tinkerbella

hi everyone, here's what happens to me, my bp crashes and i fall in the middle of the night all while struggling to get to the kitchen to eat everything i can find. the sweeter the better. that's when i was given a meter and strips. the PS said all her POTS patients have problems with blood sugars and they keep an eye on my ac1 test. i was told to test when i feel these feelings come on. i have been low to high but ac1 is fine. i need to eat small meals with protein. no carbs or sugar after 3pm, even fruit. wrinkled hands is a sign to me that i'm dehydrated. I just came home from hospital after being there last night and today. USUALLY MY HANDS ARE PLUMPED RIGHT UP. Not today, and this morning it took 3 tries to find my veins. Er's just don't get it when it comes to POTS. we'll see what happens this weekend when the whole cycle starts again. hope all are well here.

my eyes always take days to go back to normal. anyone else have this problem? also have to get plugs put in the tear ducts for the dry eye. BellaMia~

waiting to go to er while i post this sweetheart. bear with me, my daughter has two little ones the youngest just turned 2. last night i was on phone with her and he has been the perfect baby, out of the crib he came, she was all heartbroken as her first child 4 stills sleeps in the parent's bed. she kept putting him in and he would get out and cry, breaking mommie's heart. I said, "stop it right now, lock the door the furniture is bolted to the walls, everything is child safe, let him cry it out now or you are going to have two in your bed for years." She did, he cried 5 mins and fell asleep behind the door. She was the same way when she was little. the doctor suggested a screen door, so she could see out. It wasn't easy. I also had to put locks up high on all doors as she later walked in her sleep and feared she would fall down the stairs or let herself out. good luck and got to go my ride is here.

LOTS of small meals throughout the day nexium drink aloe vera. ginger candy. TRY NOT TO LET ANYTHING BOTHER ME ANYMORE!

Jana, IT'S SO HARD FOR ME. LIVING ALONE IS THE HARDEST THING I ever decided to do in my life. People don't understand. I CRY when no one sees me, THEN pretend everything is just wonderful. I'm finding some comfort knowing I'm not alone. Hope we can make ways to help each other here. I wonder how many others live alone and are house bound? 1 is the loneliest #, who was that song by? they were right. Thanks for caring enough to ask.

interesting thought as I've always been very flexible. taught water exercise for years and was always able to put my leg around my neck, touch my toes, when many younger can't. very flexible. i used to make my class laugh and say, "one day i'll get stuck this way." lol! just call 911 if i do. BellaMia~

I'm so sorry for all you have gone through this past year. Doesn't your doc have an on call person? Then I would go by what the pharmacy said. I have changed from one to another but then again I just can't take beta blockers. they are listed on my allergic to list. My heart really goes out to you tonight. I have been suffering with the flu all day racing back and forth to the bathroom and trying to decide to go to the hospital. Then I read your post. I'm going to hang in till the morning as weekends in an ER are the wost place to be. Try and rest yourself sweet one. Better days are ahead. Sorrow looks back, Worry looks around, Faith looks up. (God's Little Devotional Book) Blessings, BellaMia

my youngest son has been severely diabetic since a young child. we used to eat healthy and salt was never in my diet. since mother's day i feel like i have been failing faster. i just can't exert myself with being so breathless that i can't catch my breath for 10 to 15 mins. My son told me, "All that salt is going to destroy all your organs." I tried to explain why i need it and offered him to come to the doctor's with me. my other kids are still in denial that I'm not able to do things or that things for me are getting serious. We're working on this. Maybe he's right, maybe all this salt is catching up with me. i can't remember how much extra a day they recommend, as my PC says just keep adding sea salt to drinks when you have symptoms. Plus i'm hydrated all the time. i really need an infusion today as i can't keep any thing in me. stinks when you live alone!

Dear Rene, First I wanted to say, I'm so sorry about the loss of your younger brother. I will say a prayer for you at this difficult time. It must be so hard to even think right now. I would play it safe and call whoever prescribes the meds for you and do what they say. that person should know you best. I could say what has been done for me, but you're under an extra load of stress and your doctor may want to know this new family history and decide what's safest for you right now. Please take care and let us know how you are doing. Sincerely, BellaMia

I I was told melatonin can bring out an autoimmune disease an I didn't need that one more thing wrong with me soooo I have 2 bottles sitting around here wasting away, as I used to use that in the beginning.

the last time i fainted was years ago, i woke up on the floor and wondered why the water was running and why i was looking at my cannisters from the floor. i was crying and hurt myself. this was way before i ever was dx with pots but i know i have always had pots. now my hr gets so fast,i start sweating, i need to drink or sit really quick which i usually do. recently i'm starting to see gray and stars the black. this has made me tell the doc more is going on, which has been confirmed with a 24 hour BP monitor along with my on BP monitor computer program that i can take whenever i have these feelings. i my i just got sooooooooooooooo sick.

suzy, i never really got to know you, but i wish for your all the best. i hope and pray what ever you are doing, it's going to last. and if you figure it out let us all know. by the way i'm BellaMia from Boston, Ma. hoping to meet others in the area. take care~ Bella

That's terrible! that med put me asleep for 1 hour and all the other newbies out there on the market. Take them still don't sleep, and have a hang over in the morning feeling. Yuck! so i just don't take any now. had sleep study, and they ran in and caught me just as i was about to fall out of the bed. Dr tells me, "do you know that you cry in your sleep and talk?" "who me really?" "And it's hard to keep you fibro People in bed all night you say?" I want to have a new sleep study as it's been several years now. They moved it out if the hospital to a fancy smacy section of town. no I read some where that the c-pap machine helps the brains with Pots, as we lose brain cells dropping so low at night. Anyone know anything about this. WISH I COULD FIND THE ARTICLE, as I was wishing it would clear my brain fog. ALSO, HELPS to prevent memory loss THANKS IN ADVANCE, if anyone can point me towards it. BRIGHT EYED AND BUSHY TAILED in BOSTON!

Tea, still shooting up prayers for you. I'm in a brain fog right now from trying to work in the graden. Wasn't sure where you're son was graduating from. If it was from a local high school, as around were I'm from the local cable stations broadcasts them. Just a thought..... Maybe you could do something special and write some memories of other graduations down for him while you're not able to be there and let him know just how much he's grown into the man he is today. Memories last forever in the mind and are a gift when we share them in writing. Often we never have the time to write things down and time passes and we forget precious moments. My kids and grand kids love when I write all about them and a special day or and an event. IF YOU ARE TOO TIRED, maybe someone else could write while you talk. My 4 year old little one says, "are you. "berealling" me nannie?" I chuckle at her made up language and expressions. Priceless...... Often busy moms don't have the time to write these things down, a grandparent or mom when on bed rest can catch up on writing these special memeries down. Try to turn this around into something positive as hard as it may be right now. For some reason you just were not meant to be there. Some things we have no control of, but can do other things to make the day more pleasant. It will be teaching your family a life lesson that one day become a family tradition for events like this. No one likes to see their mom sad or sick. I'll keep checking back in on you. ((((((Hugs))))))) BellaMia

When all else fails call in help. nothing worse than being tired on top of tired. I wish I lived nearby, as I would volunteer to help you. I hardly sleep and love to soothe crying babies and early childhood is one of my backgrounds. The thyroid (Hper) that firewatcher mentioned happed to my daughter right after the 2nd baby was born. She got so thin and emotional I knew it and told her you have them check you thyroid when you go for your check up. She said, "No I won't nothing is wrong with me." She came out of the office with a lab slip in hand, laughing and said, "I have to have my thyroid checked and I didn't ask the doctor she asked me as I looked way too thin for just giving birth." It came back hypo... Sending you prayers for peaceful nights and lots of good rests. BellaMia

Have you tried a sound machine with the sound of a soothing heart beat? I play one all day long to soothe myself and everyone else who enters my house. It's suppose to help get your own heart rhythm back in sync by listening to a normal beat. TURN IT UP LOUD AND RELAX, as long as you know your baby is safe and there's no health, reason for the crying. Many people tell me they feel sleepy from the sound. Good luck. I used to play relaxation music and meditation stories with my own kids. Along with putting hard cover books in bed with them till they fell asleep. Now they love all kinds of beautiful music having been exposed to it at an early age.

Hey Nauthiz, I have had every kind of leg /calf pain under the sun. If you're worried it's a blood clot have it checked out. I had the pains in the area you were speaking of doc sent me for ultra sound and they started looking in the upper part on my legs and thighs I was confused, when I told her that was not where the pain was she said this is were the clots usually are. Then just because I kept pointing out the lower calf she scanned that area also, nothing was found. I just thought all my pains were fibro, chronic fatigue syn. and now my neuropathy getting worse. And it's time to drink more, stretch, or "When in doubt, check it out!" I hope all is well.

hi congrats for the official dx. I have left sided issues also and have for years. I've called it left sided weakness with numbness and facial drooping pain. I use a crutch now as two make me get so tachy. As I've progressed with fibro I do have multi focal pain on both sides but the left has always been more. Although I was DX with POTS and all the CF, FM, PN, Raynards, migraines, IB, hypo thyroid, my brain is down and I can't think I know there is more they were all validating that I knew these things were all real. I wish you the very best treatment plan for you. good luck. And if you need a friend I'm here.

Hi morgan and firewoman, I just want you both to know your in my thoughts and prayers still. I can relate to a lot of this as I lay in this bed of mine today. I was scared to death when they told me I had diastolic dysfunction, and not enough blood to pump in my body. (a stiff heart, was what he called it ) that was even before I knew I had POTS. I kept having one thing after another go wrong with me. This is only part of it, the gall bladder with 80 stones, colon polyps that were ca, uterine lining with pre-ca cell, wouldn't stop bleeding even on meds which. made me sicker, but I can't have surgery, then they did a deep D & C and thankfully I've been OK. If I start to bleed again Im in trouble. Now the back is got tears and buldging discs can't be seen at the spine clinic till june. Mother's Day I started with not being able to breathe really bad with exertion. Lasting a good 10 to 15 mins with heart rate so high and BP dropping so low. this happens all the time but not like this and not this long. It happened again at hydration yesterday only BP went very high and they called they doc they were so worried and slowly watch the hr come down. They were afraid of congested Heart Failure, my thyroid being off,(it's already hypo) and a few other tests I need to google but have been too tired. All came back normal and in the meantime I started vomiting while there. My heart was bounding and they retook my vitals and I wanted to say you need to wait 5 mins in between postural signs and I know the nurse wanted to get the heck away from me, as I could hear them talking that they thought I might have the swine flu. (but calling it the new name I can't remember) Doc said it's her POTS and let her go home. I was going to email him today or tonight just so tried and not sure what he can even do for me as he wants to do an ablation and pacing and I don't want to have that done. From what I've read I've gathered that people have had some bad luck in that area and once it's done there's no turning back and then you have another set of worries. So, I'm buying time and trying to educate myself as much as I can her Had dr. appoint today and forgot to call cab in advance. Too weak to do anything at all. All I know is I can't live like this doing nothing, living in a mess and being all alone most of the time. Every time I try to exert my self I feel like my heart is going to jump out of my chest and I'm going to pass out so I either fall of drop to the floor, sit, or lay down. I try not to live my life in any fear anymore. My mom is 89 and she always said, "There's nothing to fear, but fear it's self!" May all of us who are being tested right now find some answers, relief, and the best thing of all is friendship. ~~Blessings and prayers to all~~

Oh tea darling, that really hurts. I'll pray for quick relief and and a fast recovery. I hope this story will make you laugh a little next time you get on line. Out of the mouth of babes. I spent a good part of last summer with that #%@**%##@** pain. Reason being the drug store gave the the wrong amount of mestinon 3 times a day for a month. I went to visit my family and my belly had swelled up so big and had been hurting really bad. My almost 3 year old granddaughter took one look at my belly and ran out of the room yelling, "no, no, no, I love you too much much go home, I hate it, go home, this can't happen to you !" Needless to say, I didn't have to ask, " do you think I look pregnant?" to my daughter. I knew enough about my little girl to know she really didn't want me to drive all the way back home. Besides, I was about to pass out on the floor any sec. So, after I found her hiding in her bedroom still shouting, "go home I love you too much." I figured it out and and we had a little talk. She thought I was having a baby and replacing my favorite little girl with a new baby. She often called me mommie, we were that close. I would lay on the floor and play with her at her level whenever I could visit. I'm just a big kid at heart and used to teach little kids, and her birth brought me back to life again. Now I had some relationship repair to do as she really believed in her little almost 3 year old mind that I was having a baby. So I had to show her my big belly and her mom had just had a new baby brother for her. She hugged my belly and kissed it and we giggled, as my daughter rolled her eyes and laughed. That was the only way she would calm down. I made sure she understood there was no baby in there. I had my camera and my daughter snapped a pic of the two of us standing as I also wanted to send a pic of how big my belly had gotten in such a short time to the doctor. I laugh now as I look back and she's hugging me in my dress and I look like I'm ready to deliver. Never got to send the pic ended. I up in the hospital instead with a near bowel obstruction and that pain was terrible. I thought that swollen belly would never go away, but it did. "The way the air was moving in there I swore I felt a few kicks. LOL! Then when the x-ray tech asked could you be pregnant, I have to just ask? I was in so much pain, but IWROTFLOL! I hope that made you laugh. I just did reliving it as it reminded me of: this too shall pass. Sending healing energy your way.

made mine worse and i decided with my doctor for now, i will drink or eat high salt foods/drinks at the appropriate times of day/night. i'm very sensitive to meds and suddenly i don't know what year it was and the newest med was midodrine, so that's the med i stop. we always start meds slowly one at a time to see which one may be causing a problem. remember, everyone is different and your best judge is to ask someone else if they notice a difference. I was rudely awakened when I was told and I made sure i was better after i stopped. i was also taking this med at night also, when it says never lie down for so many hours and i was the 1 percent that had to. maybe that had something to do with it. i hope and pray for you though that it helps you.

Tea, Sorry your in the hospital. Get Well Soon! I look forward to getting to know you. I wonder why you can always read a doctor's bill and you can never read his prescription. ;) -- Finley Peter Dunne

AMEN! I'M VERY HAPPY TO HEAR YOUR NEWS! He has helped and Blessed me in so many ways. I could not walk this road alone without God's Blessings and Gifts along the way. Sometimes, we're not looking to see the gifts, but he's places many in our paths like Guardian Angles. I'm very grateful.

i have it all too and live in chronic mulit focal pain. Now have pain in L4 and 5 in lower back budging disk with tears from falling. My legs hurt SOOOOO BAD I WANT TO SCREAM. My meds don't take the pain away. Worse at night in bed and I must remember to look into that virus Jennifer told me about and have the doc check it. i have ouchies all the time. with fibro a little jab from someone feels like a punch. when in doubt, check it out!

I took it around the clock before i knew i had pots. i got off it because i was driving a car and it said could make you sleepy. So I had the doc change it it allegera 24/7. Past few days i'm getting worse and need an intervention. i go into the hospital tomorrow for fluids and the staff will do an intake and check me out. good luck as atarax is used for both anxiety and itching.