When I go to write these health updates, the very first thing I do is pull out my phone and go to my notes. Where I’ve faithfully – or not- kept a log of how I’ve been feeling. Then I’ll email that log to myself and copy and paste it below my Overall Health section… (the wonders of technology that makes that so simple). Well. When I just searched for it, apparently I didn’t put down one day in my log for this month. Not even one day! So, I’m having to rely completely on my memory for this post. Which should be interesting…
Overall Health: I hesitantly say that I’m doing better than I was at last month’s update. Overwhelming fatigue and visual auras still command much of my attention though.
Migraine: Thankfully, I haven’t had more than one turn into a nuclear migraine but there have been several that have wanted to. Mostly, the pain level gets to an 8. And hovers. There have been several days that I didn’t need a clonidine until later in the afternoon, and others where I was taking one right after getting up (and all through the day) and yet nothing would touch the pain.
Sleep: I’m hitting 6 to 7 hours a night, with at least 3 wakings. Majority of them I need the ice pack on the pillow. But there was about a week where I barely needed the ice pack.
Memory/Brain Fog: This has improved a little I think.
Vision: The auras just don’t want to go away this month. Most days I have a vague sense that my vision is off somehow and others, I get the more intense colors/blur/black spots. Thankfully so far this month, I haven’t lost sight in my left eye at all.
TMJ: This is about the same as last month although since I’ve been randomly falling asleep during the day (this means without my night guard), my jaw is tenser and my teeth ache a little more. Other than carrying my night guard around with me, I’m not sure how to help this.
Fatigue: I can’t even tell you how much this has decreased you guys. Partly because it would be hard to describe that change and yet get across how much it is still affecting me -and like I’ve mentioned above, I’m taking almost daily naps. Most of them are right after dinner (picture me dragging myself from table to couch without cleaning up from the meal type of tired).
Fibromyalgia: Even with cheating last week, this hasn’t been near too terrible. I still have my left side (especially my calf) aching/cramping/burning pain fairly regularly but the intensity has eased.
Weight Loss: Minimal
Mood: I’m very pleased to report that this has mellowed out again and I’m certain it’s because I started back up on Xiao Chai Hu Tang. Remind me to stay on these chinese herbs. It’s worth it.
Digestion: We’re staying at my normal! Which, is clearly not what it should be but I’m okay with it for now.
SO. I’d like to state the reason for my improvements for this month.
We took me off the doxycycline. The day before I went in to my doctor, it hit me that I’d been feeling awful for 6 weeks. And I’d been on the doxy for….6 weeks. My body just couldn’t handle it. You know what else has disappeared? The rash all over my face.
I am still taking the NP Thyroid and believe that it’s helping my fatigue.
It’s been a slow battle coming back from being on that antibiotic and I’m thankful that I’m getting back to how I felt before. Of course, it’s frustrating that I fell that far downhill but I’m glad I tried it because now we know.
As of the 24th, I started LDN’s (low dose naltrexone)- we’re targeting my migraines with this. I’ve been told that they are tolerated very well. We’ve started me out at 0.5mg and are going to slowly increase the dose til I reach 4.5mg (which is the standard dosage). I had to really force myself to do this – after such a strong reaction to the antibiotics, I really just wanted to curl up and lick my wounds. But I knew that that wasn’t the right decision. I can’t waste any more time that I could potentially be getting well, just to get over fear. Sometimes, that’s the right choice. But this time, I knew I had to push myself and just try it.
Because I can’t even imagine life without migraines. I’ve been having them since I was…18 or 19. To go through a day, two days, a week! without one… Ahhh, what a thought. And if we can get these to go away/ or just minimize them, we believe that some of my other pains will ease as well.
So here’s to being bold and trying new things in the slow journey to health.
~Laura
the start of a good life 