Hello! I have been suffering with head pain for almost two years now. The thing is, I only get the headaches when I get up in the morning, bend over too much (picking up the house, for example) stretch a certain way and during crossfit depending on the exercise. My ears have also started to hurt from time to time. It feels like an ear infection but only lasts for a few seconds. I also have some ringing. Does anyone else have these symptoms? What level of Chiari is this? I've been to a neurosurgeon and he just gave me seizure medication but I'm not taking it. Thank you for your help! Xo
Hi Cocon. A couple of years ago I started having a lot of trouble with head pain when I got up in the morning. Head pain, brain fog, etc. Didn't want to move my head too much, or in the wrong direction. I went to my NS and he wanted me to try Neurontin/Gapapentin. This has been used for seizures in the past. Is this the seizure meds your doctor prescribed? I had tried taking it years ago for nerve pain I have in my neck and left arm, but didn't like the side effects. So, I decided at that time to just deal with the pain. My headaches in the morning were really affecting my quality of life though, so I decided to try it again. I felt an almost immediate difference in how I felt in the morning. Neurontin can make you sleepy, give you some lack of focus, etc. The side affects hit some more than others. But, I have found it to be a great help to me.
I also have ear pain. But, I don't know if mine is like yours. Mine is definitely from nerve pain. There is an ache that is always there to some extent, but then I occasionally have horrible shooting nerve pain that goes up into my head. Sometimes it seems to go right through my ear.
The Neurontin doesn't take away all the nerve pain. Not even close. But, some of the edge is taken off I think, and it definitely helps my head feel better.
Hello, My headaches changes with position and exercise also. There could be other issues going on, chiari comes with a load of related disorders. For me, it is Intracranial hypertension. So, my Chiari malformation isn't as "impressive" (long) as some but it is wide and causes crowding and therefore other issues. I would suggest a neurologist that understands Chiari. http://chiaricare.com/
Good luck!
Have you had a sleep study performed? Chiari can cause sleep apnea which can cause headaches upon waking.
I also have ear pain, but no one in the medical profession seems to think it is a problem.
Hi I have Chiari 1 and sometimes have headache and ear pain. They the doctors have me seizures medicine I didn’t take didn’t like side effect. Also certain exercises make it hard, decided not to give up . I am taking it one day at a time. Will keep you in my prayers , know you’re not in this journey alone.
Thank you for all your replies! I don’t have trouble sleeping. To explain my headaches better, they usually last 20 seconds or so and then go away. I don’t always get them as soon as I wake up in the morning. They feel like a very intense brain freeze and it starts in the back of my head and goes up around the back and to my forehead area. Anyone else get this? I know this is complicated! I feel horrible for the people suffering with more pain than I. I don’t want this situation to get worse. Thanks!
Hi,
Yes I get these headaches too. They get worse the more active I am. Have you been diagnosed?
I’ve been to two neurologists and one neurosurgeon and they said basically my tonsils aren’t long enough for surgery and gave me medicine but the medicine isn’t worth taking in my opinion because the head pain comes and goes quickly throughout the day.
Hello
The length of the tonsils is not necessary the big determining factor. It may be worth a chat with the next neurosurgeon/neurologist who actually looks at your MRI. My understanding is that the horizontal view provides the information on how much crowding is taking place in your spinal canal. We often just see and talk about the sagittal view which is the profile slice of a person. Perhaps they could have a look at that with you and outline how much or how little room you have there. A person can have a long and skinny tonsil hernia with relatively few symptoms or a short and wide protruding tonsil that is nothing but grief.
Ask those questions and good like I finding the medical help that you are looking for.
Cocon said:
I've been to two neurologists and one neurosurgeon and they said basically my tonsils aren't long enough for surgery and gave me medicine but the medicine isn't worth taking in my opinion because the head pain comes and goes quickly throughout the day.
Hi Coconut,I had the headaches but they were much worse when doing the things you described plus when I laughed,sneezed or strained in anyway like going to the toilet or even lifting my grandkids up.Happy to say the decompression surgery almost 2 yrs ago has taken the worst of it away. Growing up I had issues with my ears,lots of infections and earaches,had my eardrum patched in my 30s but started having problems again with ear pain a couple of yrs before my surgery for Chiari and the ringing started then too,it got really bad by the time I had surgery and sadly it has gotten worse ,my hearing was also affected by the chiari and I now have hearing aids which I'm happy to say cut out the ringing almost completely on good days. My chiari was 15mm and causing heaps of problems which was why I had decompression and duroplasty. Good luck ,hope you get some relief.
Hi Cocon, I have Chiari 1 and have the same symptoms as you. When I wake up one or both of my ears are ringing or feel blocked for weeks sometimes. I don't know about you but my ears are blocked and its difficult to hear because of the pressure in my head.
I have to take it easy with the way I exercise otherwise it can worsen the pain. sometimes the more I exert myself, the ore pain and fatigue I get. My neurosurgeon gave me similar seizure medication which did not work for me. I took it for 3-6 months after I was diagnosed and they actually worsen my condition or felt pain and other symptoms I never had before. But everyone's different. I hope this helps.