Hey guys I was wondering what anyone has tried for headache relief? I have tried every over the counter headache and anti-immflamatory, prescription anti-imflammatories, muscle relaxers, old school anti-naseau pills,Vicodin, hot showers, ice packs, heat packs, stretching, massage and NOTHING is making a dent in the pain. My headaches (migraines) are becoming an everyday thing and lasting days, I don't get a second of relief. Please any suggestions will help!
You sound like me before I was decompressed! I'm assuming you have Chiari - were you decompressed? if not - how many mm? Have you seen a surgeon and what are your other symptoms? I know many doctors and surgeons don't consider migraines/headaches and chiari to be related and there isn't much evidence backing the theory up, but I consider myself living proof that they ARE related. I'm 15 weeks post-op decompression (7 weeks post-op csf leak repair) and so far I've only had minor headaches with neck stiffness/pain that I've attributed to surgery and the changing weather.
Imitrex (or generic sumatriptan) was forced on me by a NL who didn't connect chiari with migraines and it's now listed on my medical charts as one of the meds I'm allergic to - I'd be careful if you try it because when I was in physical therapy they told me how many people they hear that have had horrible reactions to it, the same as me - it gets rid of the migraine - but turns your whole body in to a mess, leaves you for hours feeling miserable - my description was I felt like I was dying, SO much pain throughout my body. My NL said I was "taking it wrong" so I took it several times even half a pill, exactly as described and each time thinking I was doing something wrong finally when I was in the hospital for my decompression they told me I shouldnt ever take that again and put it on my allergy list.
Injection?? Wow, I don't even want to imagine...Yeah I'd much rather suffer a migraine than take another dose of that stuff. Nothing compares to how sick I was in ICU with my CSF leak, but taking imitrex is a close 2nd, lol!
Beeba said:
To be clear - I hate that medicine. I would rather suffer with the headache - at least I know I will live. I used to take it by injection - you think the pill is bad??? I can only assume it is similar in effect to heroin the way it hit my feet. It did get rid of the headache but the side effects I found far worse. One time the dr I worked for had a really bad headache (she had seen me take it and pooh poohed my opinion) so she took it. I spent the next hour tryi g to convince her she didn't need an ambulance. It can be a life saver for a migraine but it ain't gonna make your skull bigger. She said she would not ever recommend it again - she was so scared.
I have used Imetrex but it has lost its effectiveness all it does now is make me have weird muscle sensations and unable to focus. I have my first appointment at the WI Chiari Institute but that is next month.
Beeba said:
The only thing I didn't see listed Is imetrex. I was on iv dilauded before first surgery - I didn't care that I had a headache but I still had it. My only answer was surgery.
Doodledee-
yes I have Chiari, unfortunately. I have not been decompressed. Actually I am waiting for my first appointment with the WI Chiari Institute in Nov. My CM was found in 2005 but was not explained to me by my NS just in a passing statement and not even by name, so it wasn't until the last few months that I was even told I had CM. So I have been sitting here for 7 years just trying to find any relief for my symptoms and thinking that I was going crazy with all these different types of problems. I have been living with constant daily migraine headaches, pain in my neck, shoulders (well really everywhere in my body), a constant mental fog, clumsiness and a lack of any resemblance of balance actually it has gotten to the point where i fell going up on my stairs and broke my wrist. I have a constany ringing in my ears, pressure in my head and eyes, and vision loss that comes and goes... the list can go on! But all of these symptoms I have mentioned to different specialists and they have ALL told me that there is nothing wrong with me. I have been to Mayo clinic twice and even they missed the diagnosis of CM or just didn't think it important enough to mention it to me.
doodledee216 said:
You sound like me before I was decompressed! I'm assuming you have Chiari - were you decompressed? if not - how many mm? Have you seen a surgeon and what are your other symptoms? I know many doctors and surgeons don't consider migraines/headaches and chiari to be related and there isn't much evidence backing the theory up, but I consider myself living proof that they ARE related. I'm 15 weeks post-op decompression (7 weeks post-op csf leak repair) and so far I've only had minor headaches with neck stiffness/pain that I've attributed to surgery and the changing weather.
Botox! Lol. I have not used it yet, but a friend of mine swears by his monthly injections. He does not have CM. He suffered from daily migraines. He was living in hell until this past February. He says that he can feel it wearing off towards the end of the month, but that it is worth having more good days than bad. I hope you can find something to at least take the edge off. And if by chance you find a "miracle drug," please let us know! :)
A friend of mine also has botox all over her head every eight weeks. It’s the only way she can function.
The only thing that has worked for my headaches is surgery! Nothing even touched the pain, and I was having migraines/on top of chiari headaches 20 days a month. I had surgery 4 months ago. I get headaches occasionally now. I hope that you are able to find some kind of relief SOON! good luck!