Seeing as September 10-16th is National Invisible chronic illness awareness week, I have decided to do a blog about my condition NCS and the effects it has on my everyday life. It's not a very well known condition and a lot of people think i'm lying when i tell them about it.
When i was younger i would always move about when i would stand up so i wouldn't feel dizzy and faint, so i had always known i was little strange when it came to standing still but i never told anyone because i didn't think it was a big deal or anything. It wasn't until i was 13 (standing in the check out line at the airport) that i properly fainted, i fainted once and my sister helped me back up and fainted a second time. My parents thought it was because all the police at the airport and because it was just 2 days after 9/11 happened, they really thought i was scared. I didn't tell them that i had been feeling dizzy most of that day and that i just couldn't stop myself from fainting in the line.
Anyways time passed and i had a very hard time queuing up in lines and school and doing P.E. That was the hardest thing i did in school. I use to have to sit out a lot and couldn't run around much. But as time went by my dizziness and fainting got worse i still didn't tell anyone because i felt it was just stupid and no one would believe me. But when we first moved to Cornwall i finally told my parents about how over the years i've had these dizzy fainting spells and that is has got worse.
My step dad booked me in for an appointment with the doctor and my doctor referred me to a heart consultant who told me that he would like to try me out on the tilt table test. For all you who don't know what one is i will explain:
A tilt table test is used to evaluate the cause of unexplained fainting (syncope). During a tilt table test, you lie on a table that moves from a horizontal to a vertical position. Your heart rate and blood pressure are monitored throughout the tilt table test.
Your doctor may recommend a tilt table test if you've had repeated, unexplained episodes of fainting. A tilt table test may also be appropriate to investigate the cause of fainting if you've fainted only once, but another episode would put you at high risk of injury due to your work environment, medical history, age or other factors.
Doctors use a tilt table test to help diagnose the cause of fainting. During the test, your blood pressure and heart rate are monitored. You begin by lying flat on a table. Straps are put around your body to hold you in place. Then, the table is tilted to raise your body to a head-up position — simulating a change in position from lying down to standing up. This test allows doctors to evaluate your body's cardiovascular response to the change in position.
here is a video explaining more about the tilt table test:
I was on the tilt table for 15minutes before i fainted and my blood pressure dropped to 90/26. After it i did cry because they basically forced my body to faint. It's a horrible feeling.
They doctor also carried out 2 24hour blood pressure tests on me, but the machines were unable to read my blood pressure most of the time so they were unsuccessful. He decided to book me in for to have a bubble test and a Transesophageal Echocardiogram (TEE) both at the same time.
small plastic tube, called a cannula, is placed into a vein in your arm or the back of your hand. The ultrasonographer will then get a good picture of your heart on the ultrasound machine. Two syringes will be attached to a T-junction in the cannula. One of these syringes will be filled with saline (salt water) and 1ml of your blood. By pushing this mixture between the two syringes several times, the solution is "agitated" and filled with tiny air bubbles. This mixture is then pushed into your arm vein. You will not feel this and it will not affect you. The tiny bubbles will appear on the right side of the heart and be clearly seen on the ultrasound. If any bubbles are seen on the left side, this would indicate a communication between the right and left sides.
A Transesophageal Echocardiogram is a useful tool used to evaluate the function and small detailed structures of the heart and associated vessels. The Transesophageal Echocardiogram is a variation of the Transthoracic Echo procedure. The TEE procedure uses ultrasound waves to produce images of the heart. Performing a TEE involves passing a tube into the esophagus, or swallowing tube.
Everytime i go to the hospital the give the give me an ECG, which i hate! because i have to lay there with no bra on with my boobs out which can be very uncomfortable. But i'm use to them now so it isn't as bad as it was when i first ever had one!
ECG: An electrocardiogram (ECG) records the electrical activity of the heart. The heart produces tiny electrical impulses which spread through the heart muscle to make the heart contract. These impulses can be detected by the ECG machine.
Small metal electrodes are stuck on to your arms, legs and chest. Wires from the electrodes are connected to the ECG machine. The machine detects and amplifies the electrical impulses that occur at each heartbeat and records them on to a paper or computer. A few heartbeats are recorded from different sets of electrodes. The test takes about five minutes to do.
So after all the tests I've undergone (there have been much more tests then the ones i've said) My consultant finally diagnosed me with NCS. I was happy when it was finally given a name but sad because i had it for so long and had no idea. It's weird how being told what is wrong with you can change your life forever.
NCS does prevent me from doing a lot of things as i can't stand up long before fainting, when i go out i have someone with me all the time because i'm so scared of fainting alone. Right now i'm unable to work because my condition hasn't just started effecting me when i stand up it can also happen with i'm sat down or even in the bath. I fainted a little while ago in the bath and it was terrifying. I'm unable to Que up in lines, i cant even cook for myself because i could end up fainting. When i do walk around i get dizzy quickly and have to find a place to try and stop myself from fainting.
Right now i'm waiting for an appointment with my consultant to see what medications i can try and because i'm due for another check up with him. I have other underlining heart problems but i'm not going to go into them as i wanted people to know more about NCS.
It's hard to make people understand what my condition is and a lot of the time they tell me i'm lying which is very hurtful, they don't have to see what i go through every day of my life. They can be very ignorant and narrow minded about what i have. I even have to prove to the medical services that i have something wrong with me (as i'm on benefits and get Disability money) I received a letter from the medical services this morning telling me i have to go in for an appointment to prove that i still have this problem, but they will work out straight away that i do! I would really love to be able to run around and hang out with my friends like a normal person, but i can't change having NCS so i just deal with it. I'm still very happy with my life besides having NCS, i'm even engaged! Lets just hope that when i get married i don't end up fainting, that would be a disaster.
So anyways that is just a little bit about me and my condition.Sorry i never went into too much detail about it, as i'm still learning more about my condition but If you wanna ask anything about it just leave me a comment.