Hello Amazing Members-
I am back to the board- was on many years ago when I was trying to get initially diagnosed and received so much help and support. Don't know if I could have done it without all of you! I am back with a new problem I am having trouble resolving.
My main issue- severe issues with brain fog especially after eating lunch. I have to be very careful to not eat any carbs during the day. My blood glucose has been a little low but the endocrinologist says not low enough to treat. I think around a 62 in the AM. I think I have postprandial hypoglycemia but not sure because sometimes, even when I eat right I still feel fatigued especially after eating.I went through the 5 hour blood glucose test and the endocrinologist just told me to eat small meals throughout the day. I have been doing that- not helping. If I don't eat, or after eating the wrong thing (carbs) I will also get very tired, feel a cold feeling in my mouth, have bad brain fog, and my vision becomes blurry. If I wait too long between meals I also start to feel fatigued and will start to get nauseous. I eat a bit every 2-3 hours.
Initially my rheumatologist prescribed Wellbutrin and it actually eliminated my focus problems in the afternoon, but eventually that has stopped helping, even with increasing the dose. Which makes me wonder- why did I feel better on that? Now using Methylphenidate - up to 10 mg in the afternoon- and it seems to help sometimes but sometimes not.
I am working with a nutritionist and my rheumatologist. The nutritionist is not sure I really have hypoglycemia because I don't get shakey between meals. My main problem is not being able to focus and even find words after eating. The methylphenidate does help me at least remember words! If I don't eat, I will also get very tired and nauseous, feel a cold feeling in my mouth.
After initially diagnosed I took prednisone and that was wonderful but cannot be on that forever so I am off of it for now. Plaquinil made my blood glucose problem worse so that had to be discontinued. Any suggestions? I don't think my rheumatologist would prescribe the ritubimax.
Thanks in advance. Also, anyone else have kids with POTS?
Welcome back, Rachel. Have you tried an elimination diet for things other than carbs?
Rachel, my first thought was that YOU have POTS. It can cause such symptoms after eating as blood moves away from the brain into the abdomen. It's a commonly-described symptom. Have you had a poor-man's tilt table? You could get your own cuff and try it after a meal. The catecholamine release with POTS has always felt like low blood sugar to me and I believe it can even induce low blood sugar. Anyway, it could be worth checking out.