New to all this need advice

I was recently found to have CM1 and for the last day and a half have had a headache. I don't go to the neurologist until the 17th and I'm curious what medicine helps with the headaches. I can get into my internist soon and could get him to prescribe me something. I have been using tramadol 50mg for now which I have for my blown lumbar disc and it doesn't seem to do much. I also have some muscle relaxers and migraine meds. Any suggestions would be great. Thanks.

Welcome Nick,

I had a migraine for the last 3 weeks. Yesterday was a little relief, but today I'm stiff and the back of my head hurts. I try to take my migraine medicine right away. It doesn't make the headache go away, but it does make it a little more tolerable. I have not had any medicine that completely cuts the pain. Sometimes laying down in a dark room helps the problem is that when you work, it's not always possible to take time off every time there is a headache. I was put on Tramadol 3 years ago for fibro and it started not working as well. I had terrible problems with my temperature. I would have drenching sweat experiences and break through pains in my body. It was not a fun med to get off, but I did and for me I will never take it again. It's funny, but over the counter excedrine migraine with the caffeine seems to help if I take it throughout the day with the migraine. Good luck! I hope others can respond. I'm still new at this also.

Welcome, Nick,

I take Fioranal for H/A's...but have to take it right away b4 H/A gets too bad..then it doesn't help. Good luck at the NL..keep us updated.

Hi Nick and a big welcome.

I hope you get some relief from the headaches soon. I had my surgery last year and while I hadn't had headaches for awhile I had experienced them in previous years. For some reason my headaches just quit and I had more problems with the dizziness, fogginess and vertigo which mostly went away too when I had my surgery. When I did have the headaches the only thing that seemed to work for me was to just lie perfectly still in a dark room. I didn't find that pain pills worked very well for me at all but everyone reacts differently and I hope you get some relief soon. I know when you work it's very difficult to lie still in a dark room so I wish I had more advice for you. I can though and will keep you in my prayers asking that you will feel better soon. At one time I was pretty frustrated because I was misdiagnosed for years, and years, and years, etc. I knew something was wrong but no one could tell me what it was. But I finally did get a diagnosis in my old age and got help from an excellent surgeon. The good news is that you have been diagnosed and are not alone in this; there are a lot of good people on here who offer support and hope. Learn as much as you can and don't take no for an answer from those who treat you. Chiaria is such a personal journey for everyone; When I first started reading postings on the internet it scared me half to death. You are fortunate that you found this site because there is so much positive support on it. I didn't find it until after my surgery and I read a lot of horror stories. I finally came to the realization that most people who stay on support groups are those who have problems and therefore need the support. I would assume that most people who get a good result go on with their day to day activities and you don't hear much from them. So, if you read too much negative stuff, try to keep that in mind. Just as we all react differently to having Chiari we all react differently to the surgery. I personally didn't find it a horrible experience at all. When I woke up the next morning after the surgery I felt wonderful. For the first time in a long time nothing hurt and that was a good feeling. I didn't get sick from the anethesia either. Just telling you to let you know that for me the surgery was a good thing......I'm glad I did it. I hope you find the right answer for you to alleviate your pain. Blessings to you as you go through this journey.

Shirley

Hi Nick,

It might take a little bit of time to figure out what works for you but your neurologist will help you find something that helps. My only advice...find a neurologist that specializes in Chiari Malformation. I've had neurologists tell me that my symptoms were not related to CM1 and went through a lot of useless tests and procedures and medications. I found that Ketoprofen works really well on my headaches and amitriptyline has also helped. Amitriptyline is an old school antidepressant that has been found to help with chronic pain. Migraine medications did not work for me. I did take a muscle relaxant/Midrin after my surgery and it helped a little. Not sure if this helps?.... keep us updated.
Holly