POTS symptoms in child hood

[Pistol]

Hi - my family tree is contaminated with POTS ( mother, 2 sisters, 2 nieces and myself have it ). I id not become severely symptomatic until I was 42 but in retrospect I had many POTS symptoms since childhood. I was wondering if any of you had symptoms when you were young? My symptoms were: syncope ( was blamed on teenagerism !!! ), dizziness, low BP, tachycardia, difficulty concentrating, very hyper and annoyingly energetic ( ADHD ?), GI issues , craving salt ( as child I drank soy sauce from the bottle … ), Vit B12 deficiency ( need shots since age 16 ), anemia, Raynaud's syndrome of feet … I think that's all. These symptoms all sound very much like dysautonomia but I coped with them all of my life until - as I said - I was 42. My sisters and nieces all had similar symptoms and now  have POTS . … Has any of you had symptoms growing up?

[zerohours000]

11 minutes ago, Pistol said:

Hi - my family tree is contaminated with POTS ( mother, 2 sisters, 2 nieces and myself have it ). I id not become severely symptomatic until I was 42 but in retrospect I had many POTS symptoms since childhood. I was wondering if any of you had symptoms when you were young? My symptoms were: syncope ( was blamed on teenagerism !!! ), dizziness, low BP, tachycardia, difficulty concentrating, very hyper and annoyingly energetic ( ADHD ?), GI issues , craving salt ( as child I drank soy sauce from the bottle … ), Vit B12 deficiency ( need shots since age 16 ), anemia, Raynaud's syndrome of feet … I think that's all. These symptoms all sound very much like dysautonomia but I coped with them all of my life until - as I said - I was 42. My sisters and nieces all had similar symptoms and now  have POTS . … Has any of you had symptoms growing up?

I don’t have POTS or other postural or heart issues, but I never had one symptom of anything before 4 months ago.  Which is why this has been so hard: a total 360 in life and outlook.  I was by no mean happy go lucky, but never had health issues on this magnitude before.  Now I spend me days isolated and searching for answers I know will just make me feel worse — because there ultimately no cure or full recovery; just stuff of a chronic nature.  Very daunting.  Sorry your family is going through all that.  Must be difficult.  In my family it’s really just been me to get the worst luck—all through my life.  It seemed to fall on me.  

[zerohours000]

I’d like to know how you deal with it all, especially knowing you’ll never be well again?  I was never even that much of a social person but I did occasionally do things, go places, look forward to things.  Now each day seems like a long prison sentence.  And life seems very dull and without much joy.  Sorry to complain, or bring the mood down, or make it about me, but I’m only 4 months into this and I’m sick and tired of it and just want it to go away...

[StayAtHomeMom]

After my diagnosis I looked back and I think about the little things. I remember being lightheaded when I would stand up (doc said dehydration), loving salt on everything (my mom said I oversalted everything I cook), high heart rate (98 sitting was normal, blamed on smoking), 12 hours of sleep has been the norm for me since I was a teenager (am 32 now), exercise was very exhausting, panic attacks/ anxiety started at 17. You know just the little things. 

My children are growing up and my 15 year old is showing symptoms. And it started with little things. He would complain of itchy legs when doing dishes, chronic headaches, dizziness on standing. He is tall for his age (5'10") and I am hoping it is just the growth spurts. Every six months he grow a few inches, then stops for six months. I hope he grows out of it. He manages without meds at this point because the pediatric cardiologist said dehydration. I may have to get his diagnosis soon because his symptoms are starting to interfere with his life. 

My family has no history of POTS. Autoimmune and cancer runs high but not POTS or symptoms similar. 

[StayAtHomeMom]

1 hour ago, zerohours000 said:

I’d like to know how you deal with it all, especially knowing you’ll never be well again?  I was never even that much of a social person but I did occasionally do things, go places, look forward to things.  Now each day seems like a long prison sentence.  And life seems very dull and without much joy.  Sorry to complain, or bring the mood down, or make it about me, but I’m only 4 months into this and I’m sick and tired of it and just want it to go away...

Symptoms vary in intensity by person and even by month. Meds help the roller coaster ride. 3 years ago when I started I couldn't drive I was so dizzy. Now I function OK as long as I don't overdo it and I am aware I have limitations. I work full time and raise a family. My house is usually a mess because I don't have the energy to clean but it does get better. 

[Pistol]

@zerohours000 - did you not mention in one of your posts that you tested negative for dysautonomia? Why do you think you will be sick for the rest of your life? Many people have dysautonomia and lead a normal and productive life, as long as they take precautions. And if you have not been diagnosed with anything then you very well may get perfectly well - whether with or without treatment?

[zerohours000]

2 minutes ago, Pistol said:

@zerohours000 - did you not mention in one of your posts that you tested negative for dysautonomia? Why do you think you will be sick for the rest of your life? Many people have dysautonomia and lead a normal and productive life, as long as they take precautions. And if you have not been diagnosed with anything then you very well may get perfectly well - whether with or without treatment?

@pistol I'm not sure how one tests negative for dysautonomia.  As there's no genetic markers for it.  What I posted was that my neurologist did a TTT and said I didn't have it.  I think I'll be sick for the rest of my life because my symptoms get worse by the day and week.  Whether it's the new burning sensations I have in my hands or feet to the ringing in my ears.  I'm just really unhopeful because I feel so poorly and I've lost all joy in my life.  The lack of restorative sleep has also ravaged me over the past 4 months.  Without sleep, we can't recover from anything, regardless of whether this is dysautonomia or not.  And of course the uncertainty of this all (I know there are no certainties in life, but at least health is a false sense of certainty for many) has really messed me up mentally, as I've lost that one constant.  I mean, I was vegetarian, in pretty good shape, and able to do a lot.  Now I barely function.  I"m not bedridden --- though I sometimes don't want to leave bed --- but this thing is whipping my butt.  

[Guest ANCY]

I can look back on my childhood and see evidence of dysautonomia. Probably the biggest thing is that I can remeber from around age 4 I thought it was normal to black out when you stood up after touching your toes. I thought it was normal so never said anything. There are times that looking back I was very close to loosing consciousness but never did fully. I always liked things tight, like a compression garment, and constantly was sitting on my legs, still do as a way of helping my bp.  I also consumed tons of salt on my food and drank 2-3 times as much water as my brother and sister. I had stomach troubles as well but mostly chalk those up to the very frequent antibiotics to treat recurrent ear infections. 

[RecipeForDisaster]

Yep, me too, even as a teen i never could develop any stamina, thought passing out was normal, ate salt by itself.... have always crossed legs or sat on them and stuff, never was comfortable sitting like a regular person. 

[Pistol]

Yes - that's another thing I always did too - crossing my legs, not only at the knees but in addition also at the ankles. 

[Potsie1990]

My childhood episodes consisted of of shaking, nausea, urgent bowel movements (during episode) feeling faint, trouble breathing, blacking our and dizziness upon standing, passed out completely once (lol they were like, she just dropped and fell asleep... she must be tired! They never took me to a doctor. Thank god I didn’t actually die) vasovagal response, cold clammy hands, a need to lie down. 

 

They just said I was a nervous kid. Lol I kept telling EVERYONE something wasn’t right. 

Finally when I was in my teens, it got so bad I once mentioned I wanted to die. Not like I was going to kill myself, but because I was ridiculed my whole life and I was constantly pushing myself to be normal and I couldn’t do it anymore.

As a result of that delightful comment I made that one time, my parents admitted me to a inpatient psychiatric facility where I spent 2 weeks being forcibly doped up and observed. So imagine having undiagnosed dysautonomia and being forced to take a cocktail of drugs that made it 10x worse. Also, they said My dysautonomic episodes were a result of bipolar disorder, panic disorder, schizophrenia, adhd and anxiety. Lol mind you, I was an only child of a mother and father who were at the time... a little incompetent... but that’s another story. I am still convinced they just wanted to get rid of me. 

 

when I was 17 I moved out and haven’t taken a psychiatric drug since. 

 

Then I eventually assumed everyone lives this way and I must be a weakling, or as my family put it, loved to complain for attention. Didn’t pursue treatment for 10 years until I landed in the hospital for extreme chest pain, and later that year I was finally diagnosed. 

 

long story short, I am a normal 27 year old married woman who lives a wonderful life and who had a successful career (I am a domestic goddess now aka stay at home housewife) and currently does not have any mental disorders. Not to say they are in any way wrong, but for me, was just misdiagnosed and mistreated. 

[WinterSown]

On 7/2/2018 at 8:06 AM, zerohours000 said:

I’d like to know how you deal with it all, especially knowing you’ll never be well again?  I was never even that much of a social person but I did occasionally do things, go places, look forward to things.  Now each day seems like a long prison sentence.  And life seems very dull and without much joy.  Sorry to complain, or bring the mood down, or make it about me, but I’m only 4 months into this and I’m sick and tired of it and just want it to go away...

You don't know from the beginning how to deal with it, no patient does. It's a learning thing. You learn how to react to your symptoms, you slowly learn how to modify your life so you can get back to living your life. Today, I went to a state park with my husband for a walk. We took the longer 1.5 mile trail today and I was great until the last 1/8 of it; I lost most of the feeling in my arms and legs except for pins and needles, had a drop attack too, but I kept walking, I was able to stand--I powered through it instead of collapsing or even just sitting down on the path. A year ago I would never even attempted such a walk but I've been exercising and eating healthy, taking my meds and getting enough electrolytes. You will get better but it does require willingness for the effort. Getting bogged down by thinking you won't get better is not going to help. You can work towards remission and getting your symptoms under control which so very many of us do, it will happen but realistically, it doesn't happen overnight. Start with baby steps. Getting out of bed, getting showered and dressed, eating, drinking fluids, remembering to take your meds on time, gentle exercise weeks before moderate exercise, months before anything more strenuous--slowly building strength and endurance. You can do this. 

WS