I'd been diagnosed with NCS after the birth of my daughter Samantha in 2005. I'd been exhibiting symptoms for YEARS, but because they came and went, and seemed 'unrealistic' to my childhood pediatrician, it was untreated.
I'd spent a few years taking Toporol and a variety of Beta Blockers, all of which were absolutely awful, and actually caused some pretty severe anxiety issues. One morning I woke up and decided that I wasn't going to allow the headaches and dizzy spells control my life, and I threw my pills away, in Jesus Name!
I'd been symptom free for about 3 years, a few bad days here and there, but nothing like it had been. Then Pastor called for a church-wide Daniel Fast, and I thought it was a perfect time for me to cut my yucky soda habit.
And no, I'm not exaggerating when I say it almost killed me - started having my first 'episode' (considered by my neurologist to be seizures) while driving. Not good, but I was able to pull over before things really got dark.
I didn't really realize what was going on. I did a 48 hour detox water drink (water, cucumbers, lemon and mint), to help cleanse out the chemicals in my body. It was suppose to last a week, but I couldn't handle more than 2 days.
I switched to just water, no juice and NO SODA and still felt really dehydrated, like I was voiding more than I was taking in, when I knew I was drinking at least 70 oz each day. Then other weird symptoms started to develop. My word would slur, or I'd use the wrong word completely. I'd loose focus, and would be extremely exhausted. All this within a 1 week period. I went to my doctor (who was a new doctor, fresh out of med school), who was testing me for diabetes, everything came back normal.
So I went to Facebook to lament. I'm thankful I did, because a few high school classmates of mine had also recently experienced similar symptoms and had been given a diagnosis of POTS. So I looked it up. Sure enough, everything I'd been experiencing was right there. So I printed out the information I found and brought it to my next appointment. She'd heard of POTS, but was told in one lecture that covered it, that she'd likely never see a case.
As it happens, she'd had a patient come in earlier that day who also had already been diagnosed with POTS, and was picking her brain about her condition because her case reminded me a lot like mine. My doctor told me that the brain fog and word jumbles were this other patients biggest hurdle, as she was a university professor.
The more research I did, the more people I spoke with, I realized that this was going to be another fun battle. I needed to maintain my BP or the seizure would start again (Gotta love when the Doctor tells you to add salt and caffeine to your diet) and I needed to keep my stress levels low (Did I mention I have 3 kids?).
We tried some meds but I hated them. The Beta blockers gave me anxieties again, and the BP meds made me exhausted. I phased them out and trusted in Healing, because medications were not the answer. I adjusted my diet, added salt (I honestly don't use salt in my cooking) and enjoyed my tea and soda. I also forced myself to drink more sports drinks (the zero calorie ones, which are gross, in my honest opinion).
Now that I'm pregnant, it's brought on all kinds of new experiences… (See my other blog Sociably Surviving Hyperemesis).
I still have bad days, and I've learned from others with POTS and from experience what triggers can be such as antibiotics and dehydration. I may have to deal with this condition from time to time, but I'm not going to ever let it control me.
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