Migraine leaders - let's talk about Primary Stabbing Headache and connecting patients

Not all Migraine related discussions are found within the Migraine group. Sometimes a patient posts something that relates to Migraineurs in another area of WEGO Health called the General Forum.

Lately there has been an ongoing discussion re: a question posted by a Health Activist in the Dystonia community who was looking for answers to a frightening pain in her head. See Head 'pain'...not head ache She describes the feeling of a very focal, severe but short lived pain that hit her while she was relaxing on the couch. Because she also suffers Dystonia - a misunderstood movement disorder that results in spasms of voluntary muscles - she was concerned because she thought her brain was spasming. Soon parts of her body actually did go into spasm, only serving to scare her further. Soon, several people chimed in either with similar descriptions of mysterious head pain their doctors couldn't diagnose, or trying to help.

As is common in the Migraine community and the Dystonia community, there is/was a bit of misinformation floating about regarding the 'cause' of these types of spasms, head pain etc, as well as potential treatment for it.

What experiences have you had personally with headache disorders other than Migraine? I have provided a number of different links to communities and sites in the thread, but connecting with individuals is sometimes even more helpful to confused and frightened patients. Are there other patients in your communities you may want to direct these people toward so they can learn more about finding an answer? Please share with them here or in the thread.

Sometimes dispelling misinformation can be difficult. One obvious reason is that we don't yet know all there is to know about Migraine and other headache disorders, so there is always a bit of a gray area as we wait for research to support/prove or dispell popular (or unpopular) medical theories and/or treatments. Dispelling misinformation without alienating community members is something of an art form. It's easy to criticize and let our negative feelings get the best of us. As Health Activists we don't want to make someone feel badly for trying to help, so being gentle (don't forget kindness) is really important. But we also want to be sure that bad information isn't spread, no matter how well-intended the information is.

As Migraine community leaders, how do handle misinformation among well-meaning Health Activists who might not be quite on-target, or perhaps are completely off base?

Do you have experiences you would like to share about properly and improperly handling information that may be purposefully or mistakenly misleading?

Want to know what others are saying about misinformation? Here are links to related discussion in 3 different WEGO Health communities:

Handling Migraine misinformation - what are your rules?
Handling sleep misinformation - what are your rules?
Handling chronic pain misinformation - what are your rules?