Mrs. Glass

Welcome to our little part of the world. I wish that I had the magic answer to your questions, but I dont. I have only been going through this for a little over a year,and cant imagine what its going to be like in eight years. My suggestion to you is to seek out a Dr that specializes in Dysautonia problems. There is a link on this website that has a doctors list and where they are located. I live in the middle of nowhere, where there is not one dr here that specializes in this. So I am trying to get into Vanderbilt. I have only been partially diagnosed, but that doesnt stop the symptoms, or make my life any better. My doctors are in over their heads,and I have had test after test to find out exactly what is wrong with me, and the meds that they have me on so far either dont work at all or they work too well and I ended up having a minor stroke. So you see a lot of us are in the same position. I agree with you that we have to be our own advocates. When Im too weak to be mine, my family does it. If it gets too stressful, they take over. I am sick of doctors to tell you the truth. Some of them are just a waste of space. My cardiologist is a great doctor for the heart, but he is in over his head with me. More guessing than anything else. But I still go to see him, I guess because I am scared not to right now. Hope you find a doctor that will listen to you. Dont give up they are out there, we just have to keep searching. The internet is a great tool. Vanessa

You are not alone. Upon everything else I have glaucoma , but some of the problems with my eyes are not related to it. I can not be in a brightly lit room, I could not even look at the Christmas lights without it causing pain and nausea. It has always been a tradition in my family that on Christmas eve we all go out and drive around town to look at the Christmas lights, and I was not going to miss this year. I should have though, by the time that we got home I was in horrible shape. I just hope that I did not ruin it for everyone else. From everything that I have read, vision problems go along with this disorder. You know I never know whether to call it a disorder, an illness or a disease. It is so life changing that Im just not sure. But yes eye problems are all part of it. At least in my life it is. Vanessa

sorry to be so late on responding, between the holiday, and this stupid illness, I have not felt very well at all. No all he has tried me on is Florinef and Midodrine. He has put me back on the Florinef and the Midodrine as well because my b/p started dropping dangerously low. It is not any better though. Yes I do drink a lot of water and salt is my main food group these days. Nothing seems to help. Thanks for the suggestions though. Vanessa Thanks for the link I will check into it to see where the nearest one is to me. Vanessa

havent tried yoga yet. My therapist suggested it but wants to wait until i get some strength back. Thanks Vanessa Hi Belinda, just looked in the telephone book and no we dont have any here. This is a small town and I have to go out of town for most of my doctors, but none there either. I agree my Cardiologist is over his head, and I just hope he doesnt make things worse. Thanks Vanessa Hi I have checked on the Dinet home page and this is as close as it gets. I just hope that I can get in. I am so tired of messing with doctors who dont know what they are doing. But I am going to keep looking and begging Vanderbilt if I have to. My family will not let me give up. Thanks Vanessa

Hi Ben Thanks for responding. I agree with you some doctors are idiots. If they dont know how to treat a patient then they just should refer them to someone who knows. I have just finished typing a letter to Vanderbilt University Medical Center begging them for help. I am getting all of the forms filled out to fax to them. My b/p has been dropping dangerously low for over a year that I know of. Maybe longer. my memory is not what it used to be,and I get confused very easily. I thought that my Cardiologist was a good doctor until yesterday. He acted like this was my first visit or something.I know being on the florinef I am going to take it slowly, I dont want to have another stroke. I got lucky on the last one it was just minor. The next one could be worse. I really dont think that he knows how to administer the florinef, because when he first put me on it he did not tell me that you had to take in extra water, and he just told me that the salt was to help raise my b/p. I found out on the internet after I had stopped taking it. I just hope these doctors dont end up killing or crippling me trying to help me. Some times I think that their egos get in the way of their patients best interest. When my b/p is low the only way that helps is for me to lie down. I have tried putting my head between my knees and I feel like I am going to pass out. Hopefully I can get into see someone who knows what they are doing, because this is getting very old and expensive. The new year is upon us and that means that I will have a deductible and have to pay 20% until I get my out of pocket expenses paid for the year. Last year it only took 2 months. But the medical bills are outrageous. I will be paying on them forever. Thanks for responding. Vanessa

I saw my Cardiologist yesterday, and after sitting in his waiting room for almost an hour and in the exam room for two hours, it was such a waste of time. Every time that I think that he is finally going to start to do something to really help me, he pulls one of these duhs!!! My b/p was extremely low and my pulse was very weak, and he had the gall to ask me if my b/p was this low before I had back surgery. I have been going to this doctor for almost a year now and it has always been low. He is the one that ran all of the tests and put me on all of the meds. He put me back on Florinef which is scary in itself, because I had the stroke after he put me on it the last time. And then after I told him that I was scared to go back on it, he said that he shouldnt have raised the dosage so fast, and that he shouldnt have just told me to stop it, he should have tapered me off of it. I just wanted to scream, but of course all I could do was to cry. It was like " uh, have I seen you before"? And also I asked him if my continued extremely low b/p was doing any damage to my heart or brain, he just danced around the question, and never really answered it. He just started explaining how some peoples bodies are geared for low b/p and some are not, and evidently mine was not, or I would not be feeling the way that I do. It was like he knows the answer and will not tell me. I just want to be told the truth. I started to ask him if he was on drugs or something. I mean he was the one that gave me the horrible prognosis for my life, and now he wont even tell me if my vital organs are being damaged or not. Get real this is my life, what is left of it. Well my husband called me on my cell just to see how close to home that we were, and I told him that I barely got out from seeing the doctor,and told him what was going on, and my husband blew, he insisted that I get ahold of Vanderbilt and beg if I had to, just so I can get competent doctors to help me. I hate it when my husband blows up, it is so unlike him. Before I got sick, nothing ever made him get mad, and now look out docs because here he comes. Thanks for letting me vent it was a very frustrating day,and I really got no answers at all. I am scared to take the Florinef, because of the last time that I took it, but I am going to keep closer check on my b/p this time, and I have read up on Florinef, and I know how to take it now, which I did not before, and the doctor failed to tell me. Wish me luck on getting in at Vanderbilt, they are my only hope right now. Vanessa

My vision is horrible, but worse when my symptoms are worse. Some morinings I get up and can barely see enough to get to the bathroom. Although I do have Glaucoma, and the beginning of Macular Degeneration. I dont know if those two are causing it or this other stupid disorder. My eyes seem to be getting worse day by day. I do have an appointment with my eye doc next month though. I would ask him, but he doesnt know anything about autonomic disorders. Vanessa

I too have those nights where my ambien does not work, dont know why though. But I can not work so I can sleep the next day. Wish I could help you in some way. Heres hoping that you get a good night sleep tonight. Vanessa

Welcome Kelleigh, yes I too have these symptoms which are scary, but do not hold back telling your doctor. He or she needs to know everything that is going on with you. My first doctor told me that It was all in my head, and to just stop worring and get a job, so when my family insisted that I get a different doctor I was hesitant to tell him everything. Good thing one of my family members was there because what I left out they filled in. I am still hesitant about telling him everything, but I know that I have to, to get a proper diagnosis. If they do not know what you are going through it is just going to take longer for them to diagnose you. Hang in there. Vanessa

Dont know, my doc thought that it was my gallbladder, but it is ok, and he hasnt said anything further about it. but if you find out please let me know. I dont eat much anymore because of the nausea and bloating so if I could get some answers too it would help. Vanessa

Jacquie, I wish that I had the answer for your question. I can not even go to the bathroom without getting fatigued. My doc says that it will probably go away when he gets my b/p to stay up for a while, but I dont know. I have to send my husband or my daughter to do my shopping. The only time that I get out anymore is when I have to go to the doctor. Wish I had answers for you. Vanessa

Thanks just what I needed this morning, a good laugh! Have to go to the Cardiologist today,and dont want to. I guess funny things do happen to us after all. Vanessa

Bamagirl, when I read your post I cried for you. I wish that I could just reach through this computer and give you a big hug, just to let you know that someone cares what you are going through. I agree with all of the other posts, you need to reach out to someone. Dont lay there alone, there has got to be someone who can be there for you. If all you can do is to talk to someone on the phone, that will help a little bit. I too have feelings of ending it all at times, but then I look at my family, and think of what it will do to them. Also I look at my Grandsons,and think oh my God if I do this it will give them an option when things go bad. I have to fight those feelings of doom all of the time. I have a great support system with my family and my therapist. Even though she is on Holiday leave, she told me that if I needed her, she was only a phone call away. Hang in there girl. Call your doctor and tell him that you have got to get some relief of some kind, even if all he can do is to give you something to help you sleep. I wish that I could take all of your pain away, but all I can do is to let you know that I am here, and I understand. My prayers are with you sugar, hang in there. Vanessa

Yes it happens to me all of the time. Also sometimes I do not know that I have to go until I have already wet my pants. I now wear depends when I go out. And at home I have pads where I sit and lay. It is frustrating. I tried wearing them at night but they caused a rash, so now I am going to buy a rubber sheet just to save my mattress. It is embarrasing. I am only 48 and I never thought this would ever happen to me. Dont get the ones that are plastic lined they are horrible and make you sweat, which is worse than peeing on yourself. Vanessa

I havent been around for a few days, because I have been on the couch. I have not been able to sit at the computer, or see good enough to type. My b/p has been dropping drastically for the past few days and nothing is helping. I have tried extra water, salty drinks, and foods and nothing seems to help. I take 10mg of Midodrine a day,and 2 hours after I take the meds I have to take my b/p and it does not help at all. I still cant get back in to see my Neurologist, my husband is going to call today,and demand some answers. I have an appointment with my Cardiologist in March, but when I called his office, they wanted to see me as soon as possible. Which is Thursday. He is booked tight until then. He did say that I needed to go to the ER, but I just laughed,and told him that they would not do anything for me, he said that if it got any worse, or if I started passing out or if my heart started acting up again, to call him before I went to the ER and they would start treating me right. Our ER is horrible here. They will admit someone who is dehydrated, but send someone home who is having a stroke. This hospital has been sued over 100 times just since they opened the new building, and lost every law suit due to negligence. I am actually scared to go there, but it is the only one within 80 miles. Hopefully the doc can give me some answers on Thursday. I just keep wondering what is happening to my brain, and heart when my b/p is so very low, I mean are they getting enough oxygen, and if not what damage is happening. I better go my eyes are graying out again, so I know that I have been sitting up too long. Thanks for letting me vent. Vanessa

I just want to thank everyone for all of your support, and kindness. It has helped. I know that my family needs me, and I love them all very much. I dont know what I would do without the support from all of you. There are a lot of minerals and herbs that I can not take because of the Coumadin that I have to take every day. My Cardiologist took me off of all of my meds for depression, he said that it messes with the autonomic system. The thing about it is since I have been off of them I am no better, and I have told him that but he either is not listening to me, or he is not understanding me. I still dont have another appointment with my Neurologist. I called yesterday and they didnt know what I was talking about and told me to call back in 3 days. Very frustrating! I go for another cat scan today, because in June they found a mass in my chest, so I have to have another one to see if it is still there. I really hope that all of the xrays, cat scans, mri's and nuclear tests that I have had this past year are not harming me. I am almost afraid to ask. Well I am not seeing so well this morning and it has taken me forever to type this out so I will go for now. Thanks to all of you. Vanessa

Nope, just everything tastes wierd. I thought it was the meds messing with my taste buds. Vanessa

Nope never seen one. My cardio has never mentioned it either. Vanessa

I have read a lot on here about ablations, just what is an ablation? I have never heard of it before. Glad you had a good experience though. Vanessa

I have started having the sensation of pins and needles lately, I thought that it was due to my back surgery, but he only messed with the right side. So I dont know any more. They are not bad, but just annoying so far. When you find that store for new bodies, let me know I could use one too Hope you start to feel better. Vanessa

Ernie dont feel bad because you kept a secret. It is harder when you voice it than when you keep it sometimes. We dont want to admit that we are terribly sick, and that is ok. It is hard to accept. You are only human, you have fears just like the rest of us, hang in there. My prayers are with you. Vanessa

I had an appointment with my Psychologist yesterday, and I got nowhere. All I could do through the whole session was to cry. I am so tired of everything lately, and now the holidays are upon us and I dont feel in a holiday mood. My daughter and grandsons decorated my house, and that didnt even help. I am so frustrated with my life right now. I hardly ever get to see my husband because of his two jobs. When he is home he is always so tired. I try not to ask him to do anything for me, but he cleans the house and does the laundry in between his jobs. I feel so guilty that he has to go through all of this. I just wish sometimes that I could just go to sleep and never wake up. My family would be better off. I told my therapist that yesterday, and all she could say was that it would not solve anything. It would take some of the stress off of my family. I just dont know how much more that I can take. My eyesight is getting worse and worse so I dont know how much longer that I will be able to sit at my computer and talk to everyone. This forum is my lifeline right now, and I cant bear the thought of not being able to talk to all of you. You are the only ones who understand what I am going through. I am depressed all of the time and my docs wont let me take anything for it. Some times I just want to scream. I am sitting here crying right now trying to figure out what I can do with the rest of my life to be productive,and nothing is coming to me. I feel like I am being punished for something , but I have no idea what it is. I have always been the one to help others, doing whatever I could to help when someone needed something. I want that life back! I hate being the one that always needs the help, and my doctors dont seem to be taking any of this seriously. I saw my PCP last week because the senocot was not working and all she told me was that I needed to move around more. I WISH I COULD! I wanted to scream at her for her just to help me, but I kept my mouth shut. Thanks for letting me vent. It hasnt helped, but it was a good try. Vanessa

I am so sorry for your loss. I wish that there were words that could take your pain away. But remember to take care of yourself. You can not do anything for her family, since evidently they dont consider you family. Hate is a horrible thing and it will fester in a person and grow. I too am estranged from my siblings, some of them I have not seen or heard from since my Mothers funeral in 1993, but I have come to grips with it. They dont care anything about me, so I concentrate on the ones who do. My children, my husband and my grandchildren. I wish that I could just reach through this computer and take all of your pain away. My prayers and thoughts go out to you for a better day ahead. Vanessa

I too have student loans that I would like to have written off. Mine is with Sallie-Mae, as I have not been approved for disability as of yet they wont even consider it. So I have to keep paying every month. They will only let you have 1 years grant to wait on payments, and I have already used that due to hardship. So I have to pay them until my disability comes through. What I would do is to write to them again and explain what you have explained to us, that you were in denial, and that you wanted to show everyone that you could do this. It may not work but it is a try. Also get another form for your doctor to fill out, and take in the reciept and the cancelled check to them to show them that you paid them once and they lost the form, and you should not have to pay for it again. I know beurocracy is hard to get through some times. That is why I hired a disability group to handle my disability claim. Hope you get some answers. Vanessa

When I first started getting symptoms I was walking twice a day. It was therapy for my back after a car wreck. Then one day I could not walk it I was so weak that I could barely make the block. My heart was beating funny. It would beat then vibrate. At night it would race so fast that I could not sleep. The fatigue got to the point that I could not walk by myself, and my b/p would drop so low that it could not be read. I ended up in the hospital 4 times for the same thing. And once in ICU because my b/p was so low. My docs thought that it was a blockage in my heart. After all of the testing it was not. Now I am still going through tests to find out what it is. All of my symptoms point to Shy-Drager. One doc said that it was a good posibility, and another one said he wasnt sure that he would have to research it some more. In the meantime I am still suffering, and no closer to a dx than when I started. It has been a long hard year. beginning symptoms fatigue, heart beating wildly, low b/p, dizziness, weakness, fainting, and near fainting, headaches, vision problems, constipation, and I can not remember all of them. But the symptoms are getting worse with time. Now I can not walk without a cane as I am afraid that I will fall. Hope this helps you. Vanessa