What Were Your First Symptoms And Dx...and When?

[Angela]

i dont do polls cause it seems like there are so many diferentials usually unthought of or left out..............

i will post another poll type post in a minute...........

[misstraci]

My very first symptom was me blacking out at work (pre-syncope, lightheadedness, whatever you want to call it). It was all down hill from there. That was October 2010 and it wasn't until May 2011 that I had a tilt table test and was diagnosed.

[Christy_D]

My son's started with abdominal pain/cramping. First diagnosis was abdominal migraine. He was in the 5th grade when symptoms started, got a correct diagnosis of POTS at the end of 8th grade. He is now a senior in high school.

[llcsmom]

Well, I have 2 daughters and they both started having symptoms at age 9-10 years old.Kind of freaky to see the same or very similar issues and symptoms happen all over again with my younger daughter at the very same ageI

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.

[Angela]

llcsmom, do you have pots or anyone in your family with dysautonomia? I'm so sorry for your children; I hope and pray that my son doesn't have to go through this thing.

[k&ajsmom]

Hi,

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.

[llcsmom]

Hi Angela,

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.

Dawn

[issie]

I do think that there are genetic links with many of us. My sister has OI and now two of her children are demonstrating OI and POTS - one is a fainter the other isnt. I don't faint - but my sister does. I have HyperPOTS. Many of my family members demonstrate EDS and connective tissue disorders mostly on my mom's side of the family. My dad has a very strong indication of autoimmune type issues and neuropathies. What's the chance of having two parents that when combined pass on all the nasty genes. Well, I got a double dose. My dad has mitocondrial type issues too and I see myself where he is in a few years ---if science doesn't find something a bit faster.

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.

Issie

[khaarina]

I have had minor symptoms for about 5 years (tingling and numbness in hands, muscle twitching, and fatigue) but what convinced me there was really something wrong was a sudden onset of fatigue, shortness of breath, tachycardia, palpitations, tingling in extremities, tremors, dizziness, disorientation, and a sharp pain in my upper left arm. This started on April 22, 2011. I was just diagnosed last month, so it took about 19 months.

[LBUQUOI]

I think I have always had this. I can never remember liking any type of athletics because they make me feel so bad; chest pain, dizziness, headaches, shortness of breath.

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.

[Alice]

I don't have any genetic link with POTS.

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

[Gerrik1]

I started to have symptoms after a D&C in 2003 and I was in m y early 40's. I started passing out, getting dizzy, intertinal problems and high heart rate. Many hospital stays for many days-weeks. Many miss diagnoses for 9 months till I got the POTS diagnosis. I've always had a low B/P my whole life.