Jacqueline Isherwood had been dealing with the symptoms for years.
"I have these like blackouts where everything goes black...and then things turn back with these little specks," Isherwood said.
It was only after one of those blackouts happened while she was driving that she finally got the diagnosis that had alluded her. Thankfully, she, nor anyone else, was hurt in the resulting accident.
Through a friend, she found Dr. Blair Grubb at the University of Toledo Medical Center. He diagnosed her with P.O.T.S., or Postural Orthostatic Tachycardia Syndrome.
The disorder affects each person differently...but the common thread for all of them is a life disrupted.
"It's just so frustrating. And then there's times when you just can't get out of bed...It's just so painful because you're so tired," Isherwood said.
P.O.T.S. can manifest itself in many different ways, but its hallmarks are a rapid drop in blood pressure, followed by a rapid increase in heart rate.
That's a very inefficient loop for the body to endure. And chronic, debilitating fatigue is a common result, according to Dr. Blair Grubb of UTMC's Autonomic Disorders Clinic.
"It is not unusual for us to see children who come in wheelchairs because they are so incapacitated. They are bed-ridden and their lives are stolen from them, " said Dr. Grubb.
Dr. Grubb is a nationally recognized specialist in P.O.T.S., one of only a few in the United States.
A lack of specialists and centers dealing with the disorder means a lot of patients, and only a handful of doctors.
"About 70 percent of the patients we see here at the autonomic clinic are from out of state. We've seen patients from all 50 states including Alaska, California, Hawaii etc. And about 10 foreign countries." Dr. Grubb said.
Common symptoms of the disorder include:
- Unrelenting fatigue lasting for more than six months.
- A rapid heart rate when standing...but it's relieved when they lie down.
- Frequent headaches and difficulty thinking.
- And tiring easily when doing even normal activities.
The lack of outward symptoms can be frustrating.
"They're like 'oh, you look fine'. I get that all the time. Well thanks! I'm glad you think I look fine...it's just I wish I felt fine," Isherwood said.
In most P.O.T.S. victims, the blood vessels in the legs are either too loose, or fail to respond properly when the brain tells them to tense up. Dr. Grubb said the process can starve critical organs from getting the blood they need.
"Because at some point there will be so much blood pooling the lower half of the body that not enough is going to the brain to maintain oxygen delivery to the brain...and those people will lose consciousness," Dr. Grubb said.
Explaining the condition to friends, family and employers can be a difficult task, Isherwood said.
"You just start painting a picture for them. But you feel like you have to do it to every single person, and that just gets so frustrating. So that's why I'm hoping this helps...and gets people educated," Isherwood said.
Dr. Grubb is hopeful that with awareness will come more interest and money directed for research.
"I see the future as one that patients can be more easily and accurately diagnosed, where therapies will be targeted towards the sub-type of POTS the person has...and our greater understanding of the mechanisms will allow us to find the other therapeutic modalities that may be helpful in trying to restore these people to as normal a life as they can have, " Dr. Grubb said.