Mrs. Glass

I know exactly what you are talking about. It doesnt seem fair. Our lives are so different now that it is unreal. I am lucky if I get anything done during the day. I never liked tv before, but now thats all I have. My husband is always working and I cant do anything anyway. I havent even been out to dinner in over a year, because I dont know when the dizzy spell will hit me and send us home. So we dont go out anymore. I wish that I knew the answer for everyone, but I dont. All I can say is to hang in there. Try to find some kind of a craft that you can do. I am still looking. I havent found anything as of yet. My hands dont work so well anymore.

Do you like to read? If you do try reading some good books. I know its not much but thats all I can think of right now. I dream of being outside so much, but it is just too much for me. Hang in there. Vanessa

Oh yes, if my b/p is very low and I have gained too much fluids. My heart feels like it is going to push out of my chest and even sometimes my back. Also my legs feel like they are extra heavy. Almost too heavy to even walk sometimes.

Sometimes even when I do not have all of that extra fluid I have pressure in my chest and at night my legs feel like they are very heavy. Vanessa

Hi, I did have 7 but I stopped seeing 2, they were not helping me at all. Just taking my money.

I currntly see.

Primary ( will not help with autonomic problems at all)

Cardiologist

Orthopedist

Orthopedic Surgeon

Eye Specialist

Fired my Neurologist

Fired my Pulmonologist

The way that I see it is if they dont want to help me, then they are not doing me any good.

Vanessa

I have horrible itching, only on my scalp. It started when I started the Midodrine. I also have extremely dry skin now. Which I had slightly dry skin before, but now it is horrible. Vanessa

Wish i could help. I have not been able to really do anything without getting sick. Day before yesterday I decided to try to do a little laundry and surprise my husband with a small dinner. Well I paid for it. I was up all night with my heart doing wierd things and the next day, i could barely get out of bed to go to the bathroom. I had tingles all over my body all night and the next day. I felt better today so I cooked my husband dinner. I am not feeling good right now, but I still got dinner cooked. Vanessa

Here, here, I agree with you. If nothing can be done, I at least want to know what is wrong with me. At least you have doctors who are willing to do these tests. The only tests that I have had is MRI's a partial EMG and a TTT, and a bunch of blood work. My meds are not doing any good either. I am about ready to stop them totally. They just make me sick. I have to keep adjusting them to try to find the right combination, and so far nothing has worked. I am on the waiting list for the Mayo clinic in Arizona. I just called them myself. I am tired of these doctors here. They do not know what they are doing. Now all I can do is wait. Hope you start feeling better. Vanessa

I too have the same problem. There are days that I cant put anything in my mouth. It just makes me sick to my stomach to even smell food. My family worries about me, because I dont eat hardly anything and still I am gaining weight. When I first got sick I lost weight like crazy. from 230 pounds to 170 in just a few months, then all of a sudden I started gaining weight and it just wont stop. I now weigh 185. It is disgusting. and discouraging. But I dont know what is causing it. I know some of it is the florinef, but I dont know about the rest. Vanessa

Hi my b/p has gone so low that my machine would not pick it up, so I got my husband or daughter to take it manually, they could get the top # but not the bottom. As low as it has gone without passing out is 68/35, I ended up in ICU that night. I dont even go to the hospital anymore because of my b/p. I know as soon as I lay down it will come up a little bit, so I dont bother. Vanessa

The only way that I know of is word of mouth. Some times it works and some times is does not. My Primary Doc was good until she found out she could not really help me, and she knew nothing about my condition. Now it just seems like she cant wait to get out of the room. My Pt level has been too high for several months and she just says that it is high but not extremely high. Well when I went in for surgery, the doctor asked me if my PCP was monitoring my pt levels because they were way too high. I told him she wasnt concerned and he said she needs to be, because I could bleed to death. She was highly recommended to me, so you see even that does not work. My problem here is the only great doctors are not accepting any new patients. So we have to deal with what we have. If you find an answer let me know too. Vanessa

I can not sit in front of the computer for very long at all, or go to stores where there is flourescant lighting, I usually wear my shades inside, it helps some. Mine did not start until all of this illness started. Vanessa

Hi Dawn

Thanks for the pep talk. I know that I have to concentrate on the things that I can do, and not what I cant. I even told my daughter that I needed to find something to do every day just to get my mind off of my health even just for a little while. My biggest problem is I dont have a proper diagnosis yet. My Cardiologist says it could possible be one thing causing it, and then my Neurologist says no that it could be this or it is not that . They have got me going in circles. I have decided that I am not going back to the Neurologist any more. He has not helped me at all. I am just wasting my money.

Your Son sounds very wise, and I will have to remember what he told you, and apply it to my life. I also live inside myself and dwell way too much. but what else is there to do? My eyes dont work right and now my hands dont want to work right. I try to do as much in the house as possible, but that is either nothing or very little. If I do get up and say do the dishes, I pay for it for the next week. If I stand up for very long my heart starts feeling heavy, so I have to lay back down.

I hope you can get back to work. You had to stop working when I started having all of the problems. october of 2004. Before then I was healthy as a horse.

Well I guess I had better go. Vanessa

Vanessa,

I read your post and feel so bad for you. I understand your disappointment. I have been to Mayo twice and they didn't have any more to offer than my internist. I had the TTT and other tests that I can't have locally but was so disappointed they could not help me. I think we all just wish we would go into a new clinic and someone would have the answers for us but they don't. I also tried another big clinc about 4 hours from home this summer, there was a physician on the list there who specialized in POTS. Same thing TTT, no new advice. He was very nice and compassionate. But, everything he said I already knew.

I know how hard it is to fight everyday and am also so tired of it. It is helping to see a counselor. We all struggle, even people who are healthy want to give up sometimes. It's normal.

Don't be so hard on yourself. It's OK to lay around. I have finally accepted that.

My son and I were talking the other night, he is 24, he said "mom, you will never be a new car again", if something breaks down to the point that you cannot move you will need to go to the doctor. As long as you can get from point A to point B keep going. You can't be thinking about the brakes are bad, the tranny is about to go, the tires are bald etc.

I tend to live inside myself and dwell on my symptoms. It's hard not to when you feel so bad all the time. But,

it isn't helping so I'm slowly working on changing.

It was a really positive thing that you went out today. Focus on the fact that you succeeded.

I'm going to try to start driving again, I haven't for a couple years. Even writing it gives me anxiety. GOOD GRIEF!!!!

We're all here for you.

Hugs

Dawn

Hi Jacquie

They call you. So I just keep waiting. Vanessa

Hi Vanessa, I really think we spend half of our lives waiting. I know how disappointed you are, but atleast you know you have been accepted. Each day that passes you are that much closer to getting in. Do you know how they contact you with the appointment?? I bet someone here on the board can give you some useful information. I wish I could, but I have never been to either place. Keep your head up.

Jacquie

I just want to thank everyone for the kind words. I really needed them. I know that there is not miracle pill out there, if there was I would have it. I guess that I am just grieving over my old life. I miss the days that I didnt have to ask for help to do anything. I did it myself. I am also lonely for my friends. I just cant believe that everyone has forgotten about me. I know that they all have busy lives, but just a phone call would be nice.

I saw my therapist last week and she said that the outburst were actually a good sign. She said that if one is so depressed that they need hospitalized then they will not have the mental strength to have outbursts. So I guess that is a good sign. She also said that I would blow up at the small things because they were safe, and I could not blow up at the large things. Like my health or my doctors. So my mind just goes wham!! at the little things.

I have my first Disability doctors appointment next month. I am really nervous about it. I dont know this doctor and have never even heard of him before. But I will just tell the truth, and hopefully my body will do all kinds of crazy things. When I first started going to my Cardiologist, he didnt believe me until one day I almost passed out standing up, and his nurse took my b/p and it was extremely low, he almost put me in the hospital. But then at least he believed me. Put it this way I hope that I am not having a good day, they are few and far in between but they still do happen.

It is just so hard to get on disability in New Mexico. I had a friend who was dying of cancer, and found out in the late stages of it, and he was not approved for it and died 3 months later, but there is a guy down the street who just has glaucoma that is all, and is on disability. Go figure!

Well I just really wanted to say thank you to all of you. I would be lost without the support of all of you. My eyes are hurting and blurring out so I had better stop straining them. Thanks Vanessa

I ventured out today, which was a big mistake, but I am going stir crazy. While I was in the check out line at the grocery store my cell phone rang, and it was the Mayo clinic. Well they accepted me, but only to put me on their waiting list. The lady that I talked to didnt know how long the list was, or how long that I would have to wait either. It was very disappointing. I was already so wiped out just from riding around in a motorized wheelchair to buy a few groceries, and I didnt think that I would be able to get into the car, but to have this news upon it. Needless to say when I got into the car I just started crying uncontrollably. Im so tired of all of this. I just want to give up. I know that nothing can probably be done but this is just crazy. I guess I am venting because I just dont think that I can take much more. All I do is sit or lie around. This is not living it is just being here wasting space.

Well I guess that I have vented enough. So I guess that I will go for now. It has been a month since I faxed off the papers to Vanderbilt and I still have not heard anything as of yet. It will probably be the same thing as Mayo. Dont know what to do any more. I cant see very well right now so I will go. Vanessa

Yes I gain weight on it, but mine is usually fluid retention. Although since I have been on it I have gained some weight that i can not get rid of. On my last visit to my cardio I was overloaded with fluids and he cut my florinef way down. Just cant seem to find a happy medium to my problems. If my b/p is ok then my body goes totally haywire and i start stroking. If my b/p is low then my body goes totally haywire and I start fainting. My cardio doesnt know what to do now. Vanessa

I have had it checked and it was low, but it was not previously. So now I am on potassium supplements, because I can barely eat anything any more. It was just checked on the 18th and it is edging on the high side now, but still in the limits of normal. My magnesium was fine. I am waiting now for a call from my doc on the other blood tests that were not normal. Vanessa

My doctor finally told me that i needed to drink at least 2 liters of water a day. Its not enough, I drink lots more. But I am still thirsty. Vanessa

Good post, but for me I really dont know. I really dont want any of them. I really hate the heart problems, but then most of the time I cant think straight so that is very frustrating, and the fatigue is just horrible. I really dont have an answer at this time. maybe when I am feeling a little bit better. I can think clearly enough to answer. Vanessa

All of the times that I have searched the internet I never came across the Mayo clinic. But yesterday I was looking under the illness and not the symptoms and bam there it was. So today I will be calling them to get an appointment. So wish me luck. The only thing is my insurance does not cover the Mayo. Go figure! But I have got to do something. I reaaallly dont want to go to Dallas if at all possible. My Mom was killed there and I havent been back there since 1993 and I have a horrible fear of that place now.

I saw my Therapist yesterday and we had a good session. She told me that the outbursts of anger were aimed at the little things because I could not do anything about the big things, and that actually that it was a good sign. She has really been concerned about me being so depressed, but she said that a person that is severly depressed will not usually have uncontrolled outbursts because they just dont have the strength. So at least my depression is a little better.

I want to thank everyone for all of your support and information. I dont think that I could live without it right now. Wish me luck on my quest for a good doctor. Thanks Vanessa

Hi Jacquie

Thanks for you kind words. I have checked around here and there is not a doctor in my area that knows anything about this. I even contacted one lady in Albq. who has this illness, and she said that she has not been able to find one there either.

I ended up in the ER yesterday with severe chest pains, and they could not find anything wrong with me. They gave me a pain shot, which was way too much and still this morning I am feeling the effects of it, but the chest pains are back. One of the other posts put up a websight where there are other doctors and I am going to go on it to see if I can find one that will see me. Just sitting here is horrible, but I am going to try to answer all of my emails. I will try to keep posting, and if i cant maybe I can get my daughter to do it for me. I am going to try to get her to sign up on this sight as a caregiver. Vanessa

Hi Vanessa,

I was just thinking about you the other because I hadn't seen any posts on here from you. I'm sorry you are worse, I was hoping that you got somewhat better and was out doing stuff. I'm not sure where you live but you should try and look for another doctor in your area that is familiar with POTS, etc. I wish I had more to offer you for advice. I hope you are feeling well enough to pop in and update us once in a while. Is there anyone you live with that can update us?? Like I said, I hope you find a treatment that works for you and I hope you feel better real soon.

Jacquie

When my b/p is very low i always get headaches on standing and the only way to ease the pain is to lie down. My doc said that it is because my brain is not getting enough oxygen. Vanessa

I totally relate to you. I used to be very active in church, and all of my friends went to the same church. Before I got so bad sick that I could not go to church, I had phone calls all of the time. Even when I had surgery on my leg, the whole church got together and made my husband and I meals every day for a week.

Now that I am not able to go to church anymore, no one ever calls me. I know it is just because they dont know what to say. But I feel totally isolated. And when I call one of them I feel like I am bothering them. My pastor calls me about once every two weeks or so and that is it. I know that he is busy but I do feel isolated. The only human contact I get anymore is from my family and when I go to the doctors office.

Some days I have to think very very hard to find reasons to just keep going. I feel like I have been written off. I know that they dont understand why I cant go to church anymore. But I have tried to explain it to them. I actually thought that I was alone in feeling like no one understood what was happening to me, but by your post I know that you are going through the same thing.

I thought that I had true friends but I guess it just goes to show that there is probably no such thing as true friendship anymore. So I just lie on my couch and try to watch the stupid tv and hope that the day passes by quickly. Vanessa

I dont know if there is any med for it or not. I also have tremors. Mostly in the morning. But I do get them during the day. Mine are mostly in my hands, but sometimes it feels like my whole body is going to shake apart. It hasnt happened in the docs office yet so they dont seem to concerned about it. Vanessa

I have it all of the time. It is frustrating trying to watch tv or look at the computer screen. From all of my research. It is one of the possible symptoms of dysautonimia. I have glaucoma also, and my doc said that if my eye pressure was up it could be causing it, but the travatan is doing a pretty good job of keeping the pressure down. Vanessa

I can totally relate. I describe it as my brain sloshing. I just know that when my b/p is low and my h/r is high is when it is at its worse. I usually have to lie really still with my eyes closed, to get it to let up. The only place I really go anymore is to the doctors offices. The rest is just too much for me. My symptoms get so much worse when I try to go out. Hope you start to feel better. Vanessa