What Were Your First Symptoms And Dx...and When?
Posted 05 December 2012 - 01:02 AM
i will post another poll type post in a minute...........
Posted 05 December 2012 - 08:45 AM
Posted 05 December 2012 - 09:48 AM
Posted 05 December 2012 - 12:49 PM
The first symptoms are in bold:
Daughter 1, now 16, was diagnosed at 10 1/2 years old with fibromyalgia then at 12 with POTS. Her first symptoms were unexplained and ever changing areas of pain throughout her body (she wasn't an athlete where she was straining her muscles or anything like that)We invested in a bunch of over the counter braces/splints because it made her feel better to have her joints supported one week it was her ankle the next it was a knee,, the next her shoulder, on and on.. And fatigue She also started sleeping more and having worse quality sleep. She would and usually still is.." sleeping" for 11-13 hours a day and had been sleeping 9-10 hours a day at age 10.
The dysautonomia symptoms started at age 11 1/2 with: presyncope(black outs, dizziness), tremors, alot of GI pain and migraines, heart palpitations (which we found out was tachycardia), sweating profusely and shortness of breath.
So she has been feeling like this for 6 years, with many other symptoms that have come their way, too many to talk about here, and we have tried almost everything out there for treatments and have great doctors, but that is how it started for her.
Daughter 2, now 11, started at age 9 with colors in her vision (vision disturbance). red and blue (older daughter has vision disturbances too). The color can be throughout her visual field or it can be in shapes or blobs that move around in her vision.These colors get worse when her other symptoms of dysatonomia get worse. Then nausea everyday, came along next, along with GI pain.. Then presyncope symptoms came next at age 10. This year at age 11, she has the dizziness and passing out feelings even when sitting.. She is usually very cold, wears alot of layers of clothing, and even her 3rd grade teacher 2 years ago, noticed that she was looking very pale in color. She has orthostatic hypotension.
Posted 05 December 2012 - 12:53 PM
Posted 05 December 2012 - 01:20 PM
My first symptoms were at around the age of 2. I had severe GI issues, allergies, low bp and started passing out everyday by the age of 6. I remember having to sleep on my moms floor because I would wake up and not be able to open my eyes from the histamine and then try to get up and black out...I didnt have tachycardia and the plethra of other symptoms till my 30's though.
Posted 05 December 2012 - 04:53 PM
I hope your son does not either, I wouldn't wish this on anyone (well almost anyone, lol ).
Its been a rough 6 years so far.
What the first specialist told me when Lauren was 12 and diagnosed, is that the parents may not have dysautonomia, but may have "related issues" to pass on the genetics. So, my husband has always had alot of sweating, and I have migraines and something like IBS, and recently diagnosed with a type of colitis. Both of my daughters show tendancy towards hypermobility, and I do see some possible hypermobility issues in my sister and her daughter, my niece. So, no, we have not been diagnosed with dysautonomia.
I know Lauren has a friend with POTS, she is 20 years old, and she has made the comment that she may decide to not have her own children someday since she does not want to pass this disorder on. I know that is pretty extreme to feel that way and she is only 20 and there are good chances her children will not have it.
Thank you for your kind words.
Posted 05 December 2012 - 05:28 PM
With my 23&me genetic testing ---it was quite the eye opener as I could connect almost all my symptoms to what I have genetically inherited genes for. I know that genes don't necessarily have to "turn on" and hope that many of the things that genetically I'm pre-disposed to never happen. But, if they do ---then I know where they came from. Us and our imperfect bodies.
When I can remember my symptoms and them getting worse was after a polio vaccine when I was 8 years old.
Posted 05 December 2012 - 10:21 PM
Posted 05 December 2012 - 11:10 PM
I believe my grandfather had it and one of my sons may have it. One of my sons passes out at the site of blood or if he has an injury. He also stays awake until early morning and then sleeps half the day. Maybe a mild case of POTS/adrenal insufficiency.
My other son sleeps like crazy. He has been passing out and having a seizure type event since a stomach virus at the age of 5. I think he was also born with POTS. I believe he got hot like you do right before you throw up. He threw up and then passed out cold while having a small seizure. Scared me silly.
He since passes out whenever he is injured or sick. He is now 17. He has learned to cope and keep from hurting himself before he passes out by sitting or lying.
He and I both break out in hives for no apparent reason. I come close to passing out a lot. I am able to fight it and usually win.
I guess diagnosis came this year (I'm 44), but not formally. I was researching my symptoms and had a few tests done. I self diagnosed. I'm a nurse and found that I fit all the symptoms of POTS and adrenal insufficiency. Blood tests confirmed the adrenal issue. A stress test confirmed POTS. I was in a full run and my pulse was 184 while my blood pressure was 84/50.
Posted 07 December 2012 - 05:50 PM
Since I was treated with Amphotericine B (2008), I became very tired. I managed to live like that for 3 years, until last year september. I almost collapsed at work, I work at a Blooddonor Centre. So the doc there measured me, BP 170/120 HR 150. She taught stress (like all the rest did in the beginning) and send me home.
4 monthes of research didn't gave me any hope. But then I went to a chronic fatique centre, they put me on the TTT. HR rest 70 -> upright HR 130. It took me about half a year to get dx with POTS
Posted 10 December 2012 - 03:28 PM