Help for constant headaches 3 years post surgery

Hi. I am writing this on behalf of a friend who has Chiari Malformation who had surgery 3 years ago.

She continues to experience constant migraines/headaches since surgery. She goes to bed at night with a headache and wakes up each morning with one. It is usually the left side of head and describes it like a stinging pain which is unbearable to touch. The rest of the head then can feel like a migraine all over. The eyes can feel effected too and sometimes she sees dots of colour. She usually needs to lie in a dark room to block everything out (this helps sometime but not others). As a result she spends much of her time in bed which makes her feel depressed. It is very disabling for her as she cannot engage in much activity.

She has tried different pain medication prescribed by her local pain clinic but none seem to have helped.

Can anyone else recommend and pain management strategies, alternative therapies, diet changes, anything that may help.

She would appreciate any advice or reassurance. Thank you.

I would recommend that she try muscle trigger work. It is non-invasive, very applicable for Chiari folks, free, and you can do it yourself. It muscle triggers are what ails your friend that that is a sound route to try. She could buy a book designed for lay-people by Clair Davies, titled “The Trigger Point Therapy Workbook”. It is designed for a person to look up the sore body parts, it lists muscles that can affect that area through referred pain patterns, then shows a person how to work on those muscles. Start gentle!

Now, having said that, if your friend is too sensitive to tolerate touch, she will need to do a different therapy first and then come back to the muscle trigger work… This is what I had to do. To desensitize the head to touch, movement, clothing, and hair do-dads, graded motor imagery (from NOI - Neuro-orthopedic Institute) works very well. It takes multiple sessions daily for a few months but does wonders to rewire the brain so that stimuli to the head that regular folk feel and perceive as no trouble becomes tolerable to the Chiari person. That Chiari brain is wonky!

Graded motor imagery is a treatment used with good results for amputees with phantom pain and people with Chronic Regional Pain Syndrome. All three deal with a brain that is having difficulty processing body stimuli and turns it into pain. Of course, your friend will have to have some buy-in for these therapies to assist as a willing participant is necessary. Also, I have found that if a treatment or therapy approach bothers me more, I know that I am on the right track but have to find a level of therapy that suits what my body and brain can handle, not what someone else (or even myself sometimes!) thinks I should be able to handle. That adaptation to therapy progressions can be a challenge with the Chiari client.

Hopefully your friend can find the strength to try something new. It can be very challenging when your world is so small and painful to have hope that something will help. I know that I have taken many baby steps to get out of dark places.