villen Posted February 23, 2009 Report Share Posted February 23, 2009 Hi!I have been writing about what my main problems are( pounding heart, shortness of breath, adrenaline surges...- just from moving form one position to another, after waking up etc) And I seem to get so frustrated and scared everytimE. I am sick and tired of feeling like I am about to die or suffocate every day!! And I wish I could just learn how to not be so anxious about all these symptoms (I have GAD and panicdisorder as well) It may sound stupid, but I have gotten into a vicious cycle, where Im on high alert, especially when home alone...I uses shoe when Im home alone, just incase I will have a spell(symptom, or panic attack, so I quickly can run out and ask for help or at least have someone to see me if I will faint etc.....Nothing has ever happened though! I never faint, its just these uncomfortable feelings, and that leaves me drained and tachy long after.... I am tired of having it like this and not be able to trust my self and be alone...and I know I have to do a lot of re-programming with my thoughts.....Does anyone have any tips or wise words?I have started to eliminate caffeine, sugar and aspartameproducts (I used to drink strong coffee and lots of diet coke) Hope that will help some!I really need a change. Oh, and I have also started taking cucumin/tumeric capsules after getting inspired by antoher tread here. if I get healthy I dont mind turning yellow...take care:)Villen Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted February 23, 2009 Report Share Posted February 23, 2009 If you get these spells when your heart is racing, it is normal to experience some sense of heightened thought. Try doing "self talk" it is you speaking lovingly to yourself in a nurturing way. Say, "okay, what is this I am feeling / experiencing. Is this fear based in real-time or POTS time. Is it okay to just let this go? Am I in real danger or is this just my body going funky?" Then, do everything you can to bring your heart rate down and breathe deep and hydrate. Rest.What do you mean by "shoe"?It may seem unusual to some not POTS people, but you will learn how to "ignore" many symptoms because over time you learn and train yourself to recognize and let go of the emotional concern. Your body is trying hard to get into physical balance so do not let your mind race when your heart does! Many of us have been told by top ANS doctors that the symptoms are a disruption to our life but will not kill us. This may sound simple but it will come with practice. Read spiritually centered materials. Lead with a strong, peaceful mind. Foster kindness and compassion in your heart. The rest of your body will learn to follow.I keep hoping there will be better days, that a cure will finally be discovered...until then, I try to find the balance between being optimistic and realistic.I do think caffeine in moderation, hydration, compression, meditation...all these things have helped me.I hope you will fine a formula that will work for you.best regards,tearosePS: I have never stopped looking for new ways to help myself which right now includes trying Inosine and Turmeric. Quote Link to comment Share on other sites More sharing options...
villen Posted February 23, 2009 Author Report Share Posted February 23, 2009 thank you so much, tearose:) I really appreciate it, and I will take your advice into practice. I meant shoes, not shoe;) Hope tumeric will do something for us:) Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted February 23, 2009 Report Share Posted February 23, 2009 (((((((((((villen)))))))))))))You are not alone. Even though you are on the other side of a big ocean, we are connected in spirit, hope and dedication to a quality life. We all go through this!!! I hope that you can visualize yourself sometime in the next few weeks, putting on your shoes, and jacket and going outside for a little walk from your house to a favorite spot to sit and reflect. Hold that in your mind and heart and know that I too will be taking that walk in a few weeks and thinking of you!tearose Quote Link to comment Share on other sites More sharing options...
cma Posted February 23, 2009 Report Share Posted February 23, 2009 Sorry, but I don't have really wise words I just can relate. On most days I am also very anxious to be alone, but I have to. I keep my cell phone close to me all the time. I try to do all the things that I have to like taking a shower, washing dishes, a little exercise when my man is at home with me. I don't go out alone, although I am taking beta blokers walking raises my hr and I get slightly lightheaded and when I am alone my thoughts start racing, I become anxious and I am afraid to faint and all that stuff, so for me I feel safer with someone or at home. I also get scared when my heart starts racing and it is very difficult for me to control my thoughts at that time. I am trying and learning though, also reading spiritual stuff and trying to meditate and taking some calming herbs.I dream about that day when I will be able to go shoping alone again or taking a nice walk in the park. Strenght and peace of mind to all of us.cma Quote Link to comment Share on other sites More sharing options...
all4family Posted February 23, 2009 Report Share Posted February 23, 2009 Hi,I don't know about "wise" words, but I do have some words to share with you. I almost fell over when I read your post, because I used to do that with the shoes also. A big part for me was I didn't know what was causing my horrible symptoms, so I felt certain that one day this "thing" that was making me sick would end up being really urgent. (There was even a point my symptoms were so bad that I slept in full clothes, and shoes.) Eventually I got used to the fact that no matter how many times these bad things happened to me, or how many times I fainted, I always ended up being alive in the end. (even if still feeling bad) So for me it turned out to be something I had to learn as I went. Take comfort in the fact that you know you have this, and that it does cause these problems. One thing I used to do that helped me a lot was to write about the symptoms I was having, and the severity. (for some this might just bring there attention to it more, so do what is comfortable for you.) Then each time my symptoms became severe I could look at that, and take comfort in knowing that it had happened before, and it turned out ok. Also just the act of writing down how I was feeling relieved some of the fear of how I felt. I am now to the point that I am more worried about how people around me will act then the symptoms themselves. (but it took me a long time to get here.) The diagnoses helped with this, as I read about the disease I knew others felt these symptoms. That helped a lot. I hope you find what works for you, and makes you feel safe. Suzy Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 23, 2009 Report Share Posted February 23, 2009 If you get these spells when your heart is racing, it is normal to experience some sense of heightened thought. Try doing "self talk" it is you speaking lovingly to yourself in a nurturing way. Say, "okay, what is this I am feeling / experiencing. Is this fear based in real-time or POTS time. Is it okay to just let this go? Am I in real danger or is this just my body going funky?" Then, do everything you can to bring your heart rate down and breathe deep and hydrate. Rest."?It may seem unusual to some not POTS people, but you will learn how to "ignore" many symptoms because over time you learn and train yourself to recognize and let go of the emotional concern. Your body is trying hard to get into physical balance so do not let your mind race when your heart does! Many of us have been told by top ANS doctors that the symptoms are a disruption to our life but will not kill us. This may sound simple but it will come with practice. Read spiritually centered materials. Lead with a strong, peaceful mind. Foster kindness and compassion in your heart. The rest of your body will learn to follow.Tearose really said it well. I've had POTS symptoms for 3 years but really bad for just the past year. It's hard for those of us who remember how healthy we were before dysautonomia and we feel frustrated and helpless! The symptoms can be very scary. BUT it's amazing how dwelling on all the scary "what if" thoughts will worsen my symptoms. I've become much more passive, realizing that my body just can't handle the stress of worrying. Some days I have to force myself to be distracted from my chest pain, tight chest, etc. For me what helps is playing quiet, uplifting music, reading a book, calling a friend to talk about how they are doing (not about how badly I feel), and forcing myself to think about the things in life that bring me contentment. When I feel well enough, my hubby takes me for a drive and we stop and just look at the scenery, feel the wind, enjoy the vast beauty of our world. I dwell on these times when I'm laying in bed not able to take a deep breath and feeling every painful heartbeat. For me, this works better than any medication I've found. Quote Link to comment Share on other sites More sharing options...
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