Mrs. Glass

I emailed Bonnie and asked her. She has not responded as of yet. Vanessa

I dont know what slow rehab is, Dr Robertson said that he would send my pcp a letter detailing everything. I guess that is one question that I should have asked. He took me off of the meds because of the side effects and the way my b/p does, plus they were not working very well. He did say that slow rehab should help to jump start my autonomic system. It has not totally shut down, it is just not working very well. I really really hope it works because I am tired of all of this. Vanessa

I dont know what slow rehab is either, and I didnt think to ask him that question. He said that he was going to send my pcp a letter explaining everything. The reason he took me off of the meds is because the side effects were worse, and they were not helping that much anyway. All I know is that he said that sometimes rehab will jump start the autonomic system. I just hope that it works. Vanessa

Well I am back from Vanderbilt, and the news was good. I saw Dr. Robertson, and several other doctors while I was there. I didnt get a lot of information, but what I did get was encouraging. He took me off of the Florinef and the Midodrine, and put me on slow rehab. Of course I was on an upward swing so he didnt see how badly my body reacts, but he got the picture. He said that my autonomics had not shut down, they just werent working right, sluggish I think is how he put it. He said that the rehab should jump start my autonomic system so I could live a normal life. My bp was actually on the low side of normal for the last 2 days that I was there, and a couple of days after, but now it is falling again, and I am starting to feel just as yucky as before. He did say that if my bp started to drop consistently again that I would have to go back on the Florinef. Even though it was very expensive to go, it was still worth it. I saw a urologist while I was there, and found out that I may have to have bladder surgery. Oh yay another surgery! Just what I wanted to hear. Dr. Robertson is hoping that all of my symptoms will go away with the rehab. I hope so. I am tired of all of this. While I was there my husband got the good news that I was approved for disability, so now it wont be so hard on him to pay my medical bills. Sorry that I havent been on the forum for a while. Sitting in front of the computer hurts my eyes horribly, so I try not to sit at it very much at all these days. Hope everyone is doing as well as can be. miss talking to all of you, Vanessa

After many emails and faxes, I finally have an appointment with Vanderbilt. I will be there March 20th. I am so glad because I am getting worse as the days go by. I just hope that I can make the trip. At least I dont have to go off of all of my meds. I can still take the coumadin and the travatan, but most of the others I will have to be off of from 24 hours to 3 days before I get there. I know they are not miracle workers, but if they could just diagnose me and give me a treatment plan for my doctors here to follow it will have been worth it. I have not been posting because it is next to impossible for me to sit at the computer, and right now I feel horrible, but I wanted everyone to know that I am still here. I am just to sick to do anything right now. It seems like it is taking forever just to get this post done, then back to bed. I will try to keep posting but if I dont hopefully I will be able to after I come back from Nashville. Vanessa

Right now my docs wont let me take anything for depression. So I know where you are coming from. I was on wellbutrin and cymbalta and they were helping, but my cardio took me off of them and said that I could not take anything. Some days I feel like I am going to lose my mind. Some days I wish that I could. My PCP put me on Xanax for the bad anxiety attacks, but it makes my autonomic problems worse so I only take it when I am having a bad attack. I am one of the lucky ones, my family is there for me, very supportive and loving. I only have contact with my immediate family and my mother-in-law so I dont have to worry about siblings or anyone else. I also feel isolated as all of my friends are too busy to even call me anymore, so I am alone a lot. Even though my daughter lives next door she also has a family to take care of. We have an intercom system if I need some help. I dont use it though. Keep your head up, and the family that doesnt understand can just go sit on it. Let them try to live the way that we have to live and see how long they last. Hope you start to feel better. Vanessa

I also have pain in my legs and feet. Although when I wear the stockings I have a different kind of pain. I can not wear the short ones at all, I wear the waist high ones, and they seem to do ok for a while then my legs start to ache and when I take them off I have horrible pain in my legs. But thats just me. My insurance would not pay for my stockings at all. I found them at the pharmacy for about 25.00 so I have 2 pair. Vanessa

I had the paperwork, but not the phone interview. I now have an appointment with one of their doctors, so I dont know. My Attorney told me that there would be a phone interview, but it hasnt happened yet. Vanessa

I cannot be where there is colored lights at all. Bright lights, flourescant lights and even the sun will send me in a tailspin. So I wear my shades most of the time, and you might know it that all doctors offices have florescant lights. I very rarely go to the store anymore it is just too much for me. I just pretty much stay at home. My shades help, but not much. I guess they need to be darker. Vanessa

I was having the same problems, and my family bought me a pill case that has 4 compartments for each day. Before that my husband or my daughter would give me my medicine when it was time, because I would always forget if I took them or not, so I wouldnt take them. It is working pretty good, I also have 2 singles just in case I have to take meds at differnt times of the day, then I will put the times on the boxes with masking tape. Hope this helps you out. Vanessa

I am on Florinef, and I am not doing very well on it. Right now I am taking .05mg in the morning only. My Cardiologist is having me adjust the meds myself. When I get enough medicine to do any good for my b/p then my body starts doing all kinds of wierd things. I overload with fluid, and my heart beats very irradically. Havent found the right dosage of the Florinef or the Midodrine. Vanessa

Well I know they are at least looking at my file at Vanderbilt. I got an email from Bonnie yesterday asking me about some of the meds that I was on. Yeah, things are looking up. My Neurologist's office finally made copies of my records, and if they accept me on medical records, they will accept me on his. There was things in there that he did not tell me at all. Some a little bit scary. But I will fax them to Bonnie today. Wish me luck. I know that Vanderbilt is my best chance of finding out exactly what is wrong with me right now. Plus I will not have to worry about another doctor bill that my husband will have to work more hours to pay. I know that there is no miracle pill out there. But I want someone who knows what they are doing to tell me exactly what is wrong with me, and what my life is going to be like. I dont like surprises. Hopefully there will be meds that will at least help me some. Im not holding my breath though. Vanessa

I too have wondered the same thing. When I first got sick, I kept thinking that I was having a heart attack, and the er only treated me for anxiety or plueresy. Finally my b/p fell in the docs office and my hr was so low and weak that his nurse could barely feel it. So in the hospital I went. After months and months of testing and a bunch of false negatives. (I hope they were false). The docs came up with autonomic. I even had a cardiac angiogram which was very painful and scary. The cardiologist at the time treated me horribly, like there was nothing wrong with me. He said that he would switch my meds around and I would feel better. I asked him what meds? The only thing that I am taking is coumadin. Thats when my pcp at the time told him to do the angiogram. I have even had abnormal ekg's but they still say nothing is wrong with my heart. So go figure. All I can do is to rely on the docs and hope for the best. Vanessa

Oatmeal. It is supposed to lower your cholesterol. Mine is high also, and I eat pretty healthy. I was surprised when we had it tested, because my husband eats horribly. A junk food junky and is skinny as a rail. I eat healthy and have weight problems and my chol. is high and his is high. I have not been retested lately so I dont know if it is working or not. Vanessa

I am sending you one "GREAT BIGGG HUGGG" Hang in there. At least your Doctor is trying different meds. It shows that he is truly concerned about you. Hope it gets better. Vanessa

I also have problems with PVC's. My cardio told me that most people have them and they dont cause any problems, but with some people they do cause problems. He told me that i also have an extra heartbeat which is causing me problems. I would definatly persue why your heart stops beating and you stop breathing when you faint. When I faint it is so quick that it seems as soon as I hit the floor, I come too. my Cardio told me that it was because my b/p goes up when I lay down. Hang in there. Vanessa

I just read your post, and like you, I have to find some answers. I am in a place that has no one here who knows anything about this illness. I am on the waiting list for the Mayo clinic in Az. and Vanderbilt is waiting on my medical records from my Neurologist to review my case. I am willing to take my chances. I have been told so many things that might be causing this illness, but no one knows here. So if Vanderbilt accepts me I will be going. I am already saving up the money, and have my bags packed. I would go today if they called me. Like you, I am not accepting this illness at all. I thought that I had found some peace in it, but I didnt. I see a therapist just to try to deal with it. She told me to just give into the illness and accept it, and do what I can and dont worry about the rest. I have not been able to do it as of yet. My problem is I cant seem to do anything without paying for it. No dishes, no laundry, no cooking nothing. If I try to get up to do anything then I pay for it. Its like my body goes into shock. I am trying to find some kind of craft to do to keep my mind busy, but I also have sight problems and problems with my hands working right, so I am still looking form something to do besides watch tv all day. Hang in there, you are not alone. If you want to pm me you can. maybe we can learn to accept this illness together. Hope your spirits lift soon. Vanessa

Mididrine isnt working very well for me. I am currently on midodrine and florinef and they dont seem to do very well at all. When I get enough meds for my b/p to come up to almost normal, then my body starts doing all kinds of wierd things. Like overloading on fluids. My cardio is having me adjust the meds myself to try to find " the happy medium" as he put it. So far it is not working. Good luck Vanessa

I havent found anything as of yet. When I first got sick the docs thought that it was my heart, but it wasnt. My Cardio said that in a lot of autonomic problems they mimic heart problems. The only thing that i have found to relieve it a little is to lie down. Vanessa

Yes, and it is very demeaning. I had to go to the ER last week, and my blood work was off so the ER doc told me to follow up with my primary, so I made an appt with her the next day. When I got there I waited over 2 hours in the exam room, I was about ready to just leave when her husband came in. He didnt even give me a chance to hardly say anything. he just told me that he wasnt a pill doctor and there was nothing wrong with my heart that I was having an anxiety attack. I was so furious that I didnt even show him the lab reports. He gave me a scrpt for Xanax, even though I am not supposed to take it, and he knows it. I came home and just broke into tears. She told me that she would always be there for me, even if I just needed someone to talk to. I told my husband that I was so tired of doctors treating me like I am crazy or out for pills or something, that when I finally get my final diagnosis I just might shove them in their faces. We are at there mercy and they know it. My problem is the only very good doctors in this town are not taking on new patients, so I dont have a choice of where to go. Hang in there, hopefully it will get better. Vanessa

Wow, I had the same problem the other night. I tried my sleep meds and it didnt work either. There are very few nights that I get a decent nights sleep. I either can not fall asleep, or like you I wake up all times during the night. I have tried many many things and so far nothing works. I have suffered with insomnia most of my life, but never anything like this. I have even tried watching a boring movie, no good it didnt work. If you figure out something that works please let me know. Vanessa

I can no longer work. I have applied for disability and I think that it depends on the state that you live in as to how long it takes. It is taking me forever. I thought about a homeopathic doctor and there is one in town, but I have not heard anything good about him, plus he is very expensive, and i just dont have that kind of money. I am saving my change just to be able to go to Vanderbilt or Mayo. It is hard when you have worked and then all of a sudden you cant work, but you cant do the normal things either. Hope you find some answers . Vanessa

I was a Secretary at a very busy Plumbing Wholesale store. It was very demading. I cant work anymore. Some days I can barely stand up, and I cant always think clearly. I miss work and wish that I could find something to do. I have applied for disability and have my first Doctors appt for disability this month. I was also a go getter, always doing something. I didnt know how to relax. If it needed to be done, I did it. Now someone else has to do most things for me. Vanessa

I buy mine at the Wal-Mart pharmacy. They are not very comfortable, but i could not afford the measured ones. I wear the 30-40 and they are only $25.00. They have to order them, but they usually come in the next day. I dont remember who makes them though. I cant wear them every day because they cause a rash on me. Plus there are days that I am too weak to even put them on. Vanessa

I received an email from Vanderbilt yesterday, and Bonnie Black said all that they were waiting for was my medical records from my doctors. That it has been a while since they sent the medical release. I was so angry. I called the two doctors and told them that I would be picking the records up, So the Cardiologist charged me $25.00 just for about 8 pages, and the Neurologist said that it could be up to 10 days before they were ready. I have only seen him 3 times. I told them that I needed them now and they said that they would call me when they were ready. The problem is my doctors are in another town and it takes a tank of gas to get there and back. So I used my prescription money to go. I faxed to Bonnie what I got at my Cardiologists but I will have to wait on the others. I just hope that it doesnt take them very long. I want to get there as soon as possible. You would think that as much problems that I have been having, they would get on the ball. but the staff at these places just seem to take their time on everything. Well I have vented enough today, thanks for listening. Vanessa