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hopeful-girl

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Everything posted by hopeful-girl

  1. 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)
  2. 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
  3. 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)
  4. 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)
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. TY Bee. It is nice to have it written n stone instead of guesing ;-) Night Corina
  12. 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
  13. 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
  14. 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
  15. 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
  16. Hi Lauren. Well Dr. Low was very helpful and he was a bit discouraged and felt helpless too! Because he told me that I had already used my resourse up as far as meds and he has no advise to give me really. Accept to try and get my sodium up I had learned from here when I first joined that lots of H2o was extremely important for the pots patient because of our low blood volume. Since my blood volue is extremely low he told me to take salt pills. My sodium was 7. What kind of salt pills do some of you take and how much? I am just curious. That is ll he could suggest. I have tried everything else. When I get back home there are two things I can try to help with my chronic pain. One is cimbalta (sp?) It is an anti depressant and they found that it can help with blocking pain receptors. I can also maybe try Neurotin. We will se when I get home. Florinef is out of the ? I had a bad reaction to it. Midodrin is out too. My blood pressure fluctuates from high to low. And I have bradycardia and tachycardia. I also have to take knapps too. SO I the Doctor feels it would not be a god idea. So I I have all my gastric stuff on Monday and Tuesday and maybe they will have some different options for me at least in that area. Have a great day Corina Hi. Me too! I was surprized they said don'ts stop my meds. So I am sure that is why I had more of a melow TTT. Iwas going totalk to him about htat again before i leave. Cheers Corina
  17. Hello. For whatever reason my post was deleted. I guess Istepped over a boundary and it was abit confusing. So sorry again. I met with the Doctor today. He dianosed me with CFS, Fibromyalgia, POTS, and low blood volume. We are also going to check for RSD (reflex sympathetic dystrophy) I will know that next week after my gastro testing is finished. My sodium should be in the 100's andmine is a 7. iwa shockked at that. So he said I had extremely low blood volume. The sweat test was fine for me. I prettty much passed it. There may have some slight damage to the vagal nerve but it looked pretty good. I also had the best tilt table test ever out of the 4 I have had. Go figure eh LOL However I did take all my meds before the test. He did not tell me other wise and the direction I had did not say to discontinue anything and Iasked the nurse if I should pass up my pain meds and xanax prior to the test. I do beleive it affected the outcome. However I wasn't aspPOTS as usual either. There are occasion I am not super potsy at certain tmes for what ever reason. I did tell him that my blood pressure can fluctuate with in hours and even less. One minute it seems ok and the next it seems drastic. OH well it was not perfect so he also diagnosed me with Dysautonomia and POTS. However when I was in the office this mroning. I was way symptamatic and he could even tell. Murphys law LOL I still have my gastro to be done Mondya and Tuesday so I will be meeting with the Neuro 1 more time before I leave. So I am allot less frustrated and stressted. I am done fighting with the insurance, they are being more co-operative now. Which lifts a huge stress factor and I got the weekend to rest and refresh and mellow out. Have a great day Corina
  18. The medication fore was just horrific. I actually tolerated it. without my usualafverse reactions. However I became very mean and felt phsycotic (sp?) SO we discontinued. Doc says that is one the things it can do. Corina
  19. What can they find out threw a sleep srtudy? Maybe I should request to have one done while I am here at the Mayo just to cover more gorund and to maybe help with more answers too? I wish you the best and I hope they can find more useful information to help you and I will pray that the meds work better . Take care and I many good thought to you. Corina
  20. Shayden awesome suggestion. I will definately being using this inofmration you guys gave me. I just new there had to be a paitents rights as to NOT having to suffer so badly. I know doctors have to watch thier backs these days. Because of the huge abuse of narcotic drugs. But for those of us who need need it to make it threw the day it is not fair that others have to ruin ir and make it more difficult! They are being watched by thier practice and also the pahrmacy etc...............so I do understand there situation. However when you have a patient who has proven them selfves time and time again I and I do not look like I was strung out on Drugs. Then I reallythign they need to take eveyr thing itno consideration. What floors me about this temporary Docotor. She NEVER went threw my file and leaarned about me at all. I better get thank you again Corina
  21. First off thank you very much mighty mouse. That is what I needed you rock . That givce me ammo and also think things threw on how to aproach her. And if she does not want to help coninue my regimen already sextablished by my Pc then I will try another Doctor in the office or my Gastro Doctor. See my primary thoughtit best to hold off on the pain specialist until I get back from the Mayo. She felt and also my Gastro to just continue what I have been righ tnow and thatit is to soon before going to the mayo to switch any thing especially to neurontin or another kinda of med like that I hear can also work. I just do nt remeber the name. SO that is definateyly an opption that we were trying to wait on. But Imay have to for now and let the pain managemnet specialist aware of the importance ofNOT changing any thing until after the mayo. Night Mighty mouse ;-) Corina
  22. Hi Mighty Mouse. My docotr and I are planning a trying a few things after I go to the Mayo Clinic. We just feel we need to keep things as they are until after my apointment. We are going to maybe try neurontin to start. That has helped some people with pain and then they do not need so much pain meds. So we will see. Butbecause it does alter things in your system she and the doc at themayo clinic said not to change any thing rightnow. I go to the Mayo clinic Spetemeber 25th for two weeks. So we are just keeping theings on track. I figure if this temporary doctor does not want to help me then I will go to my gastro Doctor and let him know what is going on. I tried one time release along time ago. I am not sure what it was now but I can find out and I had a bad reaction to it. What is the AMA?Some thing medical assosiation? I have takent the patch. This one other doc tried the 50 mic fentynal patch and it did nothing for me. I would have to have the 100 and since she did not knwo me well she would not prescribe it for me and that was right after my doctor left. See here is my issue. My Primary went a way and all h**** broke loose. I finally lost my j-tube. I was doing the elixer threw that and most all my meds. Well then I was placed on a port. Then I got serious sepsis and was in the er and hospitol for week on some serious antibiotics and I blew out 20 veins in my arms. They said it was because of the antibiotics. I have never had that happen before from iv's placed. Now I have a picc line and just found out I have to go threw iron infusions 1x a week for 5 weeks because I am very iron anemic and my potassium has been low. I swear I was jinxed since she left ;-). So it has been absolute H**** for me and my pain has also been higher than it has ever been. Frankly I had the most god awful stay in a hosptiol ever. I had never stayed there before and they were all older nurses and I do not mean to be judgemental or any thing. But I think they were old and burnt out because they were all mean an rude and unfriendly. Thank you SO much for your information Mighty Mouse. Night Corina Hi Miriam. That is not abad idea. however my teeth are not aproblem any more. SO I have a feelign he would not be comfortable with it. I will try my gastro if i make no head way with this temporary Doc ;-). Night Corina
  23. Hello Willows. I have to admit I enjoyed your post and yet it also hit a nerve. Let me explain why ok ;-). I am sorry to say I feel as though you have mistaken what I have said in my post. I do not have anxiety and I did not say I felt like my skin was crawling. I said I was in so much pain I wanted to crawl out of my skin. Meaning the pain was so bad I did not want to be in my body and feel it any more if that makes sence. I do not have anxiety. What I have is electrical surges and feel like I have either had way to much caffein or feel like I am on speed and that is why I take xanax an that has worked wonders for that. That has been going on WAY before i was on pain meds! I take the elixer because I throw up so much. And the elixer I take is the strong stuff it is 20mg per 1ml. So basically it pretty much absorbs once you drop it in your mouth. I do know the affects from narcotic drugs. And I understadn the differance between addiction and dependance. As I mentioned I have an awesome primary and we discuss every thing. BUT as I MENTIONED. She is gone for 3 months so I have to explain my case over again to some one who is VERY ignorant to our problems. She KNOWS nothing about autonomic neuropathy, Dysautonomia or even fibromyalgia or POTS. She even admitted that. So that is her issues NOT mine. so I know she is NOT concerned about the narcotic drug causing anorexic or bulimia. She was trying to diagnose me and place the blame on some thing else. You had to be there and if you were there you would know. Also I do know what to say and not to say. I feel like you are almost justifying the doctor and to be honost I do not feel I need that. See you keep referring to this person as MY doctor and try explaining this and that. She is not my doctor she is a fill in while my Doctor is gone. That is the frustrating part. There are many of us here who know the struggles with docotrs who do not understand this disease. That is what it is about. She knows nothing and is blind to all this! All I needed is to know my rights as a patient for proper pain management so I can get the proper care while my PRIMARY doctor is gone. Cheers Corina PS and I mean no offence by expressing what I felt.
  24. I am seen by a wonderful primary care doctor. She is on vacation for 3 months and is traveling italy. YAH for her...................BUMMER for me. Right before she left we were increasing my dose of oxycodone from 20 to 25 since 20 was not helping any more. She had also said that this is normal for some one who has been on it for a while like me for our body to start to build a tolerance. We were going to try 30 if 25mg elexir did not work. Well 25 did not work and 30 30 did. Anyways SO I was taking 30 mg 4 times a day. Then because I lost the last three of my bottom teeth and got dry socket in every one I was taking the oxycodone 30mg every 4 hours for my pain. I went in Fridayto get my new motnhly precribtions from the new Doctor and she started asking me like a gazzilion questions and it was bothering me. She was even hinting around to being a bulimic and anorixic. Oh GEESH I am on a gastro paresis diet. So we know how little we eat and how it is all bland foods. That does not make me anorixic. OMG I was appalled by this. I am not there for her to diagnose me, I have my diagnosis. She is just to be there while My Primary is gone and I am their to have her disepnce my monthly meds until my priimary comes back. So tonight I go to take my 30 mg and I noticed that she cut it back to 20 mg. ARGH I am SO fricken pissed. Not only amI an SO much pain I wasn to crawl out of my skin I am angry she lowered the does. Now Ihave to call the my Primary care docotrs nurse on Monday and ask why she did that. SOmy question is. What are, our rights as apatient to haev our pain managed to make t threw our day.
  25. Count me in. Let me know time and place and I will be there ;-). Corina (hopeful-girl)
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