Thnking Back

[Mary P]

In reading your many many messages and comparing them to myself, I've come to think that I've probably had symptoms of orthostatic hypotension, specifically POTS, on and off since I was a child. I fainted a lot as a child and now and then as an adult. I've had cold hands and haven't been able to sweat my entire life. As a result of the latter I guess my body overheats and I can't tolerate the cold or heat and humidity or exremely warm indoor environments. I've had a number of TIAs which I've learned can be caused by orthostatic intolerance. For many years now I've had problems with light-headedness and loss of balance, but tests showed that I've had had no inner ear problems.

Things seem strange now as I think of my past but things have also begun to make sense as well. I'm wondering if this sort of thing happened with anyone else?

I've also begun to realize that, although no one knew it at the time, my dad surely must surely have had POTS. He died 42 years ago and had what we would today know to be Parkinson-like symptoms. My doctor told me that I could develop this but I didn't think about my dad at that time, and haven't wanted to think about it even now. However, I feel that I have a new family within this forum and feel that I can share this with all of you.

I won't relate everything but I remember how, when he could no longer walk, my mom would stand behind him, put her hands around his waist, and put the toe of each of her feet right behind the heel of each of his feet. Then by gently pushing one foot at a time, she would take him to wherever he needed to be. I remember the last time she did this was to take him and get him into bed. He died quietly of a stroke that night. An Irish-style wake with fiddle music and singing was held for him at home. Are any of you old enough to remember a wake being held at the deceased person's home?

My know my mind is wandering, but since I've made the connection with my dad and POTS it has been led in many directions. My mom was rewarded I guess, because after operations, she was kept at home through terminal cancer and was able to die there as well.

Wouldn't it be so wonderful if each of us could be cared for and die so gently!

I guess I think more of this because, at age 70, I know that I'm much older than any of you, and full blown POTS happened to me much later that with all of you. I have so much admiration for all of you young people who ar dealing with Potts while raising children and working and goodness knows what else you are doing. Take good care.

[deucykub]

Hi, Mary:

What a beautiful post. Thank you for sharing that with us. I've had symptoms since I was very young, too. I think they started after I was in a car accident when I was 10. I never fully fainted, but I blacked-out every time I stood up (vision would fade completely to black, I'd get dizzy, my ears would ring, and I'd basically run into a wall and lean over until I could see and hear again).

My Mom took me to a doctor back then, and he told me it was because I was tall and thin. Ha! I am the pioneer diagnosee of Tall Thin disease.

I've recently learned that several members of my Dad's family are orthostatic intolerant - one is even on disability for it. My Dad, who just turned 70 last year, used to faint as a kid, and his doctor at the time told him he had "low blood." Interesting... that doctor was probably closer to what was really going on than most doctors today!

[juliegee]

Hi Mary,

I can relate to your beautiful post. I, too, feel as though I've found a family here on this forum. So many people here deal with the same things I do. Like you, I think I've had dysautonomia symptoms my whole life....but they certainly flared after a bad car accident, 14 years ago. And, I also have many family members who deal with the same things, including my mother and my son. POTTS or POTS, we know what you mean:-)

Julie

[Mary P]

Hi, Mary:

What a beautiful post. Thank you for sharing that with us. I've had symptoms since I was very young, too. I think they started after I was in a car accident when I was 10. I never fully fainted, but I blacked-out every time I stood up (vision would fade completely to black, I'd get dizzy, my ears would ring, and I'd basically run into a wall and lean over until I could see and hear again).

My Mom took me to a doctor back then, and he told me it was because I was tall and thin. Ha! I am the pioneer diagnosee of Tall Thin disease.

I've recently learned that several members of my Dad's family are orthostatic intolerant - one is even on disability for it. My Dad, who just turned 70 last year, used to faint as a kid, and his doctor at the time told him he had "low blood." Interesting... that doctor was probably closer to what was really going on than most doctors today!

Hi Deucykub,

It has helped me to read your kind response. The things that you mention happened to me as well and I never fully fainted either. I had to lie down and I still do. Now that you've mentioned 'low blood' I recall that my dad's doctor told him the very same thing. Amazing, isn't it! This is why it's so great to have this sharing and caring with our forum family.

My husband was a gentle teaser and sometimes, to give a lighter look at things, he'd give me a big smile and hug and say, "You must have felt a bit dizzier than you normally do". Because of the way he'd say things, this never bothered me, rather I loved it because it meant he cared.

Once when he was in a hospital to have a blocked vein replaced with an artificial type, due to cholesterol, his doctor would send him to talk with other patients who were in distress over similar things that were what was happening to them. These people loved and treasured his visits and my husband became lifelong friends with some of them.

Mary

[Mary P]

Hi Mary,

I can relate to your beautiful post. I, too, feel as though I've found a family here on this forum. So many people here deal with the same things I do. Like you, I think I've had dysautonomia symptoms my whole life....but they certainly flared after a bad car accident, 14 years ago. And, I also have many family members who deal with the same things, including my mother and my son. POTTS or POTS, we know what you mean:-)

Julie

Hi Mack's Mom,

I'm so happy that you responded. It has allowed me to 'think back' again. No matter what the situation, I'm sure it's good for all of us to realize that others know and share what we're going through. I've never been in a car accident but in 1982 I fell on my back on black ice and immediately did a backwards summersault. I was also immediately light-headed and sick and had a terrrible headache for several days. I saw a doctor and he daignosed a consussion. Later, when things didn't improve, I was sent to an ENT doctor but no problems were found there.

Now, when I hear that both you and DeucyKub feel that your Pots symptoms started after a car accident, perhaps the same started for me after that fall. I could even hear the 'crack' as my head hit the ice. Who knows?

Mary

[Mary P]

Hi, Mary:

What a beautiful post. Thank you for sharing that with us. I've had symptoms since I was very young, too. I think they started after I was in a car accident when I was 10. I never fully fainted, but I blacked-out every time I stood up (vision would fade completely to black, I'd get dizzy, my ears would ring, and I'd basically run into a wall and lean over until I could see and hear again).

My Mom took me to a doctor back then, and he told me it was because I was tall and thin. Ha! I am the pioneer diagnosee of Tall Thin disease.

I've recently learned that several members of my Dad's family are orthostatic intolerant - one is even on disability for it. My Dad, who just turned 70 last year, used to faint as a kid, and his doctor at the time told him he had "low blood." Interesting... that doctor was probably closer to what was really going on than most doctors today!

Hi again DeucyKub,

I forgot to say that I got a great morning chuckle from your diagnosis of 'Tall Thin' disease. It might be fun to put it out there for anyone else who might want to share other similar experiences, similar to all who responded to what jobs they have.

I'm retired after 35 years of teaching Grades 1/2 and then 5 years of teaching children from Kindergarten through University at church to do the readings, ushering, etc, just as the adults did. I loved every second of my involvement with these beautiful children and miss it terribly. However, as I had to slow down more and more with my church ministry work, I was forced to retire.