MY STORY - POTS

     My name is Jamielynn and I've been having symptoms of POTS since I was about 15 years old. I'm 21 now and I was just officially diagnosed in December 2014.

When I was around 15 years old, I started having really bad headaches. They were absolutely horrible and would last for WEEKS without getting better. The same year, I passed out for the first time. Down a flight of steps. Face-first into the wall at the bottom.

I went to see a neurologist and was told that this was "normal" for girls my age and to STOP eating sodium to ease the headaches.

I continued to have headaches daily. The fainting episodes continued, luckily not very often. I learned to live with the headaches and my life wasn't really any different. I could usually feel when I was going to pass out and felt as though I had a good handle on it.

In January of 2014 I was having more problems with the headaches, pain throughout my body, and horrible nausea and occasional chest pain. Doctors said nothing was wrong.

In August 2014, I woke up one morning and felt extremely nauseous and dizzy. My chest was hurting and I felt unsteady whenever I stood. I went to the ER several times and the doctors all told me it was anxiety or there was nothing wrong. My regular doctor tried to push antidepressants and said 99% of my problems would go away if my depression went away (I'm seeing a counselor and doing better. She still believes my POTS diagnosis is wrong).

Finally, one day my mom and I were at the movie theatre watching The Giver (which I had been waiting FOREVER to see) and my neck and shoulders started hurting really bad. I tried to ignore it. Suddenly the chest pain started and I got a numb feeling radiating throughout my entire body. It was scary. I didn't know what was happening to me.

We went to the ER where the doctor told me I was fine. He said it was all in my head and I should just stay in bed until I felt better. We had enough. On August 16th (my 21st birthday...) my mom took me to UH hospital in Cleveland. Neurologists did some tests, I passed out, and they put me in the hospital for three days. The doctor there believed I had POTS. He told me to drink water and Gatorade and increase my salt intake until I saw the neurologist specializing in POTS in December.

The semester went by so slowly. It was torture. I was trying to learn how to work around this illness, keep my grades up, and have a normal life. It was frustrating. And it still is. But I got through it. I had my Tilt Table Test (POTS initiation, basically) and got my official diagnosis. I'm working on managing my illness and attempting to go back to work next week.

This illness has been a crazy experience so far. I never know what to expect with each passing day and I haven't really felt 'good' since my flare in August. But, honestly, it's taught me a lot about myself. I've learned to be more grateful and thankful for what I have. And I've made some AMAZING friends through Facebook support groups and on Twitter.

WHAT IS POTS ??

Pots are something you cook with. They come in handy for cooking pastas and are commonly sold in sets with pans. See below:                                            

 

 

 

No, but seriously; POTS stands for Postural Orthostatic Tachycardia Syndrome and it is a not-so-rare, commonly misdiagnosed invisible illness.

POTS is commonly misdiagnosed because many of its symptoms are very similar to other illnesses such as anxiety, etc. The symptoms commonly include, but are not limited to:

• Dizziness
• Fainting
• Migraine/headaches
• Heat/cold sensitivity
• Chest pain
• Palpitations
• numbness/tingling in arms/legs
• Vision changes
• abdominal pain
• nausea
• brain fog

These symptoms are caused by the dysfunction of the autonomic nervous system (the system that regulates all the things you DON'T control such as heart rate).

When A person with POTS stands, their blood circulation does not correct itself and their blood pressure drops. Their heart rate then increases to make up for this. This causes extreme dizziness and sometimes fainting. POTS patients frequently increase their fluid intake to increase blood volume and also increase their salt intake to help retain water. 

 

Every POTS case and its severity is different. Some sufferers live normal, active lives, while on the other end of the spectrum, some patients may be bedridden or unable to walk for varying lengths of times. Unfortunately there is currently no cure for POTS and many patients try a variety of medications in order to control their symptoms.