My name is Austin, I was seeing a neurologist for chronic headaches that started in 2021. After getting an MRI it was discovered that I have a 4mm displacement. My symptoms are largely relegated to headaches, but if it gets bad I get dizzy and sometimes vomit. I have noticed that changes to my sleep schedule, like even sleeping in an hour later than normal, is a sure way to trigger a headache.
I am a bit confused about what my expectations should be - my neurologist has said that I shouldn’t expect much beyond the headaches, but whenever I see her she seems to be checking for new symptoms. I am 31 at this point and didn’t start having any symptoms until I was 29. Have people found their symptoms progressing over time? Obviously mine have to some degree, since I simply didn’t have headaches before.
I take Nurtec now, but I will usually have sort of annoying headaches for at least a small portion of the day and one debilitating headache every week or two. My doctor suggested topomax, but I was a bit disconcerted by all the side effects. It sounds like people here have had good experiences?
Finally, my neurologist doesn’t seem very concerned with anything around my posture, or how I sleep, but I find it hard to imagine that has no effect. I sleep on my stomach and really struggle to sleep any other way, but I imagine it can’t be helping. What are others’ experiences with this?
Good morning, my name is Roni Abdella and I have had problems with my Chiari malformation since I was in my late 20s. They didn’t catch mine until I was in my 30s but I had about 11 on the depths of my Chiari malformation. I’m 61 years old now and I have had nine surgeries had meningitis twice after some of them and I also Have head numerous injections of Botox in the back of my head. Everyone’s issue is different because even though you may or may not have a protruding tonsil, that’s shorter or longer. It doesn’t necessarily mean what will happen with your headaches as you get older. This last surgery that I just had they called it detethering because my spinal cord , attached itself to the scare tissue because they were so much scare tissue back there and I was starting to have a lot of problems with pain in my neck as well as the headaches. I’ve taken Emgality shots once a month and I also get the Botox injections every three months. I’ve taken Nurtec, and some of the other things that you’ve mentioned as well. You have to be your own advocate, so if you’re not feeling or getting any relief from what the doctors are prescribing then you need to let them know, and you need to be insistent on them, helping you to find a relief to the problem. Like I said, I don’t know if you’ve had surgery but I’ve had nine at this point. I hope that this helps a little bit, but Maybe you can talk to them about doing the Botox injections or sending you the Emgality injections that you do yourself once a month I know that there’s a combination of medication’s that help me clean the Botox stem gallery. The nurse took in sometimes I still have to take pain pills but I’ve been trying not to take those! I also have a shunt due to my spinal fluid, would not drain properly. Hope this helps a little bit dear have a great day, and happy Sunday!
Hi Austin, my name is Linda. I did not present with a lot of headaches and in fact in my 65 years have only had 2 severe ones and one was at age 5 and the other in my late 30s.
I feel for you because those 2 were more than enough to have to contend with. As far as things that I find helping me post Chiari decompression surgery they follow:
1-ongoing Chiropractic adjustments I had gone monthly for many years and now go every 3 weeks please note you must feel okay with whomever you choose preferably they are very familiar with Chiari Malformation.
2-I stay away from whatever will speed my system up and this includes not just caffein, but also certain nutrients start reading labels and avoid extensive exercise and also though it sounds silly stay away from amusement park rides
3-cool packing helps tremendously
4-a tens unit can help loosen up muscles and relieve tension
5-streatching and massage also help
I hope this helps. Have faith as life is not perfect for anyone it is just a little more unusual for those with nervous system issues. I had my decompression days before I turned 52 and I wish I had had it sooner. My brainstem had been compressed for too long and now my vitals go haywire unexpectedly and nothing can be done for it. I still feel better than I did prior to surgery and if I had not had surgery, I am sure I would be disabled by now. I continue to work full time and will for as long as I am able. Best wishes to you always.
Thanks for the replies everyone. My neurologist has not even mentioned the option of surgery.
Hi Austin I’m a newbie to this forum and was only diagnosed a year and a half ago when I had just turned 65. I woke up one morning with severe left sided neck pain and a feeling like someone was stabbing a knife in the back left side of my head. Throbbing I guess you would call it. I don’t like doctors so I let it go on 24\7 for as long as I could stand it. Finally went to PCP and they ordered a regular neck x-ray and scripts for a muscle relaxer and Diclofenac. The muscle relaxer just put me to sleep and I’m not supposed to take NSAIDS with my other two meds but the PCP said it would be okay. I finally gave up and took one and it didn’t help the pain at all. They referred me to a Neurosurgeon who ordered a MRI of my neck and it showed that I had Chiari Malformation 1 with 11mm descension. He immediately said I needed surgery and ordered all these tests for pre-op. I’m a retired nurse and I knew that I was not a candidate for surgery as I have two heart valve problems, and emphysema. I told him I would die on the table. So, since there is so little info out there for us I’ve been “winging” it since I found out. My PCP wanted a neurologist consult but we couldn’t find one that could see me until November. Since that was a six month wait I just gave up on docs. As to your question about progression of symptoms I can tell you that mine have progressed from the original pain to all types of symptoms mental and physical. Some weird and scary symptoms to me because I don’t have any support. What I’ve done to help myself is all natural things. First I prayed and told everyone to pray for me, then I did yoga, I do stretches, I bought a water pillow to hold my head in correct alignment but I’m a side sleeper so for stomach that wouldn’t help, I drink plenty of decaffeinated beverages every day, I eat things that have an anti inflammatory effect, I keep real peppermint candies on hand for when I’m nauseated, (which can sometimes last a week or more), I try not to bend over or put my chin down to my neck/chest, I use a heating pad, I use an ice pack when I get the ice pick headaches, I try to stay off of screens because that really hurts after awhile, I try to get at least 15 minutes of sunlight without sunscreen every day, I do controlled breathing, I take a multi vitamin multi mineral supplement every day, I use a travel pillow when Im reading to help hold up my head, I take a tablespoon of pure honey every day, plenty of fiber in my diet, I listen to music that soothes my soul, if all else fails and its a really bad day I wrap up in my favorite soft throw and curl up in my rocker recliner. I’m getting brain fog now so I’ll close. I hope some of this helps you and I’ll keep you in my prayers. -Sherry