Gillian(@gandkr) is doing some research. I’d like to help her whilst leveraging the exercise for the benefit of the site.
We have sorely needed some way of keeping a summary of everyone’s story that’s accessible and comparable without having to wade through posts and posts.
First: I’d like everyone to keep all your personal status updates in a single Personal Diary Topic if at all possible ( just keep posting to it with your next update) Consider updating at least every 6 months. Give it a personal title of your choosing.
Also, to help people understand your case without having to read a massive novel (!), please consider maintaining (a reasonably up-to-date) summary at the top in your first post, this is what I’ve done now:
I’ve got three sections:
- Summary - which contains a structured list of questions and answers
Symptom summary giving your current state:
- What’s Gone (what symptoms you had but no longer get)
- What’s Ongoing (what symptoms you still get)
- My Worse Day Now (description of the worst day you get now)
- Rough History (a bulleted timeline of your history from very first symptoms. Don’t make it too long, a “page” is enough. This is more freeform)
Edit your first post in your topic and add these sections
Suggest the following entries for Summary (you can simply cut and paste them in):
First acute balance issues:
Number & duration of acute phase(s):
Any suspicious physical event/trauma leading up to dizziness:
Start of chronic phase:
Age at chronic onset:
Number & type of consultants seen to date:
Diagnoses received (one I’m “running with” first):
Medications used successfully for MAV:
Failed medications for MAV:
Non-pharmalogical treatment tried which helped:
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified:
Any hearing loss in either ear:
Persistent or intermittent tinnitus and character:
Other chronic conditions I’m suffering from:
Medication I’m taking for other conditions:
Any personal history of migraines:
Any family history of migraines:
Any history of ear problems:
How did friends, family, and doctors react to your symptoms?:
My example is here:
To add the summary remember you can edit the first post with edit Wiki icon. If this is missing let me know, I will turn your first post into a Wiki. This is only intended to allow you to edit your own post after the editing time has expired, not for other people to amend your post! (the ability to use the pencil tool ‘times out’)
Put the summary at the top of the post, and remember, you don’t need to delete what you first wrote! (but don’t panic if you did, the beauty of Wiki-fying your post means you can retrieve past versions)
Oh and remember everyone, keep Personal Diaries on Topic - it’s ok to compare your case with theirs and ask questions, but please don’t start discussing third party cases (ie the cases of other people who have posted in that Topic). Do a search and ask that question on their Topic. Check who the OP is before asking a third party a question.
Remember, this is not ‘Facebook’ - this forum is has a structure to make it easier for people to find information. Keep it tidy!