hopeful-girl

Hi. Congrats to you. I too got approved the first time. No lawyer etc. They went back two years on me. 5 months is all it ook. Woo-Hoo. I was so extatic I was cryng. I could not believe it! Believe it or not I believe what made me win.................... was my meeting that SSI set me u with the phsychiatist. I was there for a few hours and she watched me go down hill fast. She was even sympathetic. She told me no metter what I felt to make sure I talk to her and tell he exactly what I was feeling because her job is to evaaluate me from th time she answers the door till the time I leaaave. I was SO relieved that I got it. My husband and I just split up too. He just told me aftwer 8 year he does not like my kids. What a joke HUH!? Andf I have prtty darn good kids. So good luck to all of those fighting. My prayers are withyou! Corina (aka hopeful-girl)

Hi thank you for your input. I am always an open ear when it comes to what has worked for others and what hasn't. Since I no my body pretty well I can say it was not coincidence (sp?) It was definately the the rozeram. I do get the cold sweats and I do get resltess nights. However thre was a differance in this. See I usually do not get anxiety attacks or feel anxious. I looked up the side affects and all the side affects I had were all thatwas listed and then it also put me in a bad potsy spell. Unfortunately since my symptoms were to the extreme I do not want to give it a second chance. However I do know what you mean about second chances with some meds. I do that with too ;-). I am SO happy it works for you. I know we all need to find what works and when we do it is such a relief. Night Corina

Hi. I deal with bad insomnia. I also deal with serious chemical sensitivities. I can go for a couple weeks or more with out sleeping much and then I will crash and burn and want to sleep for days. My doctor gave me samples of rozeram about 3 months ago. I finally got the courage up enough and said heck with it and just took it. I had an awful night. I was sleeping but not restful. I was having night sweats and bad dreams and was very restless but yes tired. I got up after 9 hours and now today I have been feeling Horrible. I have been feeling very anxious like on the verge of anxiety attack. Now I do take xanax. However not for anxiety attacks. I take it because I have a constant wired feeling like I am on speed or O.D. on caffein. We also found it actually controls my pvc's and pac's I used to get so bad every day. So I just took my xanax and will see if things settle down. I also feel more fatiqued, extremely exhausted, locked in a brain fog all more than usual and more naseated and sick to my stomach than usual. I guess this just exaserbated my potsy and FIbro-CFS crud. It has just seemed to severely intensify things. Anyone else have this problem with Rozeram or other sleep aids? Is there anyone who takes a sleep aid that works for them who has a history of chemical sensitivities? Cioa, Corina (hopeful-girl)

I Linda. Hey how did things go for you at the Mayo? I never heard back ofcourse I hadn't logged on for a little while. I had bad reactions to tricylic (sp?) antidepressants. I tried 3 different ones but that was eons ago when they were trying to tell me it was in my head. What is your deal with meds? Do you usually do ok on meds or do you have allot of issues with them like allot of us do? I hope your trip went well. Corina (hopeful-girl)

I started having symptoms in 1988. I was finally diagnosed in 2001 with POTS. I went almost 14 yeaaars un diagnosed and having it blamed on depresson or anxiety and there is nothing worse than having them tell you it is in your head. I finally found a cardio that I was persistant with. He did a tilt table test and basically the cardio was like you have POTS try this see ya later. He was a jerk! Never informed me of what it was or anything. I eanI did not even know what it stood for. All my learning was done here online. So yes thank god for the internet ;-). I think the hardest part about the ANS is everyone is SO differnet yet allot of us are very similar. For me My blood pressure is all over the baord. It can drop very low and it can go pretty high. I think the highest ever was like 167 over 130. My lowest has been like 55 or 40. My heart rate will do the same. It can drop down in the 40's. The lowest ever recorded is 39. And it is high too. I think the highest has been 2no more that 200 max! Everyday is different.....................well I should say every miute is different LOL The other day I had two Doctor apointments and one was at 9:30am the other at 1:30pm. The morning blood pressure was 159 over 127 and the afternoon bloodpressure was 88 over 57. I am curious is anyone else has difficulties with their blood pressure also being all over the place? I usually hear here how it drops or it increases. I think the first Doctor that diagnosed me had heard of it. However he new nothing about it. Soit is to baad that we have to also educate them especially whenmost of us are very sick. Night Corina

Hi I myself and on jejunostomy tube. I have been diagnosed with this for 2 years now and I keep hoping one day I will wake up and I will not start my day out throwing up. It does not matter if I eat anything before bed or not. I always have an abundance of acid and bile. I already take 20mg 2x daily prilosec and zantac 150mg 2x daily. And whenI refer to eating I eat nothing solid. Or as one of my GI asked me was if I can eat knife food, fork food or spoon food. I thought that was a cool way of looking at it. All I eat is spoon food with NO SOLIDs! Medicine wise. Nothing has really really worked for me. I tried regllan. EWW that stuff was bad it made me very mean. To bad too since i had no other of my usual side affects from it. I tried Zelnorm, protonix, domperidone, and nexium wich ofcourse I had bad reactions too. I do take e-mycn off and on. It will work for a while and then loose it affects. However this last time it didn't have really any positive affect. I was a bit disapointed. My Gastro wanted to try me with a botox injection. However I am refusing it due to my adverse reactions to SO many medicines. Honestly I have two fears. 1. of dying and 2. doctors not listening to me about medicines. Oh yah.........I actually have a third fear 3. Spiders LOL

I did NOT get all the answers though. I am sure the meds played a role in possibly not being as accurate as it could of been. And I am ANGRY that they did not tell me to go off of the meds. It was specifically stated to me to continue all meds unless other wise instructed by my Doctor there and as I think I mentioned. They had my list of meds I was on and ones I can not take. I had given those to the Dr. the first visit. SO they knew what I was on. I just assumed that they would tell me like they said they would. SO there are some answers................however I think my meds probably interefered with the accuracy. But that is just my oppinion. What also pisses me off is that I was actually having a decent morning which is rare for me. But does happen. It just figures It would be on the day I am doing the tilt test LOL I did good threw the test. However two hours after the test I could barely walk up the hotel stairs with out being so out of breath ad feeling light heade etc................Go figure. Oh well I got mre testing to do here now ;-). Night Corina

Hello. I am SO SO happy to be back home. It was great reading what Dr. Low wrote andhe really is a nice man! Because some of my tests were off and some turned out normal they are saying instability. WHich really really *****. Because it is that way all the My diagnoses is this: CFS, Fibromyalgia, Autnomic instability

Hello. See that is what I thought was odd too. When I finally got the apointment in the beginning to go to the Mayo. I aksed if I should go off my meds before hand. The nurse told me "NO" That depending on the tests they wiill have you maybe stop taking them the day before a 2 days before the tests. I really wish I would of stopped for the autonomic testing. Oh well I am glad to behome and every thing is partially done an over with. Iwill post a new topigf abou that . Night Corina

Hi everyone, I am heading home tommorow. I can't wait to go home and greet my doggies ;-). They are y kids too! So I am a little pisturbed however I do understand. As I mentioned in my other post. I have had a HUGE strggle with my insurance. I was scheduled today (early) for 4 tests. Well I woke up late. I have had a few bad nights dealing with insomnia. I had not slept for 3 days and then crashed hard last nihf. Well I guess it turned out great. I checked my cell phone messages. I had a message from my insurance. They said they would not cover the tests because I can have those done by gastro at home. SO I had to cancel the last two days. So the last two days has been a waist. Now I get to go home and have all these tests done. I had he GI write me a list of the tests he would of done and I will have my gastro at home do it. I will update this when I get home. I am starting to nodd off LOL SO I will take that as a asign to say good night for now. Corina

TY Bee. It is nice to have it written n stone instead of guesing ;-) Night Corina

Hi Linda funny you posted. I was going to just IM you LOL I am at rochester Minnesota Maya and I think that is where you are at correct? I would love to try and hook up. My Mom flew my daughter in. SO we are going to Mall of America in a while. We hould be back later So maybe this evening. Are you alone right now? Did you say your hubby had to go back or he would loose his job or your hubby said that? I am not sure about your condition and such. Can you stand and walk alright? If so we would love to take you with us to the Mall of America. We can get together when we get back other wise and maybe we can do dinner. We can pick you up we have car until Monday. Look forward to meeting. Corina

Hi Ernie. I will ask about that. I was very detailed and listed all the meds I currently take on paper and gave them a copy. That showed everthing. The amount and how often etc..... they told me they would le me know when I shouldnot take it for a certain test. Andthey did on some but not the autonomic testing. Now the one thing is. They never told me what the autonomic testing would be. And are time was limited and so much was covred and I dtill have question but we were out of time. He had to move on to he next patient. However if I would of known they were doing a tilt table test........I would of known automatically to stop taking my meds for that. So definately some thing I need to ask aboyt before I leave. Thank you Ernie for the post I appreciate it :0. Corina

I had a bad reactio to it. After 3 to 4 hours I could not stand up with out getting really potsy and I had a hard time breathing and I felt my thorat was tight and it was hard to swallow. I was shakey and light headed etc.......But hey i have allot of sensitivities. I hope it works for you. I take prilosec 2 x daily and also zantac 2 times daily and eat rolaids too. Have a good night corina

OMG both of you describe it so well it is like I a mirror of both of you. Hey do you guys also get painfull teeth and gums. The way my gums hurt is hard to describe. It is awful. My POTS used to be the main issue years ago. However since I have gone to the extreme with my sickness. It is the muscle and bone pain and brain fog that gets the best of me. It islikeI cannot sit or walk or even lay down. My bones feel sharp like they are broken and they are stabbing me. It is so uncomfortable I just want to crawl out of my skin. I just wanted to say thanks for postingand i am sorry you two are going threw this also. It is miserable. For me my oxycodone was workingfor awhile and now it is not. I have a high immunity to drugs and we tried the 100mc fentynal path and it did nothing. So what works for you guys for th eextreme pain andhow much? I wish you a restful and peaceful day Corina