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twobyfour99

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  1. Jessica, I see a dr. named Dr. Nayak. He has been my cardiologist for 3 yrs. I was just dx with pots in January. All I hear is to hang in there until October. That they've tried all the medications, and I just have an extreme intolerance to all of them. I have been told to go to the er every time I pass out, but judging by this forum, it seems like most people are encouraged not to. At this point I feel like all this disease is doing to me is progressing. It's scary. Thanks for all the responses. Frances
  2. I read your post and I know exactly how you feel with the confidence issue. Ya know what helps me when I'm feeling the least confident and like I'm just no use? To do something to help other people!!! So I think your idea would be great for you. I think you'll be surprised. I just posted on the Va. group b/c that's my primary forum, but I was telling them about how I've been in N.J. with my sister who has 3 children. (ages 10, 7, and 9 months) YOu can imagine how hectic her life is and how much help she needs. So I came out b/c it was the 7 yr. old's b-day. I have had symptoms worse than ever before these past couple of weeks. I was very reluctant to come out here b/c I didn't want to be more of a burden on my sister than a help. Somehow I managed to push through and be a bigger help to my sister than ever before. I honestly think we need to feel impt. and I think a lot of times we tend not to. So I would encourage you to start that youth organization. You will probably feel a huge sense of accomplishment and that can't make anyone feel bad! Frances
  3. I have been feeling worse than ever these past couple of days. Migraine headaches which are new for me, severe pain in my abdomen and arms, weakness, fatigue, dizziness, and palps.!!! Grr!!! My cardiologist is at a point where he has basically given up. He doesn't know anything about pots and therefor told me to make an appt. with my pcp b/c it could be a gi infection. Told me he would see me if i wanted, but doesn't have much more to offer. My appt. with Dr. Grubb isn't until Oct. and my financial situation is making it look worse and worse for me to be able to get there. My mom and dad don't understand my illness and really have shown no interest in learning more about it. All they care about is that I fulfill my obligations to them no matter how bad i may be feeling. Work looks hopeless for me. It is affecting my relationships!!! I am so angry right now. Frances
  4. Hey there! 8 times a day! Man, I thought it was bad that I fainted once a month! Wow! What do they do for you??? I have heard that POTS is something that comes and goes. Meaning you can have a long period of time where you feel the symptoms and then they can kinda go dormant for a long period of time too. So it's something that will probably never officially go away, but does have hope for happy days ahead!! That is my understanding of it so far. Did they tell you to increase salt, water, etc? All that good stuff!! Frances
  5. Your responses have been wonderful! Changed my opinion about going totally! Yes, my appt. is Oct. 12th at 1:00 p.m. with Dr. Grubb. When I scheduled it, the appt. was over 8 months away. I thought it was crazy to have to wait that long, but I guess if he knows what he's talking about, I understand why. Maybe we could get together while I'm out there. Frances
  6. 50$ to have someone truly know and understand would be well worth it! Being there for a long time wouldn't bother me either b/c i have TONS of questions to ask him!!! Frances
  7. I have been in your shoes. At times I still feel that way. The biggest thing that has helped me is deciding that I wanted to make a difference and try to change the way things are done re: our illness. As for eating? Salt! Salt! Salt! Celery is surprisingly very high in sodium. Also, canned soup has enourmous amts. of salt in it too. My dr. told me I should try to eat two cans of soup a day. Unfortunately, I'm not very big into soup. Salt pills are also reccomended. Stay away from caffeine, eat numerous little meals a day versus big meals. Hydration is also key. Sometimes I feel as though I am drowning in my own skin, but I know that it is better than becoming orthostatic and ending up in the hospital. This process is very frustrating, but you have come to the right place to get relief. People on this forum are very supportive and generally know more than the dr.s do. Sad, but true. If you have any questions, emotions, fears, etc. Feel free to post them. You will be surprised by the results. Hope you feel better. Take each day as a new day and when you first wake up drink lots of fluids. It will help a lot. Frances
  8. Thank you so much! Just knowing that it isn't a standard amount of time for a dr.s appt. makes me want to keep the appt. more. Do you guys know if insurance covers it at all? I have mamsi optimum choice preferred. I don't feel like I have enough knowledge of this for someone who suffers with it on a daily basis. So far, my care here has not been satisfying for me at all. The 3000 trip that I was talking about did come from someone who was from Canada so maybe that's why it was so expensive. The meds. they have tried on me haven't worked so far. I have been on midrodine and couldn't handle the side effects of it. I tried adderall and it worked, but prevented me from sleeping and gave me a migraine when it started to wear off. Florinef didn't seem to make a difference at all either. All the meds. just seem to make a difference in my financial situation versus my health. So who knows? Maybe it is worth it to go see him. Knowing that I could walk there helps too. What part of N.J. did you come from mighty mouse? My sister lives in Southern N.J. in a little town called pitman and that is about 2 1/2 hours away from my house depending on traffic. Thanks again guys! Frances
  9. Hey there! A couple months ago my cardiologist made me an appt. with Dr. Grubb. Believe it or not, he was booked until Oct. 12th. So I have an appt. with him, but am concerned about the expenses of the trip and not getting out of it what I am desiring. I live in Northern Va. so I would have to pay for plane fare, hotel accomedations, and food. Probably also rent a car to be able to get to the appt. I just wanted to know from people whether or not it is worth it. Is it just a 15 min. appt. where he is going to tell me things that I have already heard? Or does he think of things that no other dr.s think of? I have been suggested another dr. by one of the ladies on this site that lives in my area and she has had different tx that I have been asking my dr. for and he simply doesn't listen. I am just so torn on what to do. Don't want to give up my spot until I'm positive, but I am not in the best of financial situations right now and I read of someone whom it costed them 3000 in expenses to go see him. Yeah, can't do that! Any responses would be appreciated. Frances
  10. Hey there Corina! My name is Frances and I live in Northern Va. Just dx'ed with pots 7 months ago. I have had a heck of time with it so far, but once I found this group and became an active member in it I learned so much more. It's funny. People who have pots have been able to educate me more than my dr.s have been able to. I will tell you what. Before I became active on this site, I knew of nobody that had this. I felt so secluded. Nobody could understand where I was coming from or what it felt like to have these symptoms. Personally, I didn't feel like explaining them either b/c I didn't want people to think that I wanted pity. So now I am not only active on this site, but also actively trying to find ways to educate people on this and somehow get some things changed. So welcome and within no time you will feel as though you know all of these people even though you are just communicating through a pc. Best wishes! Frances
  11. I honestly have no idea how these people that get on Oprah's show do it. They must have knowledge of something that we don't in order to get a hold of her. My neice had cancer for the first 5 yrs. of her life and we were told that she wasn't going to make it. In desperation, I wrote a letter to Oprah b/c my sister and her family needed a vacation in the worst way, but didn't have the means to pay for it. Unfortunately, she never responded. But ya know what? If they get all these letters from everyone with the same concern, maybe out of conscience she would reply. So I say give it a shot! I think the week long "retreat" type of thing for all of us sounds like an awesome idea!!! We could plan it enough in advance that we could all save up money for it and for those of us who are able to work, you could request time off. Looking forward to the tea tomorrow! Frances
  12. Hi there! I was dx'ed with SVT in 1996. My heart rate would go as high as 245 bpm. I remember the feeling. It definitely sucked! Scary too! What I have been told is that SVT is a completely different problem from POTS. I may not have the news you want to hear. They performed an ablation due to the fact that I was having so many side effects from the medications. They found 2 extra receptors in my heart and burned them out. Here I am with a very severe case of POTS. Been unable to work for over a year now. Sometimes I wonder how I end up getting by. Depressing feeling! In August they believed that I had IST from the 30 day heart monitor they had put on me. They were talking about ablating my natural pace maker in my heart, but was in fear that I would end up with an artificial pacemaker if that was performed. Thank God they discovered the POTS before they did the operation! I can't imagine how much worse I would be. My suggestion from personal experience??? Don't go for the ablation. It really does make POTS worse. Sorry. I know this isn't exactly encouraging to hear. Frances
  13. I agree with you there. Do they have these types of cd's for people with pots? If not, how would we go about getting them made? I wonder if these business cards could somehow help us too. who knows? Frances
  14. Do we run a greater risk of aneurisms/ strokes? They say that pots isn't life-threatening, but are we at greater risk for developing life-threatening issues b/c of pots?? Is Pots progressive? IV hydration- can it be done at home? Will insurance cover it? Are we considered to be at greater risk for heart disease? My whole disability thing which I posted separately. White spots on cat scan that are supposed to be caused from hypotension. Do these pose any risk in the long-term? Frances
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