StaceyYount

Well said and I echo and return the thanks of having you all here to be a support to and take support from. I wish you many many wonderful things this Thanksgiving and in the years to come. Stacey

Hey Gena, The things you experience I do too and only until recently did i realize that my POTS was (a or e)ffecting my movie and scary watching ability. I have never had the cathecolamine test but one cardiologist dxd me with the hyperadregenic POTS. But i don't know I too am going ot look into it. Hey Katherine would you send me that article too please. If I need to do something e-mail me! It is all so confusing cause just wehn you think you got it handled it says haha! Stacey :-)

Hi and welcome, I know there are several women on here who got POTS post-partum adn hopefully they will chime in soon. But the dizziness you experienced then may have been due to POTS. Though of course I cannot really say. I am sorry for all you have been through. From what you have listed it does seem very POTS like, I have all the symptoms you. Like the others said you need to find the right doctor and the right meds to help. We are a good bunch and will help when we can! Stacey :-)

Hi, I was awake at 3 am too and I should have come on the board we could have chatted! I just wanted you to know that I am here I understand and you are not alone. Not really. We are not there in body but most definitely in spirit! And I find that even when I do vent on the site you are right it does not help right away. But as you read the responses it helps and then usually for me the next day I have recharged for the fight of each day! It is hard to be alone when you are so alone I know! I hear you and I understand. You are not alone and somehow someway we are all going to get through this. If not on our feet then certainly at our fingertips! ( I know I put that in another post but I just thought of it and love it so you guys maybe seeing g it a lot) Maybe I should add it to my signature! Hugs and wishing you a better day to day! Stacey:-)

Tis the season I think for a lot of us to go through this I just can't take anymore. Today is one of those days for me. So I so understand how you feel. I send you all the strength I can and on days like this I go minute to minute if I have too. I come on here and scream and cry, I email other Potsies and they hear my pain and say I understand. So I want to say I understand and I am here for you too. You are not alone and somehow someway we are all going to get through this. If not on our feet then certainly at our fingertips! Hugs and wishing you a better day to day! Stacey:-)

Hi everyone, Gee you miss a few days and your topic is on the next page.. heehee Anyway we decided to get a copy of my test results. For you newbies always alwasy do this. Anyway it showed that my RDW was really high. Now that isn't a big marker but as we looked things up on the internet it is a flag for pernicious anemia. And looking further into it the symptoms of pernicious anemia include rapid heart rate and breathlessness among other things. So I have started on a B12 suplement and wednesday whne I go back to see the traitor we are going to ask him aobut it. Always check your tests and always get copies. I can't tell you how many times we have found things they missed or wrong things in doctors notes.And for you HPotter fans remember Constant Vigilance when it comes to your medical records! Still freaking out about going to new doctor but since it seems dr. g may have missed this anemia maybe a new doctor is a good thing. Ok off to give my sage advice to all the new posts. HAHAHA! Thanks again for all your responses. Hope you are having a good day today! Stacey :-)

Thanks everyone! I had not thought of the antibiotics maybe making things worse. And though the test does not show it I have always thought that our bodies with this dysautonomia are extra sensitive to any new infection that comes a long. So regardless of tests I am going to think it is an infection and go from there. And I have never tried an iv but you know how sometimes something just sounds good to your body? Does that make sense? I will call the traitor today! Thank you! I have been to a rhuemotologist but she was not really interested and my doctor was so frustrated because he says I think you do have an autoimmune disorder but no one will help me treat it.Maybe a vasculitis? I do have petcahae (sp?) which no one has explained ( waht else is new) and the sed rate is consistently high.A few other tests from the rheumo came back a little off but again she did not seem interested in investigating. Maybe a new docotor will be a good thing. The higher BP is new for me but like I said I think this maybe an infection and my POTS flaring up worse again. I am off to my chinese doctor today and she what she has to say. SHe can usually ease the chest tightness and stop the coughing for a few days which is good. But I will ask about gettign an IV that is a great suggestion. Thank you all, it helps so much to have someone who knows and experiences the same things you do to have to come and ask. I appreciate it. Hello to everyone new, sorry you are here but glad to know you and thanks. Ask me anything too! We named the bear Sharma and my husband almost did not let her go but I will make him one too! Hope your days are ok! Thanks again! Stacey :-)

Thanks for the responses. And thank you about the teddy. The teddy did turn out cute! I love to crochet! Um I have had the thyroid tests done recently.Came back ok But my cortisol has run high on 3 different occasions but no one ever figured out why. Also my sed rate is always high but again they all just shrug their heads. My bp has also been running a bit higher than normal. My new doctor is gooooooooiiiiiiiiinnnnnnnnnnggggg to love seeing me the first time. heehe No new meds. Actually I am on no meds at this time to treat the POTS. Too sensitive to most things. I hate this phase can it go away now. waawaa! Sorry... I will see what the doc thinks about iv that might help. And maybe once the sinus infection is gone this will go too. Thanks again and hugs back to both of you!

Julie, Thank you. Since I know you are down too it means so much that you posted. I hope that we will find the magic pill and I hope that your days will be better soon. Thinking of you too! Stacey :-)

Hi, Question and a bit of a rant. Last week when I went to the traitor, I had to wait about an hour. Which of course would make me feel horrible but this was way worse. In the last 2 weeks or so my tachycardia and shortness of breath have gotten a lot worse. I though it was because the sinus infection I had was not gone. Was and am on antibiotics. And like many of you any infection makes me worse. But the thing is is that my tachy is worse sitting and laying down. At the chiros the other day laying down my hr was 113 and sitting up was 140 did not even take it standing I was to dizzy. I know some of you get this but htis is new for me, this long and this bad. I am also having chest pressure and pain but I thought was from coughing. Anyway while at dr.s my hr was just racing so much so that he noticed it. And everytime I tried to sit up I would almost faint. This is with feet up and everything. The longer I was up the worse it got. He was worried but said well you have been anemic and with the infection it could be waht could be causing it. Ok. So went to get bloodwork on thursday. Today I get call back everything looks fine. No infection no anemia! ARGHHHHHHHHHHHHHHHHHHHH!!!! And I am use to that but he had nothing else to say. ANd I am still feeling all those things. Can't sit up without the room going dark. What do I do now? Could this be something else? Is it just my POTS getting worse? I have felt that I was getting worse but again thought I was fighting an infection. Why can't this show up and have a clear answer and a clear fix. Frustrated beyond belief and don't know what to do next. Any help or suggestions? you would think after 10 years I would have this down but as we all know it constantly surprises us! Sorry if I rambled the brain fog is thick. Thanks! Stacey :-)

Hey guys, Sorry it took me so long ot get back. The visit to the traitor went bad and a hole opened up! But I do have a new name for a doctor and we will see. Here is a picture of the bear I crocheted for Dr. Galfo. I was going to give a bit of a rant but I think I will start a new topic. Thanks again for all your support it helped! Stacey :-)

Oh Morgan! I am so glad! I too once got the conversion disorder and I was not having the seizures you were. Some docotors don't want to investigate so they give up and label before they try. I am soooooooo glad your doctor is so supportive! Bless him and you keep fighting and you keep your sprirt and know you are sick and you are not alone! I applaud your doctor and give a big cheer for you! I would really do it but I might fall! heehee Stacey :-)

Thank you I think it helps more than I can say to know that there are people out in the world thinking of me and understand. I will continue to fight and who knows maybe this new doctor will have new ideas. I can hope. The small things in life are important and a long time ago I taught myself to be content in what I do have. Not to settle but be content until things get better. Also looking to far forward or to far back is always a way to bring on the tears. But more than anything this time 10 years is such a long time and I am having trouble getting over that. But I will and I will keep hope but that may be a bit away. I am crocheting a bear for Dr. Galfo and will send Katherine a picture to put on on our pictures page. I wanted to give him something to thank him for all he's done. Thanks for thinking of me and showing me I am not alone that helps. Your words give me strength! Stacey

Thank you all! It means the world to me to hear that you understand and you are offering support. I thank you and though there have been some tears , like now I will be ok. One minute at time until the minutes get better than I hour than 1 day until I am dancing! Ernie I think that when we finally get our magic pill ( That is what I hope for too!) it should work for all of us huh. One pill and it all goes away and then what a party we will have! Ok crying again so better stop but thank you and I will let you know how tuesday goes with the traitor! Stacey

It is 10 years ago today this illness brought me down and into my house and bed. And still 10 years later my world mainly exists of this room and this bed and trips to doctors. How can that be possible??????? I was not able to sleep because I have tried to not think about what 10 years really means but last night it hit me and I just can?t believe it. This can?t be a life and to be honest I am even to weak and to headachy and just to sick to really type and scream what I want to. I hate this, I hate feeling like crap all the time , I hate people not understanding, I hate the time I have lost, I hate not feeling like me, I hate pain (duh), I hate that I am here alone while everyone else is enjoying life. I hate that I can't even walk to the fornt door without almost fainiting on the poor delivery person. I hate that even going to sit outside makes me so tired I want to cry. I hate losing hope that this isn?t all my life will ever be and that this is all Jims life will ever be. I hate that he is so unhappy now and I hate that right now I have nothing that helps me really. And instead of getting better this year it has actually been a downhill slide. The thing that gets me more than anything is that though I have been much worse I still am not even back to how I was when I first got sick. And that was awful, after 10 years I am worse! IS this ever ever going to go away. One thing my wonderful husband did say was Well you have lost 10 years but at least you have survived through this illness for awhile I wasn't sure. And That is true. But I want a life back, I want to feel better, I want to be able to do things, I want people to stop feeling like they have to manipulate me to get me to do things because they don't understand that the days I feel like doing things I do and can but the days I can't I can't.I hate that I can't be a help to my sister and Mom with my dad still so sick and I hate that I can't be there for him and go to see him more. I know I say this every year but I remember panicking because I was going to have to miss 2 weeks of school, when they told me that I got a virus on top of my bronchitis. Little did I know I would not be going back to school. And to top it off, my Doctor, the one who knew me and was so understanding and was my base is leaving. He has been my Primary care doctor for 9 years. He saw me through the worst when I was 84 lbs, through finally getting a diagnosis and through these years after. And now I have to start over with a new doctor and I am really scared about that. I have an appointment to see the traitor on Nov 8th and I am hoping he will be able to recommend someone and I am going to give him a piece of my mind how dare he leave. LOL. But god to have to explain all this to someone new. and then I mean most of the time when I ask Dr. G for pain meds he gives them to me a little stingily sometimes but always when I ask him when I see him. And the injections are sometimes the only thing that can get me through a headache and I know from experience that 1 of the other doctors in the practice will not give them to me and what am I going to do??????????? Jim says we may have to try a pain doctor again but then you have to try all these new things and I never understand is if I have found something that works and I don?t abuse it. Why I can?t I have that? Ok sorry did not mean to go off on that too. If I had the energy I probably throw a pillow or something but I don't even feel like doing that! Sorry for the long post but I needed to tell someone who I knew would understand. So if you have any spare hope or strength can you send it my way, I really need it today. Stacey

Oh I get the hair pain! You are not weird at all and it is like you can't even brush your fingers through your hair. I get it when I have a headache and sometimes just any day. My doctor thinks that it is the tension in my neck that pulls on the scalp and also the pressure on the nerves that makes it hurt but he is not sure. My chinese doctor reccommends brushing my hair everyday with a wooden brush to keep things flowing and to hopefully lessen the pain but I can only do this on days when it is not so bad. So you are not alone! Hope it eases for you soon. Stacey :-)

Welcom and sorry you are here but we are a good group and can help if we can. I think you should start by looking through the pinned topic at the top of the forum called Help yourself to Answer Common Questions. A good place to start and just by reading POTSPlace's articles on dysautonomia. Also if you list what your symptoms are people might be able to give you more help. We have a lot of knowledge on this and as someone esle said most of the time we know more about it thatn our regular doctors. Hope this helps and remember you are not alone! Stacey :-)

Happy Birthday to you! Hope your day was special too. Sorry if we missed it But hope it was a day of sun and you ate lots of ice cream( if you can) and had tons of fun Stacey :-)

HAPPY BIRTHDAY! I woudl make up a song but since I am so dizzy it would probably be all wrong. So I'll just wish a happy day and hope all those presents come your way! Happy Birthday! Stacey :-)

This is one of my main problems. I have not found anything as of yet to help prevent and many neurologists will want you to try SSRIs which also made me crazy. I know some on the board have had luck with some preventiative medications, a lot of times anti-seizures medicines can be used to lessen the occurence and the strength. I would try and find a headache specialist neurologist and hopefully they can help. I use accupuncture sometimes to help but when they get the worst my GP lets me come in and he gives me a injection of demerol and phnergan which eases it a bit and then eventually breaks the cycle. But yes go see a neuro especially if you haven't before but do tyr and find one who specializes in treating headaches. Hope this helps, Stacey :-)

I guess it is a night for not sleeping but just wanted to send you some support and say I understand. Hopeing you are feeling a bit better and are asleep! Stacey :-)

Now, I thought I was doing good, I can't sleep either and it 4:30 am and thought I would be the first one. But glad she saw wishes as soon as her birthday turned over. Ok here is my song joined virtually in by the Gilmore Girls hem hem RG: Happy Birthday to You! LG and ME: Go Emily! RG: Happy Birthday to You! LG and ME: It's your Birthday RG: Happy Birthday Dear Dancing Liggggggggggggggggggggggggggggggggggggggggggggggggght(very pretty note Rory!) LG and ME:Go Go Go Dancing Light LG:Dancing Light isn't that pretty makes you think of happiness and friendship and shopping! RG: Mom shoppping????? LG: Well we could get something for dancing light aka Em too. Happy Birthday to Yooooooooooooooooooooooo! GOOOOOOOOOOOOOOOOOOOOOOOOOOOO Emily! ( done with very nice cheer and dance move you should have seen it) My first wish is that your doorbell tings and the 5 people you wished for your celebrity hot tub are there with a hot tub ( but not to hot or you would faint ) Lets see it was TM, JC,BS,SP, and LW and since it is your birthday your husband Sting! Truly em, I hope you have a Happy Birthday and wish you happiness, light, hope, getting better and more than anything the friendship, support and love you have given me. Sorry its a bit goofy but could not resist. with love, Stacey aka cc :-)

Hey, I have been noticing sometimes that when I am sitting I will all of a sudden notice that my body is swaying side to side and sometimes my head will shake (not usually at the same time) -- not side to side or up and down but like one ear up and then the other side up ( can't figure out how to explain that) Also my balance has gotten really bad, I fell in the closet about a week ago and the saga of my toe. I feel like I can't catch myself. Do you guys get anything like this? Maybe just a weird pahse but since it has been going on awhile I thought I would investigate but how do you look up head shaking ear up and down on google. Any other head shaker body swayers here, I wish it was because I was dancing but sadly only sitting Thanks for any info Stacey :-)

Hey do we have another Stacey on the boards?? Yea! As you can tell from my toatlly original screenname:lol: I am a Stacey with an e as well Welcome and hope you can find some answers Stacey :-)

Heehee Unfortuantley I copied you agian, I tripped over my cane and what toe got caught??????????? Arghhhhhhhhhhhhh! Of course I did not have it taped because I was on the way to the bathroom to retape it! Oh well the bruise was an ugly yellow and now it is a lovely purple again! Once the throbbing stopped I thought it would feel better but it still hurts, which I am sure you understand! Corina I am very happy and feel very blessed and thankful that you are my friend too. All of you, we will get through this muck with strength, hope, friendship and love. Stacey :-)