Mrs. Glass

I too have the tingling sensation. Sometimes it is horrible. It doesnt matter if my hr is high or not. Also with the tingling I will go from being very hot to very cold. Over and over constantly. I have had normal ekgs and I have had abnormal also. but right now my hr is always high. sitting is usually in the high 90s and standing has gone up to almost 150. I dont bother to go to the ER because the ER here is a joke. No more than a bandaid station, and the nearest good one is over 80 miles away. So I just deal with it. Vanessa

Sorry, I cant sit long enough to do meditation. My doctors have suggested it to help with my anxiety and panic attacks, but I could not concentrate long enough, and I cant sit long enough either. Vanessa

I too have uncontrolled bouts of anger. I do not have periods anymore so I guess it is just the frustration of this illness. I have never had them before. I have always been a fairly easy going person. It would take a lot for me to get that angry. Now very little things set it off. Sometimes nothing happens and the anger wells up so bad that i feel like I am going to explode. Vanessa

When I first started florinef I had horrible headaches, but I have been taken off of it and put back on it so much that it is unreal. Right now I am taking half of a .1 mg a day, but I know when I up the meds my headache will be back. I have slight headaches without it, but with it the headaches are horrible. Vanessa

I can only take cool showers. Have tried warm showers and baths and I just cant do it. My doc told me to take my last dose of florinef no closer than 4 hours before bedtime, and that is also what it showed on the paperwork from my pharmacy. My b/p raises when I lie down, I dont know if everyone elses does or not. Vanessa

I think that it probably depends on the person and how their body reacts to everything. As for me my docs dont know yet. They can not get my b/p under control. Vanessa

Sounds familiar, my tremors seem to be worse when I have these surges. I try to get up and clean or something, but my body wont let me. I get so frustrated and it even feels like I am going to explode sometimes. It always passes though, but afterward I feel so much worse then before the surge started. Hope you find your answers. Vanessa

I cannot go into a store without getting sick. I very seldom even try to go anywhere anymore. Last week my daughter took me to Walmart and I no more got in the wheelchair until i was sick. I could barely sit up. Between all of the lighting and the sounds and smells it was just too much for me, I had to get cleaning supplies as my husband told me that we were totally out so i decided to try and stick it out and do the shopping for him. That was a mistake! I am still not over it, and if that was not enough, the motorized wheelchair broke down in the back of the store, and they actually wanted me to walk up to the front to get another one. My daughter blew, big time. She finally told them that if they didnt bring me another one that someone would have to carry me to the front because I could not walk it. Needless to say I will not go shopping again. It is just too much for me anymore. But yes flourescent lights do trigger a lot of symptoms in me. Even the ones in the doctors offices. Have a symptom free day, Vanessa

Oh yes I have them all of the time. Right now my cardiologist has taken me off of all stimulants, and if that doesnt work then he will try beta blockers, but he doesnt want to do that because it lowers the b/p. I have not found anything that works as of yet. if i do I will let you know. Hope you find some answers. Vanessa

I dont take anything anymore. My doc took me off of everything. Wish he hadnt. Life has been horrible. Vanessa

You are definatly not alone! I think everyone here has had it with this illness. I know that I have. I call it a family illness because it affects the whole family. My husband is also very supportive. Works two jobs, takes care of the house, and takes care of me. We have been married for 33 years, and we have always been devoted to each other. My daughter sold her big house and bought a small one next door so she could take care of me when my husband is at work. My son is going to move in with us as soon as he can, so he can help to take some of the load off of the rest of the family. Even my son in law helps out when everyone else can not be here. So you see it affects the whole family. So no you are not alone. This is an illness that is hard to handle. I had not even had a cold in about 20 years when I came down with this. And I live in a small town in New Mexico where you have to go out of town to get most medical help, but there is not a doctor in this state that knows anything about this illness. My cardiologist is trying but nothing is helping. Everything that he has tried makes my medical problems worse. I dont have a full diagnosis yet, mostly symptoms, my doctor is guessing and he even told me that. I have sent in my application to Vanderbilt, hopefully they will be able to help me. I have given up my license, got a handicapp sticker, and applied for disability. I am not even 50 yet, but I feel like I am 80. I have horrible outbursts of anger now, and I cant seem to control them at all, but my family seems to understand. This illness is debilitating for some and not for others. I dont know why but from everything that I have read that is the way that it goes. I hope that this post will help you. I dont think so well lately. I dont know if it is the low b/p or what but sometimes I dont make much sense, but I hope this does help you. If you would like to pm me you can. I hope that you start to feel better. Vanessa

Sorry, I havent found anything to help my nausea. I just ride it out. Cant do anything anyway, so I just lay there. Wish I could help. Vanessa

I havent posted lately, because I have been too sick to sit at the computer. It seems that as soon as my b/p starts coming up my body starts rejecting the meds. My cardiologist started me on potassium supplements because my levels were very low, but I seem to be worse instead of better. I take lots of salt and water, but my body does not like the florinef and midodrine. I was headed for another stroke two weeks ago, but my doc caught it in time. He told me that I needed to start regulating my meds myself to see if I could find a happy medium, well that scares me horribly. If he cant get my meds right how does he think that I can. But I cut myself down to half of a .1 mg pill a day until all of the extra body fluid disapears, then I will start to go up by half a pill a day. I just hope that it works this time. I faxed all of the paperwork into Vanderbilt, and I even emailed bonnie, but I havent heard anything back yet. I dont know what else to do from here. I am so desperate for even a hint of a normal life that it is just driving me crazy. I keep having horrible outbursts, which is so unlike me. I have even tried throwing things. I just seem to not be able to control all of this anger inside anymore. Oh well that is another story in itself. I just needed to vent. I have been up all night, couldnt sleep, so I thought that I would try to sit at the computer for a while. Vanessa

I am having problems taking florinef. My body doesnt like it. Even with the extra salt and water, I still have horrible problems. I am now on a potassium supplement also, When my b/p starts to get close to normal, then I start having problems with my body going haywire. Dont want to scare you, my body is just wierd. Vanessa

I havent posted lately because I havent felt well at all. In the past week I have gained 10 pounds and I eat like a bird. My family is always on me to eat more, but my stomach just will not handle it. I saw my Cardiologist yesterday and he said that he has to cut my florinef because it is overloading me, He said that the veins in my neck are popped out all the way up on my face. Also because of all of the meds he is afraid that I am starting to have kidney damage. He is already watching my blood work for liver damage. One number has come down one point in 2 months and the other is normal now, my potassium was extremelly low and he put me on another med.but with everything else that is going on, he is afraid of the organ damage, so now I have to go next week for more blood work only now it is not going to be one little vial, he said that they will be taking several vials for all of these tests, but he needs to find out if my organs are being damaged or not. It is so frustrating though, my b/p hasnt been this good in over a year, and here the meds are screwing up the rest of me, so I have to cut it down and deal with the low b/p. I did talk to him about Vanderbilt, and he told me that it was a great idea, because he is having such a hard time getting the right combination of meds for me. He even said that he would make sure that his office gave me copies of my records. I was very shocked because he is very protective of his patients. He is not arogant, just protective. He is a great cardiologist, but he even said that all he can do for me is to try to get my b/p regulated, but that is not even working. Last week I talked to my PCP about Vanderbilt and she also agreed that I need to get in there as soon as possible. So now I am playing the waiting game. I just hope and pray that I hear from them soon. I have truly missed posting and reading other posts but with the way that I have been feeling and my eyesight getting much worse it is just too hard. I will try to keep posting but I dont know how much longer that will be. Thanks for letting me vent. This forum has been a lifesaver for me. Vanessa

I saw my PCP on Tuesday, and I havent posted the results because I am really scared. Back in April on a routine chest CT for chest pain they found a nodule in my left lung. They told me that I needed to have another chest CT in six months. I did and it was still there along with shotty lymph nodes. The shotty lymph nodes didnt concern me because at the time I was suffering from Bells Palsy which is caused by a viral infection. And really the nodule didnt concern me because it had not grown. Well I had a CT the last week of December and the nodule is still there, but now there is two. One at the top of my lung and one at the bottom. Now I have to see a Pulmonologist on the 16th. If it was just the one I still wouldnt think anything about it but I am really scared now. With all the rest of the stuff that is going on in my body the last thing that I need is another problem. I talked to my PCP and she said that it is my body and whatever I decide is up to me, but she would suggest that I go to see this doctor. What scares me the most is I did this to myself. I started smoking at 20 and smoked for 27 years. My doc put me on Wellbutrin to help me to kick the habit but my Cardiologist took me off of it and said that it wasnt good for the Autonomic System. So I am still trying to quit to this day. So if it is the big C I did this to myself! I grew up in a family where my parents were chain smokers so I guess I got the taste of it, and in 1978 I had a hysterectomy and after I had a lot of problems with my nerves and my doctor wanted to put me on Valium and I told him absolutly not! So he told me to start smoking, because if I didnt do something I was going to have a nervous breakdown. I had a nervous breakdown anyway, but by that time I was already hooked. I did some research and asked some of my docs and they said that back in the 70s that some doctors did actually use cigarettes to help to control nervous problems. Well it makes me mad, but I still dont blame them, I blame me. I was stupid and naive and put doctors up on pedestals. So if anyone out there knows how to kick this stupid habit without drugs please let me know. I can not take the over the counter stuff, have tried most and I am allergic to all that I tried. I have tried cold turkey and it makes my other problems much worse than before. Thanks for any input that you can give me. Vanessa

Welcome Amouna You have come to the right place. I would be lost if it were not for the support of everyone here. You can also get a lot of needed information. The people here are great, very supportive, and full of all kinds of information. I am sorry that anyone has to be here, but at least it is here, because we all know that you are not alone in this and how people dont understand what you are going through. I personally dont sleep very much at night so I get up and get on the internet and read posts when my eyesight will allow it and it really does help to know that there are people who do understand what you are going through. Vanessa

Hats off to you. This is a great subject. Very upbeat. I got my name Mrs.Glass due to the way my daughter had to explain to my youngest grandson why I could not get in the floor and play with him anymore. Does anyone remember the movie Unbreakable? Well there was a character on there whose bones were as brittle as glass and he was called Mr. Glass. Well my bones are as brittle as glass, and that is the only way that he understood, so my nickname is Lovingly Mrs. Glass. Vanessa PS. My Grandsons also call me Mimi, which evoloved from Memaw and Mommy, which is another story in itself. Thanks for your wonderful post. Vanessa

I have back problems but it was due to a herniated disc. I do have problems with a stiff neck most of the time now. No matter how I sleep I always wake up with a stiff neck,and it does not go away during the day. I can barely turn my head on most days. I dont know if it is caused by this or not. Vanessa

The midodrine does not help me. Although my Cardio still has me on it. He tried me on it alone and it did absolutly nothing, then he put me on Florinef along with the midodrine. I dont know why he kept me on midodrine it doesnt work, but my b/p is fluctuating between low and almost normal, better then need to go to the hospital low. Hope this helps you. Vanessa

I try coffee I have to drink decaf, but it still works. I thought that I had the flu this last week, but it was only a 24 hour bug, and when I drank my coffee the pain and pressure started letting up. Hope it works for you. HOpe you start to feel better soon. Vanessa

Im not sure, but I know that my thyroid was checked and it is ok. But I dont know if I have pots. my doc thinks that it might be MSA or PAf he is not sure though. Vanessa

Welcome BriBri, I am sorry that you have to be here, but you are where there are many people who are in the same position as you are. There is a lot of support and good advice here. Many many of us have some of the same symptoms if not all as you do. I have not been totally diagnosed as of yet. I am waiting to see if I can get seen at Vanderbilt. The only thing that I do know is my life has changed drastically. I am not the person that I used to be. At least you were diagnosed relatively early. I have been going through all kinds of tests for over a year. My first doctor told me I was a hypochondriac, even though he had put me in the hospital several times due to my b/p dropping drastically. Now the ER treats me like I am something they stepped in in the parking lot. So now before I go to the ER I have to call my Cardiologist first. He will then call ahead just so I will get decent treatment. The last time I was there. I was having a stroke, and they treated me horribly. Then they sent me home. My Cardiologist was furious. But my Cardiologist is in another town. There are no good specialists in this town, and very few good PCPs. My PCP wont even touch anything associated with this disorder she always sends me to a specialist. I hope that you will get better treatment where you are. It is a disorder that very few doctors know anything about. So look up a Neurologist and ask if they have experience with Autonomic Dysfunctions, this will save you a lot of time. Hope you find some answers. Vanessa

Hi Bamagirl You are not alone, you have just described what I go through on most days. I have had a couple of days where all of my symptoms were not acting up. As I am fairly new to this disease I do not know the answer to your question. I too have the same question but I just would not ask it. It is hard to live with all of this stuff in our body acting up all the time. All we can do is to try to take it a minute at a time and try to see the light at the end of the tunnel. When you have days that you feel ok try to remember or write down what you did differently that day even the smallest of things. I know for a while I didnt realize that my hot baths were making it worse for me, or that the temperature in the house was making things worse. You see the littlest things is what we have to look for. I truly hope that you start to feel better. Vanessa

I wish that I could. I hate it that our vision has to be affected. I too have a lot of vision problems,and I guess that it is just part of this stupid disorder. I also have glaucoma and macular degeneration, so I never know which one is causing my problem of the day. Have you checked your b/p when your vision messes up? I have read on the posts that some people have problems with their eyesight when their b/p is low. Wish I could help more. Vanessa