Ontrack1 Posted May 11, 2005 Report Share Posted May 11, 2005 Hello everyone. I found out about his site yesterday, and wanted to join. What a wonderful site it is. I have had dysautonomia for a long time now, and it is going to be really nice to be able to talk to others with similiar problems. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 11, 2005 Report Share Posted May 11, 2005 Welcome! I hope you find many friends here--and help when you need it. Nina Quote Link to comment Share on other sites More sharing options...
Ernie Posted May 12, 2005 Report Share Posted May 12, 2005 Hi,Welcome aboard.Can you tell a bit about yourself?ThanksErnie Quote Link to comment Share on other sites More sharing options...
Ontrack1 Posted May 12, 2005 Author Report Share Posted May 12, 2005 Yes Ernie; thanks for asking.I am a male who developed dysatuonomia about 15 years ago. I am in my 30's now. I was told that I have the POTS form. I have low blood volume and orthostatic intolerance. I have not been able to work since developing the condition. I am on social security. I try hard, I am not a lazy person. I just have too many symptoms to hold down a job. Life is definately hard. I read that it is mostly women who get this, but I do not know if this is fact or not. Is there one gender or any one race that is more at risk for developing this disorder?I take a beta blocker for my symptoms. It is the one drug that helps me the most. I can't tolerate any stimulants= caffeine, etc. I find Ativan helpful at times as well. Did someone on this site start this board? It is really nice. When did you develope Dysautonomia Ernie? Is POTS a degenerative condition like autonomic neuropathy and are they the same. It is quite confusing. My doctor told me one time that I have autonomic neuropathy , but then he says that I have POTS. It's a little confusing.I had all the autonomic function tests= blood volume studies, tilt, blood work, etc. Quote Link to comment Share on other sites More sharing options...
smiley0480 Posted May 12, 2005 Report Share Posted May 12, 2005 Hi ontrack1,I haven't heard that POTS is degenerative, but I also have only got info from my doc I haven't done much reading about it myself.I haven't had a tilt test done but my EP said to me that from my symptoms I probably have some overlap. I have IST which I have had the sinus node ablated but also have some OI and POTS symptoms.Do you find anything that does help you?Smiley Quote Link to comment Share on other sites More sharing options...
Ernie Posted May 12, 2005 Report Share Posted May 12, 2005 Hi Ontrack,My POTS is genetic and I started to faint when I was about 5-7 years old. I was able to manage my life by compensating most of the time until 4 years ago where I crashed hard and became disabled.In my extended family there are as many males as females with this disorder. Again in my family some members have it all there life and function relatively normally and others like me are disabled. There are 4 of us who are disabled. The rest can work.My father lived until 72 years old and he had POTS and syncope. My aunt is 80 years old and still alive with POTS and syncope and many other health issues.I think it's Michelle and Nina who started the forum. Someone correct me if I am wrong.Take careErnie Quote Link to comment Share on other sites More sharing options...
Ontrack1 Posted May 12, 2005 Author Report Share Posted May 12, 2005 Smiley-- Hi. thanks for the reply. What helps me the most is lots of drinking water. Especially helpful to drink it when I first wake up -- then wait about 10-15 minutes before getting out of bed. I don't know if it will help you, but I would say give it a try. It can't hurt none. Ernie-- Very sorry to hear about your many family members who have this as well. But it is good to hear that you have several who have lived to an old age. I find comfort in that. Quote Link to comment Share on other sites More sharing options...
Merrill Posted May 12, 2005 Report Share Posted May 12, 2005 Hi, welcome here. You might want to check out some of the links that Nina put together into one handy dandy post ... there's a lot to learn, so take it slow and read what interests you most!Best,merrillhttp://dinet.ipbhost.com/index.php?showtopic=1954PS special thanks too to Michelle, who started/runs the forum. Quote Link to comment Share on other sites More sharing options...
JLB Posted May 12, 2005 Report Share Posted May 12, 2005 Hi, Ontrack. Welcome.My two cents: Nina and Michelle are the best. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted May 12, 2005 Report Share Posted May 12, 2005 Welcome ontrack! Hope you find this forum helpful and supportive. I believe the rate is higher among females, but that might have to do with the fact that a lot of guys don't want to say they are ill. It's nice to have guys on here for their input. Hope ours can help you. It is all very confusing. I am disabled also. I have been sick a very long time as I am 3 days older than dirt. I believe many of the disorders overlap and that's why they are confusing to so many. I just assume I have overlapping stuff, because I seem to have a little of everything. Am rambling, but again welcome! morgan Quote Link to comment Share on other sites More sharing options...
funnyfrog Posted May 12, 2005 Report Share Posted May 12, 2005 Hi OnTrack 1 - I just wanted to say welcome and introduce myself to you as our forum insomniac who is usually up posting at crazy hours of the night due to this wackiness that POTS does with the adrenaline in the body - I am usually wired and up most of the night and then tired and sleeping alot during the day. I also am in my thirties, worked for the state govt. until 3 yrs ago when I got real sick, crashed hard, was in the hospital for 5 months and haven't been able to work since - On the bright side, I get to see my house more, spend time with mt husband and 2 cute cats and am grateful to be alive and am a stonger person because of this illness. I hope you find lots of info on this site. Welcome again!!!! Beth Quote Link to comment Share on other sites More sharing options...
Ontrack1 Posted May 12, 2005 Author Report Share Posted May 12, 2005 Hi Beth, Morgan, Merrill, and JBL. Thank you for the welcomes. Beth, since we are about the same age, I was wondering if you noticed anything in particular that brought on your symptoms? Quote Link to comment Share on other sites More sharing options...
funnyfrog Posted May 12, 2005 Report Share Posted May 12, 2005 Hi - I was working alot and living in NJ and commuting 3 hours to work each way, we had moved to NJ and I had a great job for NY State and worked with great people so I chose to leave my car in the commuter lot here and take the commuter bus into NYC and then the train and Long Island Railroad out to my job -Anyway getting back to the point I was commuting 6 hours a day, working 7 1/2 hours a day, getting home at night and then doing laundry, cleaning etc, not getting enough sleep, not eating right and I was worn down and my body was ripe for picking up a virus so I guess with all the people in THe Port Authority in NYC, Penn Station, or on the bus or trains, I must have picked up some weird virus that did this to me. Its strange though, because before 3 years ago when I got sick, the year before, I blacked out one morning in my shower when I got up for work, wound up in the hospital for 9 days that time with all the POTS symptoms and was not diagnosed and for that whole year, I was sweating alot, was dizzy when I was running to try and catch buses and trains and out of breat all of the time, but I thought that I just was not getting enough sleep and didn't think anything of it until I blacked out again in March,2002, couldn't hold food down and that was when the real nightmare began. Its strange how one day you are in the prime of your life, with a great job, a good future and then wham, everything changes overnight. It has taken awhile to adjust to life as it is now, but I know that I am not lazy, never was and every thing happens for a reason. Beth Quote Link to comment Share on other sites More sharing options...
funnyfrog Posted May 12, 2005 Report Share Posted May 12, 2005 Its me again - I juist thought of something else - My neurologist said that just about every patient that he has treated with POTS/dysautonomia also has mitral valve prolapse which I do and therefore, there has to be some connection somewhere that makes us picking up POTS if we got it from a virus and not like the people who have it because of genetics. I wish there was more money for research for this so that doctors coul.d see where the problems lay and how to fix them. I know my words don't come out right sometimes-my cognitive thinking has gotten screwy from all of this- when I read back over my posts, sometimes I wish I could explain myself better - Sorry for the typing errors also. Beth Quote Link to comment Share on other sites More sharing options...
Eillyre Posted May 12, 2005 Report Share Posted May 12, 2005 Hi Ontrack! Welcome to the family. Yes, it's hard to be so young and unable to work (from one who's there, too); glad you found us!Angela Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted May 12, 2005 Report Share Posted May 12, 2005 Hi Ontrack!Welcome and yes, you are among kindred spirits!tearose Quote Link to comment Share on other sites More sharing options...
geneva Posted May 12, 2005 Report Share Posted May 12, 2005 Hi Ontrack and welcome to the family. There is so much good information on the website and here at the forum that you will probably find others who have exactly the same experiences you do. Somehow, that is always comforting! Quote Link to comment Share on other sites More sharing options...
DancingLight Posted May 14, 2005 Report Share Posted May 14, 2005 welcome ontrack!!!yes, in general i think that this illness is viewed as a 'women's illness'...but i don't want to quote stuff that is wrong!anyway, you will find this board is mostly women! so, either you will be keeping US in line, or we will be keeping YOU in line...we'll see, huh? just teasing you!i'm the insomniac on duty tonight i think, so i'm a bit loopy.later alligator and welcome! this site is a huge blessing.emily Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted May 14, 2005 Report Share Posted May 14, 2005 Autonomic neuropothy is part of pots. It is a loss of feeling usually in your extremeties. I have it in my feet, hands and part of calf andfront of quadracepts.Neurontin works great. Dont have the pain that can come with it. Welcome. Miriam Quote Link to comment Share on other sites More sharing options...
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