MeganMN Posted January 22, 2019 Author Report Share Posted January 22, 2019 Thanks for all the info @CarolS and @Pistol !! This whole process has been so frustrating to figure out. I hope that I can get to Mayo eventually and do better testing. I am going to get a Holter 48 hour placed tomorrow because now I have tapered the Proprolol (which seems to be what was causing my dizziness), my dizziness is better, but my heart rate is high, of course, and I have had several episodes in the evening of having my heart rate drop into the 30's with almost passing out. So what in the world is that? Who knows. This all just seems kind of crazy and bizarre. Quote Link to comment Share on other sites More sharing options...
CarolS Posted January 22, 2019 Report Share Posted January 22, 2019 So, @Pistol your blood pressure rises on standing then, right? Or am I misunderstanding? I'm in the UK and my daughter was given virtually no testing. I'm not sure we needed any, though. Heartrate skyrockets on standing. Blood pressure generally low with no change on standing. I think based on the doctor's experience he thought trying Ivabradine (plus blood volume increase with salt and water )and seeing how it went was as good as running a whole load of tests. In our case this was right. Daughter also has ME and the autonomic testing can be fairly gruelling from what I've heard. In daughter's case we got lucky with the first med tried. @MeganMN Your case sounds quite complex. I hope you find a way to get to Mayo soon. Sending good wishes your way. If you want to try and figure out some of what might be going on there are a whole load of good articles in the 'Information Resources' section of this site. Maybe something will click with what's going on with you. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 22, 2019 Report Share Posted January 22, 2019 @CarolS - yes, in my case the BP goes UP with standing and anything that causes a flare. It sounds like from what you are reporting your daughter has the type of POTS that causes vasodilation and therefore might respond better to meds that CONSTRICT. Glad she is doing better on the Ivabradine. Quote Link to comment Share on other sites More sharing options...
MeganMN Posted January 24, 2019 Author Report Share Posted January 24, 2019 @StayAtHomeMom I have been feeling sooo awful the last few weeks and finally have been trying some allergy medicine and occasional sudafed. Today I finally took a meclizine and it really helped. Guess I will add ENT to my doctor list this year! Quote Link to comment Share on other sites More sharing options...
MeganMN Posted January 24, 2019 Author Report Share Posted January 24, 2019 Feel like I have to be my own doctor, researcher, etc. Trying to sort all this out again. Finally have figured out that when I wake up in the morning, my heart rate is super high when standing and I have mild dizziness, but no nausea, or vertigo, or headache. After I take the Propranolol I have a normal heart rate but then also have nausea, extreme dizziness, headache, and vertigo. Guessing that might mean I need to add in a vasoconstrictor or switch beta blockers. Interestingly I was reading a study about cardiac specific beta blockers versus non-specific ones and the specific ones are sho wing more negative long term change s in the heart. Will see what the cardio says. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted January 25, 2019 Report Share Posted January 25, 2019 22 hours ago, MeganMN said: @StayAtHomeMom I have been feeling sooo awful the last few weeks and finally have been trying some allergy medicine and occasional sudafed. Today I finally took a meclizine and it really helped. Guess I will add ENT to my doctor list this year! Make sure if they do allergy testing they do intradermal. It is way more painful but a lot more sensitive test. Also it would be interesting what they find. I had a sinus CT. My ENT said that all my sinuses have sinus disease which is uncommon. Usually it is only in the big ones. He was more concerned about my deviated septum. Researched the surgery to fix my septum and told him no way to that. I just live with it. Quote Link to comment Share on other sites More sharing options...
MeganMN Posted January 25, 2019 Author Report Share Posted January 25, 2019 @StayAtHomeMom totally! Those surgeries are terrible! Wearing the Holter now, hope it is helpful! Quote Link to comment Share on other sites More sharing options...
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