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Starrynight

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  1. Tomorrow is the EP appointment. I hope this doctor is good and will listen. Something that I have been noticing for weeks is that I bruise very easily on my legs. I don't know if its happening while I'm standing for longer periods of time or what. I know I'm not bumping into things (if this is caused by hitting anything then it's barely touching me). I wear pants through the week at work, (desk job), and I wear shorts on the weekend. So I dont even notice new bruises till the weekend. This is one that has went from a yellow color yesterday to now a redder color. It's about 2-3 inches in size. The easy bruising is new in regards to something I've noticed in the past 12 months. It started on my arms but now its mostly on my legs. I have 5+ bruises right now. Based on what I've read that this could possibly be linked to dysautonomia.
  2. Had the MRI and Stress Echo last week. Both came back "low risk" which I was told that it means normal. Now they want me to see the Electrophysiologist before anything else. I had a couple of weeks of feeling like things were getting better. I would have a couple of nights of feeling unwell, especially after dinner but overall I felt like it was better. So, I started to push myself to be more active like I used to be, went outside while it was hot and stayed out all weekend. My Husband warned me to not over do it but I guess I did because at 1am Monday morning I was woken up by a "surge" feeling and my heart rate and blood pressure were elevated. Heart rate was in the 120's which is pretty low compared to my other episodes of 150+. Blood pressure was climbing and reached 167/101 before I was worried enough to go to the ER. I was worried I would get to a stroke level. Now, I'm back to like before with feeling crummy. I have been trying to find support groups online for the SVT diagnosis that I do have but can't find any good ones. Any ideas?
  3. I'm more hopeful in answer now and happy that it's not "all in my head" like some have thought. I feel like we have found some of the pieces and are slowly putting the puzzle together.
  4. So I have an update from the test. Two days after the test the nurse called and said that the Dr saw some EKG changes and wants to repeat the test but with an echocardiogram. So I will be doing that next week. Then today she called again and said that the 14 day monitor showed atrial tachycardia. So hes also setting me an appointment with a specialist in the same office. This specialist is for the electrical part of the heart? So, I'm surprised but not surprised that he saw some things. I guess now I'm just wondering how serious all this will be. I don't know if any of this will point to POTS or maybe this will be something separate from it. I'm going to try and put together notes of everything I've been through for the visit with the specialist. If they can't figure it out they said they would find me someone who will. At least now I can feel more confident that this isn't just anxiety.
  5. I know I will hate this test since they want to get my heart rate up. I just hope this test is worth the torture and helps point them in the right direction.
  6. I'm having a sress test Monday. Have any of you had this during your testing that lead to a diagnosis? I've been calling the nurse and letting them know of my symptoms and they just seem unconcerned. I know the biggest challenge right now is that doctors are avoiding seeing patients if possible because of the Covid-19 crisis. Today I had a mental breakdown from it. For the past two weeks I have had increasing joint and muscle pain. I am ok if I sit or lay down but as soon as I'm up and mobile, it starts and becomes debilitating. I worked this past week and it was worse each day. As soon as I come home I'm in so much pain and feeling like crap. Everyone just wants to say its anxiety. Today has been the worse. I wake up in the morning feeling fine. Get out of bed and the unwell feeling starts. It feels like aches from a cold would feel. The longer the day goes on the worse it is. I was trying to clean the house and it just got to the point that I was in severe pain and felt like I was going to pass out. When I check my blood pressure, it's up but my heart rate was about 74 (on beta blockers). I felt like I would possibly pass out so I called my Husband in from outside. He immediately made me sit down and reclined the chair and put my feet up. After 10 minutes my symptoms started disappearing. How can I feel fine lying down but feel like I have the flu when standing/walking? I feel like a crazy person and the doctors seem to act like they don't think any of this stuff is related to each other. I just hope that the stress test will help them to try and explore with more tests. I don't know how to convince them to explore other options when they just want to throw every symptom into the anxiety hole.
  7. Thank you! Everytime I find more information and read it to my Husband we both just say how much this condition sounds just like what I am dealing with. I told him that the only time I feel normal is laying in bed and as soon as I get up to get going, it starts back up with everything. I did have a 48 hour holter monitor back in February. That was ordered by another PCP that I left because they weren't even trying to help. It was impossible to get ahold of her or the nurse. After 2 months of her draggin her feet they finally did the 48 hour monitor. A month later after demanding the results, they just said that I had sinus tachycardia and some occasional PVC's and nothing was of concern. I was shocked that several hours of tachycardia was not a concern! I just hope to find some type of answer because the only person that is believing me is my Husband and child since they witness it. Everyone else just thinks I'm over dramatic and I'm perfectly fine. But I can say that even though the ER doctors didn't seem to think I had a problem, the paramedics were very concerned. They even argued with the hospital! They said that they could see on the monitor that something wasn't right. But of course laying down makes it go away and so I was becoming frustrated with myself that it would torture me at home but be fine at the hospital. I hope my current doctors will be open minded with this. It's hard starting over and finding someone new.
  8. Hello everyone, I hope that it's ok for me to post here. I do not have a diagnosis of POTS but I have one medical professional in my care team that has brought up the possibility. I would like to share my story and hopefully get some ideas on how to get my Doctors to consider the possibility and test for thos condition. I had a baby last summer at the age of 34. For the most part I felt ok after having the baby. But 3 months postpartum I started to have issues with blood pressure rising. I also recall of having problems with periods of time of feeling so unwell that I would have extreme episodes of tremors like I was feverish. I cannot recall much more in terms of symptoms but I did seek help for the high blood pressure issues. Doctors seemed to think I was having high stress and that was the cause. 4 months later, I started to have issues with high heart rate (130's) followed by extreme dizziness, fatigue, and nausea. I thought I was having a heart attack, went to the ER and checked out fine. This first episode also happened a couple of weeks after having some sort of mystery viral illness that no one could figure out. I started to have more frequent episodes of heart racing, extreme fatigue, nausea, shortness of breathe, blurry vision and many other symptoms that would last for hours. Since January of this year I have been to the ER 6 times, two of those by ambulance and hospitalized once. By the time I get there I have been dealing with the symptoms for 3 or 4 hours straight. Of course, when I get there and they have me lay down for about an hour, everything calms down and then they say its panic attacks or anxiety. I am seeing a cardiologist now and so far they have down blood work and echocardiogram while I was in the hospital. I will be getting a stress test and MRI in June. Cardiologist says it can be a form of SVT. I am waiting on a 14 holter monitor to come back with the results in a week or two. So, other the last few months, these episodes have been more frequent and seem to be triggered more consistently. Simply getting out of bed will make my heart rate go up to anywhere from 110 to 150. The reason I have been seriously wondering about POTS is because I have also noticed that my episodes will trigger after a large meal. I told my doctor this and he said that food and heart issues aren't related. Also, I am having internal tremors all the time now, especially when I'm sitting or lying down. The more I research it, the more it matches up with these weird symptoms. All the doctors have said panic attacks and anxiety are the cause for it but the anxiety meds don't help and they definitely don't stop the heart racing. The cardiologist has started me on a beta blocker and that has made some improvement. But I still feel fatigued no matter how much I sleep, dizzy when I stand, and constantly need to sit down and take a break and catch my breath. Whatever this is, if it isn't POTS, it's something that is mimicking it I think... Or closely related. I know I have stumped the doctors so far, so anxiety is the go to diagnosis right now. How would I go about mentioning this condition in Hope's that they would at least explore it? I have a PCP and Cardiologist right now, is a neurologist a better choice? Can POTS start out mild and then get more pronounced as months go by? I just ready to have an answer on what I've been dealing with for 6 months and not have people think I'm crazy. I have been told to seek treatment at a mental hospital because friends and family think it's all in my head. Thanks for any insight. And I know that medical advice is not allowed. I fully intend on following through with all the doctors involved in my care. I'm just trying to educate myself on the condition.
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