Ernie

Congradulation Ernie

It can be possible to be diagnosed with POTS or NCS even if you have a negative TTT because you can be having a good day. Doctors rely on the medical history for diagnosing. Ernie

Hi, I have been receiving acunpuncture and it does not improve the syncopes yet but I have more energy. I can also focus more clearly. Ernie

Hi, I have this problem also and I have been told that it is part of POTS. Ernie

Hi Kathleen, Welcome to the forum. Thanks for sharing your experience. You have your share of problems. I am glad that Michelle was there for you. Can't wait to read part 2. Ernie

Hi Tearose, Thanks for the explanation. I finally decided to post about my feeling of loneliness after I had tried for a couple of weeks to find a support group in my area and could not find any. I saw in the newspaper that there was a support group for people with panic attacks and anxiety. I talked to my best friend about it and she said that I would not identify myself with them. So I wanted to check it out and went on the net to find one. I read some of their posts and realised that my symptoms did not matched them. For example, someone was saying that they were afraid to leave the house because people were looking at them (the person has social phobia). I wanted to post on that forum but I figured that they would not understand that I am afraid to go out because I am afraid to faint on the street and hurt myself. They would have thought that it was only a fear and not a fact. So I did not see myself trying to explain to them that I have a real physical disorder and it is not only a fear per se. As a therapist I understand that phobias, fears, anxieties and other psychological or emotional problems are disabling but I did not feel that the panic attack support group would understand the physical side of my problem. As I was reading some of their posts I realised that they were getting depressed as a side effect of their social phobia. I also realised they they felt free to talk about it. So I decided that I was going to take a chance and talk to you girls and guys about it and see what happens. I was afraid to be perceived as weak and sick (I know I am but I just don't want to show it!). I was positively impressed by all the compassion, empathy and understanding I received from all of you. I felt like everyone was holding my hand and helping me to get back on my feet. I am glad that I posted and I am very appreciative of what everyone has said to me. Ernie

Hi Tearose, Can you explain what "quiet thoughts" means? I am not familiar with this expression. Ernie

Hi Danelle, I don't have more advice than what has been said but it is really important that you appeal. The government rejects people the first time because some will back out. You deserve the money because you are unable to work. I don't remember reading about someone not being finally accepted (with dysautonomia). I know it takes perseverance and help but is is doable. You have to continue for yourself and your family. Ernie

Hi, Cold affects me more than "normal" people. As a matter of fact anything I get affect me more. When I had my car accident 2 years ago it took me 3x time to recover and the insurance did not want to pay for the treatment. My doctor had to explain that because of my disorder I needed extra treatment for the same benefit as the usual patient. The temperature I am comfortable is 72-78F. Anything different makes me sick. When my HR gets above 95 I start to feel nauseus, when I get above 130 I get triggered to faint and I faint at above 140-150. When my HR is below 57 I start to feel dizzy and nauseated and faint usually around 50. My tolerance is pretty narrow. Ernie

Hi Julia, You did not discourage me at all. When I read your text I thought that you were very courageous to visit your friend at the nursing home considering that you were sick yourself. I think that she was a special person and it must have been a terrible loss for you. I agree with you that friendship is lifelong, in good days and bad days. I have friends from 25 years ago but they have moved out and they are long distance. We still call each other once every 3 months or so. A real friend is like a diamond. Ernie

Hi, Thank you so much for being there for me. I am sorry I did not reply to you sooner but I was very depressed and I did not want to discourage you (and I did not want to show how down I was). I took all the energy I had to post a few days ago and I could not even proofread what I had written because I would have deleted the whole text. I find it difficult to show others when I feel depressed but I decided that I needed to post if I wanted help. I am reading all your posts as they are coming in and also reread them regularly. What you have told me has really touched my heart. All the love you give me makes me stronger. I think I got discouraged after fainting in the street a couple of weeks ago after going to see my acupuncturist. I am more afraid to go out alone and I find it very difficult to find someone to accompany me. Then last week my acupuncturist said that I should not be on the computer and watch TV so many hours per day and that I should stand for at least 20 minutes in a row in the house. I felt so non understood because the internet is my link to the outside world. There is no way I can stand for 20 minutes anywhere and I have already tried the tilt training and it made me worst. I think I get discouraged when people expect too much out of me. I read your posts and I have decided that I will continue to plug on the internet because you are my friends and I need you. When I started to get acutely sick 4 years ago I was not watching TV and going on the net so this is not what made me sick. I think that when I choose the activities I do I have to also consider what makes me happy and not only what is the most “healthy”. I have been doing a lot of phone calls for the past 2 weeks to find help and nothing was working until yesterday. I got a call from a volunteer office and they are willing to drive me to my doctors’ appointments. Also, I got a volunteer office that helps me write my biography. I have been trying to write mine since June but I just cannot put myself to it. This group meets every second week and we are coached on how to write and publish. I just got the information this morning. I realise by reading your answers that all of you have lost something to this disorder. Most of the time I accept my new limits but other days I would just like to go back in time and appreciate what I had then. Looking into my thought I should also appreciate what I still do have. This morning one of my old client left a message on my answering machine because he wanted to have a massage tonight. I had decided not to call him back because I did not have the courage to tell him that I am now disabled. I had not seen him for a few years. He called me at noon and said as a joke: “You were not planning to call me back!” So, I told him that he was right. He was surprised because I had always returned messages. So I told him it was not because of him but it was because of my condition. He wanted to know more so I started to tell him what I have and why I don’t work anymore and why I don’t even want to return clients’ phone messages. He said that he did not know what to say. So I started to tell him what I am doing to keep busy and he said that I had a very interesting life. So I asked if I discouraged him by telling him my story and he said that I was very positive and that I encouraged him. I thought to myself that either I have a good mask or I don’t realise what I do. I asked him to explain why he finds me encouraging and he said that it was because even if I am limited I still do things and I still want to be active and useful to others. You are also encouraging me by telling me that I am there for you because sometimes I wonder if my posts come across as I intend them. Since English is not my first language I sometimes find it difficult to express myself and I am often afraid to hurt you. I followed your advice, I called some of my old friends. I don’t want to know yet how much it will cost me but it was well worth it. I have been trying to find a support group in my area but so far I have no luck in finding one even for another chronic illness. I will still try to find a group because I need to see other people. The only other dysautonomia people I saw were the ones I saw in Toledo when I went there 2 years ago, you Julia and my family members who are also affected. Here we are a “rare species”. All your posts have cheered me up a lot! It makes me feel so good to read everything you wrote me. I think I will print them and read them every day (for a while at least!!!). I love you all Hugs Ernie

Before I was on salt pills I had to get an IV bag every time I fainted in public. This stopped the syncopes for 3 days. Now I can manage on my own as long as I don't have diarrhea or other loss of fluids. Ernie

Hi Kathleen, I am really happy for your that your surgery went well. This is very encouraging. Good luck with the second part. Ernie

I used to be a workaolic and work 18 hours per day. I was happy this way. I had may clients and was busy all the time. Now I play with my puzzles and watch TV. I get so lonesome some days. Sometimes I feel like an old old person in a nursing home waiting to die and trying to keep busy to forget about it. It's so depressing! Ernie

Thanks for the update, I will pray for him too. Ernie

Hi Tearose, Thank you very much for sharing this system. Like Geneva if I don't sleep well I can split my total energy points in half when I wake up in the morning. Then if I have outside activities I have to multiply by 3, ie eating in the restaurant = 300 x 3 = 900 points. I cannot do outside activities 2 days in a row because I need to recuperate and do only minor activities on the recuperating days. When I went to university I needed to nap 2 hours every day but now I only need 20 minutes. I never realised that studying was that expensive until I graduated! This is a very interesting topic and I hope that more will share their experience. Ernie

Hi Steph, I really enjoy reading these kind of articles because it explains in details what we have. This is one of the thing that I miss from going to University. I don't get to read many in-depth material anymore and I miss it. I guess I am like a runner who stops running. I miss studying and learning so when you offer some medical information, I am delighted. Ernie

Good luck Nina, Ernie

Hi, Thank you for the article. I read it all and it is very informative. I really appreciate that you printed it on the forum and I enjoy reading technical stuff because it teaches me a lot. For me, the more technical the better. Ernie

Congradulation Jessica, I don't know about the meds. Ernie

Hi tearose, Nice to see you back. I can partially answer the question about making new friends. I am actually in that process myself. My "old" gang of friends went playing bowling the other day and I went to watch them. I met a friend of 20 years with which we had lost touch when I got acutely sick 4 years ago. She invited me to her place and I went this week. We plan to go out together once every second week. She says she does not mind pushing my wheelchair. She is disabled herself but we found that we like going to the movies, museum and shopping. So this is the activities we will be doing together. I am also in a photography club. I don't take pictures with them but I learn how to judge the pictures and I spend one night per week with them. Maybe in a few months I will be able to accompany them in their outings. Today I also called the volunteer office to find out if there is any support group. I am waiting for a call from them. I think that it will be easier for me to make friends with other people who have disabilities because 1- they don't work, 2- they understand what it is to be sick. The trick is to find someone with the same taste and that we can help each other out. Ernie

Hi Blackwolf, I am so sorry for the events (I don't really know what word to put!) that you have in your life. I just wish I had a magic stick to help you. I will keep praying for you so that you will be able to pull out of all of this. Ernie

Dear Julie, I am sorry for the possible new diagnosis. I feel for you. I hope everything goes well for you. Ernie

Glad to read that the doctors found the cause of your problem. Ernie

Hi Lisa, Welcome to this Forum. Ernie