Post #5 – My Greatest Journey (Chapter 4)

Disclaimer – The following post is not intended to diagnose, treat, or cure any disease or sickness. Please use caution if any parts apply to your specific situation and contact a health care professional for further advice. 

Welcome back to chapter 4 as we will dive back into my POTS saga. Please continue to reach out to me with feedback or questions. Also remember to subscribe and share! Someone you know might find this story useful 😊

Part 1 –

Getting told by a doctor that you need a psychiatric evaluation is a tough pill to swallow. I had a bunch of emotions. Hopeless, Angry, Embarrassed. When a doctor writes that in your official records, it becomes a stamp that stays with you forever. Every doctor you see from then on will read it. Fortunately for me, my primary care provider was on my side and did not let this derail us from finding a true solution.

This next part of the journey is a strange one. As I had mentioned before, I had an addiction to Google. My headaches and heartrate increase lead us to the discovery of Postural Orthostatic Tachycardia Syndrome (POTS) deep into the Google history.  As I know now, it would be easier to name the symptoms POTS doesn’t cause than it would be to list all the ones it does. Unfortunately knowing nothing about this condition, and not in fact being a doctor as Rachel had to continually remind me, I was convinced that there was no way I could have POTS. 90% of the patients with this were females and reading their stories made me think they were faking it (funny how that works).

On roughly the 15th page of Google search results for the symptoms I was experiencing, I stumbled upon an interesting condition that could explain most of my symptoms at the time. A worsening headache while standing, severe facial pressure, increased heart rate, basically everything that POTS causes.  This condition was called a Cerebral Spinal Fluid Leak (CFS Leak). To quickly explain, your brain sits in fluid that also extends down your spinal cord. If that closed system gets punctured somehow, theoretically you could begin to lose fluid and your brain could sink and put pressure everywhere. This could in turn cause headaches, facial pressure, increased heart rate, etc. Most often this can happen to women getting an epidural during childbirth. Most of the time it heals, but can occasional let fluid leak out. About 1 month before I had gotten sick I had slipped on some ice really bad and landed on my back. So of course, as you can imagine based on my mental state at the time, I diagnosed myself with this. OF COURSE I also founds a couple case studies on some random medical websites that documented a few cases of POTS being caused by a CSF Leak and when that was fixed their POTS went away. CSF leaks are also more common in people with fragile skin, which is a common occurrence of people with rheumatoid arthritis which I had in Junior High (see how it all comes into play?). So I headed to my doctor to convince him this is what I had.

This was a “fun” time for Rachel and me. Imagine trying to convince your significant other who is a professional healthcare provider, that you have a CSF Leak. Well that is exactly what happened. Using a couple well worded emails attached with documented case studies, I persuaded everyone around me into believing this is what I had. INCLUDING my doctor. At first he told me no, there was no way. NO WAY IN HELL is what I bet he wanted to say (that is what Rachel and my Mom told me at least haha).  But I got a phone call the next day saying he set me up to see the neurologist and that although it was highly unlikely, it was possible I had a CSF Leak due to the postural nature of my symptoms.

Quick side note, I also started seeing a mental health counselor who specialized in obsessive compulsive disorder, a condition I clearly had when it came to Googling symptoms. I was becoming such a burden on Rachel mentally that she started getting sick and not being able to sleep. Thankfully Rach and my mom have a good relationship, so Rach reached out to her asking for help. My mom literally drove an hour to drag my butt to the therapist and sat there with me during my first session to make sure I didn’t lie and try to make it sound like it wasn’t a big deal. Shout out to my mom. Admitting I needed to go get help was one of the hardest things I had ever done. There is such a stigma about anxiety and depression and it can be super embarrassing to tell people you are seeing a therapist. This ended up being really helpful and gave me an outlet to share all of my irrational fears with so Rachel didn’t have to be my only venting board.

Anyways, I went to the Neurologist shortly after and we ultimately narrowed it down to two possible reasons for my symptoms. 1 – I had POTS and that was causing it all. Or 2 – I did in fact have a CSF Leak. To clarify, at this point we were pretty sure I had POTS but did not have a formal diagnosis.  What we had no clue about was WHY I had POTS. The neurologist essentially gave me two choices. We could either try to treat the symptoms under the assumption we could not figure out why I had them, OR we could assume a CSF Leak was causing my POTS and we needed to fix it. Can you guess which path I decided to take? Surprise Surprise I wanted my CSF Leak fixed. The treatment for this is called a “blood patch”. They take blood out of your arm and then shoot it on top of your spinal column to try and patch the hole that is hypothetically allowing spinal fluid to leak out of. To find the exact location of a potential hole, you get injected with a special fluid and then take a CT scan to see where the leak is. The alternative option is to do a “blind” patch where they just shoot the blood all over *cue scary music*. I chose the blind patch since it was cheaper and less radiation than a CT scan.

The very next day, in a very chaotic string of events, I got a phone call at work saying there was last minute cancelation at the hospital and they could squeeze me in for the patch within the next two hours. I got the ok from my boss, called my mom (Rach was at work), and she drove another hour to take me. To make a very long and sad story short, I followed through with this rabbit trail and had a blood patch to try and fix a CSF Leak that was never actually there, and none of my symptoms were relieved. I laid in bed for the rest of the day while my back healed and contemplated what the heck I just did. I prayed to God for an answer. Optimism about being cured quickly faded to depression and embarrassment at the thought of being sick forever.

 

To be Continued…

 

Part 2 – Carbonation

 

I used to have a problem with pop (or soda as some of you hipsters call it). When I was growing up my parents made a rule that we could only have two cans of pop a week. Mondays and Thursdays were “pop days” for us. My life basically revolved around these days. I can remember counting down the seconds at school waiting to get home to drink my can of pop. As I got older, my obsession for pop grew and I wanted more (I sound like an addict). I remember realizing that my parents didn’t keep track of the pop in our fridge and nobody would notice if I had an extra pop during the week. It didn’t happen frequently, but I would be lying if I said I never had a few extra cans *don’t tell my mom*.

Once my brother and I were able to drive, our parents changed the rule to that we could still only have two pops a week, unless we paid for it ourselves. Two pops a week immediately turned into four or five a week. I had a tradition that I drank a Coca Cola before every high school basketball game (maybe something to do with why I never went pro). I craved the carbonation. I loved the way it burned (crazy I know). When I wasn’t drinking pop, I was drinking the carbonated waters from Safeway. “Clear” was the brand. They still had a ton of chemicals in them, but at least they were sugar free.

As I got to college my infatuation with carbonation didn’t stop. Clears, Coke, Mt. Dew Baha Blast…I always had one of those in my hand. On the weekends my “adult beverages” were also carbonated. Use your imagination.  I could and did drink a lot of regular water, but I always made sure my fridge was stocked full of fizzy drinks.

This story doesn’t really have a happy ending. I still am obsessed with carbonation. However, Rachel has introduced me to the world of carbonated waters that are chemical free. Lacroix, Bubbly, and Simply Balanced are our big three brands we go with. At first I thought they were awful, but over time I have come to crave them just the same. Rachel has to put a limit to two a day I am allowed to have or else I would use up our entire grocery budget on them haha.

Me being me, I do a lot of research on the health effects from drinking that much carbonation. To the best of my knowledge, it is safe. In fact there is evidence to suggest it is good for your stomach and gut motility. But over the span of an entire life, the verdict is still out. I rarely ever drink pop now though so sometimes I guess you just have to pick your poison 😉

I don’t exactly have a good reasoning for why I crave carbonation so much. Is it because my parents would only let me have two pops a week growing up? Probably not. Maybe that was TOO much and it caused my cravings. Maybe I am just a freak. Maybe it has something to do with my OCD. All I know is I love the stuff and the more fizzy a drink is the better. I just had this conversation with a buddy of mine about nitro vs CO2 beers. I am not a fan of the nitro beers and I think it is because the bubbles are smaller and make the beer feel smoother and less “carbonated”. I prefer my beer cold and full of CO2. *Alcohol does make my POTS symptoms worse so I am very careful when and how much I drink*

Disclaimer- I was not paid or given any product/services for free. This review was made purely from my own will.

 

Thanks for reading! Be back next week as the POTS saga continues…..

Please contact me for any specific topics, questions you want answered, or reviews you want!

Jarod Gunning – Dude with POTS.

P.S. Got this bad boy this week. My wedding date!

 

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