Technically this is MCAS attack number 2 for April but for the purposes of this experiment it doesn’t matter. To be updated as I go. This is my first attempt. If you are reading this and would like other information, it doesn’t hurt to ask.
Symptoms peaked/exploded when I woke up at 5:20 am April 19, 2017
possible triggers leading up to event
1. dental work/fillings April 10 and April 12, both sides of my face, some pain after top left fillings. migraine for over 12 hours April 14 with trigeminal neuropathy in face but I could still function at home well enough
2. anti-fungal troche use around April 14? This is about the same time a rash presenting mostly as red dots appeared. Mostly on my arms
3. bug bite on my earlobe evening of April 16. I reacted severely and within minutes. Throbbing/itchy ear. April 17 my neck was also itchy. Needed oral benadryl.
4. (physical) stress of doctor appointment burnout
5. Storms/weather April 17
6. need xolair in less than a week. Next Xolair scheduled for April 24
symptoms leading up to event
1. tachycardia on multiple days which increased my overall heart rate for that day. Weird spikes in heart rate monitor on fitbit. I couldn’t figure out why my heart rate was spiking so much. Read something that reminded me of tachycardia symptom for MCAS. This includes “wonky” heart rate charted when I’m asleep. (Again thank you fitbit.)
2. pain in lower back and SI joint pain for over 3 days
3. joint pain separate from SI joint/back pain
4. I don’t know if the aforementioned rash was due to the troche or a symptom of the MCAS attack
5. nausea morning of April 18
6. increased fatigue and increased sleep issues for over 3 days
7. April 18 – feeling of pressure in my head not in any of the usual places I have migraine/headache pain
8. interstitial cystitis multi-symptoms flare
9. Some GI distress? Possible wider range of symptoms than usual
10. headache – evening April 18 which zomig nasal spray helped but then the zomig wore off and I started having some pain again
11. increase in severity of blurry vision, eye pain
12. increased skin sensitivity – not just from pressure
13. I think I remember sound sensitivity previous to 18th
Things that help
1. benadryl and tylenol and my usual load of antihistamines (doxepin, xyzal, hydroxyzine, zantac) can hold back the tide for a little while but I need something stronger eventually
2. xolair seems to protect me. I can track triggers and symptoms better because my baseline is a little more stable. I think xolair is stopping more headaches from turning into migraines.
3. PREDNISONE – this is second attack I’ve had prednisone available. It has higher efficacy rate for pain management than opiates do until the pain levels lessen and after that tylenol is enough.
4. not moving AT ALL
5. heat, but not directly on my face
6. avoiding stress as much as possible
Initial symptoms when migraine occurred
1. migraine, trigeminal neuropathy in face worse than usual migraine
3. lower back pain, pelvic/abdominal pain. Bladder pain. Do I have chronic pelvic pain?
4. confusion, anxiety, depression – like a panic attack but not panic
6. flushing, skin sensitive to touch
7. muscle tension/stiffness
8. sound/light sensitivity but it’s mild-moderate
(rash still present, no idea if better or same, I don’t think it’s worse)
afternoon – strong cravings for chocolate and fats
evening – odd mind clouding pain in back/right side of head. fatigue and other confusing symptoms. Finally used zomig around 7-7:30 pm.
11:30 pm – very very tired, hot shower helped, feel asleep using tens on neck which helped I think. I think I remember pain returning in my head but not bad enough to stop me from sleeping and I thought maybe headache was gone. Needed to wake up to pee once.
5:20 am – woke up because of the pain in my head and abdomen. getting up for heat/tramadol and zofran immediately made pain worse. strong nausea when standing
laid in bed moving as little as possible and pain was at a 2 if I didn’t move. Flaring to 5 when I move my head laying down or moving to drink water without sitting up. Flaring to 8 when standing. tramadol gave very little relief but still worth taking. Laid in bed looking at my phone to distract myself from the pain that wouldn’t let me sleep.
7:30 am – help from Josh to take usual morning meds load (Accolate, baclofen, antihistamines) Also took 500 mg Tylenol and 25 mg Benadryl because I had it available.
8 am – 20 mg prednisone with large glass of (goat) milk and 2 small cookies
8:45 am – I can feel the pain is better even without moving – can sit and stand with minimal pain but moving still makes pain worse. Now pain is more like a 5 when moving too fast while standing
10-10:30 am – assembled breakfast, took the rest of my morning meds, and ate more for those meds (SSRI, MS meds, vitamins) while at computer desk (closer to kitchen than couch)
**note: able to move around slowly and accomplish small tasks as well as be at computer to log this despite pain in neck, lower back, abdomen, face, head* – without prednisone I would have been immobile and probably needing to wait to “stack” hydrocodone and 50 mg of benadryl on so that I could eventually pass out or lower pain levels enough to be able to sit up right.
(12:30 pm left computer)
12:45 pm – 2nd dose of 20 mg prednisone
2:30 pm – tramadol because I realized that’s why the pain in the face was getting worse – more than 6 hours since last dose
– pressure/pelvic pain slightly better with two hours of heating pad on the couch but IC symptoms have progressed to blood in urine? (also waiting still waiting to hear back about positive effects of pred for my bladder)
3:30-4:00 pm – regular afternoon meds except I’m going back to 1 xyzal and 4 hydroxyzine. Also took more reglan since nausea seems to be returning. I’ll switch back to 2000mg quercetin today too. (I tried it Sunday through Tuesday and today is Wednesday)
*tachycardia still present, maybe worse?*
5-5:15 pm – tired of this tachycardia, BP 115/61 and pulse around 110, while RECLINED on couch with legs up, also took 2.5 mg Valium to see if that would help
6 pm – I’ve had increased frequency of going to pee but it seems to be calming down. pressure in my abdomen is definitely better than it was this morning. Valium helped, pulse in the 90s when sitting
8-10 pm – dinner, extra benadryl, tylenol, regular meds, feeling a little better after dinner except for abdomen. pain is better with tylenol. last round of meds at 10 pm
– not showering, rash on arms definitely cleared up from prednisone
11 pm – in bed. Tens for upper back at neck and heat on my abdomen. Feeling tons better laying down and since my night-time meds have kicked in (including 20 mg doxepin and more hydroxyzine)
Both sides of my jaw have started snapping and cracking. Took awhile to get to sleep and then according to my fitbit I probably never left REM sleep. Don’t know what’s worse, 5 hours of sleep with a full sleep cycle or cycling through REM. (Side note it was also first night Rey and Finn weren’t in their room.)
5:30 am – migraine pain is back because most of my meds are worn off or low. I should probably try taking 10 pm hydroxyzine when I’m actually getting in bed or turning out the light. I think that would help this a ton. Awake to pee earlier in the night, otherwise bladder much better, no other obvious symptoms yet. 1000 mg tylenol and 25 mg benadryl helped my headache
8 am – up. eye pain. back pain better. Abdomen/GI still touchy, mac & cheese for dinner last night was “too heavy”, skin better – no flushing and less sensitive
9 am – first 20 mg dose of prednisone. breakfast and meds. Went smoothie with water for stomach
10 am – feeling ok post breakfast. Water based smoothie means I’ve super hydrated
12:30 pm – all things considered I feel ok. Prednisone definitely figures into that of course. GI/bladder/migraine pain are all minimal. I wonder if I can do 30 mg pred total today instead of 40.
1:00 pm – 10 mg prednisone, 30 for the day. I seem to be doing ok on the decreased dose. GI and bladder are calmer. The migraine is almost gone? Hard to tell with 2 nights of crap sleep.
3:45 pm – regular afternoon pills. day 2 of switching 2nd xyzal for hydroxyzine
*barometric pressure has started to fall, supposed to continue thru today and tomorrow
5-7:00 pm – estimate – flushing spiked because of anxiety spiking from prednisone side effects. In the past Xanax hasn’t helped this.
7:30 – started feeling better
8-9:00 pm – dinner, meds. feeling better but unsure if migraine is gone
*note: ate about 1500 calories for the day, instead of 1800. Second time that it feels like prednisone has calmed down my body and the food actually feeds it.
9:30-10:30 pm – showering, bedtime meds, did not remember to delay 10:00 pm hydroxyzine to later in the night, note that I definitely do have the oral/nasal dermatitis rash thing that the dermatologist diagnosed last summer – peeling around nose and mouth. Rosadan used
midnight – up one last time to pee, had trouble getting to sleep, typical for prednisone, went to sleep little later
*went to sleep late and didn’t have to wake up to pee, bladder symptoms down, some GI symptoms – mostly gas?
8:30 am – up to feed cats, take first round of meds, migraine definitely gone, GI calmer, eyes hurt, I think I might be dilating later. Reapplied rosadan, rash looks better.
9:30 am – breakfast and meds, 20 mg prednisone to start taper
*have flushing and slight tremor. My guess is that it’s prednisone but no idea.
10:00 am – 29.9 in
forecasted to be 29.64 in at 7 pm
11 am – dilated eyes because of severe blurriness and pain. This limited my activities. Still ended up with eye strain headache.
12:30 pm – first lunch
2:30 pm – chiropractor appt, also ran late. acupuncture and resting my eyes helped eyes/headache for a little but then driving home ruined everything again. (tried zomig at 2 for head since I couldn’t tell for sure if it was an eye strain headache)
4:15-4:30 pm – 3:30 meds late. (forgot to replace xyzal with hydroxyzine) second lunch. (Laid down with heat on eyes and head got better so I know it’s related to eye strain)
6:00 pm – half valium for muscles, especially post chiropractor. feeling ok except for eyes, some GI discomfort, and some IC symptoms. Nothing major. Overall seems to be an improvement. Leaving the house again for dinner/groceries but I’m not driving.
6:15-8:30 pm – dinner at Twisted Root, groceries at Whole Foods. Despite dinner I think I still ate less calories than “normal”…now clear the eye strain also related to the cold front and severe thunderstorms
10:30-11:30 pm – tired, skipping shower because I stayed up a little late, feeling better. Remembered to take 10 pm hydroxyzine at 11 pm instead.
*slept mostly ok. Woke up tired but more normal level tired because I did too much yesterday. Didn’t have to wake up to pee. woken up by kittens around 7:30 am. morning stiffness less severe than most of the week
8 am – morning meds
9:30 am – breakfast, rest of morning meds, last day of prednisone 10 mg.
ended up much like any other day except fatigue was worse than “normal”
reacted to something in dinner which included small amount of garlic and diced/canned tomatoes but no idea to know which/how much/why – face was painfully flushed and slightly throbbing
fell asleep early, some abdominal discomfort and back/spine pain when I went to bed
Woke up with some additional back pain and grogginess but based on everything else and the COLD front? (68 in the house when we woke up) I think I’m ok
April 19 (40) – 20 (30) – 21 (20) – 22 (10) totals 10 10 mg tabs taken
1. migraine, trigeminal neuropathy in face worse than usual migraine – Complete resolution
2. Fatigue – improved – step counts increased and sleep quality has improved somewhat
3. lower back pain – improved, pain from weather change also a factor
4. pelvic/abdominal pain. Bladder pain. – Significant improvement
4. confusion, anxiety, depression – like a panic attack but not panic — had problems with anxiety through prednisone taper too – Major improvement
5. Nausea – complete resolution
6. Significant improvement: last instance of flushing was less widespread and a shorter timespan, skin sensitivity lower
7. Improved: muscle tension/stiffness
8. Complete resolution: sound/light sensitivity
9. Tachycardia: improved, no more extremely uncomfortable episodes. Heart rate might be down as of 4/23
10. Eye pain resolved, also with dilating drops
(rash seems to be gone, still not positive on cause)
Fibit screenshots that overlap the time period:
final update April 23, 2017