Ernie

Hi Tearose, I am sorry that you had such a bad experience. I had a similar experience last week and W was talking to my therapist about it yesterday. She suggested that I don't waste my energy trying to "educate" people who have bad manners or bad social skills. She said to avoid those situations as much as possible and change the time of my shopping or outing. As you, when I go out of the house I want to enjoy myself and I don't want people to spoil those minutes. She also warned me that some people may be challenged if we try to show them that they are wrong and they may become more violent toward us. She said that one of them could be waiting for me outside the store, etc.. I don't want to frighten you but here some people have been killed for honking at someone who cut them off in the traffic. My therapist also says that I have to be careful about my emotions not to trigger any episodes. I can tell you that it is much more humliating to wake up after a faint when I was agressive at someone. Also, bystanders are much less interested in helping you if you were agressive. Some people are furious that we are taking a handicap spot when we don't look sick but others like to beat on the weak. Some are also jealous that we have a "privilege" that they don't and they don't even care if we are sick or not. They would just like to have that spot. I wonder if they would like to have the disorder that come with the handicap permit? Ernie

Hi Julia, When I have a cold I take Eucalyptus oil and Tiger Balm. Hope you get better soon. Ernie

Hi Anthony, Welcome to the forum. I understand how you feel. Where are you from in Canada? I would strongly suggest you have a TTT to get the proper diagnosis. Ernie

Hi Tearose, Don't worry. I know that my name is confusing in English. Thanks Gayla for clarifying. I had not noticed when I read the text. Have a nice day everyone and let's hope that we get out of the potswhole! Ernie

Thanks Merrill for the information and all the explanation. I did not realise that we are waking up so early. I better bring something to eat, just in case. I can't wait to get the result. Ernie

Hi Tearsose, I am here with you. Ernie

Hi, I have looked in the archives but I did not find the answer to these questions: What are they measuring besides BP, HR and breathing. How often do they take the measurement? Are we permitted to take sleeping pills for the study? Do they serve us breakfast before sending us home? Can we take a shower before leaving? Also, any other personal advice or experience would be greatyl appreciated. Thank you Ernie

I go to a physiotherapist every week or so for the injuries on the multiple falls I sustain. He does not treat the ANS. Ernie

Hi Danelle, I don't know if Dr Grubb will help with the paper work but I certainly do know that he has many patients who are on disability pension. I am one of them and I personally know others. I got my paper work done through my PCP and a referral from the specialist. Here specialists don't fill up the forms because it takes almost 3 hours but they are willing to write a little lettter. Ernie

Hi Rita, I just called the neurologist,s office last Friday to find out and the doc did not call me back yet. I have been waiting for more than 6 weeks to get tested. The doc had told me it would be in October or November. So I wonder when it will be. Please pray for me that he does what he promised and that everything goes well. Ernie

Hi Tearose, I took Mestinon last year and I had to stop after 3 days because of dehydration. I tried it 2 other times and the diarrhea came on faster. I had more muscle strenght but fainting more so it was not worth it for me. Ernie

Hi Tearose, I went to a few neurologists about the general muscle weakness and my EMG is normal. I worsen every year and when I am without medication my legs can't carry my weight. I am still trying to find a doctor who will know which medication to give me. As far as the training goes I bought a recumbent bike and train at the lower resistance and watch over my symptoms. I only train once a week. I drink salt water every 5 minutes while training. Ernie

Geneva, Beverly, Jessica thanks for answering my post. I have also read your posts a few times and meditated on it before answering. I would like to be able to meet all of you face to face and have big hugs. It's funny how we feel connected even if we don't see each other. I am glad to be part of this cohesive group. I think that part of the reason is that we have good moderators and also each one of us is careful about each other's feelings. Another thing I also appreciate is that even if a few a us are from other countries than the majority we are "one" group. There are no national barriers. I went to my first biography meeting on Wednesday. There are 10 women all in their sixties. Of course I am much younger then them but I can identify to them because they are "retired". I really enjoyed my morning with them because we exchange our deep feelings and nobody judged us. When I came home I felt so refreshed. It takes a lot of my energy to get there but at the same time it nourishes me. There was a woman who almost died of cancer 5 years ago and her husband of 30 years left her. I was in tears when she was telling her story. I don't know if she will survive the 2 years we will be together but I know she will make me grow. My dear Emily. I read and re-read your posts and I appreciate that you take your time and energy to write to me (this goes for everyone else also). I know how awful you feel some days and I value even more what you are giving me. I have noticed lately that I get exhausted talking on the phone. Emily, until you wrote it I had not realise that it could be caused by our disorder. I thought that if I laid on the couch and talked that was fine. I know that when I faint I don't have the energy to talk but I never realised that on my good days I would get exhausted by phone calls. I think it is a good idea to schedue phone calls because as you said we save the energy for the conversation. For many years I desperately wanted to have children. Now I am getting to a point that I accept not to have any. I still miss it but it is not as painful as before. I appreciate having you my internet friends. Ernie

Good luck Danelle, Ernie

Thank you for helping the forum. That is very generous of you. Congradulation on your good work. Ernie

Hi Corina, Have a nice week-end with lots of fun and rest. Ernie

Hi Goldicedance, I am happy that you finally found a medication that is working for you. Keep up the good work! Ernie

Hi Julia, I am not knowledgeable about the neck issue but I know that if I take a diuretic I will faint within 2 hours. So I know that it makes me worst. I have hypovolemia. Do you know if you have hypovolemia? I would check with Dr Grubb or his associate to see what he thinks of it. Ernie

Hi Dave, That is really nice of you to talk to us personaly. I am glad that you are starting to get better. I think that you are more important to Morgan than you realise. She thinks the world of you (and I agree with her) and I wish you long healthy life. Morgan is also a wonderful person and she is always there for us. Ernie

Hi, I think that with everything that is going on in your life presently it is normal that you have this kind of reaction. You have been under a lot of stress lately. I know it does not give a good impression to doctors but they are not in our shoes. I understand how you feel. Ernie

Oh my God, Morgan. This situation is so frightening and ridiculous. I am speechless at how doctors and medical staff are taking care of your husband. I will pray for both of you. Ernie

Hi Emily, I don't think you are rambling at all. I find it very interesting that you share your personal experience. I think it makes each one of us closer together. Ernie

Hi Kathleen, Thanks for sharing your story. You wrote many wise thoughts. You are in inspiration. I hope that one day I will have reach a similar level of maturity and be able to accept my limits etc. Ernie

Hi, I am so very sorry that you are getting sick like this. Could you have a standing IV prescription so that you don't have to wait until you get that sick? Does the acupuncturist have any suggestion for you? I hope that things settle down for you. Ernie

I agree with Briarose. Your TTT should have been between 30-60 minutes. Only severe cases react within 5 minutes. I guess that is why you were diagnosed with POTS anyways. He relied on your medical history. Ernie