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WinnieBlue

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  1. Ive been battling illness for 15 years. Im 29 now. I started having my PoTS symptoms at about 13. I just learned about the actual diagnosis about a year ago when my symptoms got so bad i had to quit my job. I get presynscope when i stand in one place too long. The symptoms i thought were pretty bad, until i experienced really bad symptoms and now the previous symptoms dont seem so bad! I use to have dizziness, nausea, lightheadedness and extreme muscle fatigue plus a doubling in my heart rate when standing. Now the past 2 weeks I can hardly stand for longer than 1-2 minutes and I go into presynscope. my oxygen and bp drop and my bpm will shoot up for a minute or so and then drastically drop down to 45-50. I havent fainted in 12 years because i learned to recognize the symptoms and sit before I do but they have intensified and I hardly even have time to sit myself down now. I dont know why the symptoms have worsened but it scares me. I think the bitter cold has something to do with it. I have remained painfully cold and the reynaulds in my hands and feet has pretty much been acting up all day nonstop even indoors. My main question is how long can you stand before fainting? Im still okay if im walking say through the grocery store at a fast pace but if im walking around my house or standing to talk to someone, clean, or practice hygeine im out after only a minute or two. I use to go about 5-10 minutes long on bad days and 10-12 on good days. Also is this the new norm or have you had fluctuations in the severity of your symptoms?
  2. My symptoms are worse after I eat. I do all my errand running in the morning and dont eat food until 11am. This is one reason i cant work anymore. I am absolutely miserable after I eat and i cant go longer than 12-1pm without eating or that makes me faint. I know that when you eat more blood is directed toward your gut to aid digestion and with PoTS we already have trouble with keeping blood in our head and extremities. I have not found the answer or any remedies. I do sit with a heating pad on my belly after i eat to help the blood flow and digestion but doesnt help with fainting. I need to get my blood checked but getting my blood drawn is one of my worst triggers. I faint and/or vomit during the blood draw and afterwards im sick as a dog all day. So naturally i have a phobia of blood draws
  3. Hey everyone, I was finally diagnosed with dyautonomia yesterday! Im excited after 14 years of struggling and docs calling me crazy but i didnt give up and i finally got an answer. I still have a couple tests to do to pinpoint which kind inparticular. I just had some questions. First, i have really bad brain fog and my eyes are really effected. My dizziness has increased. I have poor balance which is not only from dyautonomia but from severe scoliosis too. When i walk it feels like everything is rocking back and forth and it makes me unsteady and dizzy. This is a constant all day everyday feeling as opposed to vertigo that hits suddenly and makes things spin though occasionall i have gotten that too. Does anyone else experience this rocking sensation? Its also like my brain has trouble processing certain info through my eyes. For instance i cant walk on pattern carpet cuz the pattern moves and shifts. This also happens on floors with light reflection or with heavy shadows. The light and shadow shift and colors and patterns shift when im walking. Stores and libraries are especially hard because walking down the aisle i just see all the product, colors and words on the shelves out of my periphereal and it about takes me down. If im browsing through a shelf of books or product everything is moving and shifting as i try to read. Anyone experience this? Lastly for now, my digestion is highly effected. Nausea and indigestion are daily and i never thirst or have an appetite. I have to time my water and food cuz otherwise i wouldnt know to eat. Anyone have any tips on handling digestion with this? Im underweight and my symptoms get worse when im underweight. Thanks guys!
  4. Hello. My name is Shelby and whatever I have Ive been dealing with for 11 yrs. For the first 9, all my docs just diagnosed me with anxiety and IBS but 2 yrs ago I started seeing docs again. All my symptoms fit POTS to a T. My heartrate doubles upon standing. Sometimes ill have spikes in my BP but usually it remains the same. When i lay down i go the opposite and drop into bradycardia. My bpm goes as low as 45-50 and even dropped to 35 on my heart monitor while sleeping. Upon standing i also get pooling in my feet. Ive had all the cardiologist tests done but the tilt table but my doc did the "poor mans tilt table test" but he said cuz my bp didnt drop i didnt have pots. My cardiologist said the same. Anyway ive also been to many other docs and have had all kinds of tests including MRI of the brain. Ive accepted that I have POTS even tho i cant get a doc to listen but ive been having a new symptom that has me very worried. About 2 months ago i got a bruise on the side of my foot just below my pinky toe. A spot turned bluish black the faded to tan but then it came back. For 2 monthd thats what it keeps doing. One day itll be dark and look fresh. The next itll be faded with no pain then dark again. It hurts like a bruise but also causes numbness in my toe and tingling in my foot. Then last week i was washing my hands and my fingertips/nails and the pad of skin on your palm by the thumb turned blackish blue and all the blue capillaries in my palms became visible. Now this has been happening on and off while standing, washing my hands or when im stressed. Im getting so worried cuz no matter what happens to me my docs wont take it serious and just keep passing me around. Are these symptoms of dysautonomia?
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