The story of Richard
Just what is this ‘TGA’ diagnosis that so few know about? Odds are good that many readers of this article have not heard of this rare neurological condition, much less know someone who has experienced it. Even the Rare Disease Day 2018 website does not list Transient Global Amnesia (TGA). We beg to differ. Ours is not as benign as the medical field would lead us to believe.
The Mayo Clinic gives the following TGA definition: transient global amnesia is a sudden, temporary episode of memory loss that can’t be attributed to a more common neurological condition, such as epilepsy or stroke. During an episode of transient global amnesia, your recall of recent events simply vanishes, so you can’t remember where you are or how you got there. In addition, you may not remember anything about what’s happening in the here and now. Consequently, you may keep repeating the same questions because you don’t remember the answers you’ve just been given. You may also draw a blank when asked to remember things that happened a day, a month, or even a year ago.”[1]
The criteria for diagnosis of TGA consists of:
Sudden onset of memory loss, verified by a witness
Retention of personal identity despite memory loss
Normal cognition, such as the ability to recognize and name familiar objects and to follow simple directions
Absence of signs indicating damage to a particular area of the brain, such as limb paralysis, involuntary movement, or impaired word recognition
Duration of no more than 24 hours and generally shorter
Gradual return of memory
No evidence of seizures during the period of amnesia
No history of active epilepsy
Transient global amnesia was first identified by MB Bender in 1956[2]. A case study by Hodges and Warlow in 1990 noted that over one thousand TGA cases had been reported, yet its etiology remained unknown.[3] Even now, almost two decades later, TGA is the mysterious diagnosis given when testing rules out all other possible causes for short-term amnestic events. Patients are told by their clinicians not to worry about this benign condition because it rarely, if ever, reoccurs. However, dramatic loss of memory for hours…with no explanation of why…leaves sufferers with anxiety nonetheless.
When patients seek answers for their amnesia online, many find their way to two Facebook groups created by those who have experienced it: “Transient Global Amnesia (TGA)”[4] and “I know what transient global amnesia means…and saw one during acute stage”[5]. It is a great comfort to meet others who have received the same diagnosis. Now they have an understanding audience to hear their TGA stories; commonalities are sought among members’ stories, anxieties are sympathetically eased and helpful advice is shared from members’ own experiences. There are approximately 585 members of the combined two TGA Facebook groups.
This past September, the need was seen for a compendium of TGA facts to be created for newcomers to the groups. Volunteers were sought and 152 Facebook members from around the world submitted their names to participate in the design of an online “TGA Clubhouse” where members can visit and find rooms permanently “furnished” with TGA information, personal testimonies, articles, FAQs, terms, surveys, polls, and even humorous cartoons. Recently a world map (see Figure 1) for weekly updates was added of members’ and guests’ locations, both in the U.S. and around the world. A current World Map of these TGA Volunteers can be found at https://tgaproject2017.wixsite.com/tga2018/team-tga-world-map[6] This collaborative effort became the TGA Project 2017-2018.
Figure 1
Our TGA Roll Call of 152 as of January 29, 2018: US 99, UK 25, Australia 9, Canada 6, France 2, New Zealand 2, Mexico 2 and these countries 1 each: Belgium, Iceland, Indonesia, Netherlands, South Africa, Sweden, and Turkey.
Compared with support groups for well-known and widespread diseases/conditions like cancer and diabetes, our TGA patient numbers are admittedly minuscule. However, we are just as fervent in our search to make sense of our diagnosis and maybe more so, since very little is known about our condition, even by the providers we have seen. While not life threatening, TGA can be life changing, as I and others can unfortunately testify. Many of us live with the anxiety of “waiting for the other shoe to drop”. Indeed, despite assurances otherwise, a significant number of our members have had more than one sudden amnestic event, sometime months apart, sometime years apart. We want to make sense of our unsettling TGA diagnosis, so we can live our lives without fear of another large block of time being lost. “Should I drive again?” wonders one member, whose TGA struck while she was driving, causing her to crash her car. “Should I babysit my grandchildren again?” wonders another member, who had hours of memory loss while home alone with her precious little ones. These are the lifestyle questions that haunt TGA sufferers, because there is a chance that transient global amnesia will reoccur plus the daily new quirks we deal with.
Our medical providers, after checking us out thoroughly and finding no cause for our transient global amnesia, smilingly tell us that no harm has been done: we will feel back to normal in a day or two, our memories will return, and we will almost assuredly never have another spell in our lifetime. Over and done with! Our families are relieved and we certainly wish to be, but as time goes on we realize that physical and mental changes remain. For instance, it has been over four years since my TGA, but I still experience continuing short-term memory issues, mild cognitive impairment, anxiety, depression, odd little quirks, sleep problems, and concerns about developing Parkinson’s and/or Alzheimer’s. Members of the TGA Facebook groups echo and validate my feelings by posting testimonies of strikingly similar residual “fallout” from their TGAs. Members also report migraines, a strong sense of unease, malaise, inability to multitask as before, being easily overstimulated in crowds or busy situations, sensitivity to strong sunlight or halogen lights at night, panic attacks, mental fogginess (quirks), and memory issues for months to years afterwards.
There seems to be a variety of triggers for TGA: strong physical exertion, immersion in cold water, extreme stress, the Valsalva maneuver, migraines, and sexual intercourse/coital headache, to name a few. But what perplexes us is why would these triggers cause a TGA for us when people all over the world have experienced the same exertion/stress/etc. on any random day…when we ourselves have experienced them before…but no sudden amnesia event was the result? Why after age 50 (another commonality) have we been struck? Should I avoid all those possible triggers? What if none of those triggers applied in my case, so I don’t know what to avoid? Members of the TGA Facebook groups continually search for answers in their posts: has anyone else in your family had a TGA? (possible genetic cause?) Has anyone else just started on such-and-such drug right before your TGA? (possible drug reaction?) I remember being dehydrated and thirsty right before my TGA…anyone else? (lifestyle cause?) We are trying to find answers…we have SO many questions!
Because most folks do not have “Transient Global Amnesia” written in their medical charts, the few of us with that dubious distinction receive little notice from researchers and none from big pharmaceutical companies. What is there to research when all testing (MRI, EKG, EEG, CT scan, bloodwork, etc.) shows normal results and when we can’t even remember what we experienced? Why bother to design a drug for a medical event that has no etiology and, anyway, happens only ‘once in a lifetime’? Without having major support from the medical community, we TGA sufferers must draw strength from each other, and so we continue to welcome more and more new members to “the club no one wants to join”.
That’s why our team of Volunteers is donating their time and talents to build the TGA Clubhouse. We collaborate on design and content, support new patients, search new postings for helpful information or testimonies to include, follow some obscure research, write and edit new articles, etc. Volunteers are from all over the map and thus can be available virtually around the clock. There are no dues or fees, no fundraising or corporate sponsorship for the TGA Project. We hope to continue to gather more statistics, more evidence, and more reasons why this rare and unique neurological condition continues to strike so few in each new generation. Our Clubhouse is always open and full of advice and information for new TGA patients and their families. We are currently applying to attend select national mental health conferences in 2018 as exhibitors. We have no idea if that will happen, how we would pay to attend, how we will get there, and what we would be expected to display. At the moment, we just have our own personal knowledge, our sense of humor (Fig. 2), and our mission to help the next generation of TGA patients.
Thank you for taking time to read our story. We are looking for a medical provider (or two) in the fields of Neurology and/or Psychiatry with an interest in Transient Global Amnesia. If you would be willing to recognize our TGA Project 2017-2018 and offer support of any kind, we would be very grateful. Please visit us at: https://tgaproject2017.wixsite.com/tga2018
Figure 2. Three of our favorite cartoons and our TGA logo[7]
Author’s Biography:
Richard Holl is the originator and web administrator for TGA Project 2017-2018. His transient global amnesia (TGA) event May 4, 2013 set into motion his medical history up to date that lead to the TGA Project’s birth September 18, 2017. When he is not glued to his lap top, he spends his time with his wife of 36 years, their four adult children, two daughter-in-laws and one adorable 1 year old granddaughter. He has just finished revising the TGA Clubhouse website for its 2018 Edition. Being 62 years old, medically disabled and internet illiterate has made web design quite a challenge. Add to that TGA Project has a zero budget, so web design by Wix.com had to be learned by an old dog who cannot ‘remember’ the last time he got off the porch. Therefore, he also learned how to use social media to pull together a TGA Volunteer base of 152 worldwide TGA patients to collaborate and edit the furnishings of the TGA Clubhouse at www.tgaproject2017.wixsite.com/clubhouse . He likes to joke that being abducted by aliens was one of the highlights of his life; however, he does not ‘remember’ the three days he was in the hospital. And four years later, his short-term memory has developed into Mild Cognitive Impairment with depression, anxiety and ADHD. His psychiatrist suggested a project. Model trains and honey do lists around the house were not helping. Nevertheless, TGA Project 2017-2018 has given new focus while providing support, information and compassion for the TGA Class of 2018 and beyond.
[1] Internet page of the Mayo Clinic. 12/20/17 retrieved from:
https://www.mayoclinic.org/diseases-conditions/transient-global-amnesia/symptoms-causes/syc-20378531
[2] Bender, M.B. Syndrome of isolated episode of confusion with amnesia. Hillside Hospital. 1956;5:212–215.
[3] Hodges, J.R. and Warlow, C.P. Syndromes of transient amnesia: towards a classification: a study of 153 cases. Journal of Neurology Neurosurgery and Psychiatry. 1990; 53: 834–843
[4] Facebook TGA Group Transient Global Amnesia retrieved from:
https://www.facebook.com/groups/332192076978375/?ref=bookmarks
[5] Facebook TGA Group I Know what Transient Global Amnesia Means retrieved from:
https://www.facebook.com/groups/30324806135/
[6] Holl, R. World Map of TGA Volunteers. 1/29/18 retrieved from:
https://tgaproject2017.wixsite.com/tga2018/team-tga-world-map
[7] The first three cartoons are from Google Images and our TGA logo was designed for us by TGA Volunteer Holly and retrieved from:
https://tgaproject2017.wixsite.com/tga2018