Chiari Online Support Group

Headaches have gotten so much worse

Hey guys- I know this has been a thread that has come up numerous times before, but I’m really struggling. It’s been a couple weeks since I’ve had any headaches but yesterday they came back with a really painful vengeance. I haven’t been able to see the neurosurgeon I was referred to yet because I’ve lost my health insurance, but I’m desperate for help. So far I’ve tried one of those travel pillows to help keep some pressure off my neck, essential oils, and ibuprofen. I’ve tried prescription strength pain killers multiple times a day and nothing has been helping! What makes this all the more frustrating is that aside from this group online, I’ve found NO answers or help regarding my Chiari. So few people know about it, so the research and help is difficult to find. So please guys, any ideas? I’m at my breaking point.

Hi Kendall,
I’m sorry to hear you are struggling. The headaches certainly can and do suck the life out of your life. I often go a couple of weeks without having any and then once they are triggered I may have several days in the same week where I have them. Sometimes I know the trigger, sometimes I don’t have a clue.

I have found that an ice pack is one of the biggest things that helps me. It has to be direct though and right at the base of my head/top of my neck. It has to be cold! I tend to get the “headaches” (aka feeling like I’m being stabbed with an ice pick) at the base of my head but this usually accompanies a back ache in my lower back (no pain in my upper/middle back - strange). The lower back pain is greatly helped by a heating pad. So ice at the top, heat at the bottom for me. Also, when I really can’t stand it I take as hot of a shower as I can take and have the water directed at my lower head upper neck region. This really helps but mostly only while I’m under the water. Once I get out it often ramps back up again. But sometimes just that 20 minutes of relief is enough to power me up to take it until it finally subsides.

The neck pillows you mentioned actually aggravate my pain so I don’t use those. I’m thinking of trying a water pillow as I’ve read where that helps some people. Another thing that helps me is sitting down and leaning forward (not with your head in an upside down position though - big no no) kind of like as a kid when you put your head on your desk.

I think everyone has little tricks that help them and everyone is different but these are just a few of mine. I’m always interested in hearing others - the ice was one somebody else mentioned on here and that has been a good one for me. Also, my dr prescribed me muscle relaxers and sometimes those help, too. I hope you get some relief soon! The days of pain can seem like the longest days of your life!
Take care

Sorry to hear this, weather is a big changer for me, terrible headaches usually 2 days before rain, storms, etc. my Chiria surgery was Nov. 2016. Can’t believe it’s been almost 5 years. I agree with the last post, Ice pac! I take Tylenol 3, if they get so bad I cry. It helps. The ice pac seems to numb the pain. Lie down in quiteness if you can. I have nerve damage following my surgery. I don’t blame my doctor. I felt good, so 3 months out, I started doing more than I should. And went back to work 2 months later. So I feel ur pain. Sometimes biofrezze is a big help, I cake it on, all around my lower head and shoulders, neck, and up on my scar. So did you have surgery?