I'll add an intro to this journal/blog thing. I'm going through some really weird sh!t over the past few months and there are so many factors to keep track of. I tried keeping a log of food, meds, sleep, workload but my entries have been sporadic. Ive been into this AVM thing ( gama knife in 2000, then a craniotomy in 2009 ) so I'm used to ups and downs, but over the past few months things have been getting a tad surreal. Ok - start random entries:
Wed April 17, 2012 - Hyper-reactive to people ( in my head ) today. It was like everything that was said around me was trivial and obvious, made me nauseous. "Heres an interesting story", or "There was this one time", or "If your think that's good..." already had me clenching my teeth cause I knew the forthcoming story would be none of those things.
Fri April 19, 2012 - Had three waves of "am I dreaming" lasting only a second or two. Dizzier than normal. The results from my 48hr EEG - no sezuire activity but I may need a damn sleep apnea mask! Didnt see that coming.
Sat April 20, 2012 - Starting to wonder why I'm taking naps every weekend day when I dont need them during the week. I dont feel any more refreshed. Should I force my self to stay awake?
Mon April 23, 2012 - Another, but very prevalent, weird thing is that I can't parse my tasks. This isn't new but I just figured out that it is going on. Examp - I have eight active projects, each with a set of stages/tasks. Each separate element are popping up in my head as urgent.... like taking a shower in Post-it notes. Yes I tried making prioritized lists but the other things are still popping into my mind. Ugh. Repeating term for this thread "brain racing". Thank God I have an office.
Tues April 24, 2012 - Caught in a few jarring foggy wave today, looked up and I was a tad out of it or slightly disoriented. Understanding people speaking took more focus than normal. When I would speak, I kept having feelings that I wasn't making sense and spent tons of energy scan the face of whom ever I was talking to to see if they were confused. Draining. Took 1/4 Clonaz & missed all my morning pills. Brain racing = 4/5.
Thurs April 26, 2012 - Brain racing = 3/5. Got a bunch done today. Right hand is still warm, mostly after coding without a break.
Friday Aug 17, 2012 - Back from the eastcoast trip - Feeling the numb, buzzy symptoms returning almost immediately. Felt pretty decently out there with killer hours and constant "on the go" physical activity. Whats changed? Well a few things: +( Excersise, personal intereaction, more food, drinking, physical focus/stress) -( programming, cold office, intense focus, Kyan stress ). There was a +3 hour time shift so maybe im still going through jet lag. Doubt that. Maybe I'm remembering incorrectly that I felt better. Hmmm - maybe time to make an uber enviornment grid/chart.
Mon Sept 10th, 2012 - 10:30am, Super anxious and seizy. Pretty sure I missed my pills, asked Leo to drive me home. Cold, painful arm.
Thurs Sept 13th, 2012 - Teeple. Switching to 150mg of Lyrica in the pm, nixing the last 25mg of lamiccatal in the pm.
Tues Sept 18th, 2012 - God awful day. Had to sit in silence twice to fit off the fear of a sieze. Took a total of .25 Clonaz. Cold/hot, painful arm.
Wed Sept 19th, 2012 -Ugh. 2 Meetings today, pretty productive. Keep checking back to CNN on the Romney 47% thing, digging into the massive engr site redo. Physical symptoms are ok but the mind racing is pretty bad. I'm productive at the programig stuff but I have to fight off urges to tanget off. Like right now - this was a compultion right in the middle of a page layout. Getting head buzzy but only slight arm tingles. Side thoughts are not so positite, might make this thread "unpublished".
Thur Sept 20th, 2012 -Space shuttle, sushi with Pam. Rough Kyan morning, stressful. Four meetings & begining to program the new voting thing in Drupal. Arm is getting more cold and painfull, 3:49pm. Ringing in my ear is subtle but still audible.
Sun Sept 23th, 2012 -End of the weekend. Still AM = 100mg Lyrica + 1000 Keppra + 200mg, PM = 150mg Lyrica + 1000 Keppra + 200mg. Waves of anxioty yesterday, today I started up a tad grumpy. After dinner - it felt like unfomfortable drug widthdrawl( cold arm, foggy, headache, back & feet twitchy). Comprehension - very hard getting through any cnn article without re-reading multiple sentances, multipletimes to get the context.
Mon Sept 24th, 2012 -Tough morning. More later. Bed super early but fell asleep after 11:00pm
Tues Sept 25th, 2012 - Took .125mg of Clonaz + normal moring doseage. Note: the picture to the side show the day split into rows, top is the morning, bottom is the evening. Good day all around. Starting to lose sleep fluidity, its now 11:04pm. Acupuncture earlier ~ 6:00pm.
Wed Sept 26th, 2012 - Same cocktail as above. All good so far ( 2:19pm ). :-)
Mon Oct 1st, 2012 - Felt awful, 3hours of sleep. Took 1/2 of a Clonaz;
Tues Oct 2nd, 2012 - Still bad. Fair sleep due to work issues, up a little late. Accu today. Crash at 11:30;
Monday Oct 15th, 2012 - Extremely foggy, almost stoned. Can zip around, able be quite functional but the instantly "crash" feeling events pop up maybe once every other day. The icy hand...........ugh. A little late omn getting lunch, 12:47pm
Thursday Oct 25th, 2012 -Pretty productive over the past few weeks, but oddly in a bizzare fog. Meds havent changed but the foggieness is now consistantly somewhere between a tired state and a stoned state. The latter feels like I'm 100% the observer, just staring at a keyboard or washing my sons hair without suppliying any deliberate instructions to my muscles or felling any physical feelback. It feels JUST like watching a a tv show and mentally thinking, "he should type out 'Thursday Oct 25th, 2012 -Pretty productive over the past few weeks' ". Very very surreal. Now, since i bounce in and out of favor in my current cocktail( same as pic above ) - I also have yet to decide if I want to lose this condition on a gamble that switching meds would change for the worse. Am I more productive orchestrating a tv show versus coming back to ... well whatever the "non-foggy" state is. Gotta watch this one for a bit. Not all is rosey - my right hand fingers are ice-cold and sting all the time. The right pointer finger and right thumb in particular. Add a omnidirectional ringing in the ears that started up a month ago, not sure if i mentioned that one. Donald Trump is an asshole.
Friday Nov 2nd, 2012 -Just checking in, no med changes. The fogginess is pretty bad, hand is not bad but still cold to the point of know its there ALL tha time. Go ahead, put a clothes pin on your thumb and see how long you can ignore it. Ringing in the ear has been all day - wtf? The only thing that make me feel half normal is a constantly stream of coffee. Is that any clue? Not sure, im not a neurologist.
Monday Fri 23rd, 2012 -Lowered my evening Lyrica. Sorry for the bad Photoshop
Monday Nov 19th, 2012 -I finally came up with a better description of my my symptoms: a more detached higher level task request for each action with NO tactile feedback. Here a before and after feeling experience of walking to my office
1) Walk down the alleyway, listen for possible collisions with people or bikes. Feel the weighting of each pocket for keys, wallet etc. Scan ahead for surface cracks, adjust stride and direction. Check watch.
2) Scan environment again for collisions and turn into the Architecture building stairs. Adjust the foot position on the diagonal bricks. Decided to enter the glass doors or walk around based on smokers or if a person lags behind me more than 15ft( causes me to hold the door for an uncomfortable length of time. Can always choose to speed up or slow down to get of of this window. Scan for ear buds, ear buds mean I can just nod a greeting vs vocalizing a "good morning").
3) Enter lobby.
1) Trigger "Get into lobby" directive
2) Open lobby door
Black Friday Nov 23rd, 2012 - till doing the the knocked down Lyrica (2 pills in the evening). Things seem ok but I'm gone back to taking 1/4 of the Clonazapam pill each morning.
Thur Dec 6th, 2012 - Whoa - really dizzy and distant. Barely functional but still producing. Had One home coffee, normal pills , then tried the new office espresso machine for the first time. Still super tired.
Mon Dec 10th, 2012 - Dizzy and distant ALL weekend. Did a lot of sleeping but was still detached when awake and getting up to do things required a conscience "push" to get moving. Tried a hour long walk to snap out of it, no change. Two waves of face and vertigo made me consider a hospital trip during breakfast and the walk. Ear ringing noticeable when the symptoms are bad.
80% functional in every-way but still feel this odd detachment more than ever. REALLY annoying.
Thur Dec 13th, 2012 - Teeple visit, added 10mg of Peroxetine once a day in the evening.
Friday Dec 14th, 2012 - Took a .125mg Clonaz and made it through the IMAX Hobit 3d and Xmas party just fine. Got home and was one the edge of throwing up until 2:00am.
Moday Dec 17th, 2012 - No Clonaz since Friday, still very dizzy. Kyan's jumping motion and him shaking my head freaked me out.
Fri Dec 21st, 2012 - Switching the 10mg of Peroxetine to the morning.
New Years - Switch to Blue! !!!!!!!!!!
Wed Jan 9th, 2013 - Highly dialog-focused meeting this morning. Usually just light tech talk over coffee but this was more intense - got very siezurey, numb face, distant, echoey,
Thurs Jan 10th, 2013 - Took the second half of the Pax at lunch (was supposed to jump to 20mg two and a half weeks ago). On the way home, got very siezurey, numb face, distant, echoey, sweaty hands, near to pulling over. Got home and passed out till 8:00.
Thurs Jan 10th, 2013 - Getting off of Lyrica, starting the wean down. AM = 50mg Lyrica + 1000 Keppra + 200 Vimpat, PM = 100mg Lyrica + 1000 Keppra + 200 Vimpat.
Wed Jan 16th, 2013 - Crash thing. No lunch, heavy work meeting schedual. Around 6:20, got up to take dinner pills and broke out in a disoriented sweat, face tightening, unable to operate the cel phone. Took a Conaz and th rest of the evening pills, put my head on the desk for 5mins and called Pam to come get me. We ate left my car and ate McDs and crash.
Thurs Jan 17th, 2013 - Busy at work but struggled with the foggyness.
Friday Jan 18th, 2013 - Clumbsly morning, may have taken a full Clonaz by mistake - realizing it the second I swallowed it. Monitoring effects closely. So far, feel 2x distant/slow but very work functional! Not distractible.
Thursday June 21st, 2013 - Awfull vertigo, verbal comprehension. Sleeping in till lunchtime, headed into the office for a meeting. Update: only made it two hours into the afternoon, headed back home to sleep.
Monday July 1st, 2013 - New MRI. Not sure what it means yet, just requested the images on CD right after I was done with the scan. I guess Teeple will call in the morning to tell me if this shows anything bad or if I just need another med tweak.
Dosing over the years:
Dilantin and lamictal
Keppra and lamictal
Keppra, lamictal and vimpat
Keppra, vimpat, lyrica, clonazepam (.125)
Pre-recover crazy notes
How about that bag of crazy huh? Anyway its now April 2018 and the med cocktail is:
2000mg Keppra, 300mg Vimpat, .125mg Clonazepam kicker if needed. But today I'm logging the exact effects of the Doxycycline I have to take for tick #2 for 14 days. Today is day 2, and its not going so well. Admittedly the amount of sleep last night was ~6 hours.... pausing to take an over the counter sleeping pill, add this to the notes for tomorrow, brb.
Sleeping pill down, 9:40pm if thats of use later. Ok back to the Doxy, after taking the second out of the two per day after lunch - I started getting weird side effects that peaks at dinner time which included:
Head pressure - like being underwater (2/10)
Sounds and voices are "echoy" (2/10)
Time delay in voices matching mouth movements (1/10 but noticable)
Mind racing (3/10)