ssri? I looked up drug interactions and it says there's a moderate one between these two drugs...
  3. Just finished having a ttt. Just curious of anyone else had severe headache after the ttt. I was fine 20 after the test, but now I have a massive headache...
  4. Hang in there. I got sick after my 19th birthday. Hopefully you're symptoms get a lot better after some time.
  5. I don't tolerate midodrine or florinef because of the severe headaches, so I'm hoping to find something that works for me.
  6. I've been waking up at night with pvcs and sometimes a rapid heart rate. Do beta blockers help with these?
  7. Thank you everyone for your kind words. I am having a repeat tilt table test Thursday since it has been 4 years since my last one. I'll update everyone!
  8. After being well for a few months I'm having a bad relapse. I've had POTS for 8 years, I got sick around my 19th birthday and here I am. A few weeks ago I felt nauseous for a week, but never threw up or had diarrhea. Ever since that week I've been feeling horrible. I can barely take my dog out for a ten minute walk without feeling like I'm going to pass out. My heart rate is all over the place and my blood pressure stays around 90/54. I'm just so sad and upset that a few weeks ago I was looking for a part time job and now I can barely stand. I don't do well with Florinef or Midodrine because of the severe headaches they cause me. Guess I'm just feeling very hopeless. Has. Anyone suffered a relapse and if so how long does it last? Will it take me another 8 years to get better?
  9. Hi guys! Just wondering if anyone here experiences pvcs during svt attacks..? I went to my cardio and the event monitor showed pvcs during my svt events. Cardio didn't seem too worried....
  10. Just wondering what beta blocker and what dose those of you are on who need the beta blockers for tachycardia...?
  11. Has anyone noticed or had a severe urgency to urinate after tachycardia episodes? I've been experiencing this and the ER doctors looked at me like I was crazy...
  12. Hi there, I ended up back in the ER today. I had severe episodes of tachycardia. What I've noticed is that for the past two days my legs and feet have felt like there's electricity or something flowing through them...does anyone else experience this and/or know what it is?
  13. So they can have a positive impact on symptoms?? Does the serotonin cause these changes? Also, how long until the effects took place?
  14. Im starting Zoloft for anxiety and am wondering what benefits others have had with SSRIs in regards to POTS symptoms...
  15. I'm not sure why my insurance won't cover it, but I'm guessing it has to do with its high cost...
  16. Hi, thank you for your reply! Years ago I was tested for Celiac disease and tested negative. I wish I could figure out what's going on with my stomach...
  17. Just wondering if Tylenol or something similar helps those who have head pressure from Midodrine. My Bp isn't high on it (107/79), is the highest it gets....
  18. How do those of you with POTS get your insurance to cover it? My GI I used to see gave me an RX for it before, and it did help a great deal. However, the second RX I got a year later from the same doc was not covered by the insurance. He did a prior authorization and everything, yet it would not get covered by my insurance. Just wondering how those of you who receive Zofran get it covered. (My doc tried to get the prior authorization for ondancetron-Zolfran's generic too)....
  19. Hi everyone! As some of you may know I have been experiencing nausea, sweating, palps, etc. during the night. I went to my primary care who put me on Ranitidine, which worked well but I saw that it should not be mixed with midodrine-which is what I am on for bp problems. The doc switched me to Protonix and it has not helped at all. The doc thinks I have acid reflux, which I'm not so sure I do. I saw a doctor that was on call Saturday, because I have been having sleepless nights due to these symptoms. He palpated my abdomen and I have pain where my stomach is located. Anyhow this doc told me to go to ER, which I did.....Oh what an experience that was..... It took the ER approx. an hour to get me on an IV, they never put me on the EKG machine (which my doctor wanted). I was given a GI cocktail (which contained Donnatal). The Donnatal helped, but I felt very loopy, dizzy, and honestly felt like I was drugged. So in regards to GI issues it did help somewhat. The doctor at the ER pretty much told me that I need to be eating a better diet-I've only been eating bread/waffles for the past few days since my stomach is so bad. I really don't eat unhealthy stuff, I really try to eat fruits, veggies, chicken, etc. All they did at the ER was blood work (came back fine) and an ultrasound of my pancreas and gallbladder. They didn't even look at my stomach, which is where all the pain it!!!!! I was released from the hospital barely able to stand because of the Donnatal. I was told by the nurse that I do not have low bp, because it was high while I was there (i usually run 90/54-I'm sure nerves made my bp go up...). I pretty much had a bad experience. If this is something like IBS which I'm thinking it may be what meds can help that won't lower bp or bother heart rate? Also, could this nausea be making me wake up with high heart rate and sweats or could the palpitations/tachycardia be causing nausea? Also, I've been taking tums and maalox to help, which do for a little bit, but not for long. Today I had severe stomach cramps, etc. As usual, I appreciate any and all feedback.. I know people here on the forum understand!
  20. I search for some posts on this topic and thought I'd put up a new one because I have a few questions...For the past few weeks I have been either taking a nap or sleeping for the night and I wake up nauseous, sweating, and having palpitations/hr. around 100 plus bpm. Im wondering what the cause is. I talked to my cardio about it and he believes it is a sinus tachycardia; I asked whether my bp could be dropping at night, but both him and the autonomic specialist don't believe so, they said it's rare that the bp would drop while laying down. For those of you who have the tachycardia waking them up at night what medication has helped. In the past I was on Toprol XL but my bp was lower than it already is while taking that med. Just wondering what has helped for those of you out there in the same boat....Thank you in advance for your advice, etc.
  21. The sun is good for me for a few minutes. Once I begin to feel hot, symptoms kick in!
  22. I had a sore throat 8 years ago and then began having POTS symptoms....I believe mine is post viral. I was hoping that 8 years later (i.e. present time) I'd be fine since that is what my doctor believed, however, I am still symptomatic. Mine seems to come in waves-I'll be okay for a week or two sometimes even a month (by fine I still have symptoms, but I feel like I can somewhat lead a normal life) then I begin to have severe symptoms, like lately, and feel as though my life is significantly affected...My "main" symptoms are tachycardia, severe lightheadedness (this is the worst symptom for me, because I feel as though I am going to pass out a lot), heavy feeling in my legs and feet, severe nausea, headaches, and lots of "hot flashes." On a different note I had an EEG which showed sharp spike waves in my left temporal (I think) lobe, so a neuro is looking into possible seizures, esp. because my mom has epilepsy...
  23. Just curious-I see threads where people talk about the type of POTS they have. I have no idea what type I have; my doctor never told me they type. How do you find out the type of POTS you have? Can you tell just based upon symptoms? Jacquie
  24. I've had my blood pressure be really low then during the next few minutes it spikes up. I was thinking that maybe the body is reacting to the low blood pressure and a it "over reacts" thus raising blood pressure really high for a few minutes..??
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