Hi everyone. I have only been diagnosed with POTS for a few months. I am currently on some meds that are controlling my bp/hr really well. My head always has this constant pressure which freaks me out. I also get these heat surges that run through my body that remind me of the sensation I have only felt when given morphine in the hospital. I have a baby and hope to live a long time, but it is really hard to learn to deal with this and not be afraid. I don't have a fainting issue which is a blessing, but I think I panic or get anxiety from the sensation in my head. How have you all learned to deal with this illness or others like it? What is your daily life like?

Well it sucks, but i try to look on the bright side of things. I think the hardest part is accepting your limitations, which I don't do very well. For example, this is usually my favorite time of year, it's the annual US Open tennis tournament and i've been a ball girl there for the past 4 years. Realistically I know that I can't stand motionless in the hot sun for hours running around chasing tennis balls all day like i once so easily did. But then the fantasy side kicks in and I think it won't be so hard, I can do it. So I did pick up my uniform and I am still slotted to report to work at noon tomorrow. But I know reality will soon kick in when I have to hang my head and turn over my credentials and uniform and accept that I am in no way physically able to do my job. But see I still have hope that maybe I'll just wake up tomorrow morning and this syndrome will just disappear as quickly as it once appeared. Yeah I definitely have problems balancing my reality vs. the world as i want it to be (my fantasy if you will). But sometimes you just got to wake up and realize there is no fairytale, you can always hope for a happy ending but it doesn't mean it's going to come true. Don't get me wrong i'll be hoping up until the last minute, but when the clock strikes noon I know more than likely that my Cinderella fantasy will be over. But I think what makes us strong is when we pick ourselves up from these disappointments and realize that even though we were handed a sucky situation we are still ALIVE! One thing I've learned from this disorder is that I now appreciate life more than I ever did. I now know what's important and all those little trite things i use to worry about mean nothing to me anymore. I still have the power to LOVE and no disease or disorder can take that away from me.

Love that little baby of yours, and cherish every moment, stay strong and positive for in the grand scheme of things, that's all that really matters.

For me, this really is the BIG question when it comes to POTS.

I don't know how a person learns to live with POTS. While some symptoms stay the same, others keep on morphing regularly. That's the physical side of it.

Then there's the emotional side. (Actually, I can't really separate the two). If someone has learned to live with it, please give me step by step instructions.

Some people on the forum have said that they have found a way to live with it by doing things for others. Whatever they are capable of doing. I do things for others but they don't amount to much.

In this day and age, it would seem that you have to hold down a job and earn a buck to be deemed 'valid' by society. I can ignore society -- but being financially dependent on anyone (in my case it's my husband) sucks. There is absolutely no freedom in being financially dependent on someone else -- in my experience. It takes a special kind of person to look after someone else (other than their children) financially, and I suspect these special people are rare. I know some of the members of this forum have people like that in their lives.

Meanwhile, Perhaps I can take strength from something George Bernard Shaw (Irish playwrite) wrote, "Life is not meant to be easy, my child; but take courage: it can be delightful."

And moments of it CAN be delightful. I guess I have to treasure them and hold them to me when life is not so delightful. And also work on making it more delightful.

Blah, blah, blah.....

Hi.
My name is Rebekah Mitchell, I'm 22 years old. I was just recently diagnosed with POTS syndrome, but I've been sick for about 4 years now. My diagnosis was bitter/sweet. I was so relieved to find out I'm not crazy! Everything I was feeling was real! But I was heart broken when I found out that nothing can be done for me. When it comes to symptoms, I experience nearly all except IBS. I was already doing all I could (exercising regularly, drinking a LOT of water, and eating large amounts of salt.) so I opted not to take any meds. I can't keep a full time job and recently had to drop out of college. I have to live at home because I can't support myself. My parents are the greatest, and they support me in every way they can. My mom had Lupus and now has Fibromyalgia, she is a great encouragement to me. The only thing that keeps my head above water is my exercise. I HAVE to do it or I wont be able to leave my house due to the severe fatigue. I ran my first marathon in April, a miracle I know! Running is my life saver. I started running before I developed POTS and I have no choice but to keep it up. I know its a miserable feeling to struggle to exercise, but if you can start out with light workouts you won't believe the relief! Believe me, there are days when I just cant do it. But on the days I can, you better believe I'm in that gym. It is extremely hard not to get depressed when I see how "normal" all of my friends are. I have to remember that I wasn't put on this earth for my enjoyment. My life is to be lived for the Glory of my God in heaven. And if my POTS somehow can bring him glory, than so be it! My bad days are still bad, and luckily God doesn't throw me in hell for my despairing attitude I still cry about it, I still wish I weren't this way. But at the end of the day, I'm alive and if I can bring glory to the Kingdom of God, I'm happy to do it! So all of this to say, you're not alone! And God knows your pain and suffering, cry out to him honestly and humbly. Don't be afraid to be mad, sad, frustrated, hurt, despairing. He will NOT turn down and honest humble heart.

Im 21 and have had POTs for 2 years. Its completely devastating when you get told that there is nothing that can really be done for you but I am slowly learning to adjust. I have to live at home because I need so much help and I can't work. I find the most painful thing to be watching my friends going out and having fun (or even going to work) while I stay at home trying to cope with pain/nausea/dizziness. etc. I can't exercise even though I am on medication as my HR is still so temperemental and I get exhaused and Im not allowed to drive incase I faint. I feel hugely restricted by what I can't do. Although I do have spells of anxiety/ depression I have managed to help myself by enrolling in an internet degree in english. I can study when I feel up to it and it can all be done at home. I recommend finding something like this just to keep your mind occupied and to stop that feeling of being 'useless'. Now I know that something good will come from this.

Hi guys..I love to read other peoples stories as it makes me feel that little bit better, so here is mine...

I am 24yrs old and was diagnosed with orthostatic intolerance with very stong symptoms of POTS in the last 12 months. I am constantly dizzy and have pre-syncope. My experience was relived but then hopeless as no medication seems to help. I too cannot drive, which creates the biggest dependance on others to get around. I hate relying on others but I supposed there is no choice. Before I was diagnosed I made a deal with myself that no matter what it is I would not let it prevent me from living my life. My fience and I bought a house just before I was diagnosed and have a huge mortgage. I have really stuggled the last 12 months to keep my full time job and to be honest I don't know how much longer I can keep it up but knowing that if I can't I will loose the house is so devistating!!!

Basically I take things day by day. With work for instance I will go and then if I have what my boss calls 'an incident'(condecending tone like when your telling off a child) where I may faint or have a real dizzy spell I just try and get through it. Thank God for my friends at work who don't think I am faking it. I know there is a lot worse out there and I too am thankful for the things that I can do.

Really, quiting my full time job has helped me feel SO much better! It sucks and I feel complete looser, but my health is more important. I work part time and suggest to ANYONE with POTS, realize your limitations and don't push yourself too far! I know a mortgage is a big stressful thing, but you're more important.
P.S. I have syncope too and my Dr. said I can still drive...I HOPE HE IS RIGHT!

Hi Rebekah,

I have not had my licence taken off me or anything but it's 2 things. 1 - is that personally if I can't even walk straight sometimes how can I drive. If I injure someone or myself would it be worth it?? 2 - There is something with insurance that says if a doctor has told you not to drive and you get into an accident then your not fully covered.

Thats a good thing to know about the insurance! My fainting hasn't disrupted my daily life yet. It only happens a few times a year. My dizzy spells are helped by my exercise. But if it gets worse (I pray it doesn't) I'll be sure and ask my Dr. what he thinks. Thanks!

I have the NCS diagnoses and no one has said anything about me not driving, but then again I don't faint and am usually fine when sitting.

On the days I feel really bad, I don't drive - or if I can help it, even leave the house. If I'm walking into a door frames I'm not going to press my luck behind the wheel.

None of this came on suddenly for me. I've watched parts of my life dwindle away since I was 10 years old - migraines, backaches, heat intolerance, GI issues. I'd guess you could say I'm mostly resigned and don't really mind, for the most part, that I have low energy. So I'm not able to go out and take walks/jog - I'm happier curled up in bed with a book.

No doc has ever said to me that I can't drive. They have never mentioned driving. I don't drive because I can't afford to buy a car or run it. I used to love the freedom of driving. My consolation, I guess, is I'm leaving less carbon footprints now. But I hate the time and energy wasted sitting at bus-stops.

Actually, my docs have always encouraged me to keep my life as 'normal' as possible (yeah, doc!).

Feeling a bit weepy today as my sister and niece who live in Italy are leaving to go home today and I'm just about to go down to my parents place to say goodbye to them. I've got a bad migraine this morning but I really need to say goodbye.

I hope some miracle happens and I can fly north for the summer and spend the coming Australian summer in the northern Italian winter. I've 4 sisters but she and I have the most in common. I miss her dreadfully when she's not here and sometimes we go two years without seeing her.

Work and doctors-----when I first started having symptoms, I would pass out on my computer--once a doctor caught me as I went down on it. Then one day I had a realy bad day and went to the fax machine. I must have had a strange look as one of the three girls in the room asked me if I was OK. I said no as I slid down the wall. A doctor walked in, stepped over me, did what he needed to do for him, and then walked over me to get out of the room. I was told go to the emergency room in the hosp, which cost me 400$. What a bummer! My attitute to them was zilch after that. I went to 12 wks short term disability, then long term disibility,(thank goodness I did as they closed it down a few weeks later, and lastly I applied for social security got that too. Thank God, I would have lost my house, my car, and my furtiture,and all of my savings. It was tuff waiting for all of it to start, but it did.
My advice, start the day you get sick. I don't have a safety net, and I would have been in a real mess. Doctors are a lot about money, and employees are just as expendeble as Wal-Mart Greeters. Creeps

The reason I don't drive is that I have no warning prior to an episode. I can feel really well when I leave the house and then have an episode once on the road. When I have a synope episode, I don't typically feel it coming on. Once in awhile I may get a nauseous or strange feeling but usually it just hits with no warning. The other thing that happens (even just as a passenger) is the adrenaline kicks up significantly because of all the stimulation and I get very lightheaded and disoriented. As I mentioned before, once it happened in the car with my kids and my dog that was it for me. I hope someday things will be stable enough to do it again.

Im really impressed that there are others who can work even part time. It gives me hope that at some point I may be able to as well. Im on incapacity benefit in the UK and I feel completely useless!Because I can't drive and can only walk a limited amount (depending on how I feel) I am pretty much confined to the house-especially seeing as everyone else I live with works full time!

any pots centres in the UK???? gwen daughter just diagnosed.