I have recently been experiencing sudden attack’s of pain down the right side of my head, mainly affecting my ear. The pain goes from my eye area to my neck. It then comes & goes for about 10 minutes, then I’m left feeling really tired & cant bend over without my head hurting. Wondered if anyone else had anything similar?
I’m guessing, but it sounds like your Trigeminal nerve is getting irritated.
I never had sudden attacks - but when I had lasix surgery done on my left eye, my trigeminal nerve gave me stabbing, knife-like agony for years! That was one my first Chiari symptoms. Since decompression surgery, the trigeminal nerve likes to ‘remember’ that old pain and rev back up - putting my face on fire once again. Now, I am able to quiet it down with small doses of amitriptilyne. (like - 2-5 mg is all I need.) Prior to the surgery, nothing under the sun was able to silence screaming nerves. Post-surgery, I can calm nerves pain with amitriptilyne - or in cases of sudden over-the-top nerve pain, I have lorazapam - which super-calms things down (But is addictive - so I have to use it sparingly.)
Have you had decompression surgery yet - if you’ve been diagnosed with Chiaris?
Thanks for your reply. Your pain sounds terrible, worse than mine. I went to see my neurologist today & had the diagnosis confirmed. He basically told me that there are so many symptoms he can’t say what’s ‘normal’. I take amytryptaline for stress & migranes already. I’m back at the hospital next month for a further scan to check my spine, then it will be decided if surgery is the best option, but it’s looking likely.
I have had very similar experiences since my surgery. The severity of what I call “episodes or attacks” vary in severity and lengthen.
My main difference from your description is, mine is limited to my left side. My symptoms have always been focused to my left side.
At times heat, heating pad may help. Primarily I seek out my bed, away from people and stimulation of any kind.
These episodes were far worse prior to my second surgery. Over past several years have been wirsening yet again.
Feel free to ask any questions. Jeff (Bluehusky57)
Thank you for your reply & advice. I will just have to wait for my next scan & see what happens.
While you wait, some suggestions.
As soons as you notice the episode coming on, regardless of severity. If your not already try stopping what your doing and assume your comfort position. Mine is laying down on left side, legs usual bent at knees, head supported by pillow (or combo of sweaters, anything you can flex into providing support for your head and neck). Prior to my decompression surgeries, my epsiodes include severe headache & sensitivity to bright light. If you been prescribed rx for pain, take it. If not take whatever your using now, try and stay in the postion until episode passes, or you feel bit better, best scenarion for myself: I would fall asleep (vary amount of time, few minutes to several hours). Usually I am in a better place after. Not unusual to still be tired, grogy for awhile after.
Over time I have learned to listen to my body. Was the most important advise I was given.
Wow, you just described one of my symptoms exactly!! Did not realize it could be part of the Chiari. I have always had ear pain/infections that resolve on their own so I figured that is what it was. Since I am newly diagnosed I am always wondering if all my symptoms including always bumping into everything is a sign of the Chiari acting up,. For some reason, I just never thought the ear pain could be connected. I just had a second MRI this past Friday, this one of the cervical spine. I have a feeling like you, I will be facing surgery but plan on doing everything I can to avoid brain surgery. I will be starting acupuncture on Monday and am keeping my fingers crossed that it helps lessen some of my symptoms. Thank you for posting this!
You are welcome. I’m still waiting for my next scan appointment to come through! Hope acupuncture works for you.
Thank you, I will give these a try.
Hope you’re keeping yourself in a good place and making the most of your days. Just wanted to check and see how your appointments went?
Recalled another tip for dealing with the experience that we both share. Great advice that I picked up along my journey.
Avoid reading, watching dramas, anything that possibly bring you down. Focus on comedies, other light fare. Good moods, frame of mine, especially laughing is a terrific potion against dark, grumpy and painful moods.
There is detailed evidence to support this theory. All I know, I have avoided the darkside for over 17+ years.
Sending positive thoughts, Jeff
Jeffrey M. Konspore
Thank you, that’s good advice. I have a baby too so have to be positive! I haven’t had my next scan yet. It’s next month hopefully. Thanks for checking in. Hope you are doing ok.