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Tzipora

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About Tzipora

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    Advanced Member
  • Birthday March 16

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  • Gender
    Female
  • Location
    Metro Detroit

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  1. Hi everyone, I have a blood clot from the PICC line I use to get my nutrition (TPN/ IV nutrition, due to severe GI dysmotility). I got put on Coumadin and a week of Lovenox injections and I am a complete mess. It started with nausea and vomiting way worse than any I've ever experienced (and I live with chronic nausea and vomit fairly often but it's never been anywhere near as awful as since I started the blood thinners!) And now I'm getting more and more shaky and dizzy. It's only been three days. I can hardly type my hands are so shaky and they feel numb and tingly and kind of cold. I suspect
  2. Chaos, Thanks so much. The hypertension came as a surprise. It's these severe headaches that my brother has been so concerned about (they sound like migraines to me, something else I deal with) but they discovered his blood pressure was high. Honestly we were testing my mother's old blood pressure monitor months ago so I could have it and he was high then too. And he is checking it at home and he's still running very high... He's going for blood work in the morning. I should maybe also add that my mother has hypertension and is on medication for it. So who knows. In general I worry about him g
  3. Hey everyone, I haven't been round in a few months and was a newbie then anyway. I have a whole lot of stuff going on with my health. But I'm back tonight, despite my heavy fatigue because I'm really wondering about something. I'm 22 (well, I will be in a few weeks) and just got diagnosed with POTS/ Dysautonomia about 6 months ago though I've had a sinus tachycardia diagnosis for a few years now. And I've got a zillion other issues, primarily very severe digestive stuff. I have a younger brother who is 18, almost 19. He's started having severe headaches that are really scaring him. He just sa
  4. I'm still really new to the Dysautonomia stuff but I am extremely familiar with GI stuff. I have very severe gastroparesis that has been refractory to treatment. It was actually my motility specialist who figured out I had Dysautonomia first and then referred me to neurology. When the motility specialist got the tilt table results he literally said "I KNEW IT!" So there are definitely GI's out there who get it! I also see a general GI because the motility specialist is further away and is someone I can only see every 3 months. And while Dysautonomia is something he's not very knowledgable out,
  5. Have you ever had a gastric emptying scan? Because you sound just like me when I first developed gastroparesis. Dysautonomia can definitely lead to gastroparesis and/or other dysmotility of the GI tract.
  6. I don't know of any either but I'm in a similar place as you. I really want to go back to school since I'm at least half way to a BA but I have absolutely no way to afford it right now (and at best only have the health to take an online class or two) And I've been wondering about scholarships for either specific health issues I have or even general ones for people with chronic illness. And I don't know how old you are. I'm only 21, almost 22 but if all else fails I've been thinking I might just have to wait until whatever age it is that you no longer have to count your parent's income on the F
  7. Out of curiosity... Who is telling everyone how much to drink and how do they come up with that amount? I'm almost completely dependant on TPN (IV nutrition) due to severe GI dysmotility and getting my fluid level just right has been a challenge and I'm always wondering if more fluid will help. On good days I do drink water took. I get 2.5 liters of fluid in my TPN and they are willing to up it to 3 liters if I want but I have had frequent urination problems for several years so I've been hesitant to up it anymore. But I absolutely do get in at least 3 liters a day with water drinking and TPN
  8. Ugh, what awful timing! I'm so sorry! I don't have any real tips on how to help you get approved but I'm also in the middle of the process myself right now so I know the stress and extreme frustration along with how badly so many of us NEED to get approved and NEED that money. So I really hope you do get approved soon. And I hope that you are still able to enjoy Christmas in spite of the bad news. Also, if you don't mind me asking- How long did it take them to make their decision? I started the application 7 or 8 months ago and STILL have not gotten a decision although in my case I've been tol
  9. How interesting to see this post. I was literally googling dark circles under eyes yesterday because I saw how awful my eyes looked! (and was having a very bad day- painful period because I have an ovarian cyst, migraine, low bp, etc... didn't even get out of bed all day) I've never really gotten under eye bags ever before until more recently. And I've been highly symptomatic with POTS for about a year now (may have started before then since I ahd a sinus tachycardia diagnosis a few years earlier) but for sure as my POTS has gotten worse these bags have appeared. And I look like I've been pun
  10. I just saw my primary care doctor who definitely knows NOTHING about POTS and tried to tell me my entire problem is anemia.... Which is annoying. But she wants me to see a hematologist and I just had my iron checked. So hopefully I'll get the anemia aspect of things taken care of soon!
  11. Thanks. I'm just not really sure where else to turn... If I had the money and ability to travel I'd get myself to Mayo Clinic for sure. I might be headed in that direction anyway because of my GI issues too... I ended up in the ER as a result of the Verapamil. Called up my neurologist because I actually was in the bradycardic zone which has NEVER happened to me before and I felt very strange. And I had a blood pressure of 85/50. So I was told to stop taking the Verapamil, obviously and given fluids and had an EKG and all. The neurologist said he'd call me back if they figured out anything else
  12. I've been thinking about getting one and have had nurses and doctors tell me I should I have one. I'm just trying to decide which one to go with and also how on earth to list all of my issues on it! I've heard anyone with drug allergies or on multiple medications should have one. I know I need one because I have a latex allergy in addition to multiple other medication allergies. Then I have a PICC line and for sure in addition to the POTS should list my asthma and probably my GI issues. Honestly I haven't figured out the best way to go about it. No clue how to shorten everything up enough! Doe
  13. I honestly thought feeling sick while riding in the car was just a POTS thing. In fact it's the thing I hate the most about it all because at this point I can't drive at all, have to sit in the front passenger seat, and carry a barf bucket just in case. But then again it could also be anxiety especially since you were going to the dentist. I know I have a long history of anxiety (PTSD, actually) and while I wasn't diagnosed until my teen years I remember as a young child I was ALWAYS complaining of a stomach ache and nausea in the car on the way to school. I was always fine after a little time
  14. I think I've been anemic for at least 6 months now but today was the first time anyone actually addressed it. My hemoglobin is at 10 so nto low enough for infusions but it's been sitting at 9 or 10 for a long time. I actually ended up in the ER today from the effects of Verapamil (which I'm now not taking) so yesterday morning I also had a heart rate of 50ish and a blood pressure of 85/50 and my neurologist told me to go get checked out. Took me hours to get a ride and I had been loading on salt and as much water as I could drink so I was doing better by the time I got there but they ended up
  15. You might even try using another finger. For whatever reason when my home health nurse is here my right index finger often gives off scary low reads (like the ones you mentioned) but then if she tries another finger, I'm okay-ish. For some reason I have no problem with the finger readers in the hospital but the ones the home health nurse has, probably much like the one you have, seem to be more glitchy. I get short of breath at around 95. I'm pretty sure I'dbe in the hospital if it got much lower. So chances are you're probably low but perhaps not as low as the readings you're getting.
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