Chiari Online Support Group

Describe Your Dizziness

I understand that dizziness is one of the main symptoms of Chiari. I am wondering if you all would be willing to describe what your dizziness feels like. My doctor that I am seeing is now telling me that he does not think that I have Chiari but benign tonsillar ecotopia because my CSF flow is normal. My tonsills are extended by about 4mm.

There is nothing benign about how I feel. When I look up slightly and move my neck, I feel dizzy. The same when I look down. And when I get out of bed in the morning I feel dizzy as well. Its not vertigo but more a lightheadedness. Often but not always, I feel dizzy when I go from a sitdown to standing position.

Any of your thoughts would be appreciated.

I have a CM1 with a 22mm decent and all of your dizzy symptoms are exactly what I experience. I’m also thinking about surrendering my driving licence as when I turn my head to the side to check when reversing my car, I also go dizzy (lightheaded). This also makes me feel sicky and causes a shooting pain up my neck and into my head because of pressure. I hope this information about my symptoms help and I wish you the best and hope you get the right diagnosis soon.

I get this look-off-the-cliff feeling when I either move my head… or sometimes even when I just move my eyes! I also get light-headed going from sitting to standing. The last thing I wanted to mention is nausea almost always accompanies these feelings. Hope that helps some! Ps. My chiari is "only" 6 mm, and I have a range of symptoms.

Ah dizziness! I had dizziness for another 9 months after my surgery and it always seemed really surreal when I would move my head and I would feel light headed and not quite right in my body. This would happen when I would turn my head in standing, or in the car, or rolling over in bed, or tipping my head back to shower, or walking. You get the picture. I thought that it seemed like something you would feel when on hallucinogens. The dizziness would fluctuate in its intensity but never went away. I had numerous tests for the source of my dizziness but nothing was positive.

At that nine month stage after my surgery, I was still boggling the neurosurgeon, the neurologist, and the general practicioner with my strange symptoms that would not go away. I then found a physical therapist who was familiar with Chiari folk and their symptoms. He outlined that Chiari patients also experience the emergence of primitive reflexes.

This happens as the frontal portions of the brain become stressed (that brain stem compression affects other parts of the brain too) and no longer function as effective suppressors of these brain-stem originating primitive reflexes that normally go away by 2-3 years of age. There are a whole bunch (about 70) that are known and there is no rhyme or reason as to which ones emerge again when you have Chiari. That is why some people are dizzy and some are not. Everyone's brain is different.

There is a group of primitive reflexes that are vestibular driven. What this means is that when the vestibular system is stimulated by head movements this elicits the primitive reflex and causes dizziness. It should not, but because the primitive reflexes are present, those head movements result in dizziness.

Nice to know what can be a source of dizziness but what to do about it? I was given a series of exercises for each of the primitive reflexes that I had and was affecting my equilibrium. The reflexes were, Tonic Labrynthine, Moro, ATNR, and STNR. I did the exercises 2-3 times a day and had no balance issues after two days.

DISCLAIMER: not everyone's results will be the same. I say that, but the physical therapist did say that these reflexes are fairly quick to respond to treatment unlike some of the other reflexes. If you are pre-surgery you will need to do them on a regular basis to keep the reflexes at bay as the brain still remains under stress. Also, pre-surgery neck extension can be a killer with bringing on the Chiari headache and other symptoms so care is necessary in minimizing extension but still doing the exercises.

Well, good luck in finding someone who can help with all those balance issues that are out there. Some centers for neurologically delayed children can be knowledgeable about this too. They just need to know how to extinguish the reflex not just elicit it. Fine distinction but necessary if you want the reflex to actually go away. No, you are not crazy but unfortunately our doctors tend to think that we are. So go out there and find someone who is knowledgeable in what you need!

Who was your physical therapist and where?




gabby jazzypants said:

Ah dizziness! I had dizziness for another 9 months after my surgery and it always seemed really surreal when I would move my head and I would feel light headed and not quite right in my body. This would happen when I would turn my head in standing, or in the car, or rolling over in bed, or tipping my head back to shower, or walking. You get the picture. I thought that it seemed like something you would feel when on hallucinogens. The dizziness would fluctuate in its intensity but never went away. I had numerous tests for the source of my dizziness but nothing was positive.

At that nine month stage after my surgery, I was still boggling the neurosurgeon, the neurologist, and the general practicioner with my strange symptoms that would not go away. I then found a physical therapist who was familiar with Chiari folk and their symptoms. He outlined that Chiari patients also experience the emergence of primitive reflexes.

This happens as the frontal portions of the brain become stressed (that brain stem compression affects other parts of the brain too) and no longer function as effective suppressors of these brain-stem originating primitive reflexes that normally go away by 2-3 years of age. There are a whole bunch (about 70) that are known and there is no rhyme or reason as to which ones emerge again when you have Chiari. That is why some people are dizzy and some are not. Everyone’s brain is different.

There is a group of primitive reflexes that are vestibular driven. What this means is that when the vestibular system is stimulated by head movements this elicits the primitive reflex and causes dizziness. It should not, but because the primitive reflexes are present, those head movements result in dizziness.

Nice to know what can be a source of dizziness but what to do about it? I was given a series of exercises for each of the primitive reflexes that I had and was affecting my equilibrium. The reflexes were, Tonic Labrynthine, Moro, ATNR, and STNR. I did the exercises 2-3 times a day and had no balance issues after two days.

DISCLAIMER: not everyone’s results will be the same. I say that, but the physical therapist did say that these reflexes are fairly quick to respond to treatment unlike some of the other reflexes. If you are pre-surgery you will need to do them on a regular basis to keep the reflexes at bay as the brain still remains under stress. Also, pre-surgery neck extension can be a killer with bringing on the Chiari headache and other symptoms so care is necessary in minimizing extension but still doing the exercises.

Well, good luck in finding someone who can help with all those balance issues that are out there. Some centers for neurologically delayed children can be knowledgeable about this too. They just need to know how to extinguish the reflex not just elicit it. Fine distinction but necessary if you want the reflex to actually go away. No, you are not crazy but unfortunately our doctors tend to think that we are. So go out there and find someone who is knowledgeable in what you need!

I have similar symptoms. My dizziness comes on with movement and also when I sit upright for a while. It’s like wearing glasses that are too strong for you. I had decompression 7 weeks ago and the dizziness is slightly more prevelant, kinda feels like I’m drunk almost. I would love to know where you found the physical therapist who helped.

TKAZH, the dizziness each Chiara patient feels can vary, so I'm not sure dizziness alone is indicative of a Chiari. What IS indicative is blocked CF flow, and yours is normal, according to your doctor. BTW, how did your doc. determine your CSF was normal?

As much as I hate the daily bouts of dizziness, If it weren’t for the dizziness, I would not likely had the MRI when my migraines increased from 4/month to 4/week and found out about my Chiari…Drs are still trying to tell me that my symptoms are not caused by Chiari (5mm) and that I am just a “migrainer”. So for now we are focusing on pain management. Had tests done for dizziness and prescribed vestibular therapy. After living with it and pondering the triggers, I have linked my dizziness to any activity that involves my neck and arms…I notice when I drive, push a shopping cart, get laundry from dryer, walk dog/hold leash, etc… Funny enough, I can actually do a light jog on a treadmill and feel “normal” during the exercises as long as I keep my head straight and don’t hold onto handrails. I feel worn out and dizzy later, but worth it to me to have those 30 minutes of feeling like my old-self (and get some exercise!) My dizziness is vertigo…room spinning, feeling like my surroundings are moving faster than me. I feel like I just got off a roller-coaster. And with it I always have a feeling of fullness in my head…that feeling you get if you took off a hat after wearing all day…on the extra dizzy days my vision is less sharp and takes longer to focus. I go to NS next month and will request cine MRI. Thanks for asking this question, I’m always so fascinated by the similar CM symptoms and advise of the other folks here…

what are the PT therapies that helped for lightheaededness?

PT therapies for dizziness include:

  1. Neurodevelopmental vestibular rehabilitation focusing on primitive reflexes. This therapy looks at the brain’s ability to process the vestibular information it receives from the body.
    There is a post on this site under “Newbies Guide to Chiari” titled “Dizziness and Chiari”

This is a very important component for vestibular rehabilitation for Chiari folks as the brain is so affected.

  1. Trigger work in muscles that can contribute to dizziness and vision problems, the sternocleidomastoid muscle is a perfect example. I do find that trigger release is important but often needs to be supplemented by strengthening and normalizing muscle function for longer term benefits. Motor control of the neck and shoulders can be part of the rehabilitation process at this point.

“The Trigger Point Therapy Workbook” by Clair Davies is an excellent resource to do the muscle trigger part on your own.

  1. More standard PT approach to vestibular training involving eye and head movement and challenging balance in a variety of ways. I have found that brain function and muscle contribution to balance problems need to be addressed first as they are the underlying problems to the Chiari based balance and light-headedness issues.

Hope that helps your search!

How do you find a PT who knows all this?

A very good question that is answered with " it is hard, very hard".

There are a few ways to go about finding qualified people. Depending on where you are, some approaches may work better than others. A therapist advertising “vestibular physical therapy” will not always suffice.

  1. Find a therapist who advertises “neurodevelopmental vestibular rehabilitation” or “primitive reflexes” or “frontal sign release”. Unfortunately, the language is not standard and is often not listed as clients do not know what they are. Ask what courses they have taken, do they actually practice what they have learned at these more advanced courses. Check out the courses on line. Do they look legit and research based?

Of course, doing the exercises outlined here will get the job done as well for free. The problem is that no one is assessing you and winnowing down or correcting the exercises.

  1. Contact national or state vestibular/dizziness organizations that have a list of physical therapy practitioners. Are any close by? What about outfits that offer primitive reflex training… do they have a list of people they have trained in your area?

  2. Concussion / Traumatic Brain Injuries / PTSD centers that have a research component attached to them may have skilled practitioners that are familiar with primitive reflexes. Again, courses and practicing in this more advanced area of vestibular treatment is vital.

  3. Muscle trigger work involves people who have studied muscle trigger work and are extensively familiar with books by Travell and Simons, and the signs, symptoms, and referral patterns of affected muscles. If they do not know who Travell is, move on!

  4. Finding someone with standard vestibular training is much easier. They should have the “eye machines”, have been working for at least 5 years predominantly in vestibular practice, and schedule at least 60 minutes with just you. There should be visual charts, lots of eye and head movement. Again, know that doing this approach first if you have vestibular processing problems and muscle triggers will not really help a whole lot.

The chances of finding a physical therapist who knows all the components is slim. Asking people about their knowledge-base is difficult and they can feel challenged. If I have started a conversation with someone who does not have what I am looking for, I always try and ask if they know someone who could help with my search.

I have to emphasize that assessment is key for getting the right treatment for you. I can say all I want about typical problems that Chiarians face with dizziness but I do not really know what is wrong with you. Of course, I also do not have a regular physical therapist to monitor and progress me as I would like. Doing all the primitive reflexes on your own is not a bad thing for your brain, nor is working on the muscle triggers that you may have.

Start with the exercises listed here, while you are looking for neurodevelopmental vestibular therapy. Get the book while you are finding someone who can deal with the muscle triggers. You are going to be doing the work with yourself anyways so might as well get started!