tinkerbella

when i was at my neuro last she gave me a memory test mind you i just was on midodrine at evening and bedtime and it says never lay down on the label. I was a walking idiot i was convinced it was 2008 two weeks before and it scared the crap out of me. I scored a 28 out of 30. I was ticked off and my reflexes were a little slow. no kidding, she asking me things and telling me to remember things that she'll ask later all while asking me to spell words backwards. i don't do those things. I have a quick sense of humor, know facts about all kinds of thing but that was sheer tourture. after she said that's not too bad, when I read the dr notes it sounds like I'm worse. i guess she could have just told me wee all like this and i would have felt better. I'm not taking that stuff anymore because of that now. now I'm just a regular idiot!

the past few days have been the worst for me. I have fainted once years ago, and almost 6 months ago everything went black for a few seconds when I was on the toilet bleeding heavy at the hospital. I freaked out, they decided to call it a near pass out because I didn't hit the floor. I put my head down and held it and pulled the light for the nurses. the PS said if i hit the floor she would have to pull my driving license. i never have a problem sitting, so today I thought after my rough weekend and realizing I really need a wheelchair, scooter, or walker with seat. Otherwise I'm not going to have a life at all. How or how do I ask for these things and which are the Best? You must have a link to this already. I'm afraid now after the weekend that I will faint if I'm in a line in a store. I passed a man while in a cab today with a nice purple walker with a seat and a basket today. I thought, I could make that artsy and go out in style. But I need help, I afraid I'll be fainting before my next visit. I can email the doc but i need to know what is out there. thanks

firewatcher, that's soooooo funny, but i bet it would be a great seller. You better market that one now! I love it, maybe I could get a playmate one for my dog. It was be much cheaper to maintain than another dog. Let me know when you have them on the market. that's way cool!

I'm allergic to everything and take allergia 24/7 flonase and interesting enough that was going to be another option beside the ibuprofen to take but I was already on it to help blunt my heart rate. anyway, did I mention also hypo allergenic dogs? They are cute and cuddly and every woman wants to hold them. LOL Then I was thinking of you today and I once read you should always carry and interesting book with you where ever you go. It's suppose to get people to talk to you. Do you draw? Drawing in waiting rooms everyone loves to see what you are doing. Well I'll check back with you cause you're going to find someone. Did ya make your list of what your looking for yet?

I had a hard time choosing but to be honest with you and with the medication mestinson I'm on my irritates my irritable bowel is very difficult to live with. It was bad before meds now it's worse. I need to know where every bathroom is everywhere I go and never know when it may it full force and hit me by surprise. Had many most embarrassing stories I could tell but won't. The tummy aches and pains, the constant feeling of hunger then feeling sick, sick sick.... bloating you name it. I hate it. another reason why I'm so dehydrated all the time. I was surprised problems with blood sugars wasn't on the list.

I was tested as i was exposed an found out by accident, which made me go for a test. I had very, very high levels EBV in the past but none current. I had been very sick in the past but no one ever knew what I had. I was also told that any woman on hormones this test will be masked currently and they must be off all hormones for 30 day before testing. SO, IF YOU'RE TAKING FLAX SEED OIL, that has estrogen in it and you may need to stop that also.

Hi, I just want to make sure everyone is using a top BP monitor that is calibrated with their doc's when they are quoting their numbers correctly. I invested in the Omrom Blood Pressure unit top of the line at amazon.com with the software program to print out your info for the docs. I make PDF files and send them weekly so they can tweak me as needed. My doctor told me the others weren't reliable and to buy this brand. I can't get out of bed to get the model # but it's the best one they offer. I had had another that was giving me off readings. Also, your diastolic number can drop as low as 40 at nighttime, as my cardio told me our bodies drop that low when we sleep. Are you sleeping and waking and just noticing this? We can get a little # nutty at times . One day a friend said, "I think you shouldn't take you're readings so often, I think it makes you worse to know." LOL I had to tell him it's a science and from there I know what to take next and treat. . Take care all and hve a nice day!

my whole life I've had a problem with my words fist saying them and if I said them wrong once i would never say them ever again. after that or more recently I can't find my words any more so I'm constantly playing charades with people. Now I just tell people right up front that I have a neuro disorder and can't find my words and I may start playing charades with so you please bear with me. we laugh and let the charades begin.

Nauthiz, what a sweet pic, I wish you two the best 4 ever! Bluesman, love will find you when you least expect it. Do what you love and just make conversation with people around you. Interesting note about the artistic values, although I taught exercise for many years and thought I would pass out every time I'm an artist wonder how many others are here. Bluesman adopt a dog if you don't have one woman love them. can you get to a park or the pet stores have on line pet groups? I thought I might try to meet some one with a same type dog and in my area and make a connection. We have pet co. and you sign your dog up and make friends kind of like this forum. Maybe you have a dog, if not they are great companions and now the shelters are full of purebreds as people haven't been able to keep their pets. It make Makes me sad, but it's a time when people can get a beautiful pets for a bargain while saving a life. Plus the benefits of a pet a great. This is only a thought to put out there.

lemon slices cut up around the house or in cupboard work for the ants. mint oil works for mice and anica flowers from the garden I cut and lay in drawers. The dry there and I leave them where the mice have been known to go in the past. My dog I go with the natural flea and tick combo and he smells like a Christmas tree. I Love the way he smells and I buy it at the end of the season Target cheap. I barely ever see a tick on him. Vineger and water spray is suppose to be good to spray on your dog also to keep to fleas and ticks off. I have a hypoallergenic dog. Helps me., as far as allergies go.

Sounds like real good advice fire watcher. Your lucky to have your Dad to ask for advice. I'm allergic to atenolol anyway.

I have found this and worked this out with all my team. I take the smallest amount of whatever now gives me a quality of life. I fought to do natural root but then I just couldn't afford to do that. Using as much nutritional drinks, vitamins, teas and stuff like that still. Used to use cinnamon and dark chocolate for a while for as long as the doctor would let me. I can't take and won't take hormones ever again and wish I had known that years ago more about them. My PS/neuro feels that most pots patients can't tolerate them. Once off them the weight dropped off and the mood stabilized. I had been on birth control pills forever and they slowly put on pounds and pounds and once I was told I was I stopped. Then last year started post menopausal bleeding and was told I had possibly had cancer as the lining was way too thick for a woman my age. I was now having heavy periods again, they had no idea of how this had happened, and they put me on PROVERA. Within a week I WAS bleeding worse and could hardly breathe. They cut the dose, still didn't work my posts was out of control. The gyn wanted surgery to remove everything and put me on MEGACE. I was now totally out of control, put in the hospital, given another stress test with the worst chest pain in my life. I thought I was dying, they keep seeing something on the ekg and held my hands as I cried. FELT LIKE I was being stabbed and stabbed. THE HAD THE CRASH CART READY, STARTED A IV OPEN WIDE. I started praying to die the pain was so bad. I decided at this point I had had enough and could take it any more, especially being all alone as my family all away on vacation., They called the cardio doing the test and he said I was having a pots flare from being with held fluids and flood for too long. I believe it was from the hormones and having to position my arms over my head for so long also. HOSPITALIST, WALKS IN AFTER LIKE IT WAS NOTHING AND TELLS ME HE JUST READ ABOUT POTS ON LINE AND YOU GET CHEST PAIN. I want to throw my dinner at him, as he tells me I can go home after dinner. YES, DRIVE MYSELF HOME. I could hardly walk, I hate going to just the regular hospital, the hospitalist just doesn't get it, nor do they know you. I kept telling them I was falling at home and near passing out at night. So they send a useless visiting nurse for a week dischages me with with a BP of 160/100 and a near bowel obstruction. I end up in hospital again. and my iron was at a 4. I should have had a blood transfusion. Back to the story, my doctor never got this information in the notes of my stress test they left this whole piece out. I was furious and he was also!!!! SORRY for the little rant, if you start any hormones and you notice you breathing changes and you get extra tachy STOP THEM! I never had surgery the cardio, wouldn't let that doc. I got sent to a cancer sp. who did a very deep D&C at the best hospital in Boston as my vital are not stable. I have a year not to bleed to be considered safe from the cancer. So far so good and no surgery, too many woman have surgery too easily. I'm not having major surgery and for me they told me it would be due to having an ectopic preg. in the past they would have to go in that way. I had to pull out notes from way back then and found out my heart was fast under then knife when I was just a young woman. I know I've had the pots forever. Good luck everyone with what ever you decide to put into your body. Just remember it's your body, ready about it first educate yourself and make smart decisions with your team of doctors. Make sure they all communicate and have signed permission to.

Bluesman and others, I say don't give up. I've been alone for the past year now. Not only grieving to loss of someone I had to say goodbye to. But for a man that I really loved because he was dysfunctional and at the same time I had finally been given the DX of POTS which I know I have had all my life. I had to take care of me now instead of him. I had wasted many years on him and I have been very sad. I'm still not over it. I'm really sad as I'm older middle age although I look much younger, and if I hear you look great one more time, I think I'll scream. Anyway, recently I wrote to my ex and question our love having being apart for 1 year. I wrote everything I was looking for in a partner and when he wrote back he could never give me those things. I then realized he never gave me anything I gave everything to him. I had been used all those years. But, now I had a list of what I wanted. Suddenly men started to flirt with me again. I don't get to go many places as my one real day out is to the hospital for my day of infusion. I guess what I'm saying is make a list of what you would like in your life and attract it to you. I don't want to spend the rest of my life alone. I don't think any of us do. I hope that all of us who are alone will find that certain someone who take our breath away. I hate being all alone with just my dog. I hope one day I be telling you all a happy ever after ending. Good Luck guys..... I envy all of you woman with good men who have stood by you, as I know it's not always easy.

morgan, get a good rest and know that everything will all work out! now i've got to challenge this heart monitor one last time before going to bed. sweet dreams! feel better.

i can't take a lot of things due to allergy's. i hate beta blockers this is one metoprolol er or just plain is suppose to be one of the better ones. I just can't tolerate any. er is extended release and would not be good if one's bp drops in the late afternoon and evening. i tend to get very vivid dreams or nightmares, I should say and my Raynard's flares really bad. i had bad side effects to clonidine, but decided to take 1/2 of a pill. It's not even considered a therapeutic dose. It helps me get some sleep and will bring help bring the hr down. side effects are much less with 1/2 and I would consider going up now that it's been about one year. Ibuprofen 800 3 x a day will blunt the heart rate but you need to be on something for your tummy like nexium. I broke out in petecchiae on my lower legs so I had to stop. compression hose, Mestinon, cartia xt (raynard's) and BP

looks interesting im trying to find some stuff to wake me up and suck me out of the brain fog, the multi im taking is helping so far it seems. I think whole gfood green supplements help i might try getting a barley grass sort of thing going. As far a the brain fog. Good Nutrition is going to get a persons engine going. Start the day off with a Protein Shake or the Shapeworks Nutritional shake and a GOOD Multivitamin such as their Shapeworks Formula 2 Mutltivitamin. ALL of their supplements are low dose so your body better absorbs all of the nutrients and does not waste it down the toilet. All of the supplements because of that low dose are taken more often. Want a pick me up. Get the Liftoff for enhancing mental focus and mental energy. Just like the H3o, it comes in easy care packets to take anywhere. Just pop one in 10 oz of water. Want an additional pick me up throughout the day. Herbal Concentrate Tea. These are the products I like. My doctor has all her patients having shakes for breakfast. These look the best to me and I need to lose that foggy feeling also.

G :) D FOR Y :)U. I hope it only gets better for you. and remember, we get by with a little help from our friends!

Morgan, I just stopped everything and prayed for you, sweetheart, I know that pain all too well, had mine out a few years ago with complications. you have tooo much on your buffet right now. you need to focus in on you right now. everything else can be broken down into manageable pieces after. It's too hard to think when your in so much pain. another thing, mercury is retrograde right now, communication is really off. you must be cool, calm and collective and tell the right person just what it is you need. things will be this way till the end of the month and things will turn around. you need pain medication and you need to have this taken care of. you know all of this as you are a nurse. morgan, if there is anything more i can do, i'm here for you. you know how to reach me. you'll be in my thoughts and prayers my friend. (((((hugs))))) and get well soon!

Linda, Thanks for the info. i been tested for EBV and i never knew i had had it. The doctor's office said they had never seen such high #'s. I didn't currently have it, but could get it again in the future. I really thought I had it as I'm so fatigued, but this past summer I had a cancer scare and the meds the put me on made my POTS so bad my heart got so tachy and I got so tired. I will ask about the HHV-6 TEST. IT IS IT STRANGEST PAIN , and after reading about it last night I worked with preschoolers forever and I believe it's related to roseola. I also had problems with my bone marrow being supressed years ago from a medication for depression and anxiety when all along it was POTS. Do you by chance get planter fascitis that really never goes away? thanks again for reaching out to me I felt blessed to get that message last night. I hope you are feeling better. I'd love to know more about your pain and how long you had it for if you'd ever like to chat. sincerely, Bella

My B12 shot that I get monthly gives me a feeling like I can do anything, add hydration as a boost and I'm good for a maybe getting the pile of dishes finally caught up, doing some laundry, but i just wanna have fun! then I crash. I want to dance, be silly, go out and play. I wanna live life to the fullest out of bed, when I can get out of bed! when I go out my bag is so heavy because i have so many drinks in it, meds, and i need a battery operated fan to add to the bag. also i bring small snacks, to eat, smalls meal many times a day are better for us. use a back pack, pace yourself and tell anyone who is with you. when someone offers to do something tell them what would really help you. i working on trying to simplify my life and that's a big deal for me. I'm a pack rat! i try to get all my meds for 3 months at a time to save time and money at the drugstore. i should be doing this one now, as i love it voice to text software, you speak and it spells and adds punctuation. the best program is dragon. my hands are so swollen and sore. from the salt. i recently had a problem with vista crashing and took it off and changed some things i should add it tomorrow. what a difference it makes when you are so tired. i hope these help, i'm a little under the weather myself this evening. been a long, long day. good luck hope we can all learn something new to help.

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wow, i just found this here tonight as I'm learning my way around here. thank you for writing this as I'd like to pass it around to those in my life who just don't get it. maybe hearing it from someone else will help. thanks.

I know my docs know my life is hard, so i tell it like it is so everything is documented. Especially if you're disabled or about to apply for it you need documentation. You have to be your own advocate. Sometimes, I find mistakes in the notes and I have to make the dr change them. Everyone should carry around your last dr.'s appointment notes in your back pack or bag with med list in case of an emergency and tell who ever you go out with it is there as it could save time and your life.

YES!!!!! worst they ever seen! They can't even find the right nerves to numb. once I had 21 shots of lidacane they sent me home for their lunch. I came back gave me 3 more and I WAS FINALLY numb. now I'm allergic to lidacane.