tinkerbella

Thankful, Thanks for your kind words. You made my day! I have nights like that and also don't sleep much at all. Do you know why that happens that our body jerks and burning skin? My PC said to ask the neuro and that's in mid June. I have so much going on till then. I feel like I'm starting to get Parkinson's. All seems to be on the left side of the body. My hand they hit a nerve at hydration about a month ago but the rest of me. I can't figure this out as it's different from the falling in a hole kind of thing when one is starting to fall asleep. Any ideas or info I'd be very thankful to get. Blessings and Love to all~ BellaMia~

Thankful, Thanks for your kind words this morning, as it the warm support I've been finding here that has been helping me the past few weeks. I've mentioned my little stories as they are what get me through the the week. I'm very close with especially my granddaughter as during her second year of life I spent most of the time on the floor with her while her mom worked. I was, "VERY BLESSED AS THIS LITTLE GIRL BROUGHT ME BACK TO LIFE WHEN I FELT I HAD LOST EVERYTHING." I was able to drive 1/2 hour then and now I'm house bound. She gave a purpose in life, they say that's what woman in there 50's are looking for, a purpose. It was a special time I'll never forgot and have documented in photos for her as I love to take photo's. My grandson, hasn't been able to find his words till just the other week and has been speech delayed. As he would struggle to find his words I would often relate to how he felt. He was a special gift to me, as he was birthed at home and I was there watching/ shooting pictures along with his older sister and my oldest son. Words can't explain what took place between all of us that day. I call it Beautiful Love that all mother's and daughter's should share this gift together. Women did this long ago and now we are getting back to it. Since then my little girl has been pretending to give birth to a son, a son, a son yelling out in joy with a doll between her legs and pretending she is crying. She's been told to please just play this out at home now. She keeps me laughing. Waiting for the day the preschool calls and reports she delivered a doll at school. My friends used to think I was making up stories about her till they met her. We often laugh and say we should sign her up to be a therapy child at a senior center as she is so loving and caring. So, I hope no one minds if I add in a story or two here and there as once a week when they are around they drive out for a day of the sillies with nannie. My grandson just found his words at 26 months and is like a tornado upon entering my house. But I wouldn't have it any other way. I'm the happiest when I'm with the people I love. The headaches yes, I have to take topamax daily am and pm but high doses will make you lose weight and I lost weight soo fast that I got too thin this was pre POTS and had to have my gall bladder out. Was told this happens when ones loses a lot of weight, plus no one tole me not to diet on this med. Don't diet on this med you lose weight very quickly with out it. Yesterday, when I picked it up at the drugstore it was now in generic form. I'm not happy about that. We shall see. (The Neuro) said this should be the first med to treat long term headaches. I also get breakthrough headaches and take migranal wonderful med comes in viles that you have to prime. insurance will only allow me 8 a month.( The Neuro/pots spec said don't use this all the time only when real bad or you'll get rebound headaches.) In the winter it's really hard to prime and use this med in the summer it's fine. You just can't you it every day and don't ever use it if they put you on flagyl and you have bowel infections. They interact and sometimes they forget to tell you. Nothing helps these headaches. Except Really Hydrating yourself and a narcotic at low doses and I mean baby doses. Tylenol and codeine,( the Neuro said this is what you have to use to have any quality of life when they are so bad) early evening and at bed or one at day if your at a family function and that is the only way you can be there as you head hurts so bad. Even then sometimes, the pain won't go away. Then it's under the sheets, no lights curled up with my best friend, my dog. Medication is all about making choices to have a better quality of life. Taking certain one means no driving or reserved for just bedtime. Your whole life changes and you have to think all around how you feel and what you need to do to make it through the day. ~I keep thinking of that song: "O-o-h child things are gonna get easier" by stan vincent Blessings and Love to all~

headaches so bad! coat hanger pain as well!

i know all too well what you mean as i go though going to my appointments alone and I have so many a week my head spins. now they are all by cab a shared cab so the ride is very long tiring and now makes me nauseas. by the time i'm back home i crawl back in bed. all appointment turn into a all day exhausting affair alone. everything is complicated, and if your bright enough to document and type, fill out your own forms watch out as you might just be able to work. i can't fill anything out anymore and typing here is a constant struggle till my dragon voice to text is fixed next week. i starting to get so confused ordering my scripts, constant rechecking that they didn't overdose like before or short change me with pills. and yesterday my topamax went generic. even that upset me. setting up all my cabs ride even confuses the person i speak too and then she feels sorry for me. Living alone stinks, i need a full time secretary, nurse's aide, house keeper, companion, and now i just gone to the doc and he thought i had gotten better, but i'm worse. it happened again to me yesterday in front of my daughter and granddaughter age 4 i couldn't breathe after trying to dig up a simple plant from my garden. my granddaughter went to get water and salt and i still could not breath she forced me to drink and then GOD LOVE HER, she started pouring salt down my shirt and in my hair and i tried to make her stop and she said no you need it. i'm still trying to recover it's like a tornado hits my body on a daily basis, only the red cross can't give me any help. it's hard for all of us but being alone is the worst of all. i fell last week and i'm feeling like i've been run over by a truck. i pray that there i a miracle out there for all of us. blessings and love~ bellamia~

LOL! Maybe we'll meet on a shelf in a glass jar one day as my brain should be kept also. Till then ENJOY! BellaMia~

has anyone read that a sleep apena machine is suppose to help our brains from getting worse? i read an article and can't find it for my sleep doc as i did not have sleep apena but struggle with nightly sleep. i pray there is an answer for preserving our minds. good luck shimoda, just have in advance what you want to say for an ice breaker. i have to stay away from words i can't pronounce and never could, luckily i'm funny(good sense of humor). cash in on anything that makes you interesting. people don't reject me when i tell the truth, in fact we have more fun as I'm laughing at myself. never let that hold you back from trying tp meet some one. count your blessings that your able to get out and meet them. these day most i meet are on line or in the hospital. also think about what you're going to say, then speak. BellaMia~

thanks flop i believe my dr notes that i get a lot of red mottled skin, so i just assumed that was the pooling areas. i just thought i had rashes at first., as I'm always itchy too. we are very interesting poty people! BellaMia~

poohbear, help me understand, so is the red areas of your body where the blood is pooling? thanks for your help! BellaMia~

Good luck with this test. I was just wondering what was the reason that the doc ordered it as we all have low blood volume? Were you having specific symptoms that made your doc order this test? I'm just always searching for a reason why it's so much harder to breathe these days. Thanks BellaMia~

It really doesn't matter what we look like, as recently I had to teach this lesson to my little one when she was 3. we were all out shopping and she though she saw the, "wicked witch from the wizard of oz." She made this known and loud and clear as she hide under the clothes rack. The woman caught on and it was very embarrassing. long story made short, it was time for a grandmother to sit on the floor and explain that you, "don't judge a book by it's cover", at a 3 year old level. I won't go through the whole story, but looks aren't the most important thing to me. Some of the most beautiful people I know are average looking and then by the time I get to know them I realize just how beautiful they are. Last week she asked me to turn around as I was in the front of the car. " i want you to see you face, i forgot what it looks like." "I want to see if it's all squished up and you neck is hanging and your old." I turned and looked at her and she said, "On I forget, your OK." I laughed and looked at her mom and "said, " I won't always be this way, we better tell her now," and laughed, laughed, and thought about the day in the store with and the teachable moment that beauty isn't everything. Regardless if we are sick or not we all change are appearance. Some for better some worse. I say it's all in the genes for the most part and best not to focus on it. Gravity catches up with most of us eventually, unless you have lots of money and can have repairs done. LOL! these were just some after thought. I'm trying to grow old gracefully with my pots. now back to try to garden.

people tell me i look great and that's flattering. i have and still do look 10 years younger than my age. i say it all depends on the day, some days i'm so dehydrated by the time I get to the hospital I look like crap. when I'm wheeled out they say i look all perked up. Plus i'm allowed to sleep the day away there. have people wait on me, bring me two meals, no wonder i look better. i live alone so this is a treat. they really think i'd look better going 2 days but i'm running out of veins. suddenly a pick line is starting to sound nice to me. Oh, i walk with a crutch and I asking for my own wheelchair this week. (the crutch is a conversation ice breaker, as everyone asks what did you do to your leg? so i meet lots of people educate them. the wheelchair will make me feel old appearance wise)

Radha, You said it perfect for me mornings are a nightmare, only I don't get hyper. I lay there waiting till I think I can stand. Some days it takes hours before I can drag my self to the kitchen. I need to really setup a cooler by my bed with breakfast supplies. I now keep all my meds in bed with me and then stager out to do what has to be do next. My laptop is right beside with with an alarm on it and a back up alarm across the room for days that I have to up out at the door for the cab. It is so hard, I must shower the night before and sleep in clean clothes if going anywhere. I push myself to do anything at all without losing my breathe. I quess I have to get rid of most of my belongings and simplify my life, which is very hard as I'm a collector. I have so much to do and I'm so fatigued. The mid to late afternoon the migraine starts and I must lay down and bed is my choice to be. I have been told to stay out of bed as much as possible so I won't sleep in the day as I have fragmented sleep at night. Sleep studies show I wake about 30 times a night and never really reach rem sleep. I refused the meds as when on them they make me fat and take away all my creativity, dull my mind. the past few days I have been so extra dizzy I can't do anything at all. had plans to crawl around my yard and garden this weekend. I ended up having friends drop over and feeding them and now I'm burnt out. Late night and wee mornings if I get out of bed is scary, falls need bathroom, famished and BP is low again. My doc says, the high BP will come from lack of sleep. My lows are when I'm standing. I take my BP standing as that's what I''m most worried about, but now I'm going to do both sitting and standing. Sophie, I hope your not getting Shy-drager syndrome. I wish us all well, while searching for that magical potion that will make us all better so we can get back to living again.

lol! thats funny, I think that's what I have. I'm too tied to climb over the stairs after taking my night meds, as I turn into a weeble soon. Oh please, oh please, I hope I did not throw 2 of them away.

Interesting wonder if mine is still hanging around from when I hurt my back years ago. I always feel better in tight things. stretch jeans, speedo leggings, long sleeve shirts, and bathing suits under clothes (lyric spandex). Maybe that's why I was able to teach water aerobics for as long as I did, as I wore all of the above in the pool. (Minus the jeans)

please forgive me, as I realize many people can't get the help they need and this make me feel very sad. I also see and started treating myself at first with chocolate for the high BP and my doc went along with me saying I could use licorice would be another treatment. I used cinnamon also it did help, but I needed more help then this regiment could provide and the chocolate also was thought to make me more tachy. I did these things because I was allergic to the meds bb and hated how I felt in general. What I was afraid of, is I see a younger population of people who refuse to get medical attention for anything these days and they wait until it's too late. Not for POTS for anything even an ear infection. I know I have been tested for congested heart failure so many times and the latest this week. I do believe that is what my dad hid from the family and it make so soooooo angry that he died doing what he loved the most in the world of a sudden heart attack still young. I miss him so very much and I have no access to that important medical information as he hated to go to the doctor. I sincerely hope each and everyone of you the best of luck in your search for a doctor and I'll share anything I can here. Remember we are all just hanging by a thread my doctor told me when his young 29 year old lab tech at he office who I loved dearly, died last year in a tragic car accident. We all need to try and enjoy what we can in each and every day the best we can. May we all enjoy what we can this weekend. This weekend I honor my dad who fought for this country. I have no way of getting to the cemetery to pay a visit, although he lives in my heart always I'm very sad this weekend thinking of him. Blessings BellaMia~

i've had time to rethink what i said earlier today, " to me I consider it life threatening." my dad died of a heart attack and something else was wrong with his heart that he hid from our family. HE WAS POPPING NITRO ALL THE TIME, and the bb he was on made my MOST WONDERFUL DAD TURN SO irritable. i remember when i was started on my first bb i thought i was going to jump out of my skin. my dad's mom was 54 when she died of an enlarged heart. why? why? why? i ask the doctor as i was dx at 54 and at 55 was told if we don't stop your heart from working like this it will just enlarge and without an intervention you will die. so, i take all of this very serious. a lot of damage has already been done as i've been treated like a anxious person in the past as my heart was beating out of control. i've been berated in er's by high an almighty non pots cardio doc telling me they were highly trained to see that i was a hyperventilater. i'm really mad tonight thinking about my life in review. i do live somewhere between congestive heart failure, ms, and lupus. my ana is so high but we still can't figure out what it is. lupus is what we keep checking for along with strange things like von willand brand disease as i'm a bleeder also. i'm tired of the roller coaster ride the recently i decided to go with the flow, make the best of it and hope we can change the medical community. we all need to come up with a fact sheet that we carry in our bags with our med info explaining pots to these er docs, family, friends all in case of an accident or emergency. do we already have one here? if not let us begin and educate and not be humiliated any more! we need to take control over the things we can and help prevents ourselves and others from what we have been through. I'm starting to fall asleep so I'll stop now and have to edit later. my cup of energy has run out of energy for the day. BLESSINGS to all~

so is this a self dx. and you don't take natural remedies or treatments? because you know what will happen to your heart if you really have pots and it's left untreated?

if you don't mind, what do you have and how bad? what do you take and how much does it cost you a month? thanks, BellaMia~

Bella, I have a feeling that I'm probably not suited for any of the betas. So, may I ask when you switched did you give it a few weeks or wait a few days then switched? My dr. isn't much help and it's so frustrating. I'm still on the propranolol and not enjoying it at all. So sorry that you have the flu. I hope you are feeling better. Thank you again for your warm wishes. Rene Hi Sweet Rene, I've been thinking about you as you have been going through a difficult time, I'm praying for you girl. I had to stop cold turkey as I was having allergic reactions. exzema and itching, cough, flare in my rynauds, and memory problems. I went right to carta and had a problem with that and had to go to cartia xt. I'm my doctor's most challenging patient. which is hard for me, he understands but i sometimes feel other people have the attitude like there's always something and that really hurts my feelings. I have a allergy list a mile long, i never asked to have this condition. thanks for asking about my flu, they decided i didn't have it and were more concerned that my hr was so high and i couldn't breathe and have been so breathless. they hydrated me x rayed me and if they could have fed me maybe i would have pooped for them as that's what they wanted a sample of. they pulled my iv out of me and said i could go home. i was so angry, i told them i had to come back in the morning for 2 more bags. by morning i was so dry they blew out 2 veins before they could get in that's how dry they left me. long story short. i was treated rudely, left in a hall all alone in a wheelchair. i wasn't able to reach my family on the phone, no one would push me as i don't have a chair of my own and i need one. well i was so mad, i pushed my self all the way to the main lobby where a friend who works there called a cab for me. i learned a lesson, it's time for my own wheelchair. i need to be able to move around and in the chair. I found out I was able to. i'll see my doctor next week and we'll talk about wheels. You take care and stay well my friend.

I hear you loud and clear! I don't care what any one says, life really stinks! someones else gets a hangnail and their world falls apart. I'm sick and tired of being there for everyone else. It's like I've made everything up. I get more compassion from strangers than people I know. My doc told me to tell my family to tell their docs, no one will and i know they have symptoms of it. I'm worried about my kids and grandchildren as they are showing signs also and no one will tell the family docs. anyone have this going on also? Denial. I give up! i feel like i must be an embarrassment to everyone or they think it's not real.

my pupils are different sizes slightly and have a retinal hole that i've put on the back burner for 6 years. i need to call and make appoints tomorrow. Thanks for reminding me. my eyes sight changes from day to day. so i just buy every cute pair of glasses in different strengths so i can see to read. i'll ask about this one. thank you for one more possible dx. LOL! only joking! BellaMia~

hi, i know how frustrating each and every test we have done is. Along with each and every visit to ER's as I just went though a frustrating experience myself. i have to think of ways to turn my anger around as it's not worth it anymore. i now make action plans. i think a good thing to ask for would be a 24 hour blood pressure cuff test and you give it it's money's worth. it's like a tilt table test on the move. i would also find out this ; where will your insurance pay for it? as all of mine have been covered when i had them outpatient at a hospital that did this procedure. recently my own cardio office got their own which was either faulty or the nurse didn't know how to use it. i wasn't charged the 1st time and sent back to the hospital. next time i noticed the #'s weren't matching my machine and we had just calibrated my machine. i noticed a bill from my insurance company saying they don't cover that service. if i get a bill, i'll discuss it and tell them i can't and won't pay. AND IN THE FUTURE send me to the hospital where this is covered. or if not if you have your own BP monitor ( I use this Omeron BP with software to print out your readings ) it has 2 modes you could use 1 mode for sitting and 2 for standing and print out the readings for each visit. I usually do standing. Sometimes the PS will request sitting, then standing, or a certain time of day . But they say send me a PDF file whenever you need to. give it a good days workout every 1/2 hour and at night also seeing that most of us don't sleep. at night they set it for every hour, but i used to hit the button when i would get up in the night as that's when i would be falling. My doc told me this was the only monitor that ran closest to true. In fact when i first started with him i had an old finger one by that co. and he said, " i don't trust finger cuffs." took my reading and he shook his head and said, "i don't believe it, but it must be the name." the thing was like 20 years old. the motor burned out in 2 months. LOL! So, you show him and i hope the weight loss was a good thing. Some docs are just jerks, we have to take our anger and turn it around lose our ego and teach them. after all, that's how they learn. I'm sorry that happened to you and now teach your doctor. next time maybe he or she might listen or treat the next person like you kinder all because of you. maybe you will have taught this doc more information. Good Luck! Blessings, BellaMia

i used to love a nice drink, that's all it took one went right to my head. my doc that dx, the neuropathy told me never to drink alcohol because in some people alcohol makes makes neuropathy worse. also, in some people alcohol is poison and just a small amount can kill them. he felt that even though (this was pre-pots ) i drank socially and very seldom that it was poison to me. i haven't drank sense. The funny part is i realize i just like the fancy glass. i put my Gatorade in a variety of different wine and Margaretta glasses and have just as much fun making up funny names for my drinks. LOL!

Hello All! Where do I start,first I found out I had cubital tunnel numbness and tingling in my left hand and fingers but the pinky and the ring finger didn't get better. then and Emg told us more info I had peripheral neuropathy in my hands , arms, feet. and legs. this was all pre POTS DX, but it was something so I was getting closer. this doc had no bedside manner, didn't listen to me when I told him the meds made me like a drunk and refused to listed to me and I refused to take them when I took a terrible fall hurting myself really bad. I was thankful that I had new information to work with, but decided to move on to someone I could work with. I should send him a pamphlet, "Would you know this person has POTS?" I should educate him now. Cubital tunnel required a brace to wear and I still need it when the symptoms come right back. If you have that get your doc to write a script for a brace as if not you need surgery. It's a cousin to carpal tunnel which I have in my right hand and that has numbness and pain. I also have Rynaud's disease, where my hands, feet, and tip of nose get freezing cold when exposed to cold and on certain meds. the BB made this condition so severely worse along with many other symptoms that I to get off them. Sometimes my nose will feel so strange when cold it will feel like felt. Topamax, also has this as a side effects numbness and tingling in hands and feet which, I take for headaches. I was told that was to go away. I've been on that for many years. When I first took that med It was really weird. I hope that is helpful. BellaMia~