Chiari Online Support Group

Chronic headaches


Hi im currently suffering with severe headaches that last for days. I know its a little off topic but i was wondering if anyone has any tips on soothing the headache as i am in early stages. I was diagnosed with 14mm herniation and am currently awaiting a csf flow stufy to be completed. I aslo heard cafeine can ease the head pains
Thanls in advance.


Coming to headaches as a person with chronic, neurologically complicated migraines I can tell you a headache, a migraine, and a chairi headache are all very different things with very different treatments.

Does your headache start at the back of your head and wrap around? This is typical of chairi. Caffeine isn’t going to help much with it b/c caffeine constricts blood vessels which helps with migraines that are caused by an abundance of blood flow in a given area. It might help a little because caffeine also helps metabolize medications faster in general.

Chairi headaches are caused by the brain swelling into the malformation and becoming constricted. I would hazard that some sort of anti-inflammatory would help you the most. You may also want to try ice packs on the back of your neck - which might be more palliative than anything else but it won’t hurt to try.

One of the biggest things you can do is reduce your stress level.

If your headache is pounding, to one side of the head, or more focused in your face or behind your eyes it’s not a chairi headache, it’s something else that would have other treatment options.

Post some more details about the kind of headache you have and there may be more suggestions available.



It very much starts at the back of my head it actually feels as though somebody has inserted a vice in to
My0 skull and is rotating the vice outwards continuously. It tends to wrap around the sides when it is at its worse but atm i am unable to stand as i go dizzy and feel nauseous. It definetely feels as though my head is falling apart i cant take the pain anymore but my GP has yet to arrange an appointment for me to have the csf flow diagram which the specialist requested for me as they say it is to specialised for the general practioner to request andnthat i have to fund it myself through private healthcare which i just cannot afford. I feel as if every day its getting worse and i am alone as not even the dr is helping me.


You definitely sound like you have chairi headaches (vs migraine) and I would say you need to get to a specialist. These issues, by their very nature, are beyond a GP.



I am currently on the waiting list to see a specialist. But they are taking forever


If you can’t get an appointment I would suggest you find another specialist. I got my husband in to see a neurosurgeon fairly quickly at the Chiari Center in Milwaukee. No waiting list, they just had us send his MRI and then based on that made an appointment. He has constant headaches but his could be caused/worsened by lack of good sleep (he has sleep apnea), so they don’t want to operate at this time. It sounds like you are in desperate need of some relief and I hope and pray you will find it soon!!


Before decompression surgery, there is not much you can do. I went through so many jobs because employers did not want to hear I can’t come in because of a headache. Sounds like the perfect generic excuse. I had some good jobs too :(…anyways.

I’m sure you already know temperatures, stimuli, smells, laying down too much, not laying down enough, stress anything makes it worse anything makes it worse, nothing (usually) makes it go away.
However, if i had to give some advice, stay home if you can and cold showers so that the whole body is exposed, or just stick your head under the faucet. I would usually do this every couple hours. About the time my hair would start drying, i would do it again.
Ultimately, surgery is the only thing that will hopefully bring some relief. My surgery did bring some relief, although I do still suffer. Now, I am so thankful for days there is no pain or not much (head) pain. I still get the neck, back pain etc. (I have syringomyelia), but again, surgery has given me some relief.


My daughter has no relief from her headache for 4 months now. It has never gone away. Does anyone have this happen? How do we help reduce the amount of pain. She is always at 7 or 8 on a 1 to 10 scale. We’ve tried all over the counter meds, sumatriptan, reglan+benadryl, and now the dr. put her on amitriptalyne, but that is only suppose to help her sleep.


I assume your daughter has a Dx of Chiari?

With that in mind, she’s not being treated correctly as Chiari headaches are very different from migraines and the medications you’ve listed were, in part, developed for migraines – a completely different sort of head pain and they will not work on Chiari issues.

What doctor is she seeing? A neurologist with Chiari specialty? If not, you need to get her to one of those as quickly as you can.

The only suggestion I have for you at this point, again, assuming there is a Chiari Dx, is low dose anti-inflammatory twice day. This is only an attempt to break the cycle she’s in. I would also suggest speaking to a doctor about a step-down course of predinsone, again, in an effort to break the cycle. It sounds like swelling/inflammation has become chronic and the relief being sought is going to come with a reduction in swelling.



I had surgery in 2012 and thought i was doing well except i was dealing with headaches. I didnt realize how bad they were until my husband said i complained every day. My neurosurgeon sugested keeping a log and i realized it was true…i had a headache every day.
So, the neurosurgeon recomened taking doble doses of vitamin B2\Riboflavin (400mg) and magnesium oxide (800mg) because i hate taking medication and asked for something more natural. It worked!! Now, i get them once or twice a week. Plus…i was always constipated from having IBS but after taking vitamins …no more constipation. :blush: