• BYLSH

Fibromyalgia, Chronic Fatigue Syndrome, POTS and Epilepsy???

I am going to give you an update on what's been going on with my whole POTS (postural orthostatic tachycardia syndrome) thing. A couple weeks ago I did the video with my heart rate monitor. My doctor called me today and told me those tests were normal. Nothing is wrong with my heart. He also did B12 blood tests and that is fine too.



I had an appointment at the Cleveland Clinic today and basically, I was there almost all day. My first appointment was getting a tilt table test to see if I have POTS. There was a lot of breathing into tubes and blood pressure and heart rates and then being on a table. I laid on the table and it went from horizontal to vertical for 10 minutes and then back down. Granted, while I went up in the vertical position I did not pass out, but I started to feel a little bit of lightheaded and dizziness. I started to have a feeling of being exhausted. The nurse technician mechanically laid me back down on the table. Then, that's when I got this feeling of weakness that I usually get around my upper shoulders.


It was weird and kind of cool and exciting all at the same time. I asked for the nurse to take a picture of me said she couldn't do it, but I got a picture of me having the EEG done with the electrodes on my head. It’s pretty sweet if you ask me. Anyway, after that I had an EEG because of my weird passing out episodes. I have been passed out anywhere from three to six hours at a time and I don't really come to very well. It’s like I've been drugged. There are little marks on my forehead where they basically sandpapered my body to put the electrodes on. It didn’t feel so great. The EEG was basically 2 hours and I was actually out (dozing) for around 68 minutes.

I laid on the bed with the electrodes on and I was not allowed to open my eyes. I was more than welcome to fall asleep, which I'm pretty sure I did. I was instructed that if I woke up I couldn’t open my eyes. The technician put this lamp over me that does different strobe lights and different effects while my eyes were closed. There are 6 to 8 different light effects and that's all monitored how my brain works.



My husband and I were just sitting around after we came home and my doctor called me. I was told that the test results wouldn't get back to the doctor for three business days. Well apparently, he got them sooner than that, it was right away. He was able to actually read the test; I guess some doctors aren't able to so. My POTS test was great! I do not have POTS, so that's a blessing in disguise. I have seen a lot of posts where these young girls have POTS and it's just so heart wrenching because these girls are in wheelchairs and they're hooked up to I.V.’s. It's heartbreaking to watch these young people go through that. It is definitely not a life that I want for myself because Lord knows I have enough problems…


The EEG was a little bit of a different story though. My doctor said that I have slowing on the left temporal part of my brain. While he is not an epilepsy doctor, he is referring me to the epilepsy department of the Cleveland Clinic. I have to call them tomorrow and schedule an appointment ASAP.


He thinks that I may have a type of epilepsy and the weird things that I've been going through is me having seizures, which is scary but I also feel like there's a lot of hope there. For one, he said there's medication for it, but if you've gathered anything from me, I'm not a huge fan of taking medication. There are so many side effects. You fix one thing and then you have 20,000 other things break on you and go wrong.



I feel like a lot of these episodes that I have been having are controlled mostly by diet; if I avoid certain foods I don't seem to really have any problems. One of them is definitely coffee. Two, is definitely grains. Another one is definitely citric acid and it's also looking like lectins are out for me also. I’ve been experimenting with eliminating high lectin foods. My husband and I are doing a primarily lectin free diet and I have had more days where my pain levels have been zero than I have had probably in seven years. It’s fantastic!! Anyway, back to this whole potential epilepsy thing. So, that might be what's going on. I was I don't know if you know this, but I've known this for quite a while, the keto diet was originally designed in order to treat patients with epilepsy.


So it completely makes sense why grains and certain other foods cause me to pass out, sometimes, literally for days at a time. There have been times where I have been out of commission (passed out) for 48 hours. The longest that I've ever been “unconscious”, I call comatose is 60 hours. I was out on a Sunday and then I missed three days of work because of it. That is that update. Once I get more information, I will do write up another post. If you have any weird stuff going on, you can compare notes. Don't be afraid to shoot me an e-mail at “butyou looksohealthy@gmail.com”.

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