Mrs. Glass

Yay Morgan, At least I know there are still some good docs around, my PCP is great also, she does not give up either. Her husband is great also. They both take time with their patients. Depression is part of being sick and not knowing what is wrong with you. If a person is not depressed then there is something wrong with them or they have nerves of superman, My old PCP told me nothing was wrong with me while I was in the hospital, and my b/p was plumeting to a dangerous low, but I won that battle He is moving his practice,and he can never treat anyone else here like a pile of dirt anymore. Glad your Doc is good, it helps to be reasurred that you are not crazy from the docs, even if they cant find out whats wrong. I wish you luck on finding an answer. Wish me luck also for I go to see the neuro for my second visit on the 30th. Hope you have a symptom free day! Vanessa

HI Stacey, It sounds like what was happening to me a little while back. Almost word for word, and my PCP told me I had a viral infection which was causing all of this havoc in my body, she put me on antiviral meds and steroids because the viral infection had ended up settling in my tempanic membrane and caused Bells Palsy. After a week on the viral antibiotics my symptoms started letting up. It may not be this but if things dont get better I would ask my PCP about it. I know that the symptoms are horrible, and Docs who just pass you off are just a waste of space. Hope you start to feel better. Have a symptom free day! A Big Bear Hug from me to you!!! Vanessa quote name='StaceyYount' date='Nov 15 2005, 06:09 PM' post='38430'] Hi, Question and a bit of a rant. Last week when I went to the traitor, I had to wait about an hour. Which of course would make me feel horrible but this was way worse. In the last 2 weeks or so my tachycardia and shortness of breath have gotten a lot worse. I though it was because the sinus infection I had was not gone. Was and am on antibiotics. And like many of you any infection makes me worse. But the thing is is that my tachy is worse sitting and laying down. At the chiros the other day laying down my hr was 113 and sitting up was 140 did not even take it standing I was to dizzy. I know some of you get this but htis is new for me, this long and this bad. I am also having chest pressure and pain but I thought was from coughing. Anyway while at dr.s my hr was just racing so much so that he noticed it. And everytime I tried to sit up I would almost faint. This is with feet up and everything. The longer I was up the worse it got. He was worried but said well you have been anemic and with the infection it could be waht could be causing it. Ok. So went to get bloodwork on thursday. Today I get call back everything looks fine. No infection no anemia! ARGHHHHHHHHHHHHHHHHHHHH!!!! And I am use to that but he had nothing else to say. ANd I am still feeling all those things. Can't sit up without the room going dark. What do I do now? Could this be something else? Is it just my POTS getting worse? I have felt that I was getting worse but again thought I was fighting an infection. Why can't this show up and have a clear answer and a clear fix. Frustrated beyond belief and don't know what to do next. Any help or suggestions? you would think after 10 years I would have this down but as we all know it constantly surprises us! Sorry if I rambled the brain fog is thick. Thanks! Stacey :-)

Lizzy, (love your name), your hospital sounds like mine. My husband took me to the hospital last month, my b/p has skyrocketed, oh they did tests, told me I needed to see a neurologist (duh) gave me to morphine shots and sent me home! I saw my cardio a couple of days later, eye drooping , slurred speech and could not walk straight even more than usual. Doc told me I had a mini stroke and asked me why the Hospital sent me home. Ask them doc, they treat me as if I dont have insurance and just pass me on like I am nothing. But it is the only hospital in the area, so I do not have a choice of where to go. I am so tired of fooling with this hospital, that now my daughter goes with me, and boy is she forceful, they hate to see me come, although I only go there as a last resort. Hang in there girl . I am so thrilled that I am not having my surgery there ! probably would not survive the ordeal ! Ha Ha. Hope you have a symptom free day ! Vanessa

Thanks to all of you for your insight. There is a lot of good suggestions. I have talked to my family about having someone come in to help out. They wont budge. The one problem is the quality of care in our little town is hideous to say the least. My children have always told us that we will never go into a nursing home or have a stranger take care of us. That is their responsibility as our children, to take care of us when we can not. I have heard this statement from both of my children ever since they were teenagers, but never realized that I would be faced with this. I have tried to talk to my daughter and she wont budge on this. In her heart to her it is her responsibility. My son will be moving in with us soon, and that will take some of the burden off of her and my husband. I do not want to be sick, I do not like the attention, I just want to be normal again! My friends very seldom call me anymore, I always have to call them. I think that they must feel uncomfortable around me. I hope that some day I will get used to all of this and stop feeling so guilty. Some days I feel like I am going to go out of my mind. I can not get my mind on anything. If I move a little too fast, it feels like my brain is sloshing and I get so dizzy and lightheaded that I wish that I could pass out just to get it over with. Well Im off the subject again! Thanks everyone for your input. Hope everyone has a symptom free day! Vanessa

yes, my thyroid has been tested, numerous times always comes back ok. what scares me is I am losing muscle mass also. Vanessa

Oh yes, it does not seem to matter if I am standing, sitting or laying down it happens to me. Luckily mine is hopefully documented at the hospital. Every time that I was in the hospital it happened and every time the nurses would take my b/p and it would be very low. It has happened while I was walking, and the doc that I had then said that it was not possible to happen while I was laying down or walking, just standing. Well isnt he the idiot! I do not have that doc anymore. He was a waste of space to the point of he is leaving town. Hooray! I live in a small town and word spreads like wildfire and people lost all trust in him, and now he is gone. I kept telling the docs that it happens other times other than just on standing, hopefully my Neuro listeded to me. I can not work, I could not take the stress. I miss working, and now am trying to get disability, but now I may not get it because I wanted to be a stay at home mom for too long. My attorney is going to fight it. Yes the bp cups are expensive. I had to get one of the digital ones, and I struck it lucky when we went to buy one they had one on sale. If it wasnt for my husband working 2 jobs I could not even get my meds. Hang in there though. Hope you start to feel better soon! Vanessa

Good Morning I have just been sitting here this morning and scanning the forum. It is what I try to do every morining. I dont sleep much so I am usually up by 4 am, no matter what time I go to bed. The ambien does not seem to work very well. I have these horrible feelings of guilt today, and I was just wondering if anyone else ever feels this way. My daughter told me yesterday that they are selling their house and going to see about buying the one next door to me. She wants to be close to me so she can take care of me. Her house is big and a lot nicer than the one next door. I feel so guilty because my family is giving up so much just because of me. I seem to be crying a lot lately. I guess that I am not dealing with this as well as I thought that I was. She told me not to worry, that this is something that she wants to do. First she quit school (she was in nursing school) so she would have more time to devote to my care, and now she is going to quit her part time job after they buy this house. I know that I will love my family living next door as we are all very close anyway, and I can see my two grandsons anytime that I want, but what they are giving up is almost too much for me to bear under these circumstances. It just seems that my families lives are now wrapped up in taking care of me. I just dont know what to do anymore. I just hope that this guilt will go away soon! Between all of this sickness, and fighting my insurance company to have the surgeon that I want and where I want surgery is about to drive me mad. Why do insurance companies try to be drs. My orthopedist said that I had to have a specialist in back surgery, because of all of my medical problems, and now the stupid insurance company said no that I have to use the one in my home town. That is scary, I know this dr. and he is the one that messed my sons knee up a few years ago. My orthopedist said not to worry that he would get it overturned, but it may take a while. Oh yeah! more time in pain and on these stupid pain pills. Im sorry for unloading on everyone. Some days are just like that I guess. Some days I dont seem to take things very well. I hate being sick all of the time, and I help this helpless feeling, where everyone around you is at your beckon call. I have always been very independent, always doing things for myself. Now sometimes I can not even get out of bed by myself. Well I better stop there. I just wanted to find out if guilt was just another part of this insane sickness, and then I just started rambling. Hope everyone has a symptom free day! Vanessa

I know what you are going through, and I wish that there was an instant answer. I also live in a small town where good docs are few and far inbetween. It seems that when my Cardio found out nothing was wrong with my heart he just doesnt care anymore. I hope that my Neuro will give me more answers. My Cardio put me on florinef and midodrine but did not tell me to be sure to drink lots of water and did not tell me to take in extra salt until weeks later when he put me on the midodrine because the florinef was not working. My PCP is in town but all of my other docs are out of town which makes it a hardship for my family due to I can not drive anymore due to my vision problems and dizzy spells. I have not worked since my car wreck in Oct. 2004 (not my fault) and I too miss working, but I have accepted the fact that I could not take the stress of working anymore. I see a therapist to help me deal with all of this craziness, and I am about to up my appointments to twice a month instead on once a month. Dont give up if this doc is not right for you then find one that is. I have even told my family that I am about ready to go to Nashville to the Vanderbilt University to just to try to get some answers, but I havent yet. Plus you have the flu and that doesnt make it any better. Keep plugging away. Hope you find all of the answers that you need. I know that I am still searching for some also. I too get frustrated as I imagine anyone who is going through all of this has at times also been totally frustrated. I am lucky my family does a lot of my fighting, If I do not get the answers from the docs, then look out doc because either my husband or my daughter are in their face demanding answers. They are tired of the shoddy medical treatment that I have been getting from the docs and the hospital here in my hometown. So I am lucky I have never been one for confrontations. Good luck in your search. Vanessa

Hi Amanda Oh yes I to get cold and then hot and then cold again. I finally told my husband to set the thermostat for his temperature and not to worry about mine. I do not know if it is from low b/p or not my pcp told me I might have a virus, but who knows. Oh yes there are days when I can not do even the simplest things. Right now all of the time because I am off of my meds until surgery. But even before they took me off of the meds, I had gotten to where I couldnt even stand up long enough to do the dishes. Although I am still in the diagnosis stage. The docs know there is a problem and have put a partial name to it, but more poking and proding still to come. I guess what has helped me. and it doesnt always work is to take everything just one day at a time. And if something tires you out too much, then try to remember not to try it again for a while, because it really gets discouraging. I find myself on mornings when I wake up feeling pretty good that I will try to do things like the dishes or hang wall paper or just anything that I could do before and can not now. Sometimes it works and sometimes it doesnt. I told my daughter that I feel like my life right now is trial and error. But I get through. She tells me to take baby steps if I cant take adult steps. I hope that you find answers. Research has helped me a lot. I have learned a lot from this website and the Vanderbilt website. Being informed is the best way to help yourself. Plus it drives the docs up the walls when you seem to know more about your health then they do. Ha Ha. Research, research research, get yourself informed. I see it as taking control of my life again, before I was just listening to the docs and being scared all of the time. not knowing what was going to hit me next. This way I was in control, not someone else. My PCP is great, she thinks that it is a good idea for anyone who has a debilitating disease to try to take some control back of their life. It is healthy for them. I hope that you have a great day. Heres a great biiig bear hug from me to you! Vanessa

Good Morining, Oh yes, the blurred vision is a definate problem. It seems worse in the morning with me. But if I strain my eyes a lot during the day it is bad at night. I can only read a few minutes at a time before my eyes go out of focus, and then I have to stop. It is hard for me to be on the computer or to watch tv anymore because of my eyesight. In me it is not from the low blood pressure because it doesnt seem to matter if my b/p is low or not. I do not know if it is caused by pots or not. I am planning on seeing my eye doc to see if there is anything that he can do about it. I know when I had my eyes checked less than 6 months ago he could not get my eyes to correct to 20/20. My eyes are so much worse now. I do not have any answers for your other questions, because I wonder myself. I am new to this site and new to being sick, so I have many many questions that have not been answered. Hope you have a great day Vanessa

Hi Jacquie I too have problems at stores. For one I can not stand for very long or walk very much. I do use their motorized wheelchairs when available. If they do not have them then I can not go to that store. I can not stand noise, especially a lot of it. It just seems to make things worse. The lights are horrible, so I wear my dark shades and I hate the stores that do cooking in them. I have never really liked to go shopping before, Now I Hate It! My daughter makes me go with her at least once a week just to get out of the house. My symptoms are worse when I get home and all I want to do is to lie down. I can not drive any more, so I gave up my license, that was hard to do. But then it wasnt safe for me to drive anymore. I have filed for disability, and it is a long stressful battle. My docs seem to think that eventually I will be better, but then they dont know very much about this disease. I hope that my Neurologist can give me more answers than the other docs have. I just seem to always be running into brick walls with them. I need someone to come in and sit with me when my family can not be here, and all I needed was a statement from one of my docs stating what my diagnosis is and my prognosis,My primary said that my Cardiologist has to do it, and my Cardiologist because he was the one that diagnosed me, and my Cardiologist said that my Primary has to do it. So like I said I have run into brick walls. Well boy did I get off of the subject. Sorry about that. I thought that it was just me not liking to shop is why my symptoms seem to be worse in stores, but I can see that I am not the only one. Hope that you are not one who loves to shop. Have a great day! Vanessa (theycallmemrsglass)

Morning to All, Thanks for all of the good responses. They have answered a lot of questions. I always fought my weight, ever since my first child was born. No matter what I did I could not lose weight. Now I do not even have to try and it just seems to come off. Yes, I do have an aversion to food, but then there have been months even after I got sick that I did not lose one pound, even with eating like a bird. Food always causes my stomach to hurt, and I too if it wasnt for my family probably would not eat anything. My docs dont seem to notice that I am losing weight like crazy, but I am also losing muscle mass. Right now they keep telling me that I have to be no more than 150 lbs. I have tried to tell them that this is not normal for me, but they do not think anything is wrong, so what can a person do. In October of 2004 when I had the car accident I weighed 240(I think) and I did not lose any weight until about March, then I was losing 10-15 pounds a month, and then nothing, now I am losing apprx. 1 lb. every other day. I have been eating (only because my family forces me) but I am still losing it. I now weigh 172. I had put on a little weight when I started the florinef, but now that I am off of it, it is coming down again. I dont mind the weight loss, but the muscle loss does bother me. Thanks again for all of the input from everyone. Have a great day. Vanessa (theycallmemrsglass)

Hi Joanie, I was taking Cymbalta for severe depression. Although my Cardiologist took me off of it. He told me that it upset the Autonomic System.It did not seem to help very much for the depression. I hope that my Neurologist can give me some more knowledgable answers. I have seen on this forum that a lot of people are taking meds that my Cardiologist told me that I could never take again. So I guess only time will tell. Have a great day! Vanessa (theycallmemrsglass_

Good Morning Amanda, You have come to the right place! I too thought that I was all alone in this. My diagnosis is not totally complete yet. I know that this site will not take away the disease, but I found out that I am not alone in this. Even though I am not talking face to face with all of these people, I know that they are there going through the same things that I am, or similar. I am still scared, sometimes I think that I am going to wake up from this nightmare some day. What I found that works better for me in coping, is one, get involved in your care. Do research, and meditate. If you do not understand what your Dr is telling you then ask him or her lots of questions. Try to find a Dr. that knows something about POTS or at least is willing to do research to learn. Imerse yourself in your family or something that will take your mind off of it at least temporarily. All of these suggestions may not help you, as sometimes they dont help me, but all we can do is try try try. See you in cyberspace. Sending you a great biiiig bear hug !!! Hope today brings you peace. Vanessa (theycallmemrsglass)

Good morning, I was just wondering if anyone else had problems with weight problems as I do? Before all of these medical problems I would have to diet like crazy and walk at least 2 miles a day just to lose 2-3 pounds a month. Now I dont do anything and lose at least a pound every 2-3 days. It is not continual. When I first got sick I didnt lose any weight then all of a sudden I started dropping the weight. Then it would stop. I would not lose any more weight for a while. Now I am starting to drop the weight again. I know that I need to lose weight, but I am not doing anything to cause it. The Docs say that I need to be down to at least 150, because of the osteoporosis. I was just wondering if this has anything to do with POTS or not. Hope everyone has a great day! Vanessa (theycallmemrsglass)

Hi, I know that I could not handle a lot of things without my therapist. She is teaching me different relaxation techniques, and I can say anything to her. I let my hair down to her so to speak. I try to stay upbeat for my family and friends even though sometimes I want to scream. She helps me just by listening sometimes. I am so glad that my family insisted on me going. Even before I knew that anything was seriously wrong with me. I wasnt coping just being sick. You need to try it. I can not go without my life coach as I call her. She is great! There is no shame in talking to someone that can help you with words or just a big shoulder. Hang in there, Find your Peace, Try Meditation. Sometimes it works for me sometimes it does not. Hope you start feeling better real soon . Sending you a great biiiig bear hug. From me to you. Vanessa (theycallmemrsglass)

Hi Carmen IV's are out of the question. That would mean that I would have to go to my local hospital, The last time I went there I was having a stroke due to my b/p going too high, and they treated me for a general headache. Gave me a shot of morphine and sent me home. My cardio was furious to say the least. He is in another town. I do not like condensed soup, but I do like saltines. Will try them. My problem is that I have not put salt on my food or in my food since 1974, and now it seems like I have to eat it all of the time. My cardio put me on extra salt, and then took me off. I hope that the Neuro has more answers for me. The biggest problem is no one in my area has much or any experience with this dreaded disease. But the one good thing is my Neuro said that he was going to be doing a lot of research on it to help me more. I tell you if I could I would go to one of the research centers like Vanderbilt just to find out all that I could about this. At least there they are not fiddling around in the dark. My cardio took me off of the meds for depression and anxiety and I tell you there are days that I wish that I just could have slept all day, but then I do not sleep so well anyway, even on Ambien I usually wake up anywhere between 2 and 4 am. NO matter what time I go to bed. But it is another day, and I am going to make the best of it. Have a great Day! Vanessa (They call me "Mrs. Glass")

Hi, Julia My surgeons name is Dr. Misenhimer. I saw him on Tuesday,and he said that I do definatly need surgery. His office is supposed to call me to set up a time to have it done. The one scary thing is that it is on an outpatient basis. That is the only way my insurance will pay for it. At this point I do not care if he does it in his office, I just want some relief. The pain pills are starting to upset my stomach, no matter how I take them. Hopefully they call me today. I have always had adverse reactions to meds. They may be ok at first, but then something happens and they start making me sick, or hives or something else.Thanks for the tip on the V-8, I will try it. Yesterday was so horrible that I just stayed on the couch all day. Every time that I tried to get up to try to do anything I would be so dizzy, and my legs felt like they were going to buckle under me. So I just layed there. Hopefully today will be a better day. Looking forward to no pain in my back or legs! Hope you have a great day. Vanessa

Sorry to hear you have so much of this in your family. I do not know what is going on with me. No one in my family has ever had any Neurological problems, Grandparents lived to late 80's and 100's. Parents died young, but not from anything associated with this. My Neuro asked me over and over if there is any family history, or if I have had any severe neck injuries, and the answer was no to both. Everything that I have read it is either due to genetics or severe neck injury, but I have had niether. Anyone have any ideas? Vanessa

Hi sorry I havent replied before now. Too many Drs. Appts. out of town. They took me off the florinef because the pain medication that I am on mixed with the florinef and the midodrine was causing my bp to rise to high. At least that is what they think. I see the Neurologist on the 30th. Hope my surgery is over and the pain pills are over, I want him to manage my meds. I think my Cardiologist is just guessing. But I will just have to hang in there until that time. Thanks Vanessa

Hi, I was on Cymbalta for several months for severe depression after I got sick. It wiped me out too. I had to take it at night or I could not make it through the day. I took 60 mg a day. It didnt seem to help the depression or anxiety much. The side affects never did lessen in me, but then I am very sensitive to meds.It was making all of my symptoms worse. My Doc told me that it affects the autonomic system and when he discovered that I was having problems with it he took me off of it. I was also taking Welbutrin in the morning, and he took me off of that also. My Neuro has taken me off of everything except the Coumadin, Ambien, and Senocot temporarily. He wants to see what my body does without the drugs. Oh yeah! I am loving that very much. I got up this morning and my bp was 80/38. I can see what kind of day I am going to have,and all of my other symptoms seem to be worse.Hope that the Cymbalta works better for you. Smile Today, it will make the blues vanish (if only temporarily) Vanessa aka (Mrs. Glass)

HI, I have had a bone scan with the contrast, and it was not too bad. I had the whole body scan to check for hot spots because I am allergic to metal, and I had 3 metal screws in my leg. I have had numerous IV injections of the radioactive isotopes. It is scary, but that is about all. I did not have any adverse side affects. I thought for a while there that I was going to start glowing in the dark. (Ha Ha ). The test itself did not take a long time. I had to go in for one injection, and then come back that afternoon for the IV and the test. I have had other tests that were a lot worse! I do not think that it is the same, although I may be wrong. With this test they took the injection from a radioactive container, and when I had the cat scans and the mri they did not. I wish that I could take vit. D and calcium, because my bones are so brittle, but I cant . the docs said that there is nothing metabolic causing my osteporosis, it has to be genetic and I cant take any of the medicine, because I have kidney problems. My cardiologist and neurologist took me off of all my meds (that I can live without) until I get back surgery and he has finished his testing. I will be glad when all of the testing is over. I have the symptoms of PAF, but you know Docs, they have to do their tests, no matter how painful they are. I go in on the 30th for 2 MRIs and an EMG, and from there I have no idea. I get very frustrated with all of these tests. They took me off of the meds for depression and anxiety and now they say that I have to learn meditation. Wow I hope it works! Hope your tests go ok. Try to go in there calm and I have found that if you are claustrophobic, close your eyes before you go in the MRI machine, and think of wide open spaces. Dont open your eyes and it works for me. I am very claustrophobic. Hope this helps you. Hope you start feeling better soon. Vanessa aka ( Mrs. Glass)

I have had my heart checked inside and out and the only thing that they have found is I also have an extra heartbeat and I keep having pvc's and pac's, my cardiologist told me that it was normal. I wanted to scream at him that if it was normal they would not have a name for it. But other then that my heart is ok . It did sustain a little damage when I had the mini stroke, but not much. I hope! I will just keep plugging away and trying to find decent Drs. which around here is next to impossible.My blood pressure has fallen as low as 68/35, that night I landed in ICU, I was smart though. I got copies of my vitals from the hospital from every time that I was in the hospital. It was surprising how many times that my blood pressure was extrememly low and the nurses or doctors never said a word to me. But this web site has helped me so much. I know that the people here know what I am talking about. I don't sleep much, so early in the morning I get on the internet and go to Dinet, I think a lot of it is for comfort. Some of it is trying to take control of my lifel. This web site has helped me. I'm glad that I found it .

I have had a bad day today. I did not realize how much the florinef was working until the Doc took me off of it to get through the back surgery. My heart has been racing all day and my blood pressure can't make up its mind if it is going to be low or high. I have been so dizzy today that I wish that I could pass out just to get some relief. I see the surgeon on Tuesday and I am going to tell him to please do this surgery as fast as he can. I have to get back on my medicine. The bad thing is I am on Coumadin for a blood disorder and everytime I have to have a procedure or surgery I have to go off of it and risk more blood clots. But to get rid of this horrible pain in my back I am willing to take the risks. I know that one day I will get used to being this way, or maybe I just have to accept it, but today is not the day. Maybe I am on a pitty party, or something, but there are those days where I can't get past how I feel. I am always so fatigued that I can't even stand long enough to even do the dishes. So my husband does everything. The bad thing about it, is we had just bought a fixer upper house as a project for the 2 of us to work on. Now it is all up to him. Well forgive me for being on this pitty party. Does anyone else have days like this? I sure hope not! It's horrible. Vanesssa

I havent been checked for Asthma, every time they check my oxygen level it is normal. I told them that I am afraid to go to sleep, afraid that I wont wake up. On my last MRI they had to keep telling me to breathe normally they said that I was holding my breath. I told them that I was not doing it on purpose, it just seems to happen. Sometimes it seems it takes all the strength that I have just to make my lungs work. I am so tired all of the time and tired of Doctors who know nothing about this disease, or whatever it is called. I try to stay in a good frame of mind for my family, because it is very hard on them seeing me like this. They are used to me helping everyone else, always on the go. I used to be a very active person, now I dont even feel human. But for their sake I will keep up the fasad.