Ernie

Hi Mary, I am so sorry for you and your daughter. It is so unfair. I just don't know what to tell you but I feel for you. Ernie

Thanks Briarose for sharing this information. Good idea to control our stress level as much as possible, especially when we have high adrenaline! Ernie

Hi JLB, I would try to decrease the stress (if possible) and take something to boost my immune system. Ernie

Hi Emily, That's a way to go girl. What an accomplishment! Hope you recuperate fast. Have a nice week. Ernie

Hi Nina, I am sorry you have herniated disks. Good news that you can have meds that work. Ernie

Hi Merrill, Congradulation, That is a wonderful news. I think you made a good decision. Like Katherine I can't wait to see the picture of your little one. Ernie

Hi Blacwolf, I hope you had a restful sleep. Good luck with the sentencing this afternoon. Take care of yourself, no standing too long. Stress can make you more symptomatic so be extra cautious. Ernie

Thanks Briarose for the advice. I will check it out. I also appreciate your comment on "God Complex". I run into many of those God's. Lately I am finding a few humble doctors who are a bit interested in treating me. But they don't have the guts that Dr Grubb has to try new medication. They only limit themselves to what is the usual treatment: BB, midodrine, Florinef and salt. Ernie

Hi, I agree that this attitude is generalized in the medical community. Most of the time I go to University Hospital and the first person who sees me is a resident. So this person has no degree whatsoever and his doing my medical history. What the person gets from what I tell them (as you know we have weird symptoms) is what the specialist will consider. I think it is pretty bad since I have a rare disorder and it is not tought in med school so having a med student doing the screening is quit scary. Ernie

Hi, You will have a battery of tests,a diagnosis and maybe they will suggest some treatment. Usually you are an outpatient and you have to stay in a hotel nearby. Good luck Ernie

Good luck Hayley, I will pray for you so that the doctors find a good treatment for you. Keep us posted. Ernie

Hi Michelle, Well I just received the notification! I guess it got lost in cyberspace. Sorry for the inconvenience. Ernie

Hi Blackbirdsings, It must have been a terrible experience to faint in a parking lot and have no help. I have fainted in parking lot and so far I have always had help. I am afraid that someday nobody will help me but I still continue to go out. Most of the time I park very close to the door and try not to be alone (I use an "escort")! Ernie

Hi Michelle, I did not get the notification either and I am on Hotmail. I read the Newsletter and found it very interesting. Keep on the good work. Thanks Ernie

Hi Beverly, I am your next door neighbour. I live in Canada! Here we have a social health system which is about equivalent or less than Medicaid and Medicare. When we need a specialist either for diagnosis or surgery the waiting time is between 1-2 years. Our medical technology is lagging far behind yours. We don't have enough doctors so some people don't even have a family doctor. I went to Dr Grubb for the initial diagnosis and medication. I had to pay out of pocket and it was worth it. Ernie

Hi Beverly, I feel so much for you and Nicole. I have read your post and it is so touching. I admire you for the care and love you give your daughter. I would also appreciate having a mother like you. I think that it is a good decision to have Nicole live with you. She will be able to improve faster. Just watch yourself (and your husband) for caregiver burnout. Thanks for updating us. I was wondering how things were going. I dont' know about Mayo because my country won't pay for it and I don't have out of pocket money to pay for it. I know that if you have "inside connections" you get in faster. I took Clonidine for the high BP and it increased the fainting immediately. I tried it 3x and then I definitely stopped it. For years I was able to go with holistic medication for my condition but now I have gotten too severe and I need regular meds to increase my BP and lower my HR. I still use herbs for my allergies and to boost my immune system. I'll be praying for you and Nicole. Hugs Ernie

Thanks Emily for the good wishes. That is sweet of you. Ernie

Hi everyone, The study finished at 5:30 and I hardely slept. The room was too cold. So after 2 hours of freezing I decided to use my coat as a blanket. I did not shower before coming back and went straight to bed where I slept until noon. The technician told me that I slept a bit but I have the impression of not having slept at all. I am very exhausted but what else is new! I'll know the result in December. They did not take BP or film the study, no shower or breakfast. Ernie

Thanks Briarose for your offer. I have so many questions and none at the same time so I will just try to focus on something else. Well I am leaving in 10 minutes. Good night everyone. Ernie

I would like to have one of those couch. Looks kind of neat! Ernie

Hi Thanks for sharing this information. My POTS is genetic but I wonder how the first person got the mutation. It was more than 100 years ago. I had a client a few years ago who was sick and I told him to go to the hospital because I could not help him. He was hospitalized and after a few weeks of testing and no diagnosis they told him it was psychological. He died one month after. On the death certificate they wrote as the cause of death "cancer". I guess they can be intelligent enough to figure that you don't die of a somatic disorder. When I read what we all go through with medical world I wonder how sick do we have to be for doctors to believe us. Ernie

Hi Divine Spark and Tearose, Thank you very much for the information. That is very very interesting. I appreciate having all these details because I can prepare myself emotionally ahead of time. I will surely ask to stay in bed until later. I don't know if I slept last night because I am getting anxious. I had the impression to be awake most of the time. I don't know what makes me worried so much. It's not like a TTT where I know I will feel like /*$&/. I am just going there for sleep. But even if I know that I still worry. Can't wait to be over it. Ernie

Hi Paige, I am sorry that you had such a bad episode and that you were not well treated at the ER. It infuriates me when I read about people like you who have such readable low BP and the medical staff just act as if it is normal or somatic. I would try to go to a different ER and tell them about the seizure or tremors and ask to be tested. Also I would not take the risk to drive. I don't know if you were still permitted to drive but for the moment it would much safer to put it on hold. I know the feeling of impeding death. I just want to reassure you that I think you will live even if I understand how scared and powerless you feel. I will be thinking of you. Ernie

Thanks everyone for your answers. I reassures me to know what will be going on. I am the type that needs to know many details. I will take into consideration your suggestions: take some food with me, ask to sleep until later, and ask the technician to take my BP and HR more often than with regular patients. I know my BP is very instable even lying down. Hi Tearose, Thanks for asking. I have not prepared my bag yet. My study is Saturday night but I should start to get ready soon. I have most of my questions answered. I forgot to ask the hospital if we can take a shower before leaving in the morning and if I will have a shower chair. They told me that I am to take all my medications including my sleeping pills. I find that very strange because it is the first time that I am not asked to stop my medications for a study. I hope the study will be worthwhile. I am kind of nervous about it because I am afraid to faint in the morning. This is my most vulnerable time and especially when I have not slept enough. I hope that the staff will be nice to me. I have read your post where you talk about sleep arousal. Before you did the study did you realise you had this problem? After reading your post I realised that after 5:00 a.m. I have the feeling that I am always waking up and trying to go back to sleep. Does it sound similar to your symptoms? I know that I have sleep apnea sometimes but I just don't know if I have it every night or only when I am very tired. The sleep specialist also think that I might have asthma. This is also a possibility because at least once a week I wake up coughing and coughing. My father and brother have asthma. They want to test me later on for asthma but want to do the sleep study first because I have serious problems with Valsalvas! Ernie

Hi Corina, It's nice that you had a pleasant vacation and that you enjoyed yourself. Hope everything is fixed in the house now. Ernie