When I stand up, I get dizzy, tunnel vision, a little nauseated. I used to be able to exercise and do sports, now I can't even walk up the stairs. What's wrong with me? Is this all in my head? Will it just go away?
What you have is very real. You might have something called "orthostatic intolerance". It's fairly common in young women. It may or may not just go away. Find out more about it and what you can do for it
My heart starts racing after I've been standing up for 5-10 minutes. I get lightheaded, my head hurts, sometimes I get short of breath and my feet turn blue. I am really tired - fatigue I guess. Do I have POTS?
Update on Salt - it can be confusing figuring out how much salt to take and how sodium (Na) information on packages fits into your salt equation. We have updated the Salt section to address this confusion. There have been questions about iodized salt and whether you can get too much iodine. See "Is it Safe?" Learn more.....
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Who Gets OI?
There are a number of conditions that are more likely to create problems when a person stand up (or sits up).
It is more common with
• Adolescent girls after a viral illness, surgery, or trauma
• Hypermobility (double jointed), Ehlers-Danlos Syndrome
• People who have been in the ICU or on bedrest for more than a week
• Traumatic head injury (Concussion)
• Chronic Fatigue Syndrome (CFS)
• Chemotherapy for cancer
• Diabetes, Multiple Sclerosis (MS) and Parkinson's.
Welcome to The Orthostatic Intolerance (OI) Center
Getting dizzy or lightheaded with standing up is more common than most people realize. Most of us have had it happened when we got up too fast, that's normal. When it happens most of the time when you stand up, it starts to interfere with your life. It keeps you from doing the things you want to do, the things you like to do. Sometimes, it's a challenge to get family or friends to understand what it happening and believe you.
Finding a Doctor - Getting a Diagnosis
And, it's not always easy to find physicians who help diagnose the problem and manage it. Fortunately, this is changing but the current doctors with expertise are booked up. The internet has helped in a lot of ways, especially connecting people who have similar symptoms and situations but it can be very time-consuming
Finding Information - Getting Overwhelmed by the Volume
You can search the internet for answers - but there are over 100 websites and 500 possible articles on the subject and conditions. We know, we've been through them. And we keep finding more! There is good information in blog articles by people with POTS and NMH and CFS - but it is a challenge to find answers easily and put it together so you can use the information before you make common mistakes and make things worse!
We've tried to bring it all together and make it easy for you, your family and friends, health professionals and other professionals to find out more about Orthostatic Intolerance and what can be done to manage it better.
Staying on track
There are many challenges just finding a doctor and getting a diagnosis. But that doesn't solve the problem or ensure recover. One of the biggest challenges - after you get a doctor, a diagnosis is the recovery plan. How much detail and support you will need depends on how long you have had OI, how disabled you are with it, how much of your regular life you can still do, what you are doing to manage it etc etc.
It is 'easy' for the primary doctor to get you started with a plan and send you on your way. It is also very easy, as a patient and family, to get lost, to get off track and feel discouraged. Like any thing that takes time to recover, you need support. Checking in with your healing team is really helpful. But they don't always know what to say or understand what you need. It helps to have someone to bounce off problems and ideas; to keep track of how things are going.
Unfortunately, there is really no one in most healthcare systems set up to do this. A life coach would help or a personal trainer - but most are used to pushing people in athletics. Few know how to balance support and the rate of progress you need to succeed.
Wishful Thinking Meets Reality
It would be nice to have a doctor or a healthcare system or a life coach who could do this for us. But, that's wishful thinking or somewhere far off in the future when "medical homes" become a reality. In the meantime, we need to use the resources we have. That is why we created the virtual Orthostatic Intolerance Center. We can use the internet and our connections through it to create the education program and support needed to recover and to educate our healing team.
We consider this a "living" website -it will continue grow. The more questions you ask, the more we will develop
.And we want to take it one step further. After you get the basic information, you need to put it into practice. Some of it is easy and simple, some of it is a challenge. There are ups and downs and lots of frustration.We know - We've lived it ourselves. (To find out more about our mission and our journey with CFS and POTS, check out the About Us section.) We'd like to help put the recommendations into practice - help you find ways to be more active and new skills to "feel, deal and heal." so you can move on!
We hope the information here will help you move into "joyful living today" and everyday.
Mother, Caregiver since 2004
Physician for a lot longer!
Page Last Updated: September 18, 2012