Has anyone found any medication that helps with the horrible headaches, but doesn't cause side effects worse than the chiari symptoms? I am starting to feel like a guinea pig being fed different pills every week.
I take Methadone…But it still doesnt get rid of all the pain…Ive not taken anything that does…Sorry for Your pain …Good Luck to you…
I take topamax for my headaches and so far it works but I also take norco and flexiril. Going tomorrow to see if they are gonna change meds due to now I know what causes my headaches. I had cervical fusion in 2010 and they said that was causing my headaches surprise !!! They were wrong. It was the Chiari malformation. So we will see if I can stay on these they seem to work for now. Sorry for going off track there. Hope you can find something that helps.
Controlling Chiari pain is damn near impossible. They just don’t make medications for that particular type of headache. I tried everything you could think of before I had my surgery. (surgery, unfortunately, really is the only way to relieve the pain. But the surgery is absolutely excruciating Until you get through the initial healing part. I’m 9 days post-op, the it still hurts a lot, but it’s starting to calm down; however, no more headaches or nerve pain.)
I, too, played the medicine games with my primary doctor for months before FINALLY seeing the neurosurgeon.
I’ll see if I can remember all of the medications they tried on me… most of them were migraine medications, and those don’t work for Chiari sufferers because we don’t have migraines, our headaches are in their own category of heachache and for some reason doctors don’t get that.
I remember one time I needed an appointment with my primary and he wasn’t there for some reason so they put me with someone else, I was there to get yet another medication to try, and even though he had my MRI and my Chiari had been officially diagnosed and confirmed, that doctor had the nerve to tell me he thought I had just “daily headaches”. Uhm, excuse me, how incompetent are you?
Of course I tried EVERY OTC pain reliever you can think of. And for months the doctor asked me, have you tried ibuprofen? It hasn’t helped? Like omg. I don’t understand why doctors seem to think ibuprofen is the “fix all, miracle drug”. Ugh. I eventually got it through his head that ibuprofen is useless.
So onto prescription meds:
>Fioricet (which I think is the automatic go-to from the ER when you go for headaches; it’s just prescription strength Excendrine), >Maxalt,
>Topomax (took it for a month to try to give it an honest chance, but it made things worse and also gave me more problems. It caused me to have a lot of eye pain, and one side effect of Topomax is potential loss of eyesight; I took the eye pain as a sign and wasn’t trying to risk going blind for a drug that wasn’t helping anyway.)
>Amitriptyline (which I was pissed about, it’s apparently an antidepressant that in low doses helps with pain, but I can’t take antidepressants, and he mever informed me of the fact that it was; not the first time he’s lied to me though)
>Indomethacin (which I was told was an incredibly strong anti-inflammatory usually used for gout- not sure how that was to help my head)
>Gabapentin (for my nerve pain, worked for about a week; ended up making me have violent whole body muscle spasms after a few weeks)
>and Prednisone (which made me sick; I didn’t see how a steroid was to help with headaches).
I also received a couple of Toradol shots here and there over those couple of months, but they were few and far between since they will do a number on your liver if taken too often, but those were the only things that ever actually broke my headache for a few hours.
I know everyone handles medications differently, but those were the one’s I’ve tried and how they affected me. I’m sure I forgot a few, I had been given so many.
Coffee would occasionally help to ease my headaches a little, since caffeine constricts the blood vessels, also once in a blue moon an aspirin with my coffee gave it a little more boost, I guess cause its a blood thinner?
But there really is no stopping the pain… up until my surgery I had lived with it for the past ten months. Every single day, and morning were absolutely excruciating.
I really hope you are able to find something that helps you. Have you been able to see a neurosurgeon yet or make an appointment to see one? That’s your best bet, and most definitely try to find one that specializes in Chiari.
The only real fix is surgery, and he’ll probably tell you that.
Surgery is no walk in the park, but the recovery pain will be worth it once its all said and done and you can function normally again.
Good luck to you!
Amitriptylan made me psycho.... rage like ive never felt in my 35 yrs on earth. Garbepentin made me stupid (spent all my time wandering aimlessly trying to remember what i was supposed to be doing) and fall down alot.