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shanying418

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Posts 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. It is already 100 degrees where I live and I noticed last week my symptoms suddenly worsened doing the same actitives because of the heat. My house is the kid magnet house and at night around 9pm my front yard is full of kids. I usually enjoy the activity, and being able to be involved as much as possible (even if it means getting hit with a stray water balloon). Last week when it hit 100, and it is usually still near 100 a 9pm I was bending down to play skittle bingo and my body had enough. I have a cooling vest but I found I need more coverage. I bought big cold packs that can strap on in different sizes at the medical supply store. They are in an insulated pouch and stay cold for 4-6 hours. I look silly but I do my neck, ankles and wrists and it helps enough that I can stay outisde for a few hours and be somewhat active. I keep the packs on for about 30 minutes at a time, break for 30-45 minutes and then back on for 30 minutes. I'm usually pretty frugal but I spent 25 per ice pack and I own 5 and I have found them very helpful.

    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. 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?

  4. Hey, yes I have had the allergy behind the knee from the compression stockings. I asked my dermatologist about it and she said its severely dry skin. She had given me a prescription for it - a cream to put on - but I never filled it, I just got some stuff from the health food store that cleared it up right away. I think it was called "psoriaflora". I would just try a really moisturizing lotion. Its not much to worry about unless its making you uncomfortable - I hardly noticed mine. I hope this helps!

    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.

  5. 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....

  6. 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!)

    Hey,

    Just wondering if anyone has ever had a bad allergic reaction to Florinef? My cardio had never heard of one (in reality) involving hives. I have, at least what I think, are hives (look similar to the ones I used to get as a child from exposure to MSG, but the location is a little odd) on my lower stomach and upper thighs, with some on the lower legs. They mostly cropped up at night (some during the day) and on areas where I have tight clothing (sock and underwear elastic,where pants crease, ect.). Anyway, they appeared accompanied by shortness of breath and some mouth/lip swelling two days after I started Florinef. I have been off it for three days as of tonight and there are no new hives (took a Benedryl today though) and the others are faded. However, they are leaving hyperpigmentation/bruises. Anyone else had a similar reaction?

  7. 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.

  8. 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.

  9. I think it just depends on what form of dysautonomia you have. From the webinar with the dr from johns Hopkins the other day it seems people with pots tend to have higher norepinephrine levels and people with nmh have higher epinephrine. Hence the difference in symptoms. I personally have Pots and am very hyperadrenergic. Meaning I just feel like I always have too much adrenaline. Even before diagnoses this is how I would describe it Tony husband. Either I have too much or am very sensitive to what I have. I have been this way for as long as I can remember. Anything that could possibly increase norepinephrine such as adderral, decongestant,sari snri,even supplements were BAD news for me and made my Pots symptoms much worse.

    So, I guess it would depend on your symptoms and diagnosis. I would say if u don't get that wired feeling then I would start out with the tiniest dose possible. You can always go up. I just started a beta blocker yesterday and the dr prescribed 20 mg 3 times a day and I took 10 this morning and 5 this afternoon. At this point I'm handling it fine. So I guess you know your body and figure out whether u think the way the drug works will benefit u. Otherwise u just have to try and see. I know how scary it can be! Good luck!

    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.

  10. 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.

  11. Thanks for your replies. I can't call my doctor, but did end up in emerg the first time I tried Florinef. When I asked if the crushing chest pain, cough and eye pain could be a medication side effect they basically said who knows and sent me home. The first time (at 0.1 mg) my actual eyeballs felt swollen, and when I started again my eyelids swelled noticeably, but my eyes still feel strange and swollen too, but not so painful. I have no idea what to do about it though.

    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. . .

  12. When I titrated Florinef up to 0.1 mg my eyes hurt a lot. Then I went off for a couple of days (eyes got better, heart got worse) and started again taking .025 mg - my eyelids got very swollen and sore. This has never happened before, but every day something new and strange seems to be happening. Has anyone else noticed eye pain that seems (or not) to be related to taking Florinef? This is so confusing.

    Sarah

    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

  13. Shan-

    I am a bit confused why you were taken off now. The drug is still on the market - it is not a safety or efficacy issue really - it's a paperwork reporting issue mostly. If you were deriving benefit from it you could still get it.

    I was due for my next three month supply on the 17th and called the cardio's office. His nurse called it in to the drugstore - I never did talk to her as a partial supply was available at the pharmacy yesterday. That by itself is not unusual as they usually don't have 270 on hand.

    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!"

  14. 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.

  15. 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...

  16. My message directly from Shire says they will be discontinuing ProAmatine in September 2010 as a business decision. It goes on to say they are sorry if it is affecting my treatment plans.

    Does this mean generics will be discontinued, also?

    I am having an anxiety attack.

    You can contact them here: medinfoglobal@shire.com

    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.

  17. 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...

  18. There are so many other things that can go along with POTS. In addition to her list of things, I'd also check your thyroid and be checked for food allergies and food sensitivities.

    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

  19. 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.. :blink: "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: :blink: :blink:

  20. my family doctor has been wonderful (he was the one who caught the initial high heart rate)...but I'm really not all that sure about his recommended EP Study (which involves a cardiac ablation? *shudder*). I didn't like the heart doctor, that's for sure, and experiences like that (for several years with several different specialists) have left me just sort of burnt out on doctors... But hearing other people say I should probably continue the search does push me in the right direction...

    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.

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