jjpots

Do you know why they don't see it often in people over 50?

I was on Benicar for the past 5 years after my twins were born and that was for the cardiomyopathy. My cardiologist thought that taking me off that would make my tachy issues better- guess not. When I say "only POTS DX" I meant no other dx. like whatever the other dx. are that people have listed at the bottom of their posts.(Isn't that bad that i just read those things and can't remember what any of them are?) For the past year I've had they tachy stuff with the low bp but now I've been having the '"brain fog", more chest pain/ pressure, my legs ache when I sit even if they aren't crossed, seem to get off bal. more and dizzy more but not to the point of falling or passing out and my stomach seems just more upset lately. Oh yeah, and tired. I was so embarassed tonight. I was helping to collect money at this jewelry training I was at and for some reason a lady gave me $25 for the $10 she owed and I could not for the life of me figure how much change I owed her! It makes me mad! I know I'm not stupid but that's how I feel lately. Then I go back to thinking, this is all in my head and I'm just being a baby which also seems to be a difficult emotion to figure out. Thanks for listening and for everyone's input.

I was wondering who has only the POTS Dx? At this point my only dx is POTS ( Two previous cardiomyopathies which they beleive were pregnancy related)and up until the last year I've done pretty well with only occasional Tachy. My cardiologist took me off my heart meds. about 3 weeks ago and this past week it was like I got sick or something and I've had a lot of symptoms since then. I'm just wondering if other people started out without many issues and it has got worse? Is that the way it always works? Just trying to figure some of this out. I guess I probably was having some other symptons before but just didn't realize that's what they were. If you did get worse was it temporary? JJH

Tammy, I know what you mean about tonight. I can out of a meeting tonight at 9 p.m. and I think I could see my breath already! My hands and feet are always cold. I have a hard time turning on our touch lamp in the bedroom I think because my hands are too cold. I'll touch it 4 times and nothing, my husband touches it once and right away it comes on! Do you find that one hand is usually colder than the other? My right hand seems colder right now. The other thing that no one has mentioned yet is something I just found out about. I don't know what you call it but they sell it for hunters. It's like a little gel pack that you just bend it and mush it and it turns hot and stays warm for quite awhile. Then you bring it home, it kind of gets firm again and I beleive you boil it or something and then next time you want to use it you just bend and mush it again. It's weird but cool!

Tearose, What dept. is Dr. Fealy in? I saw dr. Low in I beleive it was neurology and Dr. Borgoson in cardiology. I definately like how the Mayo works with all the diff. disciplines together. I'm just trying to figure out if I can go there again. Last time I was there 3-4 days and not sure I can afford it plus theres the kids issue and where do they go. Thanks for your input. Now I guess I just need to sort this all out and make a decision. I'm the kind that once things settle down I'll be like, well now I don't need to go because I'm not currently having issues. I suppose that's not the right attitute. I should get it checked out so I know how to keep it under control for next time. I am feeling the best today that I have in a week- yeah! Maybe it was just a passing virus and I can go back to just being tachy. That doesn't seem so bad now:)

I'm late chimming in on this conversation since I just started this forum but wow! I was just talking with someone this week, actually trying to have an in depth conversation and was nodding my head when I got dizzy. I was having a really hard time concentrating and holding the conversation. I thought it was all in my head and that I was just being a whiner about how I felt. Also, from reading the other comments I realize that it's the POTs that causes me to be out of breath when I try to talk and stand. And... my husband often gets upset because I talk too quietly and he can't hear me. I bet it's the same reason too. Wow, so many things are starting to make sense since I joined this forum and have been reading everyones posts. Thanks for sharing! JJH

Wow Dari, I know I don't know you but I can understand your frustration. At my church last weekend they just talked about how we are sometimes the only glimpse of Christ that people will see and how we need to make sure to be loving people. Hang in there! JJH

I've noticed that sometimes I will have symptoms (not fainting though) and my bp and pulse won't be that off so I don't understand it either. I always thought that there would be a drop in bp when dizzy or fainting. Hope you can get some info on that. I know it's frustrating not having answers. JJH

Hi Tearose, I was curious who your dr. for the POTS is at the Mayo in MN. JJH

Me again, There is a website too: www.conquerchiari.org another one is www.ASAP.org. Hope it's helpful for someone. JJH

For anyone interested- Extreme Home Makeover on ABC had on a family where the mother and three daughters all had Chiari Malformation. The mother on the show has a suuport organization for others with Chiari. The mom talked about how she saw probably 100 diff. docs over 16 years before she was diagnosed with it. JJH

Hi Rhonda, Do you have to be referred to either of these doc to get in to see them? Do you know if it takes a long time to get in to either of them. Is Abbott part of the Mpls. Heart Institute do you know? Thanks again for your input! JJH

Tammy, Thanks for the info. So do you think if the only current issue that I know of is the POTS, this would be a good dr.? I have been to the mayo in the past and I like how the cardiologist and neurologists worked together but at that time I think the cardiomyopathy was still an issue. I'm just confused as to who I should be trying to see even. MNSue, Thanks also for the info. like I just said to Tammy, I'm not sure which type of doc I should be trying to see. The last one I saw was and electrophysiologist and he said he thought my cardiomyopathy had improved to the point of taking me off of my heart meds. He thought that would help slow my heart down but I'm still having problems. I'm just not sure if he has the knowledge of POTS that I would like him to have. If POTs is the only issue now do know which type of doc would be appropriate? Thanks, JJH

Yep, I agree. I got some sort of a bug or something this past Monday and today is the first day I've felt half way normal again. JJH

I've never replied before so hopefully I'm doing this right. I am currently a stay at home mom of twin 5 year olds and a 10 year old. To help with income I have a home based business doing jewelry shows. Recently I've had to start sitting when I do the presentation because I get too out of breath trying to stand and talk. I am hoping things get better by the time the twins go to school so that I can get back into my occupational therapy assistant role. JJH

Hi, I'm brand new to this so here goes. I was dx with POTS about 8 or 9 years ago. I have also been dx with cardiomyopathy two different times. My heart function has improved and I've been taken off my heart meds. My cardiologist was hoping that taking me off the meds would help my POTS which seems to have got worse over the past few months. I've been having a lot of trouble with fatigue. This past Monday I had a weird thing where all of the sudden I felt like I was going to throw up. I had dry heaves, started shaking and my pulse went nuts. It didn't last too long but all week I've been feeling super tired and out of it. I say all that just to see if anyone has experienced this or has the same dxs. Also, I have seen Dr. Low at the Mayo in Rochester but it's not exactly close to me. I see on this site that there are some docs at the U of M and I was wondering if anyone could recommend one? Thanks for any input! JJH