No fun for having fun

These past 3 days I have been sitting here burning my stomach with a heating pad, keeping me feet up so they do not turn purple, and sitting in a dark room to try to get rid of my migraine. While all this is going on I am studying for finals next week. So happy summer semester is over.

I went to see my POTS doctor, Dr. Coleby last week. He increased my dose on the propananol (heart medication) because my heart rate was continuing to go too high.  He also put me on another medication to help with the dizziness and brain fog. It does wonders! I can actually do my homework without staring off into space and I actually know what I am doing now.  The downside of this medication is it gives me goosebumps all over my body, especially my head; it's like little ants crawling all over me, so uncomfortable! My next appointment is next week, hopefully I will get something to help me sleep, the only thing that helps is benedryl but it makes me feel hungover in the morning! No one wants to feel hungover. 

I had a long weekend at a country music festival for my brother's birthday. I knew it would take me a long time to recover from the weekend, but it was so worth it. I had a blast, sometimes you got to suck it up and have a little fun, however I pay the consequences.

My brother requested to be featured in the blog. So Happy Birthday Big Brother!!

Here's a picture from the weekend!

Neurology and the Nerves!

POTS is a nerve issue, hence the neurology appointment.

I have been very busy the last few days and forgot to tell you all about my neurology appointment last Friday with Dr. Cortez!  Dr. Cortez is a neurologist from the Mayo Clinic who specializes in Dysautonomia.

She gave me a lot of great advise on how to measure out my salt intake. She said put the 10 grams of salt in a baggy in the beginning of the day and sprinkle it on your food throughout the day until it is gone! While doing that, continue to take the Sodium Chloride tablets.  I am drinking at least 4 Liters of fluid a day. You all should try doing that, it is merely impossible!

Anyways, Dr. Cortez is worried about my heart palpitations.  She ordered a 24 hour heart monitor that I have started this afternoon! I am covered in wires while writing this.

She also ordered a 24 hour urine analysis to check for mast cells which is an allergy.  I am also in the middle of doing that.  The heart monitor is one thing but the 24 hour urine collection is miserable. I won't go into details! :)

I go see Dr. Cortez again in 5 weeks to go over the results from the heart monitor and the urine analysis.

The Journey Continues

Working out isn't all that bad when you have a view like this.  Don't get me wrong I still do not like it. But, if it will help me feel better, i'll do it!

Luckily the University of Utah got a new student recreation center this past year with an all new gym. It is spectacular, huge, and gorgeous. Look at this view from where I ride the recumbent bike, can't beat it can you?

Tomorrow is my appointment with Dr. Cortez, the neurologist.  Hopefully she has an answer to my stomach pain.

My heart is having more and more palpitations each day. Last night in the middle of the night my heart rate was in the hundreds. Yikes!

Sleeping is still terrible. Restlessness is the most miserable thing!

Quick update!

I have been working out on the recumbent bike for 3 days straight, let me tell you it is hard work.  I have never been one to go to the gym so this transition is rough! :)

My medications will take a little to get working so I do not have an update on that quite yet.

On a good note though, I finally got an appointment with a neurologist and the University of Utah hospital to see if she has some answers to my stomach pain and what more I can do to help with these POTS symptoms.  This neurologist is named Dr. Cortez, she is from the Mayo Clinic who specializes in dysautonomia so hopefully she is the doctor I have been waiting for!

The weekends are rough because I want to go out and have fun. The next day I pay for having fun by being exhausted and not feeling well. What we like to call a POTS crash. I don't wish it on my worst enemy!

Hope everyone has a great day and a good week!

... And The Treatment Begins

Today, I had my first "POTS" appointment with a local doctor who specializes in POTS. So lucky to find a doctor that I do not have to explain Postural Orthostatic Tachycardia too. Aren't they doctors? Shouldn't they be able to figure it out!?

Anyway, the doctor talked to me about POTS and the treatment for over an hour. Not many doctors take that amount of interest in a any topic.  The doctor put me on a beta blocker, told me to get a Fitbit to monitor my heart rate, do recumbent exercises for 30 minutes a day/ 7 days a week, and drink 4 Liters of electrolyte filled fluids a day.  WOW! That is a lot of information. I am starting all of those things tomorrow and see my doctor in 2 weeks for a follow up!

ANOTHER DIAGNOSIS:

On another note, I was diagnosed with Ehlers-Danlos Syndrome (EDS), which is hyper mobility.  They believe hyper mobility and Mono were the cause of my POTS.  Also, many people who have POTS grow out of it by the age of 21. However, people with EDS and POTS more often do not grow out of it.  With medications, exercise, and treatment I do believe my symptoms will get better. The POTS may not ever go away but they will disappear.

Here's some information on EDS:
http://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/basics/definition/con-20033656

The long road to a diagnosis!

Hey everyone!  My first post is going to be about my experience with getting diagnosed with POTS.
http://www.medicinenet.com/pot_syndrome/article.htm

First of all, when I was 11 years old I was diagnosed with Mononucleosis and took 3 weeks off of school! Luckily it was only 6th grade, nothing to drastic.  That diagnosis changed my life forever.  Ever since I got mono I have been fatigued, tired, exhausted, and suffered from headaches.  9 years later I was diagnosed with POTS.

Let's back up a few years though.  After coming to college in 2013 I started getting excruciating stomach pain with headaches and fatigue. I visited a GI doctor and got a full work up. When I say full I mean it. Everything came back normal (POTS patients know what that's like). I then had a laparoscopic surgery and was diagnosed with endometriosis! I was so happy to have a diagnosis that would cure all my stomach pain in just a short 6 months of hormone therapy.

Unfortunately, that was not the full reason for the pain I was having. I then went to a different GI doctor and got a lovely FULL workup again (colonoscopy, endoscopy, etc...). Everything once again came back normal. The GI doctor referred me to the Mayo Clinic in Arizona. It was so nerve racking to be at such a prestigious medical facility.  Quickly after being at the Mayo Clinic I was no longer nervous. Everyone I encountered there was amazing and nice.  I once again did even more GI work up at the mayo clinic. I won't go into details because they aren't very nice words :)  No diagnoses came out of that week long of testing except Gastroparesis (a symptom of POTS) but I had another appointment down there a month later, an autonomic reflex test.

The autonomic reflex test consisted of a sweat test, breathing tests, and a tilt table test.  Like most POTS patients, I lost consciousness during the tilt table test from my blood pressure dropping too low and my heart rate being too high. That was one of the scariest moments of my life, I have never really passed out from standing before. Dizziness when standing was my middle name but never passing out.  5 days after passing out I was diagnosed with POT syndrome which has been the beginning of a very long road. I was then referred to a neurologist and am waiting for the appointment! Here comes a long road of optimistic treatment....