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POTSie78

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About POTSie78

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  1. I also have narrow pulse pressure and my drs ask if I feel ok? Ummm...no I don't feel ok lol.
  2. My Dr recommended I avoid caffeine and sugar because it is known to trigger symptoms.
  3. thank you all for the encouragement. My Drs seem to think this is related to my spina bifida because I have had numerous issues since birth that no one has been able to put their finger on. I've had a lifetime of GI, kidney and bladder issues. Fainting spells and arrhythmia since 5th grade. Last year my gallbladder quit and now this. My Drs keep running blood tests and MRI of my neck but they never want to look at my lower spine. 4 years ago I was in a car accident and had severe whiplash and concussion and since found herniated and bulging discs in my neck. My PCP just told she could pu
  4. I am newly diagnosed with POTS and take propanolol and drink electrolytes to try and manage my symptoms. I have labile bp, arrhythmia and GI issues. My Dr also thinks I am hypovolemic. I am going to Mayo in a couple weeks to see their specialist. Is it typical to still feel weak, shaky and nauseous even if my vitals are decent (with decent meaning my pulse comes down to 90-115.) I also started bouts of profuse sweating and the flush I get on my forehead and cheeks started feeling like a painful sunburn. I feel like I am getting sicker and weaker as the days go by and it's really affecti
  5. I get adrenaline rushes but i feel it through my whole body.
  6. Thank you for the encoragement. I'm in the US and I did have a TTT that showed POTS and probably hypovolemic. I've been on propranolol er and meds for migraines. I also was told to drink Gatorade everyday but my sodium barely in the normal range. I've been switched to the non er propanolol recently because my pulse and bp have not been controlled and now I have an implanted loop recorder for my arrhythmia and chest pain. I also have not been tested for vasoconstriction/dilation nor have I been treated with IV fluids. I found a dysautonomia specialist at the Mayo clinic I will see in a coupl
  7. Being newly diagnosed with POTS the more I learn the more I question my diagnosis of pseudo seizures. 6 years ago I collapsed and when I came to I could barely speak and when I did I stuttered. I couldn't get on my feet so I had to crawl to my phone to get help. I went to the er and they checked me for a stroke and then admitted for a few days and gave me anti seizure meds. They then transferred me to another hospital who did a video eeg for a few hours. They couldn't find anything so they gave me that diagnosis.
  8. I mostly just have the slurred speech and completely forgetting what I'm in the middle of doing or saying. I figured out to elevate my legs to keep from fainting. This happens often and is definitely worse when I'm tired or stressed. The latest thing I have noticed is my face turns bright red, I start sweating profusely, I'm short of breath and get super hot if I try to be on my feet at all. This will go on for hours. I feel like I'm getting weaker as the days go by. I am hoping this is just a flare.
  9. I have slurred speech and trouble finding my words that comes and goes. Actually how I finally ended up with a POTS diagnosis after years of unexplained symptoms was started when I went to the ER with signs of having had a stroke. The first time I went to the ER for this I was diagnosed with psuedo seizures.
  10. Thank you so much for the information. I will definitely look into this further.
  11. Yes I have pain in my joints and muscle aches. At times I have trouble walking because of the pain in my sacrum and it goes down my legs to the point I can barely lift them.
  12. I have not seen a dermatologist yet. I am going to the Mayo clinic in a couple weeks so I was going to wait and see what they say.
  13. I was born with spina bifida and have suffered symptoms of dysautonomia for 40+ years. Last year I was diagnosed with dysautonomia and then this year I was told I have POTS. I get flushing and mottled skin and have noticed now I am getting skin lesions that come and go on my scalp and forehead. It seems to be spreading down my face and is itchy. Is there a link between dysautonmia and psoriasis type lesions? I have been tested for lupus and some other basic autoimmune and inflammatory markers which have all been negative.
  14. I have PAC, PVCS, SA AND ST along with mild mitral valve regurgitation and thickening of my heart muscle and one carotid (no plaque). I have had syncope, pre-syncope, sleep syncope and numerous GI issues for 40+ years. I now have an inplanted loop recorder. I was born with spina bifida and was finally diagnosed with dysautonomia last year and this year I was diagnosed with POTS. Hopefully now that my symptoms have a name I can get some relief.
  15. My pulse goes to 160s and then sometimes it will drop to 30-40 bpm and my resting heart rate is usually 90-100. I have bad stabbing chest pain during either extreme. Other times my chest feels very tight. I also get pain between my shoulders and in my armpit.
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