2020-08-28 Notes (1)
- New Patient Appt
- 1st Appt
- With:
-- Dr. Monica Noya Santana
- On:
-- 2020-08-28 1:00 pm
- Where:
-- 528 Beau Chene Dr
- Type: 
-- Phone
-- Rescheduled fr in person. 
-- B/c of Hurricane Laura.
- Note (1):
-- 1st Phone Appt
-- Ie successfully completed the appt.
=Phone // Skype Notes=
=+=2020-08-27=+=
=+=9:15 am rec call 1-504-702-2000=+=
- 1m 6s
- My Cell Phone
- Rec while at appointment for Dr. Gonzales.
- Rescheduling of Appt (1):
-- Scheduler noted, "Hurricane Laura is causing UMC to 'send staff home early.'"
-- For date of 2020-08-28. Basically giving employees half days at the hospital.
- Rescheduling of Appt (2):
-- OG in-person appt at/UMC
-- w/Dr Monica Noya Santana
- Rescheduling of Appt (3): 
- Done on,
-- 2020-08-27_0915
- By,
-- UMC Scheduling
- To, 
-- Phone appt w/UMC neurologist Dr Monica Noya Santana.
-- For: 2020-08-28 1:00 pm
- Rescheduling of Appt (4):
- Note (1):
-- UMC scheduling said, “Phone number I’d receive call from. Might be 'personal' device.”
- Ie check call rec fr Dr. Monica Noya Santana. 
- To see if num is personal. Instead of Work (main).
-- For contact archival purposes.
=+=2020-08-28=+=
=+=1:46 pm called 1-504-962-6210=+=
- 1m 3s
- Skype
- Got to voicemail / auto-operator.
- Received msg playback. 
- Stating: "'They' were on other line." 
- Or, Stating: "That all lines were full/unavailable."
- Assumed: 
-- “they” (num listed for neurology)
-- Were in ongoing phone appt. W/preceding patient.
- Note (1):
-- Above called "1-504-962-6210"
-- Listed underneath "Neurology Clinic"
-- On, Patient Portal's/LCMC's:
--- "Appointment Details" web page
=+=2020-08-28=+=
=+=3:50 pm received call 1-504-702-2000=+=
- 58m 26s
- Skype
- From Dr. Monica Noya Santana.
- Note (1):
-- Assume this is not her personal device.
-- She was at UMC.
-- Believe this is the UMC main (out) line that appears.
- Note (2):
-- Will have follow-up phone appointment.
-- On 2020-09-08 2:00 pm.
-- To follow-up on discussed treatment options.
=Phone // Appt Notes=
- Nxt Appointment (1):
- Will have follow-up phone appointment.
- On, 
-- 2020-09-08 2:00 pm
- To, 
-- Follow-up on discussed treatment options.
- Nxt Appointment (2):
- Appointment will be post-her "research". On my neurological medical history.
- Research into my neurological disorders interactions.
- Research incl possible discussions,
-- w/Dr. Olejniczak
-- w/MD Anderson Cancer Center
- Nxt Appointment (3):
- She will discuss w/her "team".
-- The research to be done. 
-- And, what was covered in 2020-08-28 appt.
- 1st Appt Covered // Summary (1):
- All the records I read out loud to her.
-- MRI’s from 2008-08-08
-- Which have no record of within Ochsner’s system.
-- However, can be linked to them from past MRI brain scan.
-- That contains a link to the MRI's manufac web portal.
--- Which contains multitude of relevant tests (CT/MRI/etc).
- 1st Appt Covered // Summary (2):
- Web portal for MRI’s:
-- Noted to her that they have relevancy.
- Web portal for MRI’s:
-- Walked her through on how to get too.
- Walk thru:
-- Go to MyOschner -> Go to “Test Results” ->
-- Go To Fall 2016 -> Dr. Diane Africk listing ->
-- Select "Full Brain Scan MRI w/wo Contrast" -> Scroll to results ->
-- Select “show images” hyperlink -> Redirected to MRI webviewer ->
-- On Redirection -> Wait // Allow Load -> 
-- On Partial Load -> Wait // Allow Full Loading ->
-- On full Load -> Click on the center top-ish "dropdown" -> Drops-down an index "viewable" scans -> 
-- On load of "dropdown" (index of viewable scans) -> 
-- Now -> 
--- Navigate freely to all relevant scans. 
--- Ie any of the on file (Ochsner) MRI’s/CT scans etc. 
--- Within the webviewer's index.
- 1st Appt Covered // Summary (3):
-- Noted, 
--- To Dr. Monica Noya Santana
--- These are the only MRI’s I have access to. In this online “viewer” formatting.
-- Noted, 
--- She would likely not be allowed access to the others. 
--- On file w/MD Anderson Cancer Center.
--- Likely:
---- “I don’t need to know”
---- ||
---- “Dr doesn’t need to know”
- 1st Appt Covered // Summary (4):
- Noted, 
- “Father’s Notes”
-- Context w/Interferon Info
- Noted,
- “Father’s Notes”
-- Desc: Interferon notes on my treatment.
-- Dad took them in person. 
-- At MD Anderson appt w/me.
- 1st Appt Covered // Summary (5):
- Noted,
- “Father’s Notes”
-- Only record of treatment specifics.
-- Divulged on/around that date.
-- Divulged on/at said time.
- See, at the time, in effect:
-- "Gag" order w/publications.
- See, difficulty access "gagged" info:
-- Ie for myself -> my physicians.
-- Ie myself -> my continuation of care.
-- Ie unless myself -> in person requested (at time period) fr MD Anderson.
- 1st Appt Covered // Summary (6):
- Noted,
- “Father’s Notes” – “Anti Seizure Meds”
-- Seizure info + relevancy. 
-- Referenced in this doc.
- 1st Appt Covered // Summary (7):
- Noted,
-- 2008-08-18 
-- As,
--- Approx date seizures systemic of treatment started.
--- To be prominently showed. 
--- Ie effecting continuation of Interferon treatments.
-- See, 
--- Significant incidence/freq of "tonic clonic" seizures. 
--- Systemic of Interferon infusions + sub-q injections.
-- See, 
--- Dr. Jaime Morales at CHNO.
--- Witnessing and diagnosis of the "tonic clonic seizures".
--- This expressed to me, directly date of.
-- See,
--- How I could not keep jaw from chattering/shaking etc.
--- Uncontrollable movements etc.
--- While laying on the exam "table", setup.
---- "Table"/"beds" commonplace w/indiv exam rooms.
---- Ie "tables" paper covers, is pulled over, and disposed of post-exam.
-- See, 
--- Seizures effecting continuation of care. Regarding Interferon treatment.
--- Pre-major "gran mal" seizure + cessation of treatment.
- 1st Appt Covered // Summary (8):
- Noted, 
- “Father’s Notes”
-- 2008-08-14
-- CHNO doc's notes:
--- Interferon
--- Keppra
- 1st Appt Covered // Summary (9):
- Noted, 
- “Father’s Notes” - “Anti Seizure Meds”
-- 2008-08-18
-- Anti-Seizure Meds Ref:
--- Keppra
--- Topamax
--- Lamictal
--- Tvileptal
- 1st Appt Covered // Summary (10):
- Noted, 
- “Father’s Notes” - Meds Ref
-- 2008-08-18
-- Interferon Meds Ref:
--- “INTERFERON alpha-2b Scheving Corp. (Intron A)"
---- Hi dose -> 20 mu/m^2 5x/wk 4 wks
---- Lo “ -> 10 mu/m^2 3x/wk 48 wks
- 1st Appt Covered // Summary (11):
- Treatments - Cluster Migraine Headaches
- Noted,
-- Previous attempted treatments. 
--- Regarding diagnosed neurological disorders. 
- Treatments:
-- Neurontin
--- Neuropathy Idiopathic
--- Neuropathy Peripheral 
-- Botox Injections 
--- Cluster Migraine Headaches
--- See, 
---- Meds w/Migraine treatments.
---- Lowering seizure threshold in high school.
----- Inducing "gran mal" seizures.
-- Topamax
--- Cluster Migraine Headaches
-- Butalbital
--- Cluster Migraine Headaches
- 1st Appt Covered // Summary (12):
- Treatments - Butalbital
- Noted,
-- I stated, "it was 325 mg of “aspirin” // 5 mg Codine".
- Noted,
-- Butalbital was prescribed to treat pain. Secondary to the cluster migraine headaches.
- Noted,
-- Butalbital wasn't to "treat" cause of migraines.
--- Ie the brain + cns dmg systemic of Interferon.
- 1st Appt Covered // Summary (13):
- Treatments - Butalbital
- Noted,
-- How Butalbital genuinely did help.
-- Reduce stress on my body. 
-- Physiologically, to noticeable effects:
--- Lessened strain on body, fr pain.
-- Strain was very noticeable pre-Butalbital treatments.
-- Strain's absence was very noticeable on-Butalbital treatments. 
- 1st Appt Covered // Summary (14):
- Treatments - Butalbital
- Noted,
-- Directed to take at night.  
--- To "attempt" lessening unavoidable effect on Stimulant Therapy.
---- Ie w/Stimulant's efficacy in treatment.
---- Ie inb4 promoting wakefulness.
---- Ie inb4 raising seizure threshold.
- 1st Appt Covered // Summary (15):
- Treatments - Butalbital
- Directions:
-- Nightly,
--- Nightly b/c = sleeping on Butalbital.
--- Lessening tension/physiological exhaustion. By alleviating pain.
--- Ie knocked me out (narcolepsy). 
-- As needed,
--- On days, when induced Cluster Migraine Headaches.
-- Minimum dosage,
--- Min 1 dose per 72 hr interval. 
--- Note, 
--- Always maintained this minimum dosing req.
--- As dangerous Barbiturate related withdrawal can occur. From not adhering to min.
--- Note,
---- More dangerous to me, specifically. 
---- B/c physiological strain from withdrawal.
--- As, the withdrawal specifically, was extremely taxing on me b/c the Narcolepsy.
---- Lowering seizure threshold. 
---- Effecting // nullifying Stimulant Therapy treatment.
---- During the actualized period of induced Butalbital withdrawal. 
---- During approx March/April 2016.
---- Was extremely difficult -> 
---- Inhibited me from going to school. 
----- For period no less than 30 days.
- 1st Appt Covered // Summary (16):
- Treatments - Butalbital
--- Noted,
---- No-relationship b/w migraine treatment, and, treating the "sleeping" w/Narcolepsy.
- 1st Appt Covered // Summary (17):
- Cluster Migraine Headaches
- Noted,
-- Induced by light, sound, vibration.
- 1st Appt Covered // Summary (18):
- Cluster Migraine Headaches
- Noted,
-- Light:
--- Alleviated by transition prescription lenses for my glasses.
---- In non-controllable environment. 
--- Solved by mitigation of bright environment.
---- Ie a controllable environment, light set to accommodating me.
- 1st Appt Covered // Summary (19):
- Cluster Migraine Headaches
- Noted,
-- Sound: 
-- THE largest uncontrollable factor. IN inducing migraines. 
-- Past abuse by:
--- Mother (screaming/yelling)
--- Father (likewise same)
-- Uncontrollable enviro sounds:
--- Vacuuming
--- Outside "yard work"/"landscaping"/"road" work.
-- Semi-controllable "normal" enviro sounds:
--- Associated with any High School Environment.
- 1st Appt Covered // Summary (20):
- Cluster Migraine Headaches
- Noted,
-- When I had the migraine, this medication was key. 
-- To, overall treatment holistically. 
-- By, lessening strain on body.
- 1st Appt Covered // Summary (21):
- Cluster Migraine Headaches
- Noted,
-- Butalbital did/does lower efficacy of Stimulant Therapy.
--- Is a huge issue.
--- That cannot be allowable regarding dangers of ineffective Narcolepsy treatment.
---- Seizures/and or death by fall risk.
- 1st Appt Covered // Summary (22):
- Past Tests / Seizures
- Noted,
-- Recent seizure "grand mal":
--- 2020-02 or 2020-03
- 1st Appt Covered // Summary (23):
- Future Tests / Seizures
- Noted,
-- Seizure study planned admittance to hospital
-- Is a 1 wk monitoring hosp admitted period.
-- For seizure + epilepsy monitoring, and documenting. 
- 1st Appt Covered // Summary (24):
- Future Tests / Seizures
- Noted,
-- See,
--- Lack thereof, w/acquiring continuation this care.
-- Tbd on,
--- When? // Where?
- 1st Appt Covered // Summary (25):
- Future Tests / Seizures
- Noted,
-- Ie UMC does not have "their" in house facility up and running.
--- Is planned, not actualized.
- 1st Appt Covered // Summary (26):
- Future Tests / Seizures
- Noted,
-- Doctor said, they would be trying to get it up and running.
-- Doctor said, CHNO does have their facility up and running.
--- That she is employed/faculty at CHNO too.
--- Sparse appointments scheduled at CHNO, few times a yr.
---- 1 // 2 per yr.
-- Doctor said, she has to be physically at CHNO. 
--- To get orders in for CHNO seizure monitoring facility.
- 1st Appt Covered // Summary (25):
- Future Tests / Seizures
- Noted,
-- Doctor said, wanted to coordinate w/Dr. Olejniczak.
--- Prior to scheduling me at CHNO.
-- Also, to coordinate my care w/seizures.
-- Also, doctor noted,
--- The VA hospital does have their facility up and running.
--- Mentioned by Dr. Olejniczak too. At last appointment.
- 1st Appt Covered // Summary (27):
- Records UMC - Adderall Entry
- Noted,
- We spoke about the Adderall 40mg in their system.
-- She noted that it does in fact have “two”? listings. 
-- For, current script of 40 mg TiD.
-- Within, UMC’s sys.
-- Note: 
--- One (1 / 2) of the Two (2 / 2) described entries.
--- Has 40 mg only listed as a note, on the previous 30 mg TiD listing itself.
- 1st Appt Covered // Summary (28):
- Records UMC - Adderall Initial Entry
- Noted,
-- Entered by nurse 
-- On prev 30 mg entry.
- 1st Appt Covered // Summary (29):
- Records UMC - Adderall Initial Entry
- Noted,
-- Had // Saw // Witnessed
--- Nurse enter this in person.
--- She tried to change, but, could not.
--- She said, "required the original physician to edit completely."
-- On,
--- 2020-08-19 8:15 am
--- ENT
--- Dr. Pelaez appt
--- For hearing testing
--- For ear compaction 6 month treatment
- 1st Appt Covered // Summary (30):
- UMC - ENT
- Noted,
-- Some hearing dmg: 
--- Reinforced by one (1 / 2) of the Audiologist's reports. 
-- No dmg: 
--- Verbally Expressed
--- On date of, by Audiologist to me. 
--- Lessening above report's (1 / 2) confirmation. 
-- No dmg: 
--- Reinforced by the other report's (2 / 2) confirmation. 
--- Of, "no dmg"
-- See, 
--- How mentioned on query. 
--- To Audiologist + 2 trainee/resident witnesses.
--- How my Mother would (2016):
---- Yell in my ear. 
---- As, I was immobilized in a state of sleep paralysis.
---- Unable to defend myself against noise, nor mitigate the induction of Cluster Migraine Headache.
- 1st Appt Covered // Summary (31):
- Records UMC - Adderall Duplicate Entry "Fix"
- Noted,
-- Dr. Monica Noya Santana also could not fix this.
-- Seems as tho another "issue". IT?
- 1st Appt Covered // Summary (32):
- Records UMC - Adderall Duplicate Entry "Fix"
- Noted,
-- Request Dr. Santana attempt again.
-- On,
--- Scheduled 2020-09-08 2:00 pm. 
--- Phone appointment.
-- To, 
--- Change erred UMC medication entry.
--- Adderall 30 mg TiD -> To 40 mg TiD
-- From current “just noted” on another entry.
-- To, its own up-to-date entry.
- 1st Appt Covered // Summary (32):
- Neuropathy? + Seizures?
- Noted, 
-- Temperature within the last winter fall/winter/spring 2020.
--- Ie lacking proper heating.
-- Increased frequency and incidence of neuropathic symptoms.
--- greatly/extremely 
-- Increased frequency and incidence of seizures induction.
--- greatly/extremely
---- Relation to neuropathy lowering seizure threshold?
---- Due to physiological burden of the constant pain?
---- Due to some sort of stimulation? Of nervous sys inducing seizures?
- 1st Appt Covered // Summary (33):
- Neuropathy? + Seizures?
- Noted, 
-- No ability to go downstairs to eat. 
-- See, 
--- Above increased seizure incidence.
-- See, 
--- B/c constant issues with the freezing cold.
-- See, 
--- B/c heat was not properly triggered to come on.
- 1st Appt Covered // Summary (34):
- Neuropathy? + Seizures?
- Noted, 
-- See, 
--- Temperature data project.
--- Data on household rooms. 
--- During relevant timeframe.
-- See,
--- Wherein air conditioning was set too cold.
--- Around,
---- Late Spring 
----- Late April 2019
----- Initial Air Install // Sys Changes
---- Summer (2019)
----- Set too cold (user error)
---- Early-Fall (2019)
----- Set too cold (user error)
---- Mid-Fall (2019)
----- Set too cold (user error)
-- See, 
--- Low recorded Temperature.
--- Got to frequently low 60s f.
--- Got to frequently mid 55s f
-- See, causes:
-- Forced by my mother’s delusions.
-- My own ignorance of our home’s:
--- Airflow
--- Temperature issues.
-- See, changes:
--- Ignorance is solved.
--- I gained knowledge of temp issues w/household.
--- Ie, my, ignorance no longer inhibits regulation of temperature.
- 1st Appt Covered // Summary (34):
- Neuropathy? + Seizures?
- Noted,
- See,
-- Gaining a heater/heater in my room.
-- Circa 2019-12-00
-- Helped a lot. 
--- Now that knowledge on its proper usage is held.
-- Even tho,
--- Heater induces Cluster Migraine Headaches.
- See, 
-- Heater "overworking" itself.
- See, 
-- Heater + humidity + overworking // strain.
-- Humidity is likely factor. 
-- In heater's rate of stress build-up // tolerance.
- 1st Appt Covered // Summary (35):
- Neuropathy? + Seizures?
- Noted,
-- See,
--- Spoke of all this in relation to my neuropathy.



-------------------------
2020-08-28 Notes (2)
See below:
- For reference/writeup.
- On what I sent parents in text message.
-- Mark Neal Bodin
-- Linda Darlene Rea Bodin
- Surrounding my 2nd Phone appointment.
-- Scheduled for 2020-09-08 2:00 pm.
2020-09-08 2:00 pm
Dr. Monica Noya Santana
September 9th, 2020 2:00 pm
- Phone appointment follow-up
- Setting up "things" w/doctor.
-- History/Research/Follow-up w/MD Anderson (treatment etc.)
- The doctor wants to convene with her team. On 2020-09-08.
-- W/phone appointment.
- Note:
-- Ensure that it is quiet on that day.
-- Ie do not schedule maintenance for 2020-09-08.
--- Regarding household
- Doctor requires:
-- Time to perform in-depth research.
-- Into my medical history with "her" team.
--- Of (I assume residents/etc.).
- Ensuring no issues occur w/my seizure threshold.
- Ensuring no issues occur w/narcolepsy without cataplexy.
- Ensuring no issues occur w/seizure threshold being "lowered".
-- Regarding the Narcolepsy without Cataplexy.
--- Ie reducing the efficacy of current Stimulant Therapy.
--- A noted concern.
---- B/c of previously used Cluster Migraine Headaches treatment.
---- Pre-diagnosis of Narcolepsy without Cataplexy.
- Potential treatments for my Cluster Migraine Headaches.
- Discussed (ie new treatments):
-- Since the previous specialist last seen in 2016~.
-- 5 years, new types of treatments w/injections.
-- That treat frequency and incidence of Cluster Migraine Headaches.
-- Instead of just treating pain secondary to cause of migraines.
--- As was "exhausted" as an option back in 2016~. B/c of my Narcolepsy.
- Spoke to Doctor briefly of new injections.
-- Few I recognized as (from FDA) are current trials.
-- Doctor will get back to me after "in-depth research". On availability of these.
-- I believe likely one would. As my insurance sent me info about it in the mail.
--- Ie to ask my doctor about it. B/c its available in our state, or something.
Note (1):
- ASSUME
- Within next month, or so. I'll be required to go to UMC.
- For in-person w/neurology.
- For scans, etc.
- Before treatment can proceed.
Note (2):
- FYI, was told by Dr. Gonzales at last appt.
-- 2020-08-27 8:45 am
- He'd need me to get an MRI. Around next appt w/him.
-- 2020-11-19 8:30 am