Ernie

Hi Migraine, My nephew uses a CCAP and he says he sleeps much better with it and he has more energy during the day. Good luck with the new equipment. I hope the insurance company will be "nice" with you. Ernie

Hi, It's the first time I read the article and I found it very interesting. Many symptoms overlap POTS. Thanks for sharing this. Ernie

Hi Julia, You surely have a lot on your plate. I know how frightening it is not to know what we have and how we can get even more frightened getting near a diagnosis. It is much more "final". On the other hand, you will be able to take a sound decisions. Could you ask the doctors to test the dye before they use the full dose on you? It's hard to deal with people who think we are hypochondriac. You know that you already have a surgery and that this thing is real. I think some people prefer to deny sickness rather than deal with the issues involved. Keep focused on your goal - get a second opinion and get a proper treatment. No one else but you know how much pain and suffering you have and you can tolerate. We are there for you. Hugs Ernie

I was diagnosed with endometriosis 15 years ago and could not get pregnant because of it. I don't know if I still have it but I still have the same symptoms as years ago. Ernie

Hi Julia, Thank you for your kind words. It encourages me to know that I am an inspiration. I am glad that I made you feel better. I was sure I was going to die during the first months also because I had severe diarrhea and was getting dehydrated. Good thing my aunt pushed me to get medical help because I could not think properly and figure out that I was that sick. It's strange to read what I felt at that time. I never realised that my life would change that way. I feel privileged to have meet you when I went to see Dr Grubb. You give so much of yourself and your husband was very nice also. I really appreciated going to the conference, getting more information and meeting more people. I remember that night I was constantly on the edge of fainting and I had to concentrate so hard just to remain conscious. I was glad that you were taking care of me. I would have never gone alone. I hope that we will have a chance to meet again. Ernie

I am on my 4th day of writing my biography. I did not need to take a nap today. I am getting the hang of writing and I am starting to enjoy it. I give myself 2 years to complete the whole project. Thanks for encouraging me. Nina, Yes, I want to make place for the postive stuff. I have a big clean-up to do but I am willing to do it. Corina, I like your idea of putting what you can't do in a box and looking at it once in while. I might try it myself. Dawn, I want to end mine on a positve note, ie Researchers find my etiology and the proper medication! I like this dream.

So far, I went to 3 neurologists and I had no success with them. I see an electrocardiologist who is so-so and I go to Dr Grubb when I can afford it. Ernie

Hi Beverly, Thanks for sharing this information. I read it all and it is very interesting information. I am sure that it will help dysautonomia patients and our doctors understand more what we have. Welcome to this Forum. Ernie

Thank you for being there for me and for understanding what I am doing. It means so much. I wrote the first 5 days of my acute phase and I had to take a nap because I was exhausted and could barely be a couch potato. I hope it won't be as difficult every time I write it. Paige: I am sorry that you had a nightmare marriage and a difficult divorce. Part of the reason I want to write my biography is for self therapy. It will be a difficult journey with ups and downs but I think that in the long run I will get something out of it. Merrill: You are right. I will have to go back and forth with some parts of my life. My graduation day was the day I was the happiest in my whole life. Michigan Jan: Congradulation on your success. I did not know you are a writer. The link between doing my degree and writing my biography is a good point. Ethanson: I will publish my biography. I give myself 2 years to write it. Maybe you will have more time to write your biography when your son goes to school. Good night Ernie

I am starting to write my biography today and every time I start to type I cry. My first chapter will start the day I got chronically acutely sick, December 12, 2000. This is the day 95% of me "died". Now I have to rebuild 100% of myself with the remaining 5%. What a challenge! This is a project I have been postponing for years and now is the right time. What I find difficult is to go back in time and relive the nightmare. I have been denying how sick I am for the past 4 years and make believe that I am on top of everything. Good defence system! So now I am just about to face up with myself and it is very very scary. Any kind words would be greatly appreciated. Ernie

Hi, I am the one who paid 3,000$ to see Dr Grubb. There was an extra 1,000$ because I fainted at the bookstore (I was rushed to the ER by his order) while buying his book "Syncope"!!!!!!!!! When I went 2 years ago it was worth every penny I paid because he is the first who diagnosed me and confirmed that I did not have psychogenic syncope. He is also the first who prescribed me a medication that worked and that turned my life around. At that time I still had the hope to return to work and I took my last savings to see him. Now I know I am disabled for the rest of my life and my government does not want to pay for him and I can't afford to pay myself. I would go anytime if I had the money. Every 6 months I keep postponing the appointment hoping that the next time I will have the money but so far I can't still afford it. So, in conclusion, I would go back if I could afford it and I am frustrated that I cannot get the medical help I need in Canada. Ernie

I buy mine at the pharmacy. It cost 20$ for 100 capsule. It is much better than table salt. Ernie

Hi Corina, Welcome to the Forum. Your English is perfect. I am Ernie and I come from Canada. My first language is French. I have POTS and NCS. You are the first person I know from Holland. Take care. Ernie

Hi Danelle, I am very sorry about the health issues you are facing. I know how frightening it is not to know what's wrong with us. I don't have much knowledge in the medical field but I would take the EP Study to know if I have electrical problems. I used to live on 2 salaries and be able to travel the world every second year. When I got sick 4 years ago we had to cut down on expenses. It was very hard at first to let go of some things but after a while I changed. The most difficult thing to let go was university. I enjoy studying and learning but it costs me 500$ per month for tuition. So, since I won't be able to work anymore it was no investment. I found hobbies that are less expensive, ie puzzles, TV, internet, etc.. Hugs Ernie

Hi Nina, I am so sorry that you had a bad fall. I hope that you recuperate soon. Ernie

Hi Dan, I am happy that your health as improved but sad that you are leaving us. I always appreciated your post. Good luck with everything. Ernie

I am so sorry about the loss of this little baby. The poor parents must be devastated especially after the loss of their twins last year. My thoughts and prayers will be with you and your friends. Ernie

Thanks for your advice, I have been thinking about what you all told me and I will go to rehab for a couple more months to see if it still helps me. Then in the cold winter month I will stay home and try the pilates or some other exercise. I looked into equipment price and it is about 2000$ for a rowing machine, and the walking machine is even more expensive. I might look into finding something second hand. I did not expect the equipment to be so expensive. Ernie

We live in a society where productivity and materialism is very important. Few people put value on personal relationship. When we watch TV we see people happy of owning this and this and how miserable we are if we don't have that car or that vacation. This puts a lot of pressure on people to earn money. So both partners work full-time and don't have much time for each other. A few decades ago it was "in" for the woman to stay at home and raise the kids. Many people are "competing" to keep their job and to appear successful by having expensive belongings. So you need 2 salaries or more. I believe that we can be happy with less possessions and better communication and goodwill. Our partners have to come to term with having a healthy wife or husband. Then they have to accept that their life will be different than their peers. They also have their limits - emotional and physical. They may be vulnerable to caregiver burnout. Many of them would benefit from councelling but few realise it believing that they are healthy hence OK. Ernie

Hi, This is a touchy question. I think it depends on the etiology of the POTS. Mine is genetic and half my relatives have it. We get worst as we age. The doctors told us that we have the same life expectancy as the normal population but my brother died last month of aneurism-stroke. I have had the symptoms since I was a child but up to 4 years ago I could function without medication. As long as I did not wait in lines as was OK. I have been feeling presync (dizzy and nauseated) all my life and I thought that everybody was fainting regularly. I only found out last year that it was not normal. I still have the hope that science will help us in some way. Ernie

Hi everyone, I have been going to rehab for the past month and I see that I am doing better than before. As you know, in Canada, temperature goes from 99F to -40F. So I was thinking that maybe I could buy a piece of equipment to train at home. This would protect me from fainting on the sidewalk or crossing the street (when it gets too warm or too cold). Do you have any advice as to what kind of equipment is good for us? I have looked at the eliptical machine, the rowing machine and the walking machine. Personally I prefer the rowing machine because I don't faint sitting. But I was wondering if it is better to train standing so that my body gets use to being upright. Dr Grubb asked me to lean on the wall for 10-20 minutes but this triggers the syncope almost everytime. So I stopped it after 2 months. Thanks for your advice. Ernie

Hi Biarose, I totally understand what you are going through. Here in Canada, we don't have an orphan disorder law so POTS is not researched. I went to see Dr Grubb almost 2 years ago and I had to pay out of pocket money i (3,000$ including hotel and transportation). I asked the Quebec government to pay for the visit since I found no specialist here to even diagnose me. They refused saying that we have many competent specialists for POTS. I went to 5 of the Canadian "best" and they don't know what to do with my case. When I was "healthy" I was paying my taxes and I thought the government would take care of me when I would get sick. No, not when you have a rare disorder. They just leave us on shelves, tell us that we imagine being sick and hope that we will die soon. Can you believe that when my brother died last month of the side effects of POTS there where no pathologist in Canada who wanted to do the autopsy. My brother was a "hot potato". We had to ship his body to the States. One would think that if you die they will believe that you were really sick. I was so *&)*")/ to learn that my brother died of a "panic attack". Now, we are waiting to find out what is the real cause of his death. If doctors would have listened to me when I started complaining about my symptoms 26 years ago (and even 4 years ago) I would not be disabled now. It seems that most professional in the medical community just don't care. So I am angry also. Ernie

Merrill, Ethanson, Sue, Susie thank you very much for your support and suggestions. I can read by your kind words that you really understand the feelings I am going through. It means very much to me. The plan university has made is that I will get in by the back door so that I don't have to wait in front of the door and be stuck in a bottleneck when the door opens. Then I will be sitting in the first seat in the front row with my best friend. My best friend will also be wearing a "gown" so as not to stand out. They will not make me stand in line and I will only need to stand when they call my name. I have about 7-10 steps to climb and 30 feet to walk to get my degree. (This is the spot where I am the most concerned about.) Then I have to walk back to my seat. My best friend will be holding my arm all the time I walk and will sit me down immediately as soon as she feels my hand sweating or shaking (my 5 seconds warning). She will discretely carry my portable chair. Another dangerous time is that I will have guests overnight. They are coming from out ot town. So I don't know how many hours of sleep I will be getting. I don't know if I should wear my long support hose or the knee high. The long ones give me more standing time but they also give me knee pain and irritate my skin so much that I also get irritable. Usually I wear the long ones only when I have to stand and walk around for a while but this time I have to sit 3-4 hours. Like you mentioned, I need to be careful about my emotions. It will be hard to control excitement of graduating and fear of fainting. I have a real challenge on my hand and I want my moment of glory. Thanks for listening to me. Ernie

Hi everyone, I have just finished my bachelor of arts with a major in Psychology. I am so excited to finaly graduate. It has been a difficult degree to earn because of al the fainting I went through the past 3 years. Often I have tought of stopping but with support and medication I managed to complete my degree. I went to get my graduation gown on Friday and yesterday my friend and I took pictures. I am graduating this coming Thursday morning and I am very nervous about the whole ceremony. My standing time is between 2-5 minutes before syncope and the university would like me to take a wheelchair to avoid any risk. I told them that for me it is very important that I get my degree upright. They have made special arrangements so that I don't have to wait anywhere. I am still very nervous about the ceremony because I don't want to spoil one of the most important day of my life. Do you have any advice (beside using a wheelchair) to help me through the ceremony? Thank you Ernie

I am at least the 4th generation of fainters and there are 2 other generations below me. Ernie