tinkerbella

I KNOW i had this as a child always had to lay down right after eating a meal. anemic all the time, fell for no reason at all, causing breaks, sprains and always had to sit down. Breathing problems when sick, thought I would die with not enough breath. when i got the flu i got it the worse always, fevers would hallucinate, bruise easily, never find my words and be comical by playing charades to get other to help me, had ectopic preg.almost died on table, lost large amount of blood. several surgeries show unusual fast heartbeat while under.(just found that note) years later 3 babies large loss of fluids and weight loss, nausea can't stay hydrated while carrying babies. Have them 1,2,3 because they believe I may never have any since all the damage done. Large loss of blood from first born. I chose natural childbirth, and all the way to the end i'm bleeding everywhere. I think this is normal as I'm a kid. Then the Dr. has me have a spinal baby forceps delivered. I get the worst spinal headache ever! More vomiting and headache stays for days. Iwent home with the worse migraine, so bad that when i look at the picture of the nurse wheeling me out holding my baby out i cringe thinking about it. Nursed 3 babies last one for long time. knew I had ADD, always bleed way too much each month with periods. Irritable bowel, bladder issues all seemed neuro. Noticed i would hurt my feet and not know it same with hands. Began to have weakness and headaches so bad i couldn't stop crying. MisDx. anxiety and depression. would zone out or space out, back then when you were depressed you were checked for thyriod. some how mine was missed. a scan was done with iodine and i needed thyroid meds. AFTER THAT I became allergic to iodine, almost every antibiotic. started having episodes of chest pain, kept thinking I had lupus high ana, i was frustrated as no one knew what was wrong with me. Soon I WAS the girl allergic to everything. thirsty all the time but lips always dry. hungry all the time, and would get shaky without food if with held too long. i felt like i had ms or lupus asthma, then i got the flu or a virus sooooooo bad i ended up in th hospital for 6 days after being sick for 4 at home. GOT DX DEC 07. The rest of my story is on my about me page, right now my nerves are jumping in my arm and I need to put my cubital tunnel brace on. sorry got to take care of me right now, can finish later. i've been very blessed since that day. i share and edit later as my pots is acting up as I type. thanks for understanding,

Dizzy Dame, hi funny i call my self your name all the time. thanks for the name to what has been happening to me for years. today which also happens often my left eye lids (top/bottom) is twitching like crazy. today is worse than ever though. it's always my left side and always feels like a stroke complete with the facial droop. caught it on camera for my doc. does this also happen?i also lose pieces of vision. take 200 topamax 2 x a day migranal i get 8 a month once you open and prime it it's only good for the day *vicodin *ultram/Ibprofen *my regular pain meds don't touch the pain

Was that 25 with shipping? amazom.com has as nice video on it. cost 20 more free shipping. i want it. i got to get one.

Thanks for the info I've been looking for one.

i'm so sorry for you, try sitting in a comfortable reclining chair or laying down to try meditating your headache away. You must first take some deep breaths and picture your headache as a color in your head. Choose a relaxing color that you love. once you see this color have this color become a liquid and begin to see it start draining down from your head, slowly move it to your neck doing deep breathing all the time. then keep breathing and have the liquid start draining down your arms. Feel that the liquid is getter warm as it moves from your head to each other area of your body. soon move the now liquid headache move to you elbows and feel again the heat of the warm liquid. Take a moment to to remember again to breathe deeply and then push the headache down into your hands your palms will be warm now and if any of you have cold hand this will feel very good right now enjoy this feeling especially if you have raynauds. For the rest of you who need to totally need to set this headache free you will now picture your hands as straws or funnels. you pic which visions works best for you feel you fingers get very warm as you are still breathing. This also feels so relaxing that you may also feel sleepy. Now, Your are about to release your liquid, colored, headache right out of your body. Make sure you are sitting and feel the headache at the very tips of your fingers and see the color of the fluid you as you are now going to shake your hands and watch the now liquid headache leave your body for once and all. Continue to shake till you no longer feel any pain. Be creative and set your inner child free and pretend your are splatter painting and picture your delightful piece of artwork you have just made is now ready for hanging.You should feel very relaxed and headache free now. Maybe, you have even fallen asleep. I hope this helps. I have helped my children, myself and many others this way. I don't know if I have mentioned this in another post or not but I have bought a sound machine and one of the sounds is a heartbeat. I caught the tail end of UK TV show where Dr. found that by playing the sound of a normal heartbeat they found that people could get their BP and HR back in control. I 've noticed my headaches have not really been happening since playing that heartbeat all the time. I leave it on for my dog also he's much calmer also. Others come in and feel real relaxed and want to go to sleep, some don't like it. it can't hurt now can it? Every time a new med is introduced the migraine start. Salt overloading, allergies dry eyes and sensitiveness to everything around me that I have no control of. I take topamax migrinal when they are so bad I can't stand then and can't make them go away. I was told if I use that every time I'll have rebound headaches and I don't want that. I have pain killers for all the other aches and pain and for times when I just have to have a qualitly of life to be with my family to make memories and fake it till I make it.

Hi, I wanted to tell you that last night my good friends had me over as they do every week to watch a movie together. Little did I know the movie would be, "Marley and Me." We are all in are mid 50's, a married couple and me. They just lost one of their dogs Christmas week. They had read the book, I had not. We were all crying. I noticed I do not know how to cry quietly or with out sobbing and thought it must be the breathing thing. The loss of your loved pet will be brought up in things like this movie if you haven't seen it, don't see this movie right now. Take care, it brought it a lot of emotional mud for me to process.

Hi I was born in September 1953 and I really believe something has been wrong with me my whole life. If you read my about me page it's tells most of it as today, I have no energy today to tell it all. Dx in Dec 97 with Pots. My quality of life right now is not ideal, but through the Grace of God I'm embracing this with all my heart and trying to make the best of each and every day.

I'm so sorry you feel this way as I can relate. The ears drove me nuts for years, infections after infection, till I was put on thyroid med, now when they are hurting I'm reminded it's allergy season. They also recheck the thyroid levels. I need to buy a battery operated fan for the hot sweats as the doc said I'm getting a double whammy due to menopause. I'm flaring so bad right now. I feel best a few days after having iv hydration at the hospital each week. I meant to ask for another day when I saw the doctor last week, but now my back has bulging disc and tears from falling at night from low BP. I need to drink Gatorade by the gallons and due to the cost I can't always. Sometimes I buy SunnyD and add water in in half and half. That way I get salt water and some other stuff too. With this economy I try to cut and save here and there. Making others understand your limits is helpful, as today I found on youtube some video that I plan to send to family about Pots as mine is difficult. I hope those will help them understand. Keeping a journal so you can see if there are any triggers to your flares might be helful, along with just releasing your thoughts out and onto paper can be a stress reliever in it's self. Learning to say no when others push you beyond your limits. Always be prepared with cold packs and heat for all those aches and pains especially coat hanger pain. The one thing that drives me crazy is the hissing sound my ears now. Hope this helps, got to run. wishing you the best.

Hi, I've had to be on allergy 24/7 for the past 15 years, standing is a challenge for me. I don't know what mcad is. I take Allerga 2 x's a day and Bennadryl for breakthrough allergies. Could you educate me? Thanks.

Glad you got good news! Take care!

Hi mack's mom was nice to read a bit about your dog. Hearing their names and if you changed them. My pooch came with the name Pheno. I adopted him and everyone asked me did he came from a drug dealer? No, that was not the case, the woman had a dog with that name when she was a little girl and she had lived in another country. Still it got easier for me just to change his name, to Phenix. I feel our pets pick us, we really don't pick them. They come into our lives, teaching us many lessons that we could never learn from another human being. Was thinking about you once again tonight as today, I had to explain to my granddaughter who is 4 1/2 that my last dog that she knew was buried under the statue of a dog in the garden in the backyard. She keeps talking about my old dog, partly I think because the new one looks like the old one. She didn't believe me, questioned me, wanted me to show her, but I had to teach her a another lesson about death even though my sweet little dog has been gone for 3 years now. She really knew my dog was there, she had asked me about the statue many months earlier and tears came to her eyes and she told me she didn't ever want me to die cause she loved me so much and she freely expressed her fear. I always tell her she has nothing to worry about, that every time I'm in the hospital it's making me stronger to play with her. I hope you and your family are doing better today. Just know your sweet dog will come into your daily conversations for years. One day you'll be able to talk without the pain that you feel right now.

I'm glad you're ok. Always wear a life jacket as a safety device if you want to swim. If I hadn't been working in a pool teaching water exercise, I never would have gotten this dx. I used to teach 3 classes a day, in between teaching preschool and other things. While overexerting myself, I would have to get out of the pool and hold on to the bars of the ladder for dear life drink so much water, try to catch my breath and pray I would not pass out. None of of clients had to do this, I just believed I worked harder than any of them. This was the one piece of info that made my doctor listen to me after my stress test came back suggesting congestive heart failure/ ? chest muscle weakness. I have been so blessed in a day where most people say docs won't listen to them, I have been lucky. The process has been a long one, but here I am. Take care all!

All hormones always make my Pots worse. Wish I had known I had pots years ago, as looking back I can see things clearly now and my relationship to them. The gyn's who knew nothing about how badly hormones affected my pots tried to put to the IUD you spoke about in. My pc would not allow, and said everyone she knew acted crazy with them in and that was the last thing I needed as they were already using that med on me to stop abnormal post menopausal bleeding and it was making my pots so bad. I had to be put in the hospital several times. No more hormones for me. Good luck to all of us woman.

GOOD LUCK. Stuffy rooms bring, hand fan, battery operated, hand held, and lots of Gatorade. wear layers of clothes. If your appoint is in a hospital have them wheel chair you to your appointment. Conserve you energy as much as you can, we have to do what were we have to do even if we get funny looks from others, I just try to educate them when they ask silly questions about my crutch or that blank stare comes over my face. Sometimes even a hard candy in your mouth with a strong flavor helps to distract your mind.

Sounds like you could use a great (((((BIG HUG))))) firewatcher. We did just go through a full moon with the effects lasting a fews days before and after. I always notice life gets full of drama for me that you'd think I was making it up at times. I hope next week is better for you. Do something nice for you this weekend. I wouldn't doubt if mercury is retrograde now the way things have been and communication is off. I must check my charts. Take care.

Thanks Melissa, I got mine in BOSTON, MA off the list and love her. I'll search up the meds & wanted to say saw your blog. What a GREAT JOB you did! You're an amazing person.

Hi there, I'm a new here in the posting and getting into things. I was wondering where is this Dr. located as I'm hearing about him a lot in posts? I take MESTINON LIQUID and the tablet form is called PYRIDOSTIGMINE 60 mg tabs. There are a few things you should know about this medication. When I went back one week later my skin looked like I had been to a tanning bed and even the doctor mention that all his patients on it has the pyridostigmine glow. It causes hyper pigmentation. Then another week went by and I mentioned I was having my irritable bowel act up so bad that I won't go into the details. Then he said, "I never knew you had that problem and that is part of POTS." I then started to get very distended and my belly swelled so that I looked 9 months pregnant. Pain was so bad that at hydration I had a near black out in the bathroom that scared me silly. BP was so high, belly pain so bad they admitted me. Admission showed, near bowel obstruction. Family all away and they are talking surgery on a weekend. Praise the Lord that I didn't need it after all, but was sent home several days later with them not knowing what was going on. Oh, I was also been treated for abnormal vaginal bleeding and on a cancer med that exacerbated my POTS. Hormones and I do not mix, but back to the story. I went home and started to take my meds as usual when I looked at the pyridostigmine which is mestinon only in a different form and I realized the drug store was giving me the wrong doseage. I called the and told them, they said get to the ER asap and call posion control. I had been telling everyone I felt like I was slowly dying all that summer. I think I was I was being poisoned. My point is my brain gets foggy on these meds always double check what dose they write on everything. Recheck with what your doctor notes you take home say. ????? everything it's your life. It took all summer for my body to readjust to to the mess up from such a large dose of med to the normal dose. I have bad side effects still but, I don't want a pace maker. I started and I'm still on clonidine for the first drug of choice. Did your Dr. try that? I only mention that as I never slept until I tried that but, I can only take 1/2 of a pill at night and morning. It's not even a therapeutic dose. Also I never felt so calm in my life before, hence the dx of anxiety and asthma were all wrong before realizing it's was really pots. I try to stay away from melatonin as I was told if you have an auto immune disease it will bring it out, and I have a high ANA already. I try to get at last 1/2 hour of sunshine to get it naturally. Maybe you and your partner can find a time of day when you are not tired to be to spark up your relationship. If you have a good man work something out as good men are hard to come by. If you see one let me know. I wish you bunches of luck on the new med. I'm my doctor's most challenging patient as he puts it. God bless my Cardio, and my Neuro. And especially my PC who put up with me all these years and now has dx 4 more cases of POTS since me, I'm sure she thought I was nuts. LOL! wishing you the very best!

Sending you the best, you are blessed to have a good man who will change his schedule around to be with you. I already posted what mine did to me in another post. Try to make the best of it. Treat yourself to your favorite magazines, buy fun cards and write to people, draw, knit, listen to pod casts or music, do anything fun at this time to distract yourself. I'll bet that sweet hubby of your's will do it with you. You'll be OK, I'm sending you a nice white light of protection to watch over you and may everything turn out great. Hope to hear how you made out. Take care~

Maxine, I just wanted to let you know I was thinking about you this afternoon. I hope you're spirits are lifted today. Even though I'm new posting here I can feel the that people really care for each other. I feel blessed that I finally figured out how to post and started posting to others who can relate to me. When I first joined I used to peek in, read and get out quick, and cry. I thought someone had been looking into my windows and writing about me. I was scared silly. Now I'm ready to take charge and control of as much as I'm able to, one painful step, lots of breaths, and many heart beats at a time. GOOD LUCK at your appointment. We have to do whatever helps us make our life less complicated. You'll be in my thoughts and prayers.

Julie, Thanks for your healing thoughts being sent my way. This special baby was a gift to me when I would feel down I would I would think of her and her tiny body knowing how drained I am from weekly hospital infusions, Dr. appoints, and just maintaining my life. I didn't have it so bad when I compared my life what she would be going through. I had been blessed, very blessed. I also donated my time over the past year to watch her twin sister while I laid on the floor at her aunt's house and played with her in between my crazy schedule. There were times that I became so ill that I couldn't be there. What a special gift both babies were for me as the baby's aunt, my dear friend also drove me into the city to see my specialist for POTS. And the one twin I got to be with made me feel so loved and needed when I felt i had no purpose in my life. All losses are painful, our pets become like children. Many people don't understand it when we continue to grieve for a pet. I say they are the ones who have never really opened their hearts to the unconditional love of a pet. Anyway, I hope may be you can post a picture of your dog for us to see. I just said another prayer for you and Osa and that you can know in your heart that you came into each other's lives for a reason. Think about that, and what your time together was all about. I need to try to stand up for the day. Healing thoughts right back at you. may you enjoy this day to the fullest!

Good Evening, I've had flares for years not ever really knowing what was really wrong with me till about 1 1/2 years ago. Now, I'm sad as right now I'm living alone. Had to give up my bedroom upstairs, living in a porch downstairs. I had to break it off with the man I loved for the past 7 years cause he left me in an ER when they thought I had blood clots in my lungs. He left to go get drunk and I was all alone. Hello! Goodbye..... Have a house and can't afford to do any work to it right now. I see myself losing control of my body more and more each month. I often think I'm trapped in someone's else's body like my mom's who is 89. I'm blessed with wonderful caretakers, have children, and two grand babies who all I adore. Sadly, I lack family support, they all can't see what is really wrong with me and it hurts almost as much as the physical pain I live in. I walk with a crutch now, sick of falling. my granddaughter when she was 3 started acting out my illness as no one would talk about it. She started to pretend passing out everywhere, she started to want salt water so her mom made her the saltiest glassful so she would hate it and she took a sip and said she loved it. When she plays Dr. she puts on heart monitors and knows that some blink all night long, and she's even rubbed salt into my skin thinking it would save me. In her tiny 3 year old voice she asked me, "Nannie are you going to die?" "Nannie, if you are I'm going to I'm going to miss you so very much cause I love you so very much Nannie, I really do." She amazes me, that she can tap right into my soul and knows that I need my family to talk about what is wrong so she acts it out to get there attention. Still no one talks. I try to make everything that happens to me fun or a joke. The hospital is the Spa and where I get the best treatment and have my support. You won't find my family there. Never, nada, no way! What's all this about I'm sure your thinking? It's about love, we need love and support to help us get better. Without it I think that's when we start to crumble and fall apart more and more. Like a newborn baby if left alone can die from lack of touch from it's mother. The same is true for us, sadly many of us can't meet anyone anymore being house bond. But we crave human touch, support and unconditional love. I believe those you us who have that get somewhat better and those who are alone and who have many other illness along with their Dysautonomia. Like holding onto an helium filled balloon and letting go that is what happens. Sadly many of of us become helium balloons and when the burden is too much for others to bear the family just lets go and we float away and flare... The lucky ones have a good family support or make a new family out there through support groups. hospitals, faith in your higher power and friends but we can't get better with out love and support! Doing everything alone is tiring it's self, I need a full time sectary just to keep all the insurance stuff straight. Well I just used up all my energy for the day. I hope this makes sense to all of you.

Well said everyone, I'd hit the print button. I always bring a list of notes and last time I brought the letter I had emailed her with more thoughts I thought of afterwards. She actually liked it as it saved us both time. Do it, you'll be glad you did! Good Luck, and I'll buy us a round of v8 juice as it's time for happy hour here. LOL!

mornings are the worst since being put on meds. I hate early morning appointments, so are unavoidable. I have to shower the night before, pack my bags sleep all dressed as the cab comes so early for my hospital infusions. I set the alarm for 5 just so by 6 thirty I'll be able to try to get out of bed. I's like a nightmare on hospital days. I pretend I'm going to a SPA, so then it's becomes fun. But honestly, most days I open my eyes, roll over grab a thyroid pill drink water and pass out. If the water is gone when I wake I know I took the pill. Then there are days I can't stand till 10 or later. When I stand it hurts to walk so bad.

I used to take Florinef, but it was spiking my BP really high. I've gone from one extreme to the other. but get low evening, night, early morning and if i can't get out of bed. I knew I had a problem for years before dx. when I would wake fall see flashing lights, would be written off as side effects for other meds. I also would salt overload in morning before going back on these meds. the thing that happens to me is the hungry horrors in the middle of the night. I'm suppose to be checking my blood sugar levels then but when my BP is low, I'm on auto mode to the fridge and BP MONITOR. I believe there's a relationship between the two. My new little song is, "If I Only Had A Brain." LOL, it's really not funny. Some of my friends in menopause are just as bad so what is what? I just have to joke about it and write everything down these days, and play charades with people when I'm having a conversation. I'm quite comical. the life of a party.