More tests ordered

So nothing really new from today. I reported that the trileptal, migraine diet, and exercises were a FAIL. We discussed the one migraine I found that is okayed for breastfeeding - Imitrex. He commented that he wouldn't recommend it while breastfeeding, but it also wouldn't serve my purpose. There are apparently 2 types of migraine meds - one blocks them, the other reacts to them. There are more technical terms, but I'm exhausted and can't remember them. Imitrex is a reactor, and since the dizziness is happening every hour on bad days, it won't help much.

So we have decided on 2 courses of action for now.

1) On Thursday I will return for another test. Due to the symmetry, despite the high amplitude on the VEMPs, they are ruling out a dehiscience (sp?). So I will get a ENG/VNG on Thursday. It sounds like they will squirt water in my ear and see how my eyes react. I still have the nystagmus as recorded last time, so there is a strong suspicion that there really is an issue with my inner ear and that it isn't hormonal/migraine related.

2) Start taking a cocktail of supplements - magnesium, riboflavin (b2), and coenzyme Q10. They are all found normally in the body, so it won't pose a risk to Carolyn and could potentially help. I found some information online that magnesium can actually have positive effects while breastfeeding by regulating milk production between ovulation and menstruation, so that could be helpful. He did say that this could take 10-12 weeks to produce results.

So the good news is that stopping breastfeeding wasn't brought up today. I will be willing to discuss it at my next appointment 4/16, since that is after Carolyn's 1st birthday. Although since she still nurses 7-8x/day, I'm not quite sure how it will work. I guess time will tell though. Still no answers, but at least we're moving forward a little. I reallly hope we get this sorted out before I hit the 6 month mark. Only 1.5 months left before I get there though. I've started a file to keep track of my truly bad days, maybe we can discover a pattern. Today was a bad day.

Scared

I have an appointment on Tuesday with Dr Hain and I'm scared. I'm not even totally sure what I'm scared about. There's a possibility I could be told there are ultimately 2 options - live with it or have surgery that risks deafness. But I couldn't really be told that Tuesday since I'm pretty sure they'd need to do another CT to be sure that bone wearing away is truly the issue.

I hate not knowing what is wrong with me. Every additional twitch/pain sets off warning signals in my brain, that maybe the doctors missed something the first time. Although my films have been looked at by 3 different qualified professionals. I don't think they ALL could have missed something huge. I worry that if they do the CT, they'll discover the meningioma is in fact growing and that we'll need to treat that.

I really need to try and not think about any of this today. I have plenty to do during naptimes - assessment, daily reading for my dad, clean up around here. But when Carolyn is awake, I can't seem to help my mind from wandering. After all, playing with an 11 month old is not exactly the most mind stimulating thing in the world. I'm also quite exhausted, despite Carolyn sleeping 7-5 last night. I just kept waking up throughout the night. I need to go enjoy my daughter and try not to focus on what might be. It doesn't help that my mom's birthday was 3/21 and I've been thinking about her a lot. I miss her and I wish she was around to help me through all of this. I can't wait for Jon to get home so we can be together tonight. Then I have 9 days with him for break. Too bad this appointment falls right in the middle.

Enough rambling, off to play with Carolyn.

Friday was bad

Friday was a horribly dizzy day. I felt dizzy practically all day. Multiple times when changing position I had to steady myself on the door frame/wall and would slightly black out. Much different from past dizziness issues. I also was quite dizzy just sitting on the couch. I can not think of any reason for this horrible day. But now I am really looking forward to seeing Dr Hain on 3/31. I have continued to feel fairly dizzy all weekend, although I was fine through my 1 hour soccer game Friday night. In fact, I'm dizzy as I type.

I am scared that this dizziness is in fact hormonal and that it will be discovered that something is screwed up in my body and I can't have another baby. I know that wouldn't be the end of the world. But we're talking about trying at the end of August. I truly want to just have a diagnosis. But I don't want that diagnosis to really impact my life. I also worry that I'm starting to get a little depressed about the dizziness. But there's not anything I could do to alleviate the depression since we can't get rid of the dizziness. Just over 2 weeks, then we'll have a new road to head down.