Not sure what is up

Hello All

I would like to know if anyone had any thoughts...

When I look up and to the left, not end range by any means, I experience symptoms of cognitive blunting, vague pain ranging from the occiput into the left neck and shoulder (nothing tender nor any changes with movement), vision disturbances (decreased peripheral field of vision, nystagmus), want to go to sleep even though I have slept well the night before, decreased balance with eyes closed, nausea, night-time anxiety, facial sweating, and abnormal facial sensation.

I had my first episode of this 4 years ago, very bad - unable to walk or talk or have a normal level of consciousness for 4 hours, followed by a two week recovery. The Emergency department had nothing to say and a neurologist would see me. The neurologist dismissed these concerns and indicated psychological assistance would be of value to my overall well being. I saw a therapist and took anti-depressants with no improvement. I have a better relationship with my mom but still have symptoms. I steadily got worse - new symptoms, I was eventually diagnosed with Chiari and had surgery. Much better afterwards with long recovery. I now find that this biomechanic movement is becoming a real problem in functioning! I "tweak" my neck a couple of times a week - to varying degrees of symptom number and severity. Symptoms last 1-3 days, which does not leave a lot of time for being normal.

I had stopped pursuing this issue as Chiari symptoms overshadowed this, but now this biomechanical problem is overshadowing my life and resuming activities. I saw another neurologist who at least isn't punting me to the psych department, but I do not get the idea that she has firm ideas. She is arranging testing but did not say what at our first visit. I will see on that front

Any ideas...


1 Like

Hello, first off. About 14 years ago I had an episode where I went to bed and didn’t wake up the next morning. My pulse was very faint. My wife and her grandpaw, tried to wake me for 30 minutes. He checked my sugar and it was fine, my heart rate was low, but I was still barely breathing. They rushed me to the local community hospital, where they done all kinds of different test. They then flew me by helicopter to a bigger hospital. They did all kinds of test. Given I was unresponsive this entire time. I finally came to late that Sunday afternoon. When I first came around, I couldn’t speak and it took a few minutes to start moving my hands and stuff. They couldn’t "supposedly " find anything wrong. They later told me, just before they released me, that I needed to see a shrink, that it was probably mental and I was faking it. A couple of years ago, I seen a neurologist, who blamed it all on migraines. I don’t know if that’s true or not, but it’s a scary feeling. I unfortunately live in Mississippi, so there are no doctors around here that knows what chiari is, or even how to help. That same neurologist, when I told him that I have chiari 1 malformation, said that he didn’t do surgery and that he thought I was just making it up. So, I haven’t been back to any doctor since other than for my BP meds.

Sorry for the long rant. I have come to find out that if they don’t fully understand something they often try to say your crazy and it’s all in your head. Get a second opinion, with hopefully a doctor, who really knows about what we deal with on a regular basis. Good luck.

You can't live not moving your neck. The only thing I can advise, is find a doctor who is willing to get to the bottom of this. Hope you find the answers soon!

Yes, thank you both for your replies. I am still searching for answers with the neurologist. She has me booked for an angiogram and has me doing a 3 month diary. Will see...

Well, I came to a resolution with this concern of mine I posted a couple of years back. I sure would like to hear from anyone else who has successfully gotten through similar symptoms or is currently experiencing the same. Chiari symptoms are kind of unique, but they do lump into similarities! Funny pain that does not make sense, funny sensations, weird responses to activity that should not be bothersome, dizziness, balance issues, vision disturbances that are not explained well nor controlled with medication…

That neurologist that I saw diagnosed me with a vestibular migraine and to try one medicine or the other - my choice. Unfortunately, she offered no trigger counselling, diet guidelines, nor any other treatment other than medication. From reading and discussing with a vestibular therapist, I was not convinced vestibular migraines was the answer nor medication the best solution. I tend to not respond well to medication and the list and percentages of side-effects was rather daunting.

After a long go of brain exercises, I no longer have all those crazy symptoms that I had had for a long time and that were only getting worse in terms of duration and ease of triggering them.

I did graded motor imagery exercises as outlined by the Neuro-Orthopedic Institute (a physical therapy based research organization in Australia). I had to start at the very beginning and worked slowly through each level of difficulty.

Unfortunately, no doctor was able to help me find this solution and I got more psychology pushed on me and my current family physician thinks I am a wackadoo. Maybe he will change his mind when I visit again without all the crazy complaints. Fortunately, I was able to tap into the Neuro-Orthopedic Institute resource as graded motor imagery is an app from them and there are also excellent published resources.

Hopefully others are able to find the help that they need.