Mrs. Glass

Oh yes sounds very familiar. Most of the time I can tell when my b/p drops, but sometimes I will take it and it is low, but not drastically, it is very frustrating, because just when you think that you can tell when your b/p drops then this stupid thing throws you for a loop. I usually dont tell anyone either. I sometimes think that I am making it up. So I just keep my mouth shut. My friends are calling me less and less. I dont know if they just feel uncomfortable around me, or if life is just getting more tied up, but I do know that I get very lonely. I had decided not to call them, if they want to talk to me, then they can call. I guess that is probably the wrong attitude to have, but I dont want to impose on them any more. I try not to tell my husband or family because I dont want them to worry any more than they already do. You are not alone in this I dont know if anyone else has this problem, but I know that I do. Hope you have a symptom free day. Mrs. Glass

I went Wed. and had my MRIs and it took an hour and a half. The problem is when it was over, I felt horrible. My eyes were very blood shot, and any light would hurt my eyes and it seemed like the littlest of sounds just set my symptoms off. Even the sound of the fan. By the time that I got home, all I could do was to go into my bedroom and lie down and close the door to make it as dark as possible and try to drown out the noise. I felt horrible for the rest of the day. Today I go for my EMG, and I hope that it doesnt do the same thing. My Neurologist is actually coming in on a Saturday just to see me and to do the EMG, because he could not see me on the day of my MRIs. That is dedication. I think that I will keep this Doctor. He actually seems very concerned with my medical problems, and seems to want to get to the bottom of this. Well if anyone has bad reactions to an MRI please let me know, that way I wont think that I am just weird or something. Mrs Glass

Sorry that I have not responded until now. Yes I did have a few problems with general anasthesia (sp?) In August I had general and I was very nauseaous for a solid week, and my b/p was lower for a time, the sluggishness lasted for almost 2 weeks. The 25th I had back surgery, and it was almost cancelled due to my low b/p, but the anasthesiologist put in an A line and kept my b/p perfect. I am still recovering from surgery. My b/p was very very low after surgery, but they kept pushing IVs and by the time that I was released it was still low but not dangerous, and also I have terrible problems with constipation. It seems that my bowels just totally shut down and nothing is going to make them move. So I have to have enemas just to keep from being poisoned. But I think it all depends on the person because I have read where some people dont have any complications at all. Boy are they lucky! Good luck on your surgeries. Im sure you will do fine. Mrs Glass

Welcome Sue New sorry I havent responded until now. Sorry you have to join us also but you have come to the right place for big shoulders and support. There is a great bunch of people here. Talk to you soon Mrs. Glass aka VAnessa

I didnt know that you were not supposed to just stop the florinef! When my cardiologist took me off of it he just stopped it suddenly. It scares me now that maybe he doesnt know what he is doing. Any advice out there? Mrs. Glass aka Vanessa

I was on Celexa for depression and anxiety didnt help at all. Never heard of it for breathing problems, but then docs do use meds for different things. I didnt have any bad side affects from it though. Mrs. Glass

Hi Kim, sorry I havent responded before now ,had to have surgery on my back, and this is the first day that I have been able to sit at the computer for any length of time. You have come to the right place for support, understanding, and maybe some answers. Sorry that you had to join our little group here but since you do welcome! I am relatively new to this site and it has helped me a lot. Some times a person just has to vent to people who know exactly what they are going through. All of the symptoms that we go through on a day to day basis, sometimes is almost more than we can bare, but at least we have the support of this lovely group. Hope you get some answers to your questions. Mrs. Glass aka Vanessa

Well I go today to get my first MRI on my head. For one thing I do not like to be in that tunnel of a machine, but at least it is not painful. The only problem is I have to travel so far to get it. My Neurologist is 80 miles away, and with just having back surgery, it is not going to be fun. Although they did reschedule my EMG for Saturday. He is going to come in on a Saturday just to do it, so it will not be so hard on me. He did not want me to have to be there for so long on one day. I think that I am going to like this Doc. I was going to do a little Christmas shopping while there, but with my back, I dont think that I will be able to. Maybe on Saturday. There is only one store that I like that does not have wheelchairs so I wont go there. Well wish me luck, hope the MRI shows why all of this is going on, but I hope that it is not too bad. Mrs. Glass aka Vanessa

Sounds like your body is putting you through the ringer. Hang in there hope you get rid of that horrible migraine. Wish my magic wand wasnt broken, then none of us would be suffering with this stupid illness. Heres a great big HUG just for you. Mrs. Glass aka Vanessa

Oh yes anxiety is a common factor in my life. At first the docs thought that was all that was wrong with me, but the meds did not work. I too see a Psychologist just to help me to deal with being sick all of the time. She is great, she is teaching me relaxation techniques to help overcome some of the anxiety. It helps some but does not take it all away. Mrs. Glass aka Vanessa

I always have problems sleeping. I am on ambien, but doesnt help much. I only sleep about 4 hours a night. If I dont take the ambien then I dont sleep at all. About once every two weeks I will sleep about 11 hours but I have trouble breathing while sleeping. I will wake up gasping for air. I am also afraid to sleep, maybe that is why I dont sleep much, but it gets very tiring! My husband raised the head of our bed, and that seems to help with my gasping for air some. It is a lot better than before, also if it is too warm in the bedroom, I cant breathe either. Which is hard to control the temperature as I am either hot or cold, and my poor husband is always freezing in the house. Mrs. Glass aka Vanessa

Both of mine drop, it has been so low even lying down that the machine would not register it, but I still did not pass out. Probably would have if I would have set up. My b/p is all over the board only thing is I have had such low blood pressure for so long. Any spike in my b/p causes me to have mini strokes so this is quite a delima for my docs. I have to monitor my b/p very closely. But I have been going at it for so long that I can tell just by how I feel if my b/p is high or low. Mrs. Glass aka Vanessa

Well the surgery is finally over, and boy am I glad. It was almost postponed due to my low b/p, but my surgeon explained to the anesthesiologist (sp?) that the docs could not regulate my b/p until he fixed my back. So he finallly agreed. I was really scared, but I made it through it. I lost more blood then usual, but I came through ok. I am having a really bad time with my b/p right now as it is low and when I stand up it really drops to the point that I almost pass out everytime. They had to put in an a-line to control my b/p and the surgeon said that the anasthesiologist earned his money that day, but he kept my b/p perfect, He could not do it ortho so I have a 4 inch scar on my back, and it is very hard to get around. I may be able to sit here to type out this but I know that will be all. I am hoping that I will be able to keep my appt with the neuro on 30th. as I do not want to delay this any longer. Plus I have met my out of pocket expenses for the year and my insurance will pay all of it. So I will just have to see. I will wait a couple of days before I start to set at the computer again for any length of time. Talk to you all later. Mrs. Glass aka Vanessa

Many of the symptoms you have described are very real to me also. Although I did not know that it was called flares. What I am going through the worse right now is sounds. Any sudden sound will set my body off. I hate it! The telephone rings, or my grandsons are a little too loud, even my little dog yapping will set me into a tailspin. So everyone is trying to keep it as quiet as possible for me, which I hate even more. Dont know how long this one will last hope when it is over my body will give me a little break before it starts something else. So here is a list of the ones for me. Vision, dizzy, nausea, tingling sensation, insomnia(even with ambien cant sleep),twitching, gooseflesh, low b/p, also every time I move my head or my eyes. Hope this helps you some. Vanessa

I have to wear the pantyhose type due to clotting problems. I hate them but they keep the blood from pooling in my legs and abdomen. My b/p is higher when I wear them sometimes. My docs told me that I had to wear them for the rest of my life, that I could not be without them. I do not wear them at night though. My b/p always goes up when I lay down, so they do not want them on me at night. Now on days that I am bedridden I am to wear them all the time. Sounds like a contradiction, but I also have problems with clots. Just one more thing upon all of the other things. So I wear them even if I do not like them. I just figure that I do not have a choice, but a walmart you can order colored ones where you do not have to wear the ugly white ones. The strength that I have to wear is 30-40. I have to get some more as I have lost so much weight and muscle mass that the ones that I have are too large now. That will give me 3 different sizes now. I will just keep them in case meds make me gain weight. Hope you find the answer that you are looking for. Vanessa

I do not think that you are being difficult or noncompliant. You are just wanting a little normalcy to your not so normal life. I can truly understand that. I know the frustrations of the meds verses quality of life issue. As I am sure most everyone here does. Right now our quality of life stinks! All you are asking for is just one little day, thats all. You know how you feel, but it is all up to you. My cardio told me to start back on the midodrine and my neuro told me not to , so what is a person supposed to do. I am going with my neuro on this. since my cardio is being a total waste of space right now. I wish that I could wave my magic wand and tell you what to do, but my wand is broken. Go by your instincts is the only advice that I have for you. Follow your gut feeling, and it will not lead you the wrong way(at least that is what my mom always told me). Hope you have a nice holiday. Wish I could help you. I am sending you a ((BIG HUG)) from me to you. Vanessa

I just lie down, not being treated for tachy as of yet. I dont think my docs know how to treat me. It is so frustrating. Mine has gone up into the 140's also. I record my b/p and pulse twice a day,and sometimes more. As per my cardios request, have been doing this for months now, and he has not looked at it once. How is he going to know what is going on at home if he doesnt take the time to even open up my book. Frustrating ! I hope you can find out what works for you. If it works let me know because I will try anything at this point to get some relief. Happy Thanksgiving. Vanessa

Hi, have nausea all the time, no vomiting yet. sometime wish I could just to get it over with. I had my gallbladder checked said it was fine. My stomach bloats and hurts if I put anything in it. Hope it doesnt get any worse. Hope you find some answers at your new doc. Yes it is very hard to be sick all of the time. Sending big hugs your way. Vanessa

I leave for El Paso today for surgery first thing in the morning. I am very scared and nervous about it. I got really sick yesterday. I think that I tried to do too much. My daughter is here preparing our Thanksgiving feast, and I kept trying to help her, but would get so dizzy that I would have to lie down, and then it was time to make the cobbler with my oldest grandson, and I barely made it through the whole ordeal. I got it in the oven and had to tell my daughter to take over and layed down and literally passed out. When I came to I was pouring sweat, and I could not even take a shower. because one of the main water lines in the street had broken the day before which in turn busted the sewer line and the city came by and told us that our water was contaminated and they do not know when it will be safe again. Glad that I have to get a motel room just so I can have a shower before my surgery. Even if it is a cool one. I so long for a long hot bath. It is extra hard for me today, woke up crying. I was hoping and praying that my whole family could be here for the holidays, but my Son will not be able to be here. I just wish all of this could just be over and done with and that my life was back to normal again. But it looks like that I have got to accept what life has dealt me if I like it or not. Hopefully my b/p will be high enough for them to do the surgery. One good thing is it is always a little higher laying down. My surgeon knows about my medical history and said that if I do not have surgery that it is only going to get worse. I guess that I am just ranting out of fear, I will post and let everyone know how it all went when I am able to sit up at the computer again. I am here to wish everyone a very HAPPY THANKSGIVING and all a symptom free day. HAPPY THANKSGIVING Talk to you all soon. Vanessa

Oh yes very common with me, When I had an MRI on my back the tech had to keep telling me not to hold my breath. I was not holding it just forgot to breathe. Most of the time I feel like I am not getting enough oxygen, mostly when b/p is very low. If this is something new with you I would talk to my doc about it. Hope you get some answers. Vanessa

Sorry I am late on posting, sick all day yesterday. Yes I did get a flu shot, and a pneumonia shot also. No side affects just sore arms. My PCP said that it was necessary as if I got the flu or pneumonia it would be much worse in me. Hope this helps. Vanessa

Glad you made it home ok. But I still dont know what an "EP" is. It doesnt sound very good to me. Please let me know what it is. Thanks Vanessa

It was hard for me to answer this poll, but I put what I knew. The only thing is I had a major car wreck in Oct of 2004, and in Feb of 2005 is when I started showing the symptoms. Since I was not seriously injured, the docs dont think that it is the cause of it. My Neuro said that the wreck may have triggered it though. Before the onset of this, I was very active, always on the go. Never sitting still. Had no medical problems for over 20 years. My family was all relatively healthy also.So docs are puzzled. Hope this helps. Vanessa

It is good to hear that there are docs out there who truly care. I have a great PCP also. I see her and her husband both. They keep reasuring me that I am not crazy and we are all going to get to the bottom of my problems. But I do know that there are docs out there that are just a waste of space. If the diagnosis is not right in front of their face, then they do not want anything to do with it. You would think that they would want to take on the challenge as a learning experience, but most dont. Glad you have a good one. Vanessa

Sorry to hear you are having such a bad time of it. I hate IVs also. My veins just wont cooperate with the nurses or techs. I have a question for you. What is an EP? I hope that I do not have to ever have one. Have a safe trip home. hope you find some answers soon. Vanessa