It's been a pretty rough and emotional two months. Plenty going on. My body doesn't do so well with transitions and changes in routine. So a big move was certainly a challenge. To say the least, the move has not gone as planned! Our new apartment had been freshly renovated when we moved in...freshly painted walls, newly installed appliances, and brand new hard wood floors throughout. Sounds great, right? Well, moving day came. I got to our apartment around 5:00 that day. It was a warm day, and though the apartment had air conditioning, it was still about 87 degrees inside. In addition, the fumes from the paint and floor varnish were overpowering. My body's reaction was dramatic, to say the least. I quickly became overheated and overwhelmed. I lost consciousness multiple times, reportedly stopped breathing several times, and had full body convulsions. I had to be carried out of the building.
That was July 26. Six weeks later, I'm still not living in our apartment. My incredible husband has spent all of this time trying to rid the apartment of fumes. We have tried everything you can think of. He's been living in a windtunnel with fans blowing. He lived with cut up onions spread around the apartment to absorb the fumes. Same for kitty litter. He scrubbed the floors with vinegar, vinegar and baking soda, and floor cleaner- multiple times. This involved moving all the furniture out of the way- multiple times. He sprayed vinegar and baking soda on every surface we own. After all that, I can spend about 20 minutes there before a migraine kicks in. And of course, for me, a migraine is a multi-day event. So I'm pretty scared of the place now. I've also had symptoms of mast cell activation, like early stage anaphylaxis, after being there too long. At this point, I'm not really seeing any improvement. We are finally at our wit's end and looking into breaking our lease and moving to a new apartment. We are seeking legal aid to get out of our lease. The place we are interested in moving to will be available by November 1, so we will still be living separately for a while (I'm staying at my mom's house for now.)
It's been a challenging time for us as a couple, not being able to live together or have a place that is ours. It's certainly been challenging for me, feeling like my illnesses are causing everyone so much grief - even more so than usual.
Of course, this has not been the only trouble I've been having, because I don't know how to only have one problem at a time!
I did a trial of Amitriptyline for migraine prevention. I took it for eight days at the lowest dose. Just to be interesting, I had a unusual, but not unheard of, side effect. I developed pretty severe insomnia. Usually, it is a sedating medication, but not for me! Even with extra doses of my night medications, I had very restless nights. The lack of sleep made me incredibly sick. So, so sick. My POTS was made 100 times worse, and I developed Inappropriate Sinus Tachycardia again. My heart rate was about 110 bpm at rest, instead of my usual 68 bpm. As if that weren't enough, I developed an infection during this time. The usual low grade fever and cold symptoms kicked in hard. And just to keep things interesting, I got trapped in a migraine cycle, too. This one lasted five days. Technically, it was three different migraines. After three days on Maxalt, I couldn't take anything as an abortive for the last two days (to avoid rebound migraines), so I just had to endure it. I also had a day where I couldn't stay conscious for most of the day. I've had to take my Midodrine and wear my compression hose again, just to stay conscious.
I'm only a few days out of that hellish time. I discontinued Amitriptyline (which evidently did NOT decrease my migraines). Many of my problems resolved with a good night's sleep. The Inappropriate Sinus Tachycardia went away overnight! What a relief. Unfortunately, the difficult time has set me back on my conditioning, so my POTS is a bit worse now. I'm working to get back to where I want to be. My conditioning also got worse from not being near my recumbent bike, since it's in the toxic apartment. We just got it moved back to my mom's house, so I can get back to daily exercise.
With my POTS worse again, I've had some trouble with the "Wall of Pain" again. That's what I call it when I'm going along, and all of a sudden, I hit a wall. I have to lie down and not move until the intense full-body pain, and frequently nausea, pass. I'm pretty sure this is a POTS symptom for me, as the Midodrine and compression hose seem to help.
I'm getting very frustrated by my "chemical sensitivities." Obviously the new apartment trouble. But also just fragrances whenever I leave the house. I went to the dentist. There was a scented candle lit. I had to take 2 Benadryl and hide in the bathroom while they put the candle out and blew a fan around. It never occurred to me to call ahead and ask for no fragrances to be used that day. I guess that's what I need to do, but I feel like I'm being so difficult!! I've even had this problem when visiting people's houses. I feel like, who am I to tell them not to use perfumes in their own home? I just don't want to cause people trouble like that. I'm also just really passive, and I don't know how to assert my needs. But I obviously need to get better at this if I want to be able to go anywhere. I know I could also get a mask. Maybe it would help a lot, but I'm not ready to do it yet. You know? My symptoms from fragrances are itchy eyes, nose, ears, and throat, which progresses to swelling in the throat and a deep cough with prolonged exposure.
One other thing I've noticed is that ever since my last surgery (18 months ago), I've had serious trouble lying flat on my back. This part will sound strange. At first, I only noticed it during sleep. If I sleep on my back, I have this intense dream that I can't wake up from. And the dreams always involve paralysis. I can usually avoid this by putting a fluffy pillow behind my back. The thing is, I seem to have this problem when I'm awake, but lying flat on my back, too. Frequently, for the cerebral hypoxia, I try to lie flat with my legs elevated. But I'm pretty sure it is actually making me worse now, because I get in this really weird state where I can barely move or respond. Turning on my side seems to help. It seems that this problem is from my new fusion, perhaps being fused from skull to C2, but no longer down to C4 anymore?
And no, I still haven't gotten follow-up scans or an appointment. How long do you think I can put it off? The expense is just not manageable right now. And did I mention, I will have four different health insurance plans this year? So much fun!
I actually still have other topics on my list to talk about, but this is probably enough for one day.
Thanks for reading my continuing saga. And I know I should stop apologizing so much, but I'm sorry for being so much trouble!
