Social Media: good or bad for headache suffers?

The age of technology and social media in particular offers a lot of options for headache sufferers. My personal experience is both good and bad… if I’m honest, mostly bad.

People are very supportive; you could create a very good support system, especially if you do not have one in place in ‘real life’. You also, often for the 1^st time, feel like you are not the only person in the world who feels this pain. I personally find being a headache sufferer very isolating, despite having one of the best support systems in the world, both in terms of my friends and family and my medical team. But not one of them actually knows what this feels like, and I’m eternally grateful they don’t.

These two positive are huge, don’t let them be overshadowed by my identification of the negatives.

When I was diagnosed I spent a lot of time on the OUCH website, talking to other suffers. But in time the support was overshadowed by the frustration of others having success with treatments that I was failing with, I got frustrated that every option kindly suggested was already ticked off my list.

Self-diagnosis and treatment identification: As I have mentioned before, when I was diagnosed I went home and googled cluster headaches and I have done that again with paroxysmal hemicrania and in time the rest of the trigeminal autonomic cephalgias. This helped me to understand more, but I was lucky, all I read just reinforced what my consultant had already explained.

Some people are not so lucky, in my experience of social media support groups, some people are left with no diagnosis, dismissed by their primary practitioners and GP’s as time wasters, attention seekers, drug seekers. Some are given a diagnosis but no explanations, no help to understand it. So, inevitably, they turn to google for help (other search engines are available lol). Now, my experience as a research health psychologist and social worker can tell you that the internet is a dangerous place, there is a lot of good information out there if you know where to look, but there is lot of bad.

There is a reason that headache specialists are few and far between compared to other specialities. They are a relatively new and complex area of medicine. The internet is not a replacement for their expertise. But I speak as one of the lucky ones to have a headache specialist, for others google may provide them with more information than they are getting elsewhere. This is not a black and white situation there are definite grey areas.

 Treatments for cluster headaches and its friends are varied and range from pharmaceuticals to lifestyle changes all the way to nerve blocks and surgery. I myself have been through more options that I care to remember; the balance between side effects and efficacy is a fine line. What works for one person may not work for another, what one person tolerates might nearly kill another.

I find it helpful and reassuring to share experience of treatment, and side effects but often the ‘helpful’ line is crossed on social media with others offering advice about treatment often without knowing anything about the person who they are interacting with. However, this is also not black and white. What about the person whose Dr refuses to give them even the basic O2 and triptans? I again come from the position of someone whose doctor gives me all the options available and we make a decision together. He’s in charge of the options but I know all the potential risks etc and we make that decision as a team… I am so lucky, there is no denying that. The people that are not so lucky deserve access to accurate and helpful medical information, however second hand information from other patients via social media is not itself adequate.

The internet, had great possibilities and I’m sure for some sufferers it genuinely saved their lives. I don’t have all the answers, all I know is sometimes I leave an internet session feeling supported with an awareness that I’m not the only person in the world. I have read others stories for what they are OTHER PEOPLEs stories. But sometimes I leave feeling angry and confused. ‘Why have they been offered that treatment and I haven’t? ‘Why did someone suggest that to that poor girl, that’s no use?’ … then the thought I feel so guilty for ‘I know you feel suicidal… so do the rest of us… man up!’ please don’t judge me for that last comment… most of us feel suicidal on a regular basis

What might help? Moderated support groups? Signposting sufferers to safe, useful advice. Regardless unsafe support and advice will remain out there, how to we help people identify what's helpful and what's not?

If you are using the internet, my advice…think about what you are being told , check it out

‘don’t believe everything you read’