Monday, November 21, 2016

AFE update: losing hair, new medication, and migraines.

Last week I had another full week of appointments and this week I only have one, with my counselor. Fortunately I was able to get on the cancellation list so when someone cancelled, I jumped on the appointment, otherwise my next one isn't until mid-December.

I've been talking to a few other AFE survivors online about their symptoms and diagnoses post AFE and it's kind of a downer, really. Almost everyone I have talked to are about six months or longer since their AFE, so not quite where I'm at, but they all are frustrated with doctors who don't know what to do with them. I do know that it's so rare that it's hard to study, so it makes sense that there isn't a whole lot on the books on what to do with us. I'm learning that a lot of what I deal with isn't going to be fixed by time or medicine, that I most likely learn to live with it because there just isn't anything out there.

Hands down the worst are the migraines, with a close second being the feeling of getting the flu all of the time. I'm always achy and tired. But the migraines.. oh man. At best, I get migraines 4 or 5 days of the week. At worst, I'll have one every day. My medicine I can take to keep the edge off works maybe half of the time now. So far the consensus is that it's either hormonal, because of low sodium in me, or a combination of both, courtesy of my broken pituitary. I had some labs last week to measure my hormones and those came back normal, so I don't need hormone replacement therapy yet, which is a GREAT thing.

Another change is the medication I take for my blood pressure and depression/anxiety. So far, I haven't noticed a change in either area except the depression/anxiety medication makes me feel physically sick, so that's a lovely way to start the day. I also decided I need to get one of those pill containers for morning and night because keeping track of my medicine is getting to be difficult. I'm afraid I'm going to take the wrong thing at the wrong time or double up on something I shouldn't. Honestly, I don't know how elderly people keep this all straight.

The biggest change so far is easily my hair loss. I've  never had post-partum hair loss before, and I don't think that's what this is at all. I think it's either hormonal or medication related. It started as a few strands here or there (a few weeks ago) but this weekend I noticed every time I run my hand through my hair, a small handful will come out. It's... weird. I mean, I have extraordinarily thick hair so I wouldn't be opposed to it thinning out a bit but now I'm a little worried I need to call someone about this. I'll likely just wait until my next appointment in December to check on my medication.

But to combat feeling overwhelmed, I put up our Christmas tree on Sunday. Christmas is my most favorite time of year and I'm holding onto it like a life line at this point. We are really blessed, even more so this year, and I'll talk more about that later. I just want to soak it all up, you know?


Anna (herding cats-burning soup) said...

Oh that would be very frustrating. I hope your Dec appointments go well.

Julie H said...

I lost a lot of hair when I lost all that weight. It was a bit frightening.