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An illness that leaves you and your family totally devastated.
Postural Orthostatic Tachycardia Syndrome (POTS)
Member Name: Ladymagic
Postural Orthostatic Tachycardia Syndrome (POTS)
Date: 08/12/08, updated on 11/11/10 (1444 review reads)
Advantages: New web sites for POTS , more doctors aware of the condition now.
Disadvantages: No cure, no help,you can pass it on to your kids.
I have POTS.........no .............not stainless steel or Pyrex.
My POTS is a rare degenerative condition which is painful and totally unwanted by myself and now my son who's just been diagnosed at just 18 years of age, and I feel so guilty because mum here gave it to him .
It started in me when I was sweet 13 years old and had chest pain like nothing I've ever felt before, my mum in all her wisdom ( cough , cough) said it was wind and made me down a bottle of milk of magnesia , 5 days later and I was still in pain , grey sweating and looking life death , collapsing on the stairs I was rushed into hospital and taken in to a ladies gyne ward, where they discovered I was virginal intacto and so sent me home .
From the age of 13 years until I was 49 years old I was treated like a lunatic , someone who wanted to be 'in the limelight all the time' a hypercondreact and why ?
Well you name it and I've had it:
Pneumonia and pleurisy twice, a shadow on the lung , a collapsed lung , appendicitis, gallstones with pre-cancer , tonsils, adenoids, hysterectomy. Glandular fever, ME Septicemia, pulmonary oedema, heart failure, kidney failure, 13 tumours in my body, bronchitis, .....need I go on ?
For POTS you see lets in anything and everything , the illnesses I catch can be cured and treated as they happen and you get over them , broken bones mend but are not so good as this part of your body is then weakened by pots and you end up with wrists that are swollen all the time, ankles give way and you get pain, pain and a bit more pain.
At this time I have around 25-30 underlying conditions to deal with, these come and go as the day or season take them , in winter I get more chest problems and pain with my joints ( oh , my hips pain is chronic ) in the summer my sweats are so bad I am a prisoner in my own home and cannot even go to the shops because I am drenched , imagine having the change of life at its worst for years and years with no end in sight !
Some of the daily things I have to deal with are as follows:
Angina, a hole in my heart , mitral and aortic valve leaks, bradycardia ( slow heart rate) glaucoma, I'm going deaf ( sorry can you say that again) I have contractions of the throat that leave me chocking on food or drink and make me sound like a cross between a transvestite ( sorry if you happen to be one I'm not taking the mic) and a schoolboy who's voice is about to brake !
We do pass out rather a lot , a loud noise just makes you jump , but a loud noise makes us fall down ........oooooooops ! so a car back firing has some strange consequences for me , a dog barking or very loud music can set me off, people do look at me strangely , but then if I do fall down it probably because I look like I'm having a coronary !!!!!!!!!!
At night when I go to sleep my heart slows down and I can go into heart failure, one day my husband says he will come to wake me up and I'm gone , still I'd rather go in my sleep than under a bus !
We have almost no digestive system , what goes in stays in ..........I've been known to hold food in me for over 30 days and have to take enough medicine to move the bowels of the earth let alone a 5foot 2 inch granny , its just not fun eating most of the time , contractions............OMG if anyone came to my home on bad day you'd think I was giving birth because of the sweats , contractions of the bowels and the blue face ..........no food is not a nice thing to enjoy for me anymore, shame that as I love fudge, ice-cream and salads!
POTS sufferers get so much pain in the legs.......OMG its like someone is trying to pull the veins out of your legs each night and I've been know to roll around the bed in utter pain crying .
Then there's the sweats , I have no control over my body temperature , so I can sweat like a boxer 24/7 and have to take drugs to help control this ( ha...ha ....thats a laugh) I also have Raynard's which mean I dont have proper blood supply to my hands , feet and of all places the end of my nose ( has she been at the gin again ?) so I look like I've been boozing all the time.
When I was 18 years old I was seen by Sir Roger Bannister in the national hospital in queens square in London who did some test on me and said ' Girl , I know you've got something major wrong , but at this time I just cannot tell you what it is at this time '
I was in a wheelchair at the time and I stayed in this chair for 2 years until I told myself 'enough is enough , get up and walk ' it was painful and I fell down many times but in the end I did walk and have been walking since , some of my friends with POTS are in wheelchairs and I expect i will eventually end up back in one , but until that day I'll continue to bite the ankles of everyone who holds me back from walking !
I was eventually diagnosed in 2001 , some 33 years of having lived with this awful condition that I had POTS and that thank goodness I would never pass this on to my children ..........they Lied.
I was then told that I may possibly pass it on to my daughters......Lied again
And then I was told I may pass it on to all of my children ........they knew all along I could pass it on and I did .
My wonderful son Mike has been having symptoms since me was just 3 years old and last month he had the test , it so positive that it scared the consultant who did it as Mikes heart stopped on the table.
My son is devastated as he will never live the sort of normal life a 18 year old wants to have , we cannot drink as it effects our emotions to the point that after just 2 shorts we both become manic depressants who cry over anything and don't know what they are doing ........not a nice site to sit and watch I can assure you !
But believe it or not lifes OK , I take on average 30 different kinds if drugs each day including :
Morphine, pethidine, frusamide, clonidine, and tons and tons more.
I have high ( over the moon as we make it in our own bodies) cholesterol which means I have to live on another drug for the rest of my life, drugs are a part of my everyday life, I walk with a stick , I have wrist braces and at time have to use a heart monitor..............but really my life good.
If you think I'm talking about my condition in a rather strange manner then think of this , how do you live each day not knowing if your going to wake up, how do you live each day not knowing if your going to be able to manage the pain , the sweats the lack of sleep and the sheer OTT tiredness that washes over you sometimes at the most awkward times............I have to be flippant in order to survive, its my way of coping .
UPDATE: 11TH NOVEMBER 2010.
My son Mike had to leave college in the latter half of his 3rd year and all hopes of being a forensic scientist have gone. He's now driving having passed his test and is the owner of a nice new 2010 yellow mini ( his pride & joy) His POTS is still unstable and the chronic tiredness is causing him big problems.
I've been off the site owing to some very bad health issues, kidneys bleeding , walking and balance bad, chronic pain issues and as I sit here I have 3 rubber bands inside of me cutting off the blood to 3 nasty internal piles , these where put on just 10 hours ago ( no, don't laugh or you will set me off) OMG the doctor could have warned me about the pain when she did it , ouch....ouch....ouch.
Anyhow I'm back next week for a full 'lets have a top to bottom look and a poke where the sun doesn't shine'
as I have a lump inside of me that you can sort of see just above my waist which is causing me such pain ( 9 out of 10) I almost pass out when it starts up .
I'm now taking in tablet form those 'good bowel bugs' and freeze dried 'ACAI' tablets and have just started a course of colon cleaning tablets (OMG what am I letting myself in for ) so if you don't hear from me again soon you will know I've disappeared down the loo after I turned myself inside out and sliding off the loo seat ....probably being watched by my cat who enjoys a good laugh whilst sitting in the handbasin whenever I go to the loo !!!
As I've said before you have to laugh at life each day or end up with a tissue permanently stuck to your eyes and nose...not a nice sight .
Keep a smile on your face and remember 'there's always someone worse than you out there'.
If you think you may have POTS speak to your GP and ask them if its worth doing a TTT .......or check out ' POTS PLACE 'on the net for more details, you'll find me on there .
Lady Magic and Harley the cat.
Summary: An illness that effects your life and the way you live in every way .
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