Ernie

Could you take some sleeping pills? Good luck with your appointment. Ernie

Thanks Merrill and Gayle for the news. I really admired his courage and determination. It's such a loss. Ernie

Hi Opus, The adrenal pain is in my back where I have my bra strap. It is on each side of my spine. The pain feels like someone is overstretching a muscle. Before I had that pain only when I had an adrenaline rush but lately the adrenal pain was 24 hours a day. Since my acupuncture session 2 weeks ago the pain is gone. Ernie

When doctors are on strike here, statistics prove that less patients die in the hospitals! Ernie

I feel much better today. I went with my friends to see them playing bowling. They took good care of me because they carried my bags and watch over me. Everything went OK. Thanks for your support Corina, JLB, Blackwolf and Morgan. You make me see things differently. I still hope to improve some more. I am waiting to see a muscle specialist. I am suppose to be hospitalised for 5 days but I did not get the date yet. You know how slow things are in Canada! I have been waiting 5 weeks for the phone call. Every time the phone rings I hope it is the hospital. I never though I would be excited about going to an hospital. I used to be excited about going to Mexico or Europe! Have a nice day. Ernie

Thank you so much for your support. It means very much to me. I hate having to tell my fainting stories because it seems I am repeating myself over and over again. Sometimes I wish I had something interesting to tell you like I am back to work or I am normal. I hope I am not boring you with my problems. Ernie

I take Licorice Root which is similar to Florinef. It's a herb. I used to have lots of IVs but since I am taking salt pills I don't need the IVs anymore. Has Nicole tried them? Ernie

I agree with what has been said. You should find a doctor who is willing to care for you properly. I am sorry for the lost of your dog. I had to have mine euthanized and I still remember her even after buying another one. It's like our kids in a way. Ernie

One thing I remember is that you need high grades to get in med school ie 90% and above but to graduate 4 years later you need 50%. So that means that some doctors only understood 50% of the material they were tested on. Pretty worrying. Ernie

Hi Kathleen, Good luck with your surgery and good recovery. Keep us posted on your progress. Ernie

Hi everyone, It's been 3 weeks that I am going to an acupuncturist. I think it is helping me. I have more energy and less adrenal gland pain. Today I went to see him. He is also a medical doctor. During the treatment I felt an adrenaline rush. So I took my time to leave the house but I fainted in the middle of the street. I was lucky that he also has doctors has neighbours. So they took good care of me but they had trouble carrying me because everytime they put me upright I fainted again. So I ended up lying down on the street for 15 minutes. I was kind of worried that I car would run over me. My doctor-acupuncturist brought me in his house and did a 2nd treatment to revive me. Nothing was working at first but in last resort he did a treatment for people who are found dead after drowning and it worked on me!!! No wonder I feel so half-dead when I have an episode. He was very nice. He let me sleep it off and then served me lunch. Now I am just a couch potato waiting to be my "normal self" again. I am getting more and more scared of going out alone (which I rarely do). This is the 5th time I faint in parking lots or in the middle of the road and I wonder if one day a car will run over me. I just don't want to be a prisoner of my house. Do you understand me? Ernie

Congradulation on finding a new doctor. Good luck with tampering your meds. Just be careful and watch your symptoms. Ernie

Congradulation Paige. Ernie

Hi Nina, Good luck with your test tomorrow. I know everything will go fine. Can't wait to hear back from you. Emily Good luck with your test. Ernie

Hi, Thanks everyone for sharing your "dreams". Makes me feel better to know that I am not the only one dreaming about being sick. I think I have 3 kinds of fainting dreams: 1 - fear of fainting, 2 - trauma of being mistreated, 3 - physiological malfunctioning. When I was fainting 10x per day every night I was dreaming that I was fainting. Now I dream about it a few times per week. I think that in my case it is because I am more symptomatic and it is my unconscious giving me the message. I noticed that I have to be more careful during the day after I dreamed about fainting. Usually I don' leave the house and if I do I am in trouble. Emily I have that kind of trauma dreams also. They happen when I am being mistreated by the medical personel. For example, I dream that I faint and that doctors don't believe me and they just leave me on the floor (that's what they use to do!). Meaghan and Blackwolf When I wake up from this fainting dream I am so weak and I have the same feeling that I have when I actually faint. Sometimes I wonder if I fainted in my sleep because it is so similar. I know that my BP goes very low when I sleep but I don't know how low it goes. I usually have those fainting dreams when it is very hot or when I am hungry. I think I wake up to protect myself by putting the A/C on or eating. Most of the time when I get up to get food or put the A/C on I actually faint. So now I am scared to stand when I have those dreams. Ernie

Hi Nina, I found the answer in the references you gave me! Lots of interesting stuff! "The patient is 'heterozygous' for the mutation, meaning that she has one normal copy of the norepinephrine transporter gene and one copy with the mutation. Flattem also examined DNA samples from the patient's mother and nine siblings and found that the mother and four siblings (including the twin sister) were also heterozygous for the mutation. " http://www.mc.vanderbilt.edu/reporter/?ID=...&start=1&end=10 Thank you so much. Ernie

Hi Nina, Thank you very much for all this information. You are such a sweatheart. Ernie

Hi Nina, Thank you so very much for all the information you gave me. I was not aware that they had research mice for our problems. I read the whole articles and I will reread it again because it is very interesting. The first article you mentioned about Linda Smith is the one I was referring to. I cannot get the full text because I need a subscription. The information I was looking for is technical. I would like to know how many people in the family were tested for them to find the gene, ie father, mother and siblings or just siblings and affected parent? Also, I would like to know if they found a better medication for her because they know her genetic defect? I hope that these are not personal questions. For example, is she now getting a medication for the Norepinephrine transporter correction? Ernie

I remember reading an article on the research they did on a person who had a problem with the Norepinephrine Transporter. Do any of you have the link to this research. I know it was done at Vanderbilt about 4-5 years ago. Thanks Ernie

I don't remember if it was discussed before but I often dream that I faint. When I wake up in the morning I am even more tired than the nights I don't dream I faint. Do any of you have that problem? Do you know what it means or what causes that type of dream (ie BP getting too low) etc.? Thanks for your help Ernie

Hi Friday, I was bedridden for 2 years before I first got my diagnosis. During those 2 years the doctors thought I was making myself sick or I was malingering. I only got relief after seeing Dr Grubb and Dr Goldstein. Before I got my meds I would faint every time I stood (and I am not even exagerating!). This means about 10 times a day. I kept hurting my head, my knees and my back. I had constant diarrhea and GI spasm. I had brain fog all the time and could not think straight. I had adrenaline rushes even in my sleep as I would wake up in tremors, all wet and pass out going to the washroom. I had many other symptoms that I don't even want to remember. I felt like I was in ****. Now with my meds I faint about 1-2 a week. I went to see my cardiologist a few weeks ago and he told me that there is no cure for ME and that his only goal for me is to keep the syncope as low as possible to avoid hurting myself. He told me I will never go back to work. He also said he had never seen someone as sick as me and I am the benchmark for the other patients. He also added that there is no research done at my adrenaline level so they don't even know how it affects my body functions and my life. I have been told the same thing at NIH! I hope that this message is encouraging because that is my intention. I find it very difficult to write about the 2 years I was bedridden so if ever I end up hurting you or anyone else I am sorry. I don't mean it this way. Ernie

It does get better for some people and/or we slowly learn to compensate and live with it. It's hard to make new friends or keep the old ones and the ones we have are real friends. Like Morgan and Herdswoman said we are part of your social life. I spend most of my days watching TV and playing with my puzzles. This keeps my mind away from negative thoughts. I try to do one activity per day, ie go to the doctor, physio, clean the washroom, exercise. I go out on one day and the next I need to recuperate. I usually go out for 2-3 hours. When I feel too presyncopal I have to cancel everything (which means the only thing I do during the day). My doctors and other caregivers are aware that I cancel only when I know I will faint in public so they are very understanding. They prefer that I stay home than having to pick me up and care for me! I also think that having a psychologist or psychotherapist is helpful. Among other thing, they can help with dealing with a chronic illness. Ernie

Hi Herdswoman, Thanks for the advice on how to deal with doctors. I too need the advice because I keep using the wrong approach. I need to learn how to handle "the cat"! I am slowly getting better at it. Ernie

I have been tested by a neurologist who said I have Munchaussen. Then I went to see an internist who said I had Psychogenic Syncope. Finally, I went to see Dr Grubb and Dr Golstein who told me I have POTS and NCS. The immediate cause of my problems is way too much adrenaline. This is not neurological or cardiological. I wonder if it is endocrinologic. I am followed by an electrophysiologist now. I guess it depends on your etiology. Ernie

I also have a standing order for IVs and I use it when I get sent to the ER because of syncope. It stops the fainting for 3 days. Ernie