Mydoggielovesme2

I can only tolerate a small amount of wine(1/4 of a glass) if I am very hydrated, and then only a couple of times a month, at best. Just be careful, until you know how you will be affected. If you can-------enjoy one for me!! Haha

Hi, this is the first time I've heard of the test. I am going to Mayo Clinic in March. Would this be something to ask for? I will do more research about it that's for sure. Thanks

Sorry I messed up something. Still trying to get used to posting. Just so you know, I also use my I pad for this, and I don't think there is anyway to space paragraphs. I've tried different thing to no avail. Maybe someone will come up with something.

Hi Ash, great topic! I love the mason jar salad idea. Cooking is certainly a challenge. I am so blessed with a great hushand who has stepped up to the plate for me. When it comes to shopping, if we can't go together, he will go for us. ( mostly he does it ) I try to make a weekly menu, and shop accordingly. Whatever I cook, I always make it for at least two meals, and one lunch for hubby. Example: baked chic, and rice, and frozen veggies or salad. Prep time is only about 10-15 min. ( on bad day- instant rice) The crock pot is also good. Plop raw meat in, out comes something great in 5-8 hrs. For breakfast, I found a great recipe for " breakfast cookies" that I tweaked to make them healthy. Ten min prep, twelve min in oven, two wks breakfast. Becau

I so understand. I hate winter! And this year is the worst. I do not try to drive anymore, so anything outside my house, I have to rely on someone to take me. Which means I'm mostly home. One hobby I took up is beading, it's not too expensive, and I enjoy being able to give gifts to my friends. Not only does it give me something to do, but it give me something to feel good about. I'm not much of a day time tv person, but I do read a lot. And on my good days, I love to experiment in the kitchen. I should own stock in the foodnet work. Ha I also gave in about two years ago and got a wheelchair. That way friends and family more willing to take me places. Hang in there, spring is around the corner.

Hi Lejones, I am a newbie also. When I had my tilt table my heart rate went to 190, but my BP dropped. I live with hypotension 80/50 daily. Kind of crazy that you can be tachy and low bp at the same time. Guess that's one reason for the fatigue. Anyway hope you get to feeling better soon.

I too can relate. Sometimes this can be one of my more embarrassing symptoms. When you are trying to have a conversation, and you either just go blank, or say the wrong word, soooo frustrating! I even tried one of those web sights to "exercise your brain" no help. My friends and family are used to it somewhat, but having it happen in public is just awful. When I was still driving, I would so often wonder how I got from one place to another. Another symptom I have is complete memory loss. Long term and short. So many thing I just dont remember ever happening. I get so tired of people saying, " Don't you remember, we just talked about that,"or that just happened a couple days ago." Or grandma can't you remember, I made that for you". This just makes me sad.

Thank you Brenda, Just had therapy today, and it went better. We talked about backing off, just a bit. Which she admitted was hard for her to do. But I did not pass out and was able to walk out on my own. I just need to get used to educating others, until they understand--we know what we are talking about--its my body!

Kris, When I read your post, words that came to my mind were, strong, smart, brave, and courageous. Certianly not Failure. We have to listen to our bodies, and it sounds like yours was saying, "take a break or I'll make you break." One way or the other, you needed to stop, so this way you are more in control. In the long run, I'm sure your family, and work will be better off. No one would want you to do more harm to yourself. I know how scary the financial end of things can be, and I wish there was something I could say to help, but your life is more important. So take a few deep breaths, let your family and friend help, and get some well deserved rest. Wishing you all the best!

I agree passing out is nooooo good. The therapist was having me do recumbent bike and lower body exercises. Now we are just doing lower body stuff that I can do while lying down. These I can also do at home. We were told to try to strengthen the calf muscle, as this helps to bring the blood flow back up to brain. I think I just need to remember how long it's been since my body was in " motion", so it's going to slow going.

I am wondering how others deal with this problem. I have to admit that I had all but given up on exercise. Before I got sick, I was so active, hiking, biking, gym ect. But for the past few years, exertion of any kind has meant even more down time. Now that I know I have dysautonomia, I am reading that exercise is so important. My Dr has sent to a physical therapist. I have had 5 appts so far, and let me tell you, it's been awful. Passing out is bad enough, but to pass out in front of others ( other patients and workers) is so humiliating. I had warned my therapist this might happen, but it still scared her. ( I am her first dysautonomia pt.) Now she is almost as afraid as I am. Does anyone have any suggestions? I really want this to work.

Thank you all for the encouraging words. It took me a few years to realize that I was going to have to find my own way through this. I knew that whatever was going on in my body was real. No matter what Drs said. Thankfully I have a wonderful husband who is so supportive and has helped me find my way. Some of the things I've done to cope is: bought an electric bicycle ( so when granddaughter wants to go for rides, I can go- most of the time), bought a wheelchair so I can go shopping with family or friends. Even used it at Yellowstone-family vacation-boy was that an adventure. I guess what I'm trying to say is, I thought I was coping, UNTIL, I was told what I really have. Now I want real answers.

Let me tell you a little about myself. I was working full time when I had my first severe episode. Fainted, with slight seizure after. The one good thing is that I worked in a Physians office with 3 Drs and several nurses. I was taken to an exam rm where the Drs tried to figure out why I fainted. Since I am allergic to so many thing, we just assumed this to be the cause. I was told to rest for a while and see how I felt. Well after about twenty min of laying down I ask the nurse ( a good friend) if I could get up. So we slowly started to sit me up, instantly I fainted, and this time I was out for several minutes. When I finally started to figure out something must be really wrong was my friend was crying, all three Drs working on me, and an ambulance was there. This was in 2007. This was the beginning of **** for me. In a short amount of time I had MRIs, ECG, and an EP study. Told I had inappropriate sinus tachycardia, take these meds and go home. If only that easy. After another six months passed I was given a tilt table and told I had POTS. More med changes. This Dr advised me to apply for disability as I would probably never work again. Which I did do with the greatest amount of feeling of worthlessness. How can one lose control over your life in what seemed to but a normal common existence. One thing I want to say is that I went from 2007 until just a few wks ago thinking all I had was a heart problem. No one could explain any of the other symptoms I was having, and no one would listen either. Finally a new Electrophysiologist visited our town, and I was able, with much struggle from my cardiologist, to get in to see her. Truly a God send. Within 30 min, she said "you have dysautonomia", then for another hour she explained how all the things I have going on are connected. So many emotions, relief, anger, even vindication-- I wasn't crazy after all. So now the next step for me is going to Mayo clinic in Az. Per her advice. Has anyone been? Seeing a Dr Goodman in the neuro dept. I go in 7 wks. Lastly I would like to say thank you to all you fellow forum posters. Just knowing that we are not alone, has helped me so much. I hope to be able in some small way to return the gift of hope you have given me! So that's my intro to you. Questions to follow. Thanks for reading.

This always happens to me. I have so many "lost" moments in the past few years. When I see Drs I try to take my husband with me to help fill in these blanks.