the start of a good life

I’ve a feeling that this one is going to be LONG folks. I’m going to try and keep it from being so, but you might want to grab a cup o’ tea first. (yes, I have My Fair Lady on the brain)

Migraine app notes – I’ve had 12 attacks, lasting 56 hours. I had no attack-free days.  My average sleep is still 7 hours, but honestly this doesn’t track right this month. I’ve had a ‘devilish of a time’ sleeping lately. I took 59 clonidine (20 more than last month). they happen 59% of the time between 12pm and 6 pm. Average level is 7.7. Top three aura/prodrome are fatigue/achiness, muscle stiffness and weakness. Top three triggers are neck pain, too much activity and interrupted sleep. Top three symptoms are jaw pain, neck pain and fatigue. Frequent start positions are the same.

Overall Health/Treatment: It’s been bad folks. BAD. Neurological pain (what I’ve been calling aches/tense) has spread from my calves/feet up to my shoulders/arms. Sleep is difficult and sporadic. The aches seem to be worse when my migraine is less. Still hitting hard in evenings. Possible some of it is flare up from seeing a new doctor for my TMJ. Treating for Babesia and Bartonella. A lot of tears and prayers and video games this month.

Notes from the month:

4-2 – late evening – severe calf cramps/tense and all over body achiness. heated blanket doesn’t seem to be helping. keeping me awake. migraine non existent. fatigue has been present all day, despite a short afternoon nap

 4-4 Bad aches again tonight. Curious if they started when I started the ceanothus in the evening again. Debating going back to just taking it am and lunchtime and seeing if the aches recede at all. Felt good today until later evening. Took one clonidine early aft and then in evening but migraine never got bad. Later evening back of skull was like my nerves were on fire and eye sockets hurt. About an hour​ later, it had calmed down.
-4-17 . The aches started easing over the weekend, except for late sat night. Still present with some cramping. Migraine kept down with clonidine. Major fatigue today, unable to do much but be on the couch. Feel clearer mentally. possible the antibiotics are helping, aside from fatigue/aches, I’ve been better

– 4-20 Dr A today. Gonna treat me for babesia/Bartonella. Going to finish copper and then go off. Gonna get on B complex again. Started back on ceanothus this evening, one drop. Fatigue, body aches, blurry vision, migraines= all severe this past month. Finished and off of doxycycline. No heavy metal toxicity, just a little lead. Bad brain fog all day.
4-22 — left side achy/cramps including back and arm/shoulder. Migraine stayed calm but present.
4-24 — aches last night made it hard to sleep, even with melatonin. Started taking st. John’s Wort today, 1 pill.

4-27 — Slept good last few nights. Upped St. John’s Wort to 2 a day. aches have eased minimally. Brain fog has eased a little.

Migraines:  They only hit a level 10 a few times which is such a blessing. Overall they have responded well to treatment.

Digestion/TMJ: digestion is funky but not awful, I’m rather used to it now. TMJ – I’ve been to see the ‘jaw doctor’ as I call her, 3 times now and have 2 more scheduled. She knows about LYME and has a wide base of knowledge. Curious if my aches have started easing a bit because of the bodywork she’s been doing. Jaw still hurts bad but I can tell a difference in range of motion in hips, arms and neck. Bad side of it is the front of my neck is sore, making me feel like I’m gagging. Have started icing to help. Encouraged that this can be resolved and get rid of at least the TMJ, would be SO nice.

Sleep: Even with melatonin or theanine, sleep has been elusive. It was worse in the beginning of the month – started listening to an audiobook just to help pass the time.

Memory/Brain Fog: Brain fog has come back with a vengeance. Memory…. is still a struggle.

Vision: Still blurrier than they should be. But, my glasses are bent so I can’t wear them, I’ve gotta get some new ones asap.

Dizziness: This has kicked up. Got dizzy on the elevator last weekend. fun stuff.

Joint Pain: This disappeared for a week or so but it’s come back in my elbows, wrists and fingers. UGH. Go away, I don’t need you.

Fatigue:  I don’t care what else I’m dealing with – or not dealing with – fatigue is a constant companion.

Weight gain:  yep, it’s started again. Only a few pounds but !!!!!!!