Hi everyone! I’m new here and would like to know what other Chiari suffers use besides pain meds? I’ve got three wonderful kids and don’t want to slow down because of pain meds. I was thinking of a hot tub? Does this work for anyone else? Thanks and I’m so happy to find this support group!
I also dislike pain meds. (It doesn't help that I can't take NSAIDs!) I avoid moving my head (especially tilting it back) as much as possible--at all times. This greatly reduced the frequency of my headaches and let me avoid surgery for a few years (but now considering it). So it's more a preventive than a treatment.
I also use the "Pain Free" series of physical therapy books ("Pain Free at Your PC" etc.)--I started using these for a bulging disk, and they may be more helpful for that.
I also use a kind of "woo" technique that does work for me: Telling myself, "I notice the pain, but I don't mind it." (This technique also enabled me to get through an upper endoscopy without sedation.) It's easier said than done, but when I can honestly feel like, "I know what's causing the pain and I'm not going to immediately die from it, I don't actually have to mind it"...it can help.
That said...again, I've now worsened enough that I'm considering surgery anyway.
I will have to look up some of those books. My appointment is March 21 with a neurologist. I’m hoping to have them write an RX for a hot tub. My husband thinks I want one just for the luxury. I want one more for the pain then anything.
As for you considering surgery… You must be in a lot pain. I know a few people who have had it done, and they have little to no more symptoms anymore. I hope everything goes great for you!
Thanks for replying to me. I’ll let you know what I find and what works for the pain.
A hot tub helped me mostly for relaxing to get a shot a real deep sleep. Try hot and cold alternating cloths on headache/neck pain heating pads on the neck/shoulders helps also.
For occipital head pain, the Neuro-orthopedic Institute (physical therapy organization) has some excellent resources on dealing with chronic pain - knowledge is power and exercises. The Graded Motor imagery concept for pain (and what to do about it) is excellent, newly researched physical therapy treatment for pain. This is not your standard, old-fashioned PT approach. However, I am not sure about its effectiveness prior to decompression. With that said, I would have liked to have known about this approach to give it a whirl before I had my own surgery. Post surgery, it is helping to increase my activity levels when it comes to head and upper body movements. Chiari can mess up the central nervous system!
I am with the cukester above, in that restricting cervical extension is vital. I changed around my house (closet and cupboard contents) and eliminated some activities as the pay back was too much (washing walls, painting, cleaning chandeliers, working with window treatments - you get the picture).
I never found that pain medication was helpful with CHiari pain. Made me loopy and my head still hurt.
I also worked on posture starting at the lumbar level and up to maximize correct head positioning.
Talking with an anatomy researcher, he theorized that Chiari occipital pain is from the decompression of the vertebral arteries (present in the spinal canal and at risk for compression) that feed the brain. The brain itself is not sensitive to pain, but the vertebral arteries have a branch that feeds the occipital dural tissue that is sensitive to pain. No medical doctor ever answered my question as to why Chiari folk have such a common symptom as occipital head pain. I do not think that they know. Maybe you (or anyone else reading this!) could ask your neurosurgeon/neurologist what their take is on the source of the pain. It might affect how it is treated!
Good luck on the no meds route!
I too have the experience that cold packs put on neck help with pain. Sometimes hot tub helps, but I think that this goes only as far as relaxing muscles. That, ofcourse, can be a big help.
Today hasn’t been a good day. I have a really bad migraine/neck ache. It’s so bad that I’m throwing up. Does anyone else have any issues like this? I’ve taken Tylenol/Advil since you can counter act the two of them. I’m not sure my medicine even had the time to dissolve since I ended up getting sick a little after I took it. Please help!