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peresphone24

Beginning the journey

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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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@peresphone24 - welcome to the forum!! I am sorry you are dealing with all of this. I am assuming you already know this but for your symptoms of hypotension, tachycardia and leg swelling compression stockings are very helpful. Increased salt and fluid intake is commonly recommended as well. Metoprolol may very well help you. -- I too have IC and in my case it is attributed to POTS, as well as IBS and GERD. Many doctors are unaware of all of the other stuff that comes along with a dysautonomia diagnosis!!! --- Are you monitoring your BP at home? It is very helpful to keep a diary of your reading, especially since you just started a new med. This way you can see if there is any improvement and also relate your symptoms to your BP/HR readings. This is very helpful for the physicians as well. -- Best wishes - and be well!!!!

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@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.  

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