StaceyYount

Hey, Have you tried valerian? You can get it at a health food store. I use it sometimes and Jim really likes it, he had a pretty wicked bout of insomnia and valerian was the only thing to help. It just kind of settles you and then you fall asleep. I use phenergan when it gets bad. Like now... I almost got on the computer last night to see if anyone was on at 2:30, finally fell asleep at 4:30. It makes the days seem sooooooooooooooooooooooo long doesn't it. Also I have found if I am just laying desperately trying to sleep I won't so sometimes I put on the TV and put on a movie I have seen a million times and then eventually I go to sleep. The other thing that works if I am sleepy but just can't seem to fall asleep is that I crochet in my head. I start doing stitches and then it is morning! Jim also lays on his back and places his hands on either side of his breast bone and gently presses, good accupressure point. Of course sometimes these things work and sometimes I am up all night. :-0 Arghhh! :-) Here to hoping we are all seeing happy dreams tonight! Stacey :-)

Hey, We have been going through sort of the same thing with my dad. Have you ever heard of Lewy Body Dementia? One of the hallmarks is that the lucidity comes and goes. My dad was orginally diagnosed with Parkinsons but then last year he went down hill. After much research and some help from a friend I found the Lewy Body. It wasn't until last month he got the diagnosis. Strangly it has OH as one of it symptoms and the lewy bodies can cause problems in your autonmic system. Anyway something to look into since it is not recognized that often and the fact she is in and out makes me think it is a possiblity. Hope this helps. Stacey

Hey, Have you changed clothes washing soap or are you wearing any new clothes. A few years ago I got a new sweater and did not wash it before I wore it the first time and got a rash on my arms. And then another time we tried a new clothes soap and I got a rash on my stomach etc. But if you have started new meds it might be that or shingles ( my dad had that and so did my mom, my dads hurt bad but my moms were just sore). Good you are going to see PCP tomorrow. Thinking of you! Stacey :-)

Jan, My thoughts and prayers are with you both! Stacey :-)

Hey Dizzy girl, My husband is from Erie, was born there and lived there until he went to grad school. We got married there in 1995 and he still goes to visit his parents and friends every August. I use to go there every August with him! We may have passed by each other sometime! :-) It's a great place. Stacey :-)

Cool Thread! I live in Titusville, Florida which is on the east coast I am about 10 minutes from Kennedy Space Center.

Hi, My husband calls it changing my perspective. Somedays it is just going into another room to do something I usually do in my "room". Watch a movie or lately it has been to sit outside and look at the stars. Sometimes we go for a ride and look at different things. I ususally pay for those but for awhile I have escaped my "illness". I am not sick Stacey I am just out. But also somedays I just have to let myself have bad days. I cry, I scream ( on the inside anyway), I virtually throw things but you have to let it out. Then I can get myself back together and face this one day at time, sometimes one moment at a time. It also helps on the bad days to have friends who understand, that you can virtual scream and whine with because you know they understand. These maybe just simple things but to me they have kept me relativly sane(no comments from the peanut gallery!) for the past 10 years. I try never to think that this is the way my life will be forever, somedays are much harder than others but it is that hope that keeps me going. Always remember that we all understand and hope that one day this will all be just a memory. Hope this helps, Stacey

Thanks you guys! Will respond more later got a headache from the visit of course!! I thank you for all your responses. Stacey *:-)

Hey, I just got back from the gynecologist and she said that I have several fibroids, which I know are benign tumors. I have have been having horrible periods and pain and pain in between periods with bleeding. Got anemic and now what to do next. Her 3 suggestions were 1. Endometrial biobsy ( she wanted to do that today but I just was to tired all ready) 2. D & C mostly for tests 3. Depo Provera 4. Hysterectomy ( I can't even think of this one yet!!! ) She does not want to try regular birth control pills becuase I am still mostly bed bound and it is jus a may or may not help. I did read the other topic but wondered if you guys had any new light or any suggestions. I need to do something. This pain and I think the anemia are most def. contributing to my hole. I have never had firbroids before. Did have ovarian cysts which required laproscopy in 1992. Any way any help with any of this would be appreciated. One more thing to deal with and still no definite cures jsut maybe some help. Do you think for once we could have something like a a cut and a bandaid and a kiss got it all better. Dad is home but still bad and mom is having trouble coping and I feel like I am drowning. Sorry mini vent. ANd next week I get to go to the dentist. My favorite favorite thing. Ok thank if you have any suggestions or ideas. Stacey :-)

Happy Birthday to you Happy Birthday to you Happy Birthday dear Julie Happy Birthday to you!!!!!!! Stacey :-)

Mary , I am sorry this is a little late but my prayers are with you and marissa and your husband. I hope this weekend goes well and that she dances her heart out ( not literally of course hahaha). I will be thinking of you. I am sorry but have you considered trying a traditional chinese medicine doctor to maybe help with the motility. I am not sure if it would help but if the propulsid is out then maybe try this. Also have they tried her on ocetreotide or they even tried me on erythomycin. Now I realize this all maybe stuff you have tried before so forgive me but just wanted to try and help. Anyway if none of this helps know I am thinking and praying for you! with love, Stacey

Thanks everyone, He is ok, has a bad sinus infection I guess that started the confusion but I am not sure that is it. Still have to wait until June 14 to get him to a specialist but we all know about that. Anyway thank you very much for your thoughts and prayers and hopefully I won't slide much further in! You give me strentgh and that is a precious commiditiy I know! Stacey

Thank you Julie, I am priniting the article to take to my primary. We will see but if I find anyhting out I will be sure to pass it along.I get a lot of pain and pressure in the back of my neck and at the base of my skull so maybe this is that. I don't know it is all such a muddle to get thorugh. Please let me know what the doctor says when you get your results, I want to know for you! Hope today is ok and maybe we will have to start a new club the Mastoiditis girls?!?!?! Sorry not feeling good today but I tried Stacey :-)

Julie, Still in my hole but had to comment on this... This is very weird but my chinese doctor has been speculating that myabe i have mastoiditis too. I too get very sore back there and if you massage that area I get the worst (this is gross sorry) tasting drainage. I have had a lot of trouble with sinus and now this. It is very weird that you are mentioning this now. But It can happen and it can linger for years. A lot of the pain can be the swelling in that area. Mastoid sinus area. And it can get infected. My primary is looking into this too. If you find out anything let me know and I will let you know. Weird taht this has come up for both of us. The ohter parts I don't know and am sorry you are feeling htis but if you do have a chronic infection in your mastoids that could cause a lot of you flu symptoms or maybe hat they are worse now. HMMMMM... Vent away and know we are here to supprt you. Stacey

Hey guys, I need your support again about my dad. He is going back to the hosptial and I am so sad. He got really really confused again and now they have to more tests. He is in Orlando now so I am hoping he will get better care. The phone has all ready started, my Gran has all ready pulled back and expects me to carry her along, as well as trying to help my sister my mother deal with this and worrying so for my father. Had my own doctors visit today and I am exhasuted, frustrated and have a headache from ^&%^(&()*_()&& The hole is getting deeper again. So can you guys jsut say a little prayer or send a thought or if your to deep maybe wave hi! Stacey

Thanks you guys! You know my husband and I for months will sit here with the status quo and then we think well lets investigate and we do and we make the doctor rounds and then you see what happens. I too have had this about 10 years got diagnosed after about 2 years. Have been searching since then so I know what you are all saying. Thanks it just gets so frustrating. Of course when it rains it pours, now gyn problems and off to see a another doctor. Ah well we will see. Off to family guy tomorrow to see what next plan there is or bdck to staus quo for awhile to recover from sooooo many doctor visits! Thanks Stacey :-)

Hey all, I am sitting here in my hole, clutching my spoon and have been lurking but not up to posting. Sorry it has been a bad few months. This hole is so deep I feel like I will never see the light but I will. Know I have a lot to catch you guys up on but today I will just rant about stupid doctors. About 4 months I posted to you guys about my rash and sed rate. I eventually did get to see the rheumatologist. One of the first things she said was you have had an elevated sed rate before why the concern now and I don't think this is a rheumatology problem but ... So then I knew I was in trouble. The second question was so why the wheel chair?? Then I got well if you walk a few steps your heart rate settle back down right??? She didn?t realize how that my husband and I knew what she was saying that this what is suppose to happen. So we explained about POTS. She looked at my rash a bit asked a few questions but again said I don't think this a problem I can help you with. But we will order some blood tests. She listened to my heart and siad goodness that is rapid and you are siting down. You need a good cardiologist. 2 weeks later call your sed rate is still high and you are anemic, more tests. Yesterday, I got a call from her nurse and she said the doctor said that she really has nothing to offer me and to go back to my primary care doc (poor guy). Now even her tests showed an elevated sed rate and some other stuff (anemia) but since it does not shout out a problem she can?t help. I Know I should not get my hopes up that someone is going to find something that will help or at least make something go away but it never does. I AM SOOOOOOOOOO FRUSTRATED!!! No doctor wants to investigate anything, unless the tests show something definite they just send you on your way. I still think I have some sort of vasculitis but maybe not it may still just all be a part of POTS but (*&^%$##$ this is a crazy disease. ARGH!!!!!!!!!!!!! My poor primary care I am going to see him on Tuesday. How many times have we had to go back to him after a supposed specialist has given up. Long ago I gave up on the magic pill to make me completely well ( very hard to do ) but sometimes I am hoping for a little magic drop to help some of the symptoms. Ah well Onward and hopefully upward! Hope your day is going ok today! More later have to go lay down before my head explodes! :-) Stacey :-)

Hey, Just a funny for today since it seems we all need it. Before I start my husbands nickname for me is Cakes. So we were teasing each other the other day and I said something like yea but I've got super powers. AND he said "Yea your super power would be to crumble. You would run in and say I am here to help and then crumble to the floor!" And then of course he had to demonstrate it. ANd you can imagine what that looked like! "You get the bad guy he says and then lose him when you have to sit down." Of course this went on all day! Hope you get a laugh! Stacey :-)

Hi Welcome, Hope we can be of some help and support. Ask away but be patient some of us are not doing so good now we are what we call a POTS hole so it may take awhile for people to answer but someone always will! Sorry you are here but you are not alone! Stacey :-)

WHAT ARE YOU DOING WITH A PICTURE OF MY BOYFRIEND?????? :-) He is the cutest in the world.( Sorry to my husband Jim if he ever sees this!) Thanks I really needed a smile today. Now can you tell me how to do this? And can you send me a picture of him? :-) Hope you are having a better day! Stacey :-)

HELLLLLLLOOOOOOOOOOOOOO! I am down here and would love some tea thanks! PG Tips if it is possible. So sorry to read that so many of us are down here! Maybe we should tunnel to each other but since I think all we would have the energy for is to use a spoon it may take awhile! heehee :-) Was beginning to see the light and then slipped back a bit! Miss all of you, welcome all the newbies, sorry you are here but we are a good lot! Hope to see the light soon and to hear you are all there too! Stacey :-)

Ernie, I am very deep in a hole right now but had to respond to this. I am so sorry you had to go through that. I can't tell you the number of times I went through many of the same things. I had conversion disorder according to one doctor, though I was 84 lbs and not eating and they had by then found the POTS and dysmotiltiy. And then later I was accused of Munchausen's. I so understnad your frustration and your sadness. But you know you are ill and even though it takes everything in you to keep fighting keep on. Never doubt yourself and hold on to your diagnosis's, Dr. Grubb and his knowledge and that he nows you are ill and our support. Many of have been there and know how you are feeling. We understand we send you strength but most of all we believe in you! Take care and remember, 'I get up, I walk, I fall down. Meanwhile I keep dancing" Sending you support hugs and anything else that will help Stacey

Hey, I think the thing you have to straighten out in your mind is do you not want to go out because you feel so awful when you do or are you really scared of going out of your house. I have had this for almost 10 years now. I cannot go out on my own, when I do it takes me days to recover. I have been mostly homebound and virtually bedbound since 1995 with this. There are days when I just tell my husband get me out of here because I can't stand these four walls anymore but usually I pay if I don't do that when I am having a good day for me. I go to doctors appointments and like I said for rides and sometimes dates. I have not been shopping in 10 years, though sometimes I will go to a store when I think I can get Jim to buy me something on our dates. Most of the time I don't feel like going and sometimes I can't but it is not fear of the outside world it is fear of how I will feel when it is done. I am still recovering and can barely do anything after a dentist appointment last thursday. You just need to figure out if it is because you feel so awful when you do go out and you have to recover for days physically then I don't think it is fear of outside , maybe your illness and the results of how it makes you feel. The tilt table will tell you a lot of things. It is a harmless test though you may need a few days to recover from that too! We all learn how to deal with this on our best and bad days. You will learn too. Read as much as you can, these posts are an invaluable learning tool. Keep reading and asking questions we all know a lot about this stuff unfortunately. Stacey :-)

Thanks again! Your words support me and help me go on. Just a short post cause I am trying to get ready for the lovely dentist tomorrow. No real help taking Dad to local doctor just have to wait until April I guess. Thanks, Stacey Will post again after dentist recovery!

Sorry need to vent about this again because it is still going on but I really really really can't handle this. Lets see last I told you I think was that it was a super infection. Well they got iv antibiotcs that started to be clear it up and of course moved him to rehab again. After many bad days and a long story, a blood transfusion and another UTI they finally said they were going to release him. Of course my parents had planned on moving up closer to my sister and about 45 mins from me. That happened while dad was still at the center. Got Mom moved with many trails and her having a pretty major melt down. Got him moved that next Wednesday. Called to change his insurance since we could not do it before that and they told us that it would not be until April 1st. He still has coverage down south but can only see urgent care or go to the er. Now we are not even sure the infection is gone yet. No doctor in his new city will see him as a self pay. They took him to 2 separate urgent care facilities and they would not see him. So now he is coming over to see a partner in my primary docs practice as a self pay. We need to make sure that he is infection free though I really think not. My mom is losing it, my 84 year old Gran has helped but she is exhausted and had to have cataract surgery. my sister has a new job that is so demanding that it sometimes takes 2 hrs for you to call back and she is now saying she can't be a second caregiver. They all call me and complain and say I don't know what to do. What am I suppose to do I can't even get out of the house. We had it set up so that my sweet husband would go with them this morning to the doctor but then Mom had crisis and could not drive him over. So Stef is taking off work and they will go this afternoon while I watch my 3 year old niece (that is a happy thing!!) I am sooooooooooo tired and disgusted and frustrated and I can only hope that today something will happen. The thing is is that the main one we have to be concerned about it Dad and I just can't believe we can't get him to a doctor without making him travel 45 minutes. And now they will have to pay out of pocket. Help I am drowning!!! I mean just this morning I have been on the phone at least 5 times with my mom and sister. My mom is now really really mad at me because I was not sympathetic enough this morning to her. She felt like she could not drive him and said that he was to dizzy and she had hurt her foot. I said ok well we will just have to reschedule. She is says I need help and he may have to wait until April 1. I basically said he can't and then I guess I was making her feel guilty and not being considerate enough of her. She can't handle this, he is to sick, my sister can't, it goes on and on. We have to get him into some kind of facility or some doctor that will look at the whole picture but that is another story, I just want to get him through to April 1st if we can. HELP!! Sorry I know again this is off topic but I just needed to vent. Oh yeah on top of it Thursday I have to get 2 crowns and maybe a root canal! WOOHOO! Everyone in my family is so busy venting to me and looking to me for advice and then not following that advice that I needed to vent to you guys. Sorry. Just send a little prayer or thought that we can get him stable at home until his new insurance kicks in ,that my mom gets strength, that my sister is able to help more and that I can handle this. All these smilies are how I feel. Maybe my niece will make me Thanks and sorry again! Stacey