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Alone

I am a 34 year old mother of 4, and was diognosed wih POTS last year ,although I have suffered with it for the last 10 years, I have lost friends and distanted those close to me, Although my closest family and the few friends I have left say they understand, I have seen first hand how, unless you are within this living nightmare you can never truley comprehend how,hmmm let me try and find the right word here,,,,,awfull, draining dibilatating, life destroying and lonley this disease actually is.
When I was diognosed last year in London my neurologist said too quote "remember this at least you are not alone now" yet here I sit a year later just as alone as I was then...no pysical or mental support just alone stuck inside a crappy vessel that wont work properly oh and lets not forget the memories of how free and alive I felt before POTS.......
So some support from anyone else suffering would be a blessing because right now I am alone:(
tachygirl34 tachygirl34 31-35, F 12 Responses Jan 24, 2013

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Does anyone else have inappropriate sinus tachycardia and fibromyalgia as well as pots. I had fibro years before pots. But I remember I stood up as a child maybe 12 and saw black didn't pass out but could not see anything for a min or so. So I have had something a long time. Just wondering.

I was diagnosed a year ago but felt like this after the birth of my son 4 years prior. I am with you it's a bad feeling and I hate it. I think back of all the things I use to do and took for granted that I can't do now. Like going on the beach when it's hot or even sitting at my sons tball game makes my heart race. I wish someone could find a cure for this. But I do know the two years after my sons birth I exercised and I felt great but when I stopped I started to feel bad again even worse. So my thinking is if I can somehow muster up the strength to workout again I hope it will help me be somewhat normal. But staring working out is hard. I do really good till day three then I'm exhausted heart palpitations and dizziness. It's frustrating but I will do it. We have to tell ourselves we will get better.

Keep it up, and don't give up exercising! I was diagnosed recently too. Working out was very hard at first. I could only cycle for a couple minutes. I hope you have a reclining bike, as that is easiest. I've been exercising most days for almost a month now, and I can't tell you how much better I am now! Careful not to over-do it. Check out the pod-cast from Mayo clinic. It has some very useful information regarding starting an exercise program for POTS.

Hey I'm 15, I've been in hospital with pots and autonomic failure for 4 months.. I know what you mean, the anxiety that comes with it is horrible, you never know when you're going to fall flat on your face.. Go and see a psychologist I do! It helps loads!!:) drink as much water as u can 3 litres minimum and increase your salt intake, also make sure your getting enough physical activity in to keep your heart pumping properly. You should go and see a specialist on autonomic failure, it effects my respiratory system and you could have it too (mind you with mine I just stop breathing) anyway, take care, be strong and don't let this beat you before you beat it! You can live a normal and full life! Also ask your doctor to put you on fludrocortisone and midodrine, they help a lot! Xxxxx

Oh, btw....I am having severe episodes at night where I wake up gasping for breath, this has been going on for about a year now, and can happen up to 20 times a night (anyone else get this?) I know we are all dealing with our own personal symptoms but at the moment this is the worst for me and my doctor today just kinda shrugged his shoulders in response, gahhhhh is there no escape:(

I have those occasionally. Sometimes when I wake up, I'm dizzy and seeing stars on the verge of passing out. I'm sorry you have so many problems with that. I've read that sleeping on a 30 degree incline may help. Have you tried doing something like that? Changing where you sleep or what position?

Thanks for your replys:)
I know there are others who are suffering, and although I would not wish this on my worst enemy it is comforting to read your stories and to know you can relate to how I feel.
Gracie your discription of your syptoms is almost identical to mine, and yes I too fell like I am living in a OAP body, (no offence too old people) in face there are probably lots of old people in better condition than us:P
I have an understanding partner, but although he can sympathise he can never truley empathise and I think that is probably where we all can.
I dont just want to rant and then not speak to anyone on here again so if any of you feel like really venting or just a chat PM me plz, I am a good listner and maybe we could help eachother...again thx for sharing your thoughts and experiences....
Tachygirl.....x
aka, walking dead;)

I'm also a mommy (a crappy one at the moment due to the fact most days I can't even get out of bed). Thankfully I have a husband who as taken on everything since I was diagnosed. I feel like a complete failure as a wife and mother and I am so lonely. No one an really understand what you feel unless they go through it. I'm 33 and pretty sure I know exactly when POTS developed. My twins were born at 30 weeks premature and had an emergency csection due to hemmoraging. I can't be much but I can be here for you. I understand.

I'm in the complimentary boat. I feel like a failure as a husband to my wife. We are fortunate that she has a job. I've been out of one since before I got my diagnosis. I can barely help out around the house, although I fall over a lot trying to. I can deeply relate to how you feel as a failure, although I understand it's different for men and women in our culture.

I have a 9 month old daughter a six year old son and a husband that threatens divorce due to my extreme exhaustion as I'm the housewife and only caretaker I out two children. When I try and exercise I feel like my heart is about to explode my head feels as if it cracks open and bleeds, I feel hot and see nothing but black and silver swirling floaters as I almost pass out. Not to mention every other day I go through my life with tachycardic rates sometimes hitting highs of 220 and still having to change a diaper of a 25lb baby exhausts me to the ends of the earth. I married, but I feel more alone and surrounded by people that look at me like I'm either making it up or they don't understand so they are irritated to be around me. Before the baby I admit I was very self confident and after having her and this issue my whole body feels like that of an 80 year old woman.
I feel like I'm just waiting to die.
I have explosive fits of anger when I have had too much and am exhausted to the point of passing out and once I explode I feel very sorry after bc usually I have broken something or I have said horrible mean things to my husband or I just tell at the top of my lungs. I'm tired of the meds, I'm tired of my body, I'm tired of my heart beating so hard and long day in and day out that I sometimes pray not to wake up and have to do it all again. But then I think about my kids and obviously I don't want to die and I wouldn't kill myself bc I don't believe in suicide and that doesn't solve anything. But I just wish there was a way to make my husband understand, I have a feeling no matter what I do though, he's gonna leave me. Been married almost 8 years. If things keep heading this way we won't make it to 10.
I have hypertension too, blinding migrianes that last in both eyes for soemtimes 48hrs blind!!! memory issues, sometimea speech difficulties, and chest tightening and chest pain with the speeding heart rate! never had that before. But I understand you on the exhaustion and fatigue dot even describe it: we need a new word: I guess walking dead is the best way for me to say it.
I hope you don't go crazy, I feel like Im getting there. I can't stand when people say stay strong: I just want to say go F*** yourself. Strong doesn't work in my vocab anymore bc my body is weak all te time!
But yea alone I am and don't think things are going to change.

Trust me you are not alone you should sit down with your husband and talk about your condition so he better understands n can get an idea of this disease. Have him read some of our stories since most of them are so similar if he's willing to learn about it he can help you n support you just a thought if you've already tried just keep trying and even tho it seems impossible we have to control this disease we cannot let it control us I know way easier said than done but the mind is a powerful thing again I'm sure you know all of this n I'm not trying to insult your intelligence I just wanted to speak n let you know you're not alone don't give up

As a POTS patient, I can relate to how stressful it can be. Let us not forget that your husband has feelings too. There is no miracle method for relationships, but I just wanted to point out that not only do you have a need to be understood by him; he probably has a need to be understood by you. I hope this helps you. Your body might not be strong, but I hope you can find strength to be strong emotionally.

It is very hard to deal and live with if affects literally everything in your life especially when we are having bad days. I believe in my opinion that being as positive as possible and keep stress free smile laugh get your mind off this burden we suffer from. It works... Workout, take it slow, practice getting up drink lots n ltd of water I'm sure you know all these things but in case you or anybody else who reads this doesn't those are a lot of the simple things that can take a bad day to a good day. Idk about anybody else's doctor but mine says it will go away or diminish as we age n the body slows. Stress and depression can worsen our symptoms we have to have it in our heads that WE HAVE POTS, POTS DOES NOT HAVE US. Easier said than done but just know most definitely you are far from alone and we are here for you

38 YO Mom of 2 in the US. Even though my kids are here, I too am alone. My husband doesn't understand. He works 2 jobs and complains when I ask for anything. I feel he always thinks of himself first and makes sure his social life doesnt suffer one bit. A year and a half ago I worked 60 hours a week, did home improvements and went to school functions. Now, some days I struggle to bathe or fix dinner. I read a good story called the spoon theory (about a woman with Lupus). You should read it. I don't know what to say about the loneliness, I feel it too. I do know I feel better when I read a good book or watch a good movie where I can temporarily escape reality. I know that's not a good answer but I try to tell myself that noone knows me better than me and I just try to be my own best friend. Talking to people online helps too because at least there is some sort of social interaction that is lacking with so many people that have chronic illnesses and are isolated from the rest of the world.

I totally understand where your at! I feel your pain I have been suffering with this lousy pots illness too for the past 4years now.. All we can do is take it one day at a time and hope a cure is found.... Hope it gets better for you...

I was just diagnosed with POTS when I failed the dreadful tilt table test. The cardiologist put my on florinef. Have you taken this? And did it help? It seems to help a little.

<p>Lol escapism is not a problem Frank as I am a fantasy artists and a very creative person:)<br />
Besides if it all gets too much I shall just revisit middle earth again!!!! god bless Tolkein and S King:)<br />
Thx for the comment:)</p>

I understand there's something wrong with me too, although I don't feel like sharing about it. All I can tell you is there is no shame in being alone you can still do great thing with your mind. Create something amazing, write a novel, invent something amazing, the possibilities are endless.
And when you finally do make it big, and you're rich or famous, or both, don't let the people who abandoned you back into your life. Vindication is certainly something to live for.