Hi all, in my last post I explained that I have another issue w my skull/brain on top of my 12.7mm chiari. No migraine meds have ever helped my chiari headaches and of course does nothing for my neck pain. I started w a new pcp and he’s pretty much making me start over w meds, putting me on a ton of various migraine meds and won’t prescribe any pain medication (which was what I was taking on days where the pain is really really bad, some months I’m lucky and I barely take it so its not by any means a daily med for me).
My previous neuro told me migraine meds wouldn’t help since my pain is due to chiari & the second condition.
What luck, if any, have u had w migraine meds? And I know some ppl can have regular migraines and chiari headaches but I’m talking specific to chiari headaches.
Hi there…I am 40 now…I had headaches, both Chiari and Cluster headaches essentially daily from the age of 10 until I was diagnosed with Chiari 2 when i was 33 years old. I had the surgery at the University of Miami within a month and can say that having a day without a Chiari headache was a wonder i didnt know existed. As i have two types of headaches I can tell you that migraine meds didnt work on Chiari headaches. For those the only thing that ever helped was fioronol, which i assume is because of the pain medication. The problem is so few dr.s know what to do with these headaches, nor have they suffered what we have. That is not a medication that I would like to take again, but I can say it helped. For me, my primary has worked with my NS team at U Miami and I have been put on an aggressive medication list that I have learned to deal with. It works for me because I have a very involved and caring PCP, but I am sure it isnt for everyone. But being that I suffer from both, I am sorry to say for me, Chiari headaches didnt respond to the migraine headaches. Clusters dont either, when those have “set” in very bad every few years I have ended up in the ER for Oxygen and a cocktail of meds to essentially put me to sleep and get through them. I hope you can find a dr. that will take the time to work with you, not judge you and monitor you and find a med that gets you through the pain. Life can be pretty tough for us, and so few understand.
Sorry, to add more, but I see another that had the same sucess with the fiorinol type meds. My primary has moved me off to a dosage of actually stronger pain meds of percocet, as there are barbituates and narcotic in that med. along with the tylenol or aspirin. Discuss with your dr. the dangers of both, but I have no problem with my dr. prescribing this way, he knows how much I take, I need the meds and I am able to function much better. The worse thing about Chiari is the surgery is a wonderful change in life, but it doesnt magically go away. Finding a hands on PCP that will find out about Chiari is as important as the surgeon you will be seeing. I am sure some might thing my dr. has over prescribed, but he wanted me off the fiorinol if possible and the percocet or vicodin over the years has been more effective. Just make sure the pain is there, you are being responsible and seeing your dr regulary to discuss your pain and use. I hope this helps.
Thank you! Like you, I suffer from true chiari headaches, and I was recently told by my neurosurgeon that I have a second issue where my skull formed improperly and is pushing into my brain cavity area. He is now very concerned over that and thinks that condition is probably the cause of my really bad headaches/pain that feel like someone put a vice on the back of my skull and was squeezing as hard as they could. I too have to go to ER when the pain gets bad, as I also get severe vomiting w my head pain and that becomes a vicious cycle bc viting makes my head pain surge. I just hate how I need to go to an ER or urgent care for pain relief. I have offered to sign a contract, provided all my medical history - it’s almost like he doesn’t want to believe what the NS is saying. My chiari is also type 2 so combined w my other issue, I’m in pain more often than I’m not. It’s a shame that my prev pcp was very caring but my new insurance won’t cover her.
I see my pcp tomorrow and he has new info From my recent neuro appt so I’m hoping he finally realizes that I have legitimate reasons for pain. I’ve tried every med I’ve been asked to and done PT a few times. The surgery to correct my other issue is horrendous, and I would like to have achild before I opt for the surgery.
I have luck with Fioricet & Midol. strange combination but my pharmacist swears by Midol & recommends it to everyone with a headache. If you are having Occipital Neuralgia or Chiari Pressure Headaches, Nerve Blocks have worked really well for me on my two major Occipital Nerves. It;s worth asking your Dr. about.