I had posterior fossa decompression 10 years ago. It helped with some of the symptoms , but not for the migraines. After two years and trying a lot of meds for migraines, my neurologist recommended Botox, and it was manna sent from heaven! For me that meant not having migraines for three whole months. About the needles, don’t worry, they’re tiny and it’s worth all the trouble. If you are lucky and your insurance covers it. It would be something that I would definitely give a try
Here is some very interesting find in the field of migraine prevention alternative to botox injections
I've just read in Headwise magazine published by National Headache Foundation about new NON-drug option for migraine treatment approved by FDA in 2014. It is a transcutaneous neurostimulation device CEFALY. Available by prescription. More infor here
I will be definitely discussing this device with my neurologist. Sounds interesting. It is not as invasive and uncomfortable botox shots.
I also recommend everyone follow up on http://www.headaches.org on top of our chiari websites news. They send me one free issue of their magazine and that one issue sorted out for me A LOT about migraines. A lot of useful information based on very new research. Lot of things I did know like 6 pain killers like i-ibuprofen a day are harder on us than 1 triptan pill etc
This is all very interesting! I am scheduled to receive my first Botox injections on Monday. I must say I am less than excited. Terrified is more the word. I am. Licensed medical massage therapist and have seen clients who have had this done. I have a wonderful neurologist, him and my primary Dr are the only ones who I feel have not completely blown me off, or decided I’m a basket case. They believe me- they have said “I believe you” powerful words to such a broken human. My neurologist said I’m really at the end of the “pharmaceutical road” and offered to try Botox to see if it works. I’m desperate for relief. I’m desperate to have even just a small sliver of my old life back. I’m just desperate. Being injected 30 times sounds awful. I keep trying to tell myself I lived through childbirth as some sort of positive affirmation. Not sure it’s working. If the Botox works how long has it worked for you guys? Does it start right away?
I tried Botox injections once and did not do any further because it made no difference at all. If it helped, even a little, I would have tried it again. I did not think that they hurt, it just felt like a little pinch but they do the injections all the way around your head and forehead. I was a little afraid to proceed with the injections because I did not want the effects of Botox in my forehead. My doctor laughed at me because she said most women my age (50) would like that added benefit but it did not do anything for me. All I wanted was relief for my headaches. I have tried so many medications and nothing to date has helped me all. I wish you the best and whichever way you go, I hope you find something that helps.
Leprachaun66 I’m sorry you did not find relief. To date have you yet to find any lasting or even temporary relief? How long have you been suffering symptoms, if you don’t mind me asking you all these questions.
Here you are trying to be kind and give your experience and now I’m giving you the 3rd degree. I apologize. I find it so so so incredibly hard to find people who understand. I could list a long list of things you all, really just strangers, you all understand. But the people who are or were closest to me don’t. It’s exhausting pretending to be as well as possible. For them but really for my son.
I never- EVER wanted these medications. Being in the alternative health field I had other ideas. When those fail I eventually had to yield to the doctors to be “a compliant patient”. I am now at a full hand full in morning and at night and can no longer take ibuprofen bc I nearly “burned a hole through” my stomach from taking too much for to long, that’s what happens when someone is in constant pain but is a single parent and still has to get things done.
I’m glad to hear you don’t think the actual injection sights were excruciatingly painful. It is really frustrating that you went through all of it and got no relief.
Went through with the Botox a couple days ago. He said it can take a week or up to two weeks to know if it will help. I’m really really really hoping. Even for a small amount of relief. Life is VERY stressful right now. Just any relief!!!
Hi Cassie. Did you get relief from the Botox injections. I really hope that you did. Hey, you do not need to apologize for asking me questions. That is what we are all here for, to help each other. No, I have not had any relief. It actually looks as though I am having migraine related seizures now and I have been put on antiseizure meds. I don’t remember but have you had the decompression surgery? I had mine about 1 1/2 years ago. I have had a lot of problems since. My oldest son also also has a chiari. He is 28 and does not need surgery at this point.
Hi Leprachaun. Well my neurologist said it would take up to 2 weeks to know if I’m having relief. Last night into today I had my first really really bad horrible migraine since the injection. I am also going to head and neck physical therapy twice a week and I missed a session last week. My overall daily dull aching headache has gone down so I’m not spiking into a migraine as often. I’m not sure if I got the migraine now because I kissed the PT which I think is addressing a lot of issues that have been compounding each other or if the Botox isn’t the right fit for me or if it is extra stress happening in life right now.
I don’t know about you but sometimes I think “gosh I wish this weren’t happening now or I could do this at a different time so I could tell if XYZ is working or my life is just too crazy right now” but the fact is life goes on and it’s always going to go on. So, see how the next couple months go, maybe try another round to be sure.
I have not had the surgery yet. I have not had a proper counceltation with a chiari expert in my opinion yet. I really don’t want just anyone going in there. I’ve read on here there are people who have had 4 and 5 surgeries for it. Just one terrifys me.
Your son is 28 and does not need surgery yet- do they anticipate he will need it in the future? What does he do to manage his symptoms? I’m 30 and I feel far too young to be going through this stuff. But I have days where I think brain surgery is a good idea. Today was one of those days. If I could be guaranteed my life back I’d perform the surgery on myself!
Hi Cassie, No he doesn’t need surgery yet, and it doesn’t look like he will need surgery at this point. But, because of what happened to me,they will continue to monitor his with yearly MRI’s. He was told that he does not have any pressure on his brain. He has symptoms but they are only minor. He does get headaches with laughing and coughing and occasional bad migraines but other than that he is pretty symptom free. He has known for several years about his and oddly enough I did not know about mine until 3 days before surgery. The other thing I forgot to ask you last time is have you applied for disability yet. I have had to file for disability and I am on my 2nd try. I got a lawyer this time. I have seen some of your other posts and I know you are having a lot of problems so I didn’t know if you were able to work due to your headaches and other symptoms?
I am very thankful that your son does not need the surgery, I’m sure you are too.
So you found out and only THREE DAYS LATER you were in surgery?! How can ones mind even wrap around the idea in that amount of time?!
My mom has been talking to me about applying for disability for a while. I have so much trouble with that. I’m only 30! I WANT to work. I’ve always been a hard worker with at least 2 jobs many times at least one of them being a 12 hour shift job. I was able to be on unemployment for a while but that ended just a little while ago. I’m burning through my savings, especially with recently moving. So I am in the midst of gathering paperwork to try to start to process. Which feels like being defeated again. I don’t think there is anything wrong with disability or anyone who was approved (after many attempts no doubt) but I just feel like this is one more thing this stupid thing has taken from me. If it wasn’t my brain and it wasn’t so important- like if it were my arm, I’d saw that thing right off. There- problems solved!!!
Hi Cassie, I went to Columbia St Mary’s in Mequon and saw Dr Broderick to get Botox for Migraines in Dec. But when he told me I had Chiari I went to Dr Heffez in Milwaukee. I haven’t been back for Botox, since Iam waiting on approval from the insurance. Has it been helpful and any side effects?
Thanks, Tina from Port