TGA Project
for everything Transient Global Amnesia
November 2019
Welcome,
Thank you for taking the time to enroll with the CoRDS Registry. This module will ask you questions specific to your first TGA diagnosis unless otherwise stated. The questions below were developed in partnership with Transient Global Amnesia Project. Please note, this module:
-
Takes approximately 30 minutes to complete
-
Will refer to the person with the diagnosis as “the participant”
-
Can be updated at any time by logging in to the CoRDS online portal or by contacting CoRDS personnel
If you have any questions while completing this form, please contact CoRDS at (877) 658-9192 during business hours, 8:30 am-5:00 pm (CST) Monday through Friday. If you need assistance after business hours, please leave a message or email cords@sanfordhealth.org.
Permission
I give permission to CoRDS to provide my information that may or may not be identifiable to the following Patient Advocacy Group (PAG) for non-research purposes. Not giving permission will not affect your TGA enrollment.
☐ Transient Global Amnesia Project ☐ I do not give my permission
Index
The TGA Patient Data Registry has five sections based on time frames and multiple episodes. Everyone does the first four sections: A - D. Those TGA patients who have experienced more than one TGA will also complete section E and focus on their most severe episode.
A. Participant’s First and/or Only TGA Episode’s Details
B. Prior to the Participant’s First TGA Episode
C. After the Participant’s First or Only TGA Episode
D. Current Status of Participant
E. For Participants with Multiple TGA Episodes
Page 1 of 6
SAMPLE
SAMPLE
SPECIAL NOTE: Smartphone format at this time messes up questionnaire format
A. Participant’s First and/or Only TGA Episode’s Details
1. How many hours did the participant’s first TGA last? _______________________________
2. Who witnessed the participant’s first TGA episode?
☐ Spouse ☐ Other family member ☐ Co-worker
☐ Stranger ☐ No one ☐ Other person
If “Other person”, please specify: _______________________________________________
3. Which of these was the participant’s triggering event for his or her first TGA episode?
☐ Extremely bad news ☐ Cold water immersion ☐ Warm water immersion
☐ Stress ☐ Sexual activity ☐ Dehydration
☐ Extreme exercise routine ☐ Migraine ☐ Unknown
☐ None of the above ☐ Other
If “Other”, please specify: _____________________________________________________
4. Did an ambulance transport the participant to the hospital?
☐ Yes ☐ Did not go to hospital ☐ Private car
5. What care was provided in the ambulance?
☐ Stroke protocol ☐ Oxygen ☐ IV fluids
☐ Vitals and observation ☐ Elevated extremities ☐ N/A
☐ Other ☐ Released to see a primary care provider
If “Other”, please specify: _____________________________________________________
6. What care was provided in the emergency room?
☐ Stroke protocol ☐ Vitals and observation ☐ Oxygen
☐ EKG ☐ EEG ☐ Blood work-up
☐ Neurological exam ☐ Cognitive testing ☐ MRI
☐ Went to primary care provider ☐ CT scan ☐ Other ☐ N/A
If “Other”, please specify: _____________________________________________________
7. Did the medical provider in the Emergency Room prescribe any medications or order an IV?
☐ Yes ☐ No ☐ N/A
If “Yes”, which type of medication was prescribed? _________________________________
8. Was a stroke protocol followed when the participant arrived at the medical facility?
☐ Yes ☐ No ☐ Unsure ☐ N/A
9. Was the participant experiencing any of the following at the time of his or her first TGA?
☐ Relaxing at home ☐ Had just woke up ☐ Had temperature increase
☐ Around house doing chores ☐ At work doing usual tasks ☐ Other
If “Other”, please specify: _____________________________________________________
10. During the first TGA episode, did the participant keep asking the same 3 or 4 questions every 3 to 5 minutes?
☐ Yes ☐ No ☐ Unsure
11. Did the participant revert back in time, during his or her first TGA episode?
☐ Yes ☐ No ☐ Unsure
12. How much of the participant’s short-term memory was affected 6 months after his or her first
TGA?
☐ Moderate change noted by others
☐ Minimal change only noticed by participant
☐ No change
13. How much of the participant’s long-term memory was affected 6 months after his or her first
TGA?
☐ Moderate change noted by others
☐ Minimal change only noticed by the participant
☐ No change
14. If at all, how far back was the participant’s long-term memory erased?
☐ Days ☐ Weeks ☐ Unsure
☐ Months ☐ Years ☐ N/A
15. Does the participant believe that one or more of their medications led to his or her TGA?
☐ Yes ☐ No ☐ Unsure
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B. Prior to the Participant’s First TGA Episode
16. Just before the participant’s first TGA, did he or she sense a change was coming on?
☐ Yes ☐ No ☐ Unsure
17. Just before the participant’s first TGA, did the witness realize something was wrong?
☐ Yes ☐ No ☐ Unsure
18. In the beginning of the participant’s first TGA did he or she know where he or she was?
☐ Yes ☐ No ☐ Unsure
19. As the participant’s TGA faded, did he or she come back to reality slowly and gradually?
☐ Yes ☐ No ☐ Unsure
20. What was the participant’s medical history prior to his or her first TGA episode? Select all that
apply.
☐ Anxiety ☐ Memory issues ☐ Balance issues
☐ Migraines ☐ Cancer ☐ Severe allergies
☐ Deep vein thrombosis (DVT) ☐ Depression ☐ Sleep apnea
☐ Heart Attack ☐ Stroke ☐ Hepatitis
☐ Unusual pressure in head ☐ High blood pressure ☐ High cholesterol
☐ More than usual number of headaches ☐ Normal ☐ Other
If “Other”, please specify: _____________________________________________________
21. Had the participant taken any medication(s) for high blood pressure prior to his or her first
TGA?
☐ Yes ☐ No ☐ N/A
If “Yes”, please list medication(s): _______________________________________________
22. Had the participant taken any medication(s) for high cholesterol prior to his or her first TGA?
☐ Yes ☐ No ☐ N/A
If “Yes”, please list medication(s): _______________________________________________
23. Had the participant taken any medication(s) for depression prior to his or her first TGA?
☐ Yes ☐ No ☐ N/A
If “Yes”, please list medication(s): _______________________________________________
24. Has the participant taken any medication(s) for seizures prior to his or her TGA?
☐ Yes ☐ No ☐ N/A
If “Yes”, please list medication(s): _______________________________________________
25. Were daily vitamins taken the day prior to his or her first TGA?
☐ Yes ☐ No ☐ N/A
26. Were fish oil tablets taken the day prior to his or her first TGA?
☐ Yes ☐ No ☐ N/A
27. Were any over the counter pain medications took the day prior to his or her first TGA?
☐ Yes ☐ No ☐ N/A
If “Yes”, please list medication(s): _______________________________________________
28. Had the participant experienced any of the following the day prior to his or her first TGA?
Please select one option per line.
Dealt with a stressful situation
☐ Yes
☐ No
☐ Unsure
Had heavy perspiration
☐ Yes
☐ No
☐ Unsure
Had muscular fatigue
☐ Yes
☐ No
☐ Unsure
Felt dehydrated
☐ Yes
☐ No
☐ Unsure
Felt that blood sugar might be low
☐ Yes
☐ No
☐ Unsure
Felt that electrolytes might be low
☐ Yes
☐ No
☐ Unsure
Overstimulated by TV, social media, etc.
☐ Yes
☐ No
☐ Unsure
Felt a jolt of adrenaline
☐ Yes
☐ No
☐ Unsure
Dealt with bad news
☐ Yes
☐ No
☐ Unsure
Hyperactivity
☐ Yes
☐ No
☐ Unsure
Had more caffeine than usual
☐ Yes
☐ No
☐ Unsure
Was worried about high blood pressure
☐ Yes
☐ No
☐ Unsure
Was worried about high cholesterol
☐ Yes
☐ No
☐ Unsure
If “Other”, please specify: _____________________________________________________
29. Did the participant experience any of the following the night prior to his or her first TGA?
Please select one option per line.
Had poor night's sleep
☐ Yes
☐ No
☐ Unsure
Did the participant have an empty stomach?
☐ Yes
☐ No
☐ Unsure
Had vivid dreams
☐ Yes
☐ No
☐ Unsure
Was dealing with bad news
☐ Yes
☐ No
☐ Unsure
Was emotionally upset
☐ Yes
☐ No
☐ Unsure
If “Other”, please specify: _____________________________________________________
30. Did the participant use a sleep apnea machine the night prior to her or her first TGA?
☐ Yes ☐ No ☐ N/A
31. Which of the following did the participant partake in the morning of his or her first TGA?
Had more caffeine than usual
☐ Yes
☐ No
☐ Unsure
Smoked more cigarettes than usual, smoked pot or vaped
☐ Yes
☐ No
☐ Unsure
Did the participant have breakfast?
☐ Yes
☐ No
☐ Unsure
If “Other”, please specify: _____________________________________________________
32. Did the participant experience any of the following just prior to his or her first TGA?
Dehydration
☐ Yes
☐ No
☐ Unsure
An empty stomach?
☐ Yes
☐ No
☐ Unsure
Heavy perspiration
☐ Yes
☐ No
☐ Unsure
Believe their blood sugar might be low
☐ Yes
☐ No
☐ Unsure
Believe their electrolytes might be low
☐ Yes
☐ No
☐ Unsure
Muscular fatigue
☐ Yes
☐ No
☐ Unsure
Hyperactivity
☐ Yes
☐ No
☐ Unsure
More caffeine than usual
☐ Yes
☐ No
☐ Unsure
Smoked a cigarette, pot, or vaped
☐ Yes
☐ No
☐ Unsure
Slept with a bent neck
☐ Yes
☐ No
☐ Unsure
Slept with an arm overhead
☐ Yes
☐ No
☐ Unsure
Deal with bad news
☐ Yes
☐ No
☐ Unsure
Emotionally upset
☐ Yes
☐ No
☐ Unsure
If “Other”, please specify: _____________________________________________________
Page 3 of 6
C. After the Participant’s First or Only TGA Episode
33. What was the participant’s medical history after his or her first TGA episode? Select all that
apply.
☐ Anxiety ☐ Memory issues ☐ Balance issues
☐ Migraines ☐ Cancer ☐ Severe allergies
☐ Deep vein thrombosis (DVT) ☐ Depression ☐ Sleep apnea
☐ Heart attack ☐ Stroke ☐ Hepatitis
☐ Unusual pressure in head ☐ High blood pressure ☐ High cholesterol
☐ More than usual number of headaches ☐ Normal ☐ Other
If “Other”, please specify: ___________________________________________________
34. Did the participant’s TGA change his or her outlook on life?
☐ Yes ☐ No ☐ Unsure
35. Is the participant concerned of a repeat TGA episode?
☐ Yes ☐ No ☐ Unsure
36. Rank these topics the participant may face with 1 being of the least concern and 10 being of
the most concern. Please use a number only once.
Blindness
☐1 ☐2 ☐3 ☐4 ☐5 ☐6 ☐7 ☐8 ☐9 ☐10
Going deaf or not being able to speak
☐1 ☐2 ☐3 ☐4 ☐5 ☐6 ☐7 ☐8 ☐9 ☐10
Cancer
☐1 ☐2 ☐3 ☐4 ☐5 ☐6 ☐7 ☐8 ☐9 ☐10
Heart attack
☐1 ☐2 ☐3 ☐4 ☐5 ☐6 ☐7 ☐8 ☐9 ☐10
Stroke
☐1 ☐2 ☐3 ☐4 ☐5 ☐6 ☐7 ☐8 ☐9 ☐10
Participant’s death
☐1 ☐2 ☐3 ☐4 ☐5 ☐6 ☐7 ☐8 ☐9 ☐10
Death of participant’s spouse
☐1 ☐2 ☐3 ☐4 ☐5 ☐6 ☐7 ☐8 ☐9 ☐10
Death of one of the participant’s children
☐1 ☐2 ☐3 ☐4 ☐5 ☐6 ☐7 ☐8 ☐9 ☐10
Alzheimer’s Disease
☐1 ☐2 ☐3 ☐4 ☐5 ☐6 ☐7 ☐8 ☐9 ☐10
Another TGA
☐1 ☐2 ☐3 ☐4 ☐5 ☐6 ☐7 ☐8 ☐9 ☐10
37. Has the participant experienced any new behaviors since his or her first TGA? Please select
one option per line.
At times may speak excessively
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Blank spots when trying to remember the day
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Can count money, but does not remember the amount
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Can’t remember jokes, songs, etc.
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Can’t remember verbal details or direction
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Can’t shop without a list (Even when it is just 2-3 things)
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Concerned about getting lost when driving
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Concerned more about safety during driving
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Compulsive new behaviors
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Difficulty concentrating when reading
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Difficulty finishing large projects
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Difficulty finishing small projects
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Difficulty focusing on card and board games
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Difficulty sorting through bills
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Feeling frustrated with the “New Me”
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Forget where objects and lists were placed
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Go hours without talking
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Hand-eye coordination has become more difficult
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Having daily notes to remember things (i.e. use sticky notes)
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Has difficulty recognizing people from the past
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Has difficulty remembering past events
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Less restful sleep
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Little tolerance to stress
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Little to no interest in sex
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Surprised that you would ever have to see an advanced provider for TGA (psychiatrist,
physician, psychologist, etc.)
☐ Never
☐ Seldom
☐ Occasionally
☐Often
☐ Daily
Multiple bathroom breaks at nighttime
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Needs to take mental breaks when thinking about things
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Overwhelmed when trying to recall daily memories
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Quickly irritated
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Play “thinking games” on technology to enhance memory
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Repeating speech when talking with other people
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Stare at objects for long periods of time
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Stop mid-sentence with loss of thought
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Talking out loud to one’s self
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Updating family on memory issues
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
The amount of time watching television has decreased
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
The amount of time watching television has increased
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Whistling, Tapping Fingers, Jiggling Feet, Humming, etc.
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Other : _______________
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Other : _______________
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
Other : _______________
☐ Never
☐ Seldom
☐ Occasionally
☐ Often
☐ Daily
38. Was the participant satisfied with the emergency room or medical provider’s discharge
treatment plan for his or her first TGA episode?
☐ Yes ☐ No ☐ Partially ☐ N/A
If “Partially”, please specify: __________________________________________________
39. Was the participant satisfied with the primary medical care provider's follow up care?
☐ Yes ☐ No ☐ Partially ☐ N/A
If “Partially”, please specify: __________________________________________________
40. Did the primary medical care provider or the emergency room doctor refer the participant to
a neurologist?
☐ Yes ☐ No ☐ Unsure ☐ N/A
41. Was the participant satisfied with the neurologist’s follow up care?
☐ Yes ☐ No ☐ Partially ☐ N/A
If “Partially”, please specify: __________________________________________________
42. Was the participant referred to any other specialist(s)? Select all that apply.
☐ Chiropractor ☐ Neuro-Psychologist ☐ General Psychologist
☐ Psychiatrist ☐ Holistic Specialist ☐ Hypnosis Specialist
☐ None of the above ☐ N/A ☐ Other
If “Other”, please specify: ___________________________________________________
43. Was the participant satisfied with the other specialists’ evaluations?
☐ Yes ☐ No ☐ Partially ☐ N/A
If “Partially”, please specify: __________________________________________________
Page 4 of 6
44. What is the current neurological state of the participant? Select all that apply.
☐ Anxiety ☐ Depression
☐ Difficulty processing thoughts ☐ Increase in stress level
☐ Long term memory issues ☐ Migraines
☐ Multi-tasking issues ☐ Short term memory issues
☐ Unexpected verbal agitation ☐ Visual imagery needed to remember things
☐ No symptoms ☐ Normal ☐ Other
If “Other”, please specify: _____________________________________________________
45. In preparation for another TGA, has the participant discussed going to the hospital again?
☐ Yes ☐ No
46. In preparation for another TGA, has the participant written out a treatment plan for himself or herself?
☐ Yes ☐ No
47. Has the participant been told or advised they could lose his or her driver’s license because of the Transient Global Amnesia diagnosis?
☐ Yes ☐ No
48. If the participant applied for insurance coverage, was he or she accepted but with increased premiums because of the TGA episode?
☐ Yes ☐ No
49. As a result of the participant’s TGA experience(s), has the participant been denied life insurance or long-term care insurance?
☐ Yes ☐ No
50. Has the participant worried he or she could lose their employment if the TGA diagnosis was discovered at work?
☐ Yes ☐ No
51. Additional comments or concerns from those participants who have had only one TGA episode:
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
Page 5 of 6
E. For Participants with Multiple TGA Episodes
52. What is the participant’s total number of TGA episodes?
☐ 1 ☐ 2 ☐ 3 ☐ 4 ☐ 5 ☐ more than 5
List how many episodes if greater than 5: ________________________________________
53. How long in hours was the participant’s most severe TGA that is being reported in this
section? ___________________________________________________________________
54. Which of these was the participant’s triggering event for his or her most severe TGA episode?
☐ Extremely bad news ☐ Cold water immersion ☐ Warm water immersion
☐ Stress ☐ Sexual activity ☐ Dehydration
☐ Extreme exercise routine ☐ Migraine ☐ Unknown
☐ None of the above ☐ Other
If “Other”, please specify: _____________________________________________________
55. How much of the participant’s short-term memory was affected 6 months after his or her most severe TGA?
☐ Moderate change noted by others
☐ Minimal change only noticed by the participant
☐ No change
56. How much of the participant’s long-term memory was affected 6 months after his or her most severe TGA?
☐ Moderate change noted by others
☐ Minimal change only noticed by the participant
☐ No change
57. How far back was the participant’s long-term memory erased after his or her most severe TGA?
☐ Days ☐ Weeks ☐ Unsure
☐ Months ☐ Years ☐ N/A
58. Does the participant believe that one or more of his or her medications led to their most severe TGA?
☐ Yes ☐ No ☐ Unsure
59. Did the participant during his or her most severe TGA episode keep asking the same 3 or 4 questions every 3 to 5 minutes?
☐ Yes ☐ No ☐ Unsure
60. Did the participant revert back in time, during his or her most severe TGA episode?
☐ Yes ☐ No ☐ Unsure
61. Just before the participant’s most severe TGA, did he or she sense a change was coming on?
☐ Yes ☐ No ☐ Unsure
62. Just before the participant’s most severe TGA, did the witness realize something was wrong?
☐ Yes ☐ No ☐ Unsure
63. In the beginning of the participant’s most severe TGA did he or she know where he or she was?
☐ Yes ☐ No ☐ Unsure
64. As the participant’s most severe TGA faded, did he or she come back to reality slowly and gradually?
☐ Yes ☐ No ☐ Unsure
65. Additional comments or concerns from those participants who have had multiple TGA episodes:
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
Thank you for your time and consideration in giving answers that may help future research!
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