Posted , 4 users are following.
Im so scared! I think i have pots every time i get up my heart races im dizzy and i get light headed sometimes i dont want this to kill me im only 19 
i dont know what to do i keep reading on it and its freaking me out please someone who knows about this POTS should i exercise is this going to pass will i die whats going on ((((((
0 likes, 5 replies
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lady_ami lilly13
Posted
Hello Lilly, your not going to die , both my son whos now 27 and myself 60+ are still alive and we have had it years....basically its a pain in the butt!!!
Have you had a TTT a tilt table yest yet ?
this will confirm if you have it , its not painful as you ate just tipped from laying to upright and back.
we survive doing the following things:
Dont wear tight clothing.
Drink plenty of water, juice or any none alcoholic liquid each and every day.
If you dont want to sit and eat a big meal because you sweat so badly its embarressing ...then tell people and have 5-6 small meals.
if you feel dizzy from getting up ....sit down again.
whenmy son or l have a bad attack the best thing you can do is lay flat on the floor, settee or a bed and rest.
if pains in the legs start and your walking gets bad go to your doctors for help, this pain will not go away on its own.
Heart beating fast ...there is a drug for this called 'midodrine' it comes from Germany and its helped my son stabilise his heart to a certain amount .
Unfortunatley you will have to take it easy , the sun come may until september is a no-no for us as heat make us so ill so we live indorrs for all this time.
l cant think of anything else to post at the minute but if ypu want to ask me anything message me .
mike my son started at 4 years old , l started on my 13th birthday .....what a bummer.
Lady Ami ....take care out there xxxxxx
kim1111 lilly13
Posted
I was diagnosed with an autonomic disorder over 30 years ago before it had a name. I spend all my teenage years blacking out on a weekly basis.
And I still live with it now and I'm 55.
It won't kill you but will make you uncomfortable at times.
Ask to be refuted to the autonomic clinic and they will do the table tilt test.
They tailor the test to you yourself. The first response it right they tilt the table from sitting to lying and as my triggers are good loss and pain they also take blood and put my hand in chemical ice .
This test may make you black out but not always ,I have had the test 3 times and only blacked out once.
.it can be an unpleasant illness in the beginning but you learn to cope.
As my triggers were blood loss and pain they put me on the pill for 3 months no stopwatch controlled the condition for a number of years.
Now at my age I have started to get muscle spasms so i have been put on gabapentin. This is also controlling joint pain to.
Just see the right doctors and they can help you with all the problems that this gives you.
You are on the beginning of this journey and it is normal to think you are going to die, believe me I did in the beginning.
We are all here to help you if we can, just remember you are not alone as I know I felt alone in the beginning and like I was the only one with this.
Kim
lady_ami kim1111
Posted
Hi Kim, you are so lucky ......
l know that sounds strange, l had my first big black out with POTS on my 13th birthday and wasnt diagnosed until l was 46 years old (33 years ) the National Hospital in Queens Sqaure had me in and then in 1969 the TTT wasn't about as far as l was aware and in any case my symptoms are very strange and it isnt what you'd call the easiest thing to diagnose.
Now 61 years old l have had POTS for around 50 years or more and you do learn to live with it ,knowing the signs of an attack coming on helps.
My son was easier l saw signs in him at 4 years old when he started to black out , but once again he wasnt diagnosed until he was 18 years old TTT again so violent his heart almost stopped ( hes had three further cardiac arrests since then ) At 27 years old now its attacked his knees and has braces on both .
But yes, you are right you can manage a life , l had 7 pregnancies ( 3 sets of twins ) but only have three children , l suffered terribly when pregnant and lost babies because l was not properly cared for .
Now with damage to my heart as well, my pots is out of control and l spend hours flat on the bed, its also attacked both my legs with spasms so violent lm rolling around the bed until l get morphine, its attacked my hips to the piont on a number of occasions l have not been able to walk for 48-60 hours and l can get such violent sickness lm crawling on my hands and knees to get help ....but lm alive, lm not disfigure and not dying.
But do you know whats kept me going is the fact that it will never going away , there is no cure and like it or not lm stuck with it .
Yes , drugs help , and l take so many l rattle , but what the heck lifes short and if you dont live it to the best of your ability then its a waste and l dont intend to waste a minute of my life as long as lm upright, not sicking, not in pain , not passing out or having angina .........smile is my motto ( you might look daft) but at least you look happy.
Im having heart surgerys soon as the complications of POTS which as you know leaves you open to illnesses which has damadged my heart along the way .......so soon l will be skipping about the place ( in my dreams )
Ami .....bitting the ankles of the world as she crawls to the bathroom 🤗
kim1111 lady_ami
Posted
Dear lady ami
It's sites like this that help as my doctor won't send me back to the specialist at queens square even though I have asked them to. They just say try this drug. I to take a lot of drugs. The spasm are in my legs too. I think that this illness is the cause of my diabetes, acid reflux and joint pain which my doctor told me was arthritis. Reason why is my sugar levels went down two years ago for no reason. It rock 17 years for me to be disgonised and I only got sent to the right hospital over a a stand in doctor told my mum after an attack "what do you want me to do" so she lost her temper then he told her she has epilepsy and I don't care what the results say.
It's nice to speak to someone else that has this challenging problem to
lady_ami kim1111
Posted
In the past 50 odd years before l had my full diagnosis l have been treated very badly , once having been rushed in to hospital on a 999 because l was vomitting so much my throat was bleeding, l couldn't stand, my heart beat had bottomed out to under 25 bpm and l was going into shock ......l didnt see a consultant , just A & E doctors who put me on drips, drugs, monitors ......NEXT morning l was feeling better and a naval consultant came striding in .....he was so rude to me my .........asking me why l was taking up a bed that someone else could have who was ill.😮😮😮😮😮😮😮
How hubby didnt hit him l will never know, but a lot of loud words were said between hubby and this idiot , plus the ward sister joined in ....on our side , she to was so angry.
So now lm having surgery to fix a hole, narrowing, leaky bits......bit of a crock 🤣🤣🤣🤣
But l still do charity work....l make cakes, cupcakes etc , l have a small one woman ( me) company on face book called Butterfly on a Cupcake based in Plymouth .....ah, water, sand, sun and an old crock !!!!!!