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peresphone24

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About peresphone24

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  1. Those are great victories! I need to remind myself of the small victories more. I cooked two meals today AND got the dishes washed not long after the meal.
  2. You'd probably want to stay away from any of the SSRIs if you are that sensitive. There's a lot of serotonin in the gut so IBS type symptoms are common side effects for the SSRIs as a result. They are generally temporary side effects that fade after it's balanced in your system, but that doesn't happen with everyone.
  3. @Pistol Thank you for your help! I recognize that the cardio's hands are tied when results are inconclusive. It's just so frustrating with the waiting and no idea what's going on. I appreciate the help with developing questions to ask! @KiminOrlando Thank you for your help! They've not said anything about norepinephrine so I'll ask if they think it is relevant for me!
  4. Hi! I've been trying to compile a list of questions for my next cardio appointment. I had what they said is a normal Echo, I've had an abnormal ECG- not sure what it was, multiple SVTs up to 203 (folding laundry), my blood pressure is low and can be as low as 79/68 on the midodrine (although they added cardizem last week which is weirdly has raised my bp to more normal ranges during the day), tilt table was inconclusive- caused A LOT of leg pain and my blood pressure dropped with the changes, no tachycardia happened. They didn't do any of the other things during the TTT that they've mentioned here in the forum like blood work. It was just the blood pressure and ECG being checked. I've done an EP study which was also inconclusive because my heart did absolutely none of the issues then. I drink Gatorade and salt added to food. I am well hydrated. I wear compression stockings- no idea if they are the right kind. An outside naturopathic doctor did blood work and neuro-testing and I'm low on testosterone, serotonin, GABA, and cortisol. I'm not anemic and blood sugar seems to be ok. The cardio didn't care about the copy of the lab work. They tried me on metoprolol but it caused urinary retention and with my urinary history that is not ok. My heart rate is very affected by positional changes when I am symptomatic. I get dizzy, light-headed, and short of breath even when not tachycardic. So far I have questions like "what's an ok heart rate range for me", "what compression and style do my stockings need to be", "do I even have a diagnosis yet", and "is there other testing that we should do?" I feel like I know absolutely nothing of what's going on and what they think. My naturopathic doctor has a good handle so far (she's been right with each suspicion) and I feel much more confident with her. She wants me to advocate for myself with them and find out more of what's going on. I feel overwhelmed with the idea of trying to figure what I need to know from them. Any guidance on what to ask them or ask for would be much appreciated.
  5. @joshrandall It's really hard waiting around for answers and having to advocate for yourself when many don't believe you. I agree with other above suggesting you reach out to your doctors. I have also found talking to a therapist a huge relief. I get to unload my fears and frustrations and also walk through how to advocate for myself with the people who don't listen to me or take me seriously.
  6. @RecipeForDisaster- Thank you for your encouragement! @Pistol- Thank you for your encouragement as well! I am wearing compression stockings (inconsistently though I have to say) and the EP has me drinking Gatorade for most of the day. I also occasionally add salt to my food as well. I do try to monitor my BP at home and it sends the data to an app on my phone to be stored. It ranges from the 70s to the low 90s systolic for the most part. I wear an Apple Watch which helps track the heart rate well. It's a 1 series though so I'm thinking about getting the Kardiaband to watch for the arrhythmias since I can't afford to upgrade to the new watch. My BP machine caught one the other day but it can't give any information other than it registered one. Most of the time my ECGs are fine so I'd like to be able to catch them when they are happening. I'm trying to be proactive. It took me years for my IC to be correctly diagnosed and managed. I don't want to have to fight that hard with this too.
  7. Hello! I'm new to the forum and I've yet to be diagnosed so I'm not sure exactly how to label what's going on. I have a long history of low blood pressure and last year I began to have random spikes in my heart rate. I can get a heart rate of 203 just sitting and folding clothes. I get dizzy, lightheaded, nauseous and feel the palpitations. My legs swell and ache. When I'm symptomatic, positional changes drop my blood pressure and spike my heart rate. I have passed out in the past, but not recently thankfully. Echo was fine, I've had an abnormal ECG and have had multiple SVTs caught on a monitor. An EP study and tilt table test were inconclusive. I've been taking midodrine for about 9 months now and my cardio just added metoprolol. I have a variety of other health problems like interstitial cystitis so this isn't my first rodeo with dealing with rough symptoms and no diagnosis to explain it yet. I'm just looking for some encouragement and support in surviving this part of figuring out what is going on and managing it's impact on my life. I was so happy to see that this forum exists!
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