(no subject)
Jun. 19th, 2018 03:28 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
the_rckI still have no idea what's wrong, but we were back in the ER last night. They concluded that the disorientation is probably a medication problem and that I need to see my primary care doctor to get it sorted. Then they gave me a different medication for the abdominal cramping. This one has worked to the point that I can drink water again and have managed some graham crackers and saltines today. Yesterday was was my morning tea (probably a mistake), half a dozen almonds, and some gatorade.
I'm thinking more clearly today. I'm having trouble sitting up for long without getting a headache (I suspect that's partly lack of sleep), but I can put words together. Yesterday, Scott and I had a text exchange that led him to leave work early because he could tell I wasn't processing right. I kept not getting what he was talking about and kept making weird typos. I talked to my doctor's nurse who immediately decided that I needed the psych ER and then got cranky when she talked to Scott and he disagreed.
Scott says now that he's been noticing me being not all here mentally for about a week. I've been noticing it since I started the metformin, but i's been a bouncing thing that's tended to be worse while I'm home alone. I didn't take the metformin last night, and I think I'm going to see how I do if I don't take it tonight. I'll be seeing an endocrinologist at the end of July, and metformin isn't the sort of thing that works less well if one stops for a while and then goes back, not like an MAOI. If a few days off it helps my thinking, then I stay off until at least the point when I see the endocrinologist. If it doesn't, then I assume it's something else.
The thing is that my spot check blood sugar measurements at the ER both times looked like low blood sugar couldn't be the problem. I just know that one swallow of gatorade, yesterday, would, in addition to the abdominal pain, give me about 20 minutes of thinking better. Pain cleared things, too; I was much better for about half an hour after they put the IV port in. I don't have any way to check my blood sugar at home.
We're trying metformin because changing my diet, given the hiatal hernia and the IBS, isn't a practical option. My A1c numbers have been trending upward, but still aren't quite at the 'this will kill me soon' levels. If I could digest more things reliably, I'd be eating a lot of vegetables and avoiding simple carbohydrates and likely have that take care of it. Some of the things my sister suspects might be going on with my digestive system might also explain blood sugar issues.
My sister is convinced I have something called cebo or ceebo which is a bacterial thing in the small intestine that can be treated with antibiotics or with some herbal anti-bacterials (she adds that the research supporting the latter option is sound. I haven't looked, but she's picky about scientific study methodology). It's apparently a simple test to find out but very, very difficult to get prescribed because treating it takes a few months rather than the lifetime of treating IBS symptoms (at least that's her explanation for why she had to see five different gastroenterologists before one would prescribe the test). She also says that treating it means being horribly ill for several weeks. She thinks that oregano making me sick is a sign that dosing myself with that would kill the bacteria because that's one of the two common herbal treatments.
At the moment, i'm largely irritated because this is the fourth thing she wants me chasing, medically speaking. She wants me to find out why nobody's ever done an MRI on my breasts or even told me that I have dense breast tissue (It's in the medicalese reports but hasn't once been mentioned in the reports I receive after appointments. They're legally required to put in a specific statement about dense breast tissue in the letter I get, the one that explains things in lay language). She wants me chasing the h-EDS stuff. She wants me looking into gut motility issues related to EDS as possibly explaining my IBS and blood sugar issues. Gut motility issues can mean that stuff moves erratically from the stomach to the small intestine and that the sugars from foods are released in big lumps regardless of how the eating is spaced. Liquids generally move through rapidly, though.
ETA: I risked some tea, less than usual, and I think it's helping with the can't sit up for long problem. Some of that might be caffeine withdrawal headache related. So far, the tea isn't making anything worse.
I'm thinking more clearly today. I'm having trouble sitting up for long without getting a headache (I suspect that's partly lack of sleep), but I can put words together. Yesterday, Scott and I had a text exchange that led him to leave work early because he could tell I wasn't processing right. I kept not getting what he was talking about and kept making weird typos. I talked to my doctor's nurse who immediately decided that I needed the psych ER and then got cranky when she talked to Scott and he disagreed.
Scott says now that he's been noticing me being not all here mentally for about a week. I've been noticing it since I started the metformin, but i's been a bouncing thing that's tended to be worse while I'm home alone. I didn't take the metformin last night, and I think I'm going to see how I do if I don't take it tonight. I'll be seeing an endocrinologist at the end of July, and metformin isn't the sort of thing that works less well if one stops for a while and then goes back, not like an MAOI. If a few days off it helps my thinking, then I stay off until at least the point when I see the endocrinologist. If it doesn't, then I assume it's something else.
The thing is that my spot check blood sugar measurements at the ER both times looked like low blood sugar couldn't be the problem. I just know that one swallow of gatorade, yesterday, would, in addition to the abdominal pain, give me about 20 minutes of thinking better. Pain cleared things, too; I was much better for about half an hour after they put the IV port in. I don't have any way to check my blood sugar at home.
We're trying metformin because changing my diet, given the hiatal hernia and the IBS, isn't a practical option. My A1c numbers have been trending upward, but still aren't quite at the 'this will kill me soon' levels. If I could digest more things reliably, I'd be eating a lot of vegetables and avoiding simple carbohydrates and likely have that take care of it. Some of the things my sister suspects might be going on with my digestive system might also explain blood sugar issues.
My sister is convinced I have something called cebo or ceebo which is a bacterial thing in the small intestine that can be treated with antibiotics or with some herbal anti-bacterials (she adds that the research supporting the latter option is sound. I haven't looked, but she's picky about scientific study methodology). It's apparently a simple test to find out but very, very difficult to get prescribed because treating it takes a few months rather than the lifetime of treating IBS symptoms (at least that's her explanation for why she had to see five different gastroenterologists before one would prescribe the test). She also says that treating it means being horribly ill for several weeks. She thinks that oregano making me sick is a sign that dosing myself with that would kill the bacteria because that's one of the two common herbal treatments.
At the moment, i'm largely irritated because this is the fourth thing she wants me chasing, medically speaking. She wants me to find out why nobody's ever done an MRI on my breasts or even told me that I have dense breast tissue (It's in the medicalese reports but hasn't once been mentioned in the reports I receive after appointments. They're legally required to put in a specific statement about dense breast tissue in the letter I get, the one that explains things in lay language). She wants me chasing the h-EDS stuff. She wants me looking into gut motility issues related to EDS as possibly explaining my IBS and blood sugar issues. Gut motility issues can mean that stuff moves erratically from the stomach to the small intestine and that the sugars from foods are released in big lumps regardless of how the eating is spaced. Liquids generally move through rapidly, though.
ETA: I risked some tea, less than usual, and I think it's helping with the can't sit up for long problem. Some of that might be caffeine withdrawal headache related. So far, the tea isn't making anything worse.
no subject
Date: 2018-06-19 09:02 pm (UTC)The bacterial overgrowth thing is called SIBO - an acronym for Small Intestinal Bacterial Overgrowth. I haven't done a lot of reading about it, but my understanding is that it is very common but that it is a new enough diagnosis that a lot of doctors haven't heard of it yet.
no subject
Date: 2018-06-19 09:13 pm (UTC)I'm not discarding the idea entirely, but issues with gut motility sound more like what I've actually experienced. Of course, gut motility issues aren't nearly so easily tested for or treated. If I can still taste a sauceless and unseasoned pizza ten hours later when I lie down, that seems more like a motility issue. It would also explain some of my decades long issues with what I eat when in terms of feeling exhausted when I shouldn't and then better for an unexpectedly long duration with certain foods.
no subject
Date: 2018-06-19 09:18 pm (UTC)no subject
Date: 2018-06-19 11:41 pm (UTC)