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Everything posted by shanying418

  1. Hi everyone. I haven't been posting for the past few months. I've been having considerably more trouble this past three months and was going through different doctors. Anyways, long story short. I've been pondering on a question... does anyone know what's the relationship between blood flow to the heart and POTS? By that I mean, I've been having chest pain episodes. While my doctor thinks it's POTS related, I can't help but wonder there's something wrong in my blood regulation with my heart. I know chest pains can be chest wall related, or POTS related and I tend to get different kinds of sensation when I say "chest pain." (There are ones that I don't care about anymore) I just want to know---should I keep pushing my doctor on the blood regulation type chest pain? Or is that just POTS related and I should just ignore it?!
  2. Thanks for the tip! I haven't invest in a cooling vest but I did use ice packs today. It's getting too warm for me(I think the car said it's 99F). I'm still looking into cooling vest though. I know I can't put all these ice packs on me when I'm outside in the public...
  3. The place I live gets over 40 degrees too (even though it's only a few days). I think I might send them an email and see how it goes... I can't find their online store....
  4. Wow! profile views with 508????

  5. Hi since weather is getting warmer in my area, I am wondering if anyone uses cooling vests? I read somewhere in the forum about it, but I'm still not so sure whether if it's going to be useful. This is my situation--I am usually out all day so I won't have access to a freezer. I will have access to normal water and I guess I can always get a venti cup of ice from Starbucks. However, I am not sure if that's sufficient for the ice packs. Any ideas?
  6. Tks! Mine was pretty bad... A lot of red dots and it's annoying. I was guessing it's b.c of my compression stockings keep sliding down but I don't really know. I'll try the lotion. Hope that helps cuz I think compression stockings do help and it's bad that I can't wear it right now.
  7. Hey Everyone, I have a quick question--has anyone of you tried compressions stocking and get allergy at the back of your knees? I am having this problem which is a bit of a bad news because wearing compression stockings does help... What do you guys do? I'm using fluocinonide right now but I know I can't use it for long.... Abdominal binder didn't help me--it made me more nauseated and that's why we switched to compression stockings....
  8. Hey... You are not alone. I'm allergic to florinef too. I got hives---like you. I also started to feel my face heat up after a few days on florinef. My cardiologist was surprised too. Yet, my primary care doctor told me to stop it so... we stopped. (Thankfully!)
  9. I probably have one of the most simplest question... What exactly is an abdominal binder? By this I mean is the abdominal binder for "Back Support" the same as the one that doesn't mention "Back support" on the package? What about "body shaper" When doctors mention about abdominal binder, which kind are they talking about? I got this handout that mentions "Use abdominal binder or 'body shaper' ." Yet, I'm not sure what that is.... PS. Google picture gave me all these different options, if someone can message me with a correct one that'll be greatly helpful. TKS everyone.
  10. I probably have one of the most simplest question... What exactly is an abdominal binder? By this I mean is the abdominal binder for "Back Support" the same as the one that doesn't mention "Back support" on the package? What about "body shaper" When doctors mention about abdominal binder, which kind are they talking about? I got this handout that mentions "Use abdominal binder or 'body shaper' ." Yet, I'm not sure what that is.... PS. Google picture gave me all these different options, if someone can message me with a correct one that'll be greatly helpful. TKS everyone.
  11. I was never been tested for norepinephrine. However, the tiniest dose of bata blocker gave me a "flat" effect. I know I'm really sensative with everything they've tried so far--bata blocker, florinef, midodrine. I guess I'm not comfortable with the description of the medication. . . I think I'll need some assurance before I launch in and try the medication.
  12. Hi everyone, Has anyone tried Venlafaxine (Brand name:Effexor, Efexor) as POTS treatment? How does that work? My cardio doc. said it's suppose to stimulate my nerve system and most people don't have a lot of side effect from that med. However, after reading wikipedia, I'm quite worried about the adverse effect . . . I haven't started the medication, one because I forgot to pick it up , two because I kind of don't feel comfortable with the description of the medication.
  13. Well, I didn't have eye pain when I took florinef. I had headache, flashes and hives. I can't suggest what you should do but I personally stopped the medication and keep calling my doctor until he replied--result as you can guess, stop the med. So... my best advice is, if it's causing you too much pain, you have the choice to stop the medication and notify your doctor or do it in the reverse way. . .
  14. Agree with all the other posts. Plus, my doctor says "dysautonomia" is an umbrella term for autonomic dysfunction which includes a lot of different conditions.
  15. Sarah, Call your doctor. That is not a good sign. According to Mayo Clinic website, Florinef causes eye pain. Here's the link:http://www.mayoclinic.com/health/drug-information/DR600669/DSECTION=side%2Deffects
  16. Sorry for the confusing statement. I was taken off from the medication NOT because of safety issues. I was having headache (without high blood pressure) with midodrine and my HR is not controlled either. That's the reasons that my cardio doctor took it off. What I was trying to say is, my doctor was surprised by the news and he even stated that "No one ever contact us about this!"
  17. I agree with Mightymouse's post. i was on midodrine till a few days ago and was taken off it when I phoned my cardiologist about the FDA issue. My cardio doctor was surprised about the news and replied in an honest way that this will make the situation tricky. Although I'm facing the same problem of not knowing what to do next (I'm currently off meds), I also think it is important to remain hopeful and probably see if there are other options for back up. I can see that my cardiology doctor is also a bit puzzled by what to do and I won't doubt that he'll consult other professionals about this situation. It might be for our best interest to wait for a collaborate decision on the medical professions. I know it sounds a bit hard and something must be done, but keeping up the hope might also be as important in the crisis.
  18. I have the same question! LOL Mine is mostly 102/67 when on meds. Without meds, it's about 95/60? I think your blood pressure is a bit too low though. My cardiac doctor said mine is too low and I'm in my early twenties.... My blood pressure do drop when first standing, it does pick up later. I'm not sure if it drop randomly...
  19. Would you mind posting their original message--the one saying that they are discontinuing ProAmatine-- here? Or can you send me a private message if you don't mind? I think I want to talk to my doctor about this... Tks.
  20. Thanks everyone for answering! I'll try to get hold of my PCP when possible--she's on vocation. I think what I might need to do is persuade my specialists to listen to me, which was hard from my previous experiences. It feels like POTS is pretty complicated?! @ nmorgen: My previous cardiologist said it doesn't matter which kind of POTS I have because it's hard to tell. My current cardiologist .... can't get a hold of her. She haven't respond to my phone call from last Thur. I'm hopping she'll response...
  21. I've been checked for thyroid problems... So far one test came back normal and the other haven't come back ... Interestingly, I had a Chinese doctor who told me that one of my thyroid is not working properly but the other is normal so my test result will not show abnormality. --don't know what to make out of this... In terms of food allergies/sensitivities... my allergist said it's not worth it to test food allergy because my hives doesn't seem to go along with food. I think he ordered some test screening for autoimmune and liver disease but I haven't get the results back either. But... I still don't know when should I mention all these problems to my PCP? I haven't tell her anything besides Hives/ tachycardia/ fatigue.... I don't even know if I should mention it to my PCP or my cardiologist?? Tks for answering though
  22. I guess I'll just jump into the question. I've been on Midodrine for about 2 months now. Blood pressure and heart rate seems to be quite normal, that is as long as I don't forget the doze. If I even forget one doze, my resting hr goes up to 95+ and if I forget 2 doze then it's like 120+. (I guess it's consider as mild since my hr doesn't go sky rocket, compare to everyone on this post). However, I'm still having other problems... 1. I keep having these episodes feeling like I'm not getting enough "air" in my chest --I'm not using the word "oxygen" cuz I think if they put an oxygen monitor on me, I should be fine. Is this a problem of POTS? When I phoned my cardio doc's office, the receptionist said I should call 911, which I just ignored... I know I'm not going to need ambulance. 2. Sleeping problems--- I keep feeling like I'm not really sleeping?! I can fall asleep but it's never really refreshing... I wake up at 4am 6 am and 7am--when it's time to really get up. ~ side note: I didn't realize it's a problem until this little girl who I see once a week came up to me and ask "why do you have dark circle under your eyes?" I was like.. "How do I explain this?!" 3. Stomach problems--it feels like I'm not digesting things well... is this related to POTS too? When should I mention this to my PCP? 4. Back pain--is this common? Is this POTS related? Or is this totally something else? 5. Tiredness--this is a big problem I guess. Even though I'm on medication and my blood pressure and hr seems to be under control, I'm still tired or feeling generally unwell most of the time. I thought the POTSy fatigue is caused by fast heart rate and low blood pressure. If both are under control---at least it appears so on my blood pressure monitor--why am I still tired/unwell all the time? I don't love to say this but I feel like I don't really recall a time that I am feeling full of energy? :blink:
  23. Maybe you should just make it clear to your GP and ask if he can refer you to someone else. I had problem with my first cardio doctor and is in the process of getting to see the third doc while also sticking to the second cardio doctor. I guess this is a general experience for all of us. Even my GP told me to "keep pushing and telling, then the specialist will hear it." She told me that's what so does herself. So, don't give up. You'll get closer to getting a right diagnose and get better.
  24. Um... I really think you might want to seek out another specialist. If you have a family doctor or general physician, maybe ask for his/her ideas? My GP sent me to a new cardio doc. when vasovagal syncope doesn't seem to explain everything...
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