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amykrawciw

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    Quilting, Web Design, Any kind of exercise I can do from a horizontal position, computer games, movies, and sewing.

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  1. I have been on Lexapro for almost 4 years now, and it is the best thing that I did. I tell you it has helped immensely with bettling this disease everyday. My husband was recently prescribed Celexa and hasn't started taking it yet because he has some reservations about SSRI's as well, but like several other people posted, and I told him, it is a trial and error. These drugs affect everyone a little bit different, and no matter what your doctor or a website says you have to trust how it makes you feel. If it is any help at all my mom also started Lexapro about a year ago and she has done wonderfully on it. No reported side effects and it has seemed to help both of us out a great deal. I started out at 10mg, but you can go up to 20. Anything you try, just trust yourself, and start slow, and I'm sure you'll find something that works for you. It is well worth it! - Amy
  2. Melissa, Thanks so much for taking the time to reply. I'm encouraged by the fact that you have been on and off oxygen, that there is a chance I could get rid of this for a while at least. I was starting to think of designing a line of jewelry for the cannulas to make things a little more interesting. I figure if I have to wear it around and feel like a a white elephant in the room, at least I could add a little style to it . I love your way of looking at things, I was pretty excited about the fact that I can sit up for quite a bit longer than usual, and even stand up and walk around the kitchen a bit. It's not such a bad deal. I'm having trouble with the bottom numbers, more than the top, my docs get upset when the diasolic gets over 110, for any length of time. I like the attitude of your PCP. She sounds wonderful! It's great to know you've talked to Dr. Grubb about this too. I'm so glad I posted. I have been so relieved by the response and support I've gotten from people here. It's amazing. I've been so aftraid, even in the medical world to talk about my illness. Even people who should understand, like the neurology interns, most of the time when I tell them I can't sit up for more than 30 minutes, they look at me like I have three heads, and I'm so gunshy and afraid to talk about my condition with anyone because I get these 'you must be totally nuts looks' and I always feel like I should be trying harder or doing more to 'beat' this. I'm almost ashamed which I think it is why it has taken me so long to find a support group. It is so nice to find people like me and to know there are others who understand. I nned to make some kind of business card/pamphlet to start handing out to friends and relatives when they ask "what is wrong with you?" or "what is it you have, exactly". I hate talking about it, let alone trying to explain the gory details to others. I can't say that I would have understood them myself before experiencing them, and most days I stil find them unbelievable. Anyway - enough rambling. Thank you very much - and I hope this keeps you posting for a while! Take care! Amy
  3. Hi - That's exactly what I take.. Lisinopril. It seems to work fairly well for bringing down my really high days. My systolic doesn't usually get that high, but my diastolic has been routineline running around 110 varying 100 - 130. I just have troulbe sitting up right as that causees me problems too.. It's a catch 22. However I can sit up a lot more now that my blood pressure is high so that it a good thing, but I tend to try to do a lot more and then I guess it's too much and it getss higher, which thanks to the postings, I'm starting to understand is pretty common. I really appreciate your response! Please take care of yourself and thank you so much! Amy
  4. Hi! Thanks for your response! The bed rest is Dr recommended, due to the severity of my disease. I don't have straight up pots, I have a sevee authonomic neuropathy which as Dr. Grubb explained, is in a different category than POTs althought it has many similar symptoms. It is due to the fact that I'm unable to sit / stand for any length of time, but I also require 24 hour 0xygen because my heart and lungs are too weak to pump enough o2 through. It's complicated. I do what I can. I do leg lifts and stretching/toning exercises as much as possible, however I have a myopathy that actually causes me to get worse the mroe I do, so I get in trouble the more I exercise, from Dr's, and my caretakers. I do leg lifts in the middle of the night so I don't get caught I was a big fitness freak before I got sick and this drives me absolutely nuts.... I have learned to adapt as best I can. I have been throught ever test, dr, treatment and experimental treatment I think they have that I can find. I even found some that I was going to try to help write the protocols for, but ended up being too high risk at the last miinute. I'm 31 with a 5 year old daughter... if there was any way on this planet I could get up and do more, I would. My greatest battle every day is not doing to much, and most days I end up hurting myself, which is when my BP seems to soar, but the high BP is a relatively new addition, as I've been sick for 4 years now and just developed the high BP last Nov. I appreciate your advice and help. This has been a wonderful group I'm so glad I posted. It has given me a chance to reach out and feel less alone. I haven't wanted to give in to the fact that I was 'sick' for a long time, but I'm starting to reach out more to people and it helps immensely. Thank you so much and best wishes to you too!
  5. Hi Pricilla! I'm so glad you wrote. This was the first time I ever posted anything myself. I just couldn't take it anymore. I couldn't sleep and at 3AM things seem pretty dramatic. I really appreciate your reply and I'm so comforted to know I'm not the only one. I'm sorry that other people have to go through it, but I didn't know if it was something unrelated to the autonomic dysfunction, or what, although I couldn't see how it could be. I haven't heard of the verapmil, but I'm going to look into it. Thank you so much! Amy
  6. Bless your heart - Helen! Thank you so much. I feel muuch better. The mitodrine actually seems to be a very stabilzing factor, I've noticed on several occasions my high blood pressure going down after taking mitodrine because it calms down my HR. I have found that the high BP definately 'flares' up with activity. The more I do, or the more stressful things, or any outside stressors, like colds or infections worsen the seesaw effect. I can't tell you how much I appreciate your advice, and reply and what a comfort it is to know that there is someone else out there with the same thing. I'm so glad I posted a message. This seems like a wonderful support network. I agree with your assesment, the connections are just not working right and the messages not getting through like they are supposed to. I am just not so good at resting anymore than I already have to......i'm sure you understand... Thanks again and take care of yourself! Amy (Sorry about all the typo's in the previous message, I was up at 3AM and fretting about my blood pressure and not paying enough attention).
  7. Hi! I'm relatively new here, and haven't done much posting. i have a severe autonomic neuropathy that keeps me on bed rest most of the time. I have a terrible time with my blood pressure and heart rate, like everyone else with POT/ autonomic dysfunction. However I got very sick with bronchitis/pneunomia in Nov, and my blood pressure started going out of control high,(240/150) in fact they hospitalized me and took me off all my autonomic meds (mitodrine, florinef, mestinon,) However when they did that, I couldn't even get to the bathroom without passing out, my BP would just drop that much faster, but climb really high othersie. I am now trying to balance high and low blook pressure medicine becasue I'm over the pnemonia, and my bp has come down alot, it is still running way to high.(150-110) I thought maybe my neuropathy was getting better, and got so excited, but that isn't the case because if they take away my low BP meds, When I stand it drops to (80/50) I am in worse shape then ever. My docs can't figure it out, they have no idea what's going on. I don't see Dr. Grubb again for a couple of months, and I'm just really curious to see if there is someone else out there stuggling with this because it seems so contradictory to me. Thanks for your time and consideration Amy
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