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Comments from Community Members

Each week we receive comments from our TGA Community Members and we thought it would be nice to share of them with everyone. 

11-19-19

TGA Community Member # 613 (Permission Granted 11-21-19)

 

I am attaching a copy of an outline of my TGA episodes.  Of course, I do not remember the episodes per se, and they are based on discussions with my wife.  You will note that the trigger for 3 of the episodes was sexual intercourse but the trigger for the others is unknown.  It would appear that they may have been triggered by stress and/or illness.  

 

You will note that, following the last episode, I was referred to a neurologist.  I have undergone a number of tests and will find out the results next month.  My wife and I are able to manage the sexual element of the episodes, but I remain concerned about episodes with no evident trigger.

 

When I was putting together my summary of the episodes, it became very apparent to me that I need to maintain some sort of diary to record the episodes and the subsequent symptoms.  My first episode was classic (I now know), but my last episode had longer lasting effects.  The "fogginess" lasted almost a month.  I just did not feel "right".  It may be that a concurrent diagnosis of prostate cancer contributed to this symptom.  Since my last episode in August/September I have developed a "sweet taste" in my mouth and my sense of smell seems to have intensified.  I have also had an incident of double vision (lasted about an hour).  In any event, I am starting to record, on a daily basis, my symptoms (if any).  I recommend this for others since I had some difficulty reconstructing events (even the most recent ones).

 

I am impressed with the work you are doing and appreciate the emails (with attachments) and find them most informative and helpful.  I remain committed to providing any information which may be of assistance in this project.  

 

I hope this will be of some assistance to you and look forward to further communications.

11-20-19

TGA Community Member # 608

(Permission Granted 11-22-19)

 

It's fantastic and quite descriptive (Section 8 TGA Blog).

 

I do think there is a cause for TGA that is common to all of us; it just hasn't been found yet. I think a proper study would finally discover the cause but this affliction is so rare that scientist's haven't bothered to really figure this out. All of us had CT and MRI's done during our TGA. It truly feel that if those xray's were more closing studied that they hold the key to what happened to us. Why isn't this being done??

11-16-19

TGA Community Member # 411

(Permission Granted 11-25-19)

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Hello. Thank you for your site. I am still struggling to understand my TGA let alone explain it to anyone else. Your blog does help frame it for me. My issue is your questions in the registry. I don’t know any of those answers because my brain was on holiday. I’m not sure how to answer. I told my hospital not to send follow up surveys to the TGA patients because it makes us feel bad.
Thanks again for your project. It makes me feel less alone.

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