Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
There are lots of new members, so I thought I'd mention the symptom data base that the members put together last year. Everyone brainstormed a list of IIH symptoms, and everyone voted for each symptom that they personally had experienced. The results were the list of symptoms with the % of members who had experienced them.
That information was life-changing for me. I saw I wasn't alone. It opened my eyes to see that many symptoms I didn't suspect were IIH probably were. They occurred at a far greater rate in our group than in the general population or in people who took Diamox.
Go to the link below. Once there, there are 4 tabs at the bottom:
- Symptom Raw Data
This has everyone's raw data. I don't know if you are able to add yours and save the updated sheet.
- Symptom Summary
This is the summary of all the raw data. It is the most useful format, and is great for you, and sharing with family, etc.
- Great Doctors
These are doctors members have mentioned in the forum.
- Treatments
This was an area members started to gather treatments.
- Test Results
This was an area members started to compare their test results.
Again, I don't know if you can add data and save the spreadsheet online. I'm thinking not. It'd be great if we could find a place where we could, OR if someone could figure out how we can do it in Zoho docs.
https://docs.zoho.com/sheet/ropen.do?rid=12cbm2154475500b44de7afaae3d169036b99
https://docs.zoho.com/sheet/ropen.do?rid=12cbm2154475500b44de7afaae3d169036b99
That information was life-changing for me. I saw I wasn't alone. It opened my eyes to see that many symptoms I didn't suspect were IIH probably were. They occurred at a far greater rate in our group than in the general population or in people who took Diamox.
Go to the link below. Once there, there are 4 tabs at the bottom:
- Symptom Raw Data
This has everyone's raw data. I don't know if you are able to add yours and save the updated sheet.
- Symptom Summary
This is the summary of all the raw data. It is the most useful format, and is great for you, and sharing with family, etc.
- Great Doctors
These are doctors members have mentioned in the forum.
- Treatments
This was an area members started to gather treatments.
- Test Results
This was an area members started to compare their test results.
Again, I don't know if you can add data and save the spreadsheet online. I'm thinking not. It'd be great if we could find a place where we could, OR if someone could figure out how we can do it in Zoho docs.
https://docs.zoho.com/sheet/ropen.do?rid=12cbm2154475500b44de7afaae3d169036b99
https://docs.zoho.com/sheet/ropen.do?rid=12cbm2154475500b44de7afaae3d169036b99
https://docs.google.com/spreadsheets/d/1fYUdDUeaNfyJ1PkrEM7qy-eYty9xgrHZhminZ1OT84Y/edit?usp=sharing
I added my symptoms--I hope it's okay but I also added 2 columns under treatment for Mirena/IUD in or got it removed after dx. I just saw a link someone posted about a Multi-district law suit against the Mirena for it's correlation with IIH.