Ernie

Hi, Whenever it is cold outside I have trouble breathing. I feel like I am choking. Then my bronchi hurt and I cough when I get inside a building. My lungs burn. I did a Pulmonary lung function test today and I don't have asthma. Do any of you have the same problem? Thanks

Hi, He will probably read the medical file you bring him, explain you your disorder or show you a presentation on his laptop. Then you can ask him questions. He is an exceptional doctor. Good luck and keep us posted.

Hi, I have migraines and headaches and the doctors say it is linked to POTS.

Hi Suzy, Thanks for your nice answers. I have hope because I am going to Mayo in a few days. I will meet with Dr Low. I feel he will help me further improve my condition. You can protect your children from getting sicker if ever they have the disorder by avoid the triggers as much as they can and not overdo it. You can use your own triggers as a benchmark.

Hi Suzy, When my teacher who was a doctor told me I was fainting in class to have sex with him I wondered how a person would like to have sex with an unconscious woman or a woman who had just fainted. After being raped in 2007 while I was paralysed in bed the police investigator told me that certain men have pleasure having sex with powerless women because it gives them a sense of control and domination. So from that comment I guess that this doctor had a control issue. I suspected my husband until I went to NIH. I also suspected people who came to my house and there was a lot of them. I hated to be on the alert all the time. I thought that I would eventually die from the poisoning. The funny thing is that this neurologist never tested me to see if and what poison I was supposedly using and having in my body. Looking back at it now I would ask him to test me to find the poison. I am saying genetic POTS because I don't have another name to call the POTS we have in my family. There is about 80% of my family who have the disorder. 29 were tested and 25 were positive for POTS, NCS. I have at least 160 relatives alive on my father's side so it means that there is at least 80 of them who have the disorder. Many of them don't even want to be tested because they believe that if they don't know they don't have it. There are even two members who kept their compression hose to do the postural catecholamine test hoping to have a negative result. They tested positive anyway!

Hi Suzy, One of my doctor kept saying that I was fainting in front of him because I wanted to have sex with him. I thought that I really must be insane because the man does not attract me at all. He is way the opposite of what I like in a man. But he eventually convinced me. Another doctor said that I was faking fainting but that I truly believe myself and was not lying about it. So I started to wonder when I need to pee do I really need to or am I just faking. When I am hungry am I really hungry or faking. When I feel I need to sleep, do I really need to sleep. So I totally lost confidence about my basic needs. The number one Canadian syncope specialist told me and wrote it on his report to my PCP that I had somatization disorder or Munchaussen because he had never seen someone as sick so I can't be that physically sick. Munchaussen is when you poison or injure yourself to get medical attention. So I knew I was not poisoning myself but I thought my husband was. So I became very suspiscious of everything I ate. It took a year to get the real diagnosis at NIH. NIH is the National Health Institute in Bethesda. So I went to see a syncope specialist at NIH who gave me the medical proof that I was not a nut but had extremelly high levels of adrenaline and almost no renin. Then during the same stay I found out that I had genetic POTS and NCS and that about 80% of my family and extended family also had the same disorder. So I had no way to be cured. Now I accept it but it was hard at first.

Hi, I have those symptoms and the doctors can't tell me if these are two seperate disorders or the same one. I have been asking doctors since 2003 when I was diagnosed with POTS and NCS.

Hi Suzy, It came to a point where I was deeply convinced that I was a nut!!!! Doctors were telling me I was fainting standing on the bus or in the grocery line up because I was afraid of people and I believed it. Then they said that I was fainting because I wanted sex with them (the doctors) or because I wanted attention. At first I found it hard to believe but after years of being told the same things I believed it. They really screwed up my self perception and my self esteem. The first reason why I persisted to go for a diagnosis is because I was fainting all over the place every time I stood up so my family and friends told me that it was not in my mind but physical. I was accepted at NIH and the main reason I went there is to find out is I was a nut or not. I was relieved when Dr Goldstein told me that he had the medical proof that it was physical. I came back from NIH motivated to never let any doctor mistreat me again. So since that day I am very determined to have none of my doctors think or insinuate that I am a nut. Some have tried since 2003 but they have a surprise when they do. I think they wished they had never mentioned those words! I wished doctors would just learn to say: I don't know.

Hi, Probably a normal test result.

Hi Maxine, The surgeon took 5 biopsies of my colon while he was doing the colonoscopy and I was cold turkey. It did not hurt at all and I was looking at the TV screen and saw it while he was doing it. I was amazed. He told me that the GI rube does not have pain receptors for biopsies only for stretching. Good thing I was not sedated because the surgeon forgot to do the biopsy and I had to ask him to do it and he had to re-insert the scope in my GI to do the biopsy. If I would have been sedated I would have had to forgo it or if my GI specialist really wanted it have another colonoscopy later on.

Hi Melissa, I was saying that when it is a man that accompanies you to your appointment the doctor is more respecteful. On a note: I find that male doctors have a paternalistic attitude, meaning that they treat women as if we are little girls, whether you are 12, 18, 30, 50, or 70 years old. I find that very disrespectful and condiscending. Even in nursing homes you will see nurses call a 85 years old Mary, or Susan and the patient may be 50 years older.

Hi Suzy, I can really empathise with you. I was treated as a nutcase for 30 years. Now that I have my diagnosis and the medical proof that it is physical I don't put up with that cr* anymore. I stand up to doctors who are condiscending and treat them the same way they treat me. They really don't like it when I have that behaviour but I don't care because I think that all humans are equal whether you are a doctor or a non doctor. I have more university degrees and years of schooling that they have just in a different department. So I put my medical file right in their face and theyback off. The doctors that treat me well have a special bond with me. They like me a lot and they don't want to be alone on board with me as they are afraid I am going to die on them so they want to divide the medical risk. I have many specialists but this is the way they want to work my case. When a mean doctor says I have too many doctors or too many pills I tell them that if they want to manage my case all on their own and give me one pill that will make me better they understand that I mean business. Of course I don't go back to a mean doctor. I also realised that when I go with someone else, especially a man, doctors are much more respectful.

Hi, The first link is about Linda Smith, the founder of NDRF. She got diagnosed by Dr Robertson at Vanderbilt in 1998 I think.

Hi, Well I don't know about Cleveland but Vanderbilt does testing during the week-end, NIH and Mayo do not test during the week-end. I think Cleveland does not do testing but you can try calling the operator or another department.

Hi, I am always surprised on how doctors can be mean. I am sorry you were mistreated.

Hi, I am sorry for your loss. I will keep you in my prayers.

Hi Maxine, Yes, I did the colonoscopy cold turkey. Before going in I was sure I was going to faint because pain triggers my syncopes. When I entered the testing room the resident wanted to do the colonoscopy but the head surgeon said that he was going to do it. He was so precocious and went very slowly. He told me ahead of time when it would be painful so I had time to psych myself. It hurts when the scope turns the corner. I think it's because they have to put more air. I think that because I went in cold turkey he inflated my GI less than he would have if I had been under sedation because I hardly had any gases after the procedure (as 8 years ago I had gases for hours). Also, the best surgeon did the procedure and he was very careful in his movements as a resident would not have had the same dexterity. So I had no syncope at all and I was very proud of the surgeon and myself. I am excited about my visit with Dr Low and associate in 2 weeks. I can't wait to have a colored dream come through.

Hi AJW, I am sorry I forgot to answer your questions. I thought I did but either I answered on someone else's post or I imagined I answered. So.... My family does not want to participate anymore on the research because the doctors does not want to give them their test results and their diagnosis. My family does not want to be treated like lab rats and only give to science and get nothing in return. So, since they are relatively functional they don't mind staying the way they are. The sad part is that at least 6 of them have worsened in the past 4 years, meaning that they have started fainting. I don't have the emotional energy to deal with the researcher because he works in the same hospital where I was raped and my rapist is still working there. I just can't handle entering the bulding much less meet a doctor.

Hi, Welcome to our little world.

Hi, I am trying to figure out what mattress I should get for my new hospital bed. I had the viscoelastic mattress for 2 months and it was causing me major joint pain. I have been shopping for a few days and there are 3 types: spring, foam, latex. I seem to be always choosing the cheapest (without looking at the price) because they are the fluffiest. The salesperson tell me that they won't last more than 5 years. The better ones last about 10 years (latex) but I don't find myself as comfortable. What type of mattress do you feel comfortable on?

Hi, I tried to stop Cymbalta for my stay at Mayo and starting on the 3rd day I was getting so dizzy that I had trouble walking and sitting. I don't remember if I had that symptom before staring to take it or if it is because I stopped it. Do any of you have stopped Cymbalta and what reaction did you have?

Hi, Doctors!!! What would we do without them! What can with do with them!!! They are a special species!!

Hi, Thanks for your continued help. I just booked my plane ticket. I will be leaving in 2 weeks. I am very eager about it. Lolo: I asked the secretary why I have no test ordered yet and he told me that it's because I am Dr Low's personal patient and not in the POTS Clinic. So he has to see me first and decide what he is going to do with me. I have my appointment with him at 7:30 a.m..

Hi, I get tachy also lying down and NIH did not mention anything about it. I know I have SVT so it might be do to that.

Hi, I got mine at the drugstore. They are 1 g each and it costs about 13$ for 100 pills.