Chiari Online Support Group

Constant dizziness?

Does anyone experience constant dizziness, what is it like? I don’t get any headaches but just vestibular issues. I get vertigo, unsteady, lightheaded, derealozation and a swaying or bobbing motion

My 11 yo daughter was diagnosed in August and it was the severe vertigo that began our search for answers. She had been diagnosed as a small child with migraines (although none of the medications for migraines never helped, either with pain or prevention). She had been having a terrible migraine( since early July 24/7 with no relief) but it was the sudden onset of vertigo and doubled vision that prompted me to take her to the medical university ER (approximately 3 hrs away) as our local ER said it was fluid in her ears. After a 2 more days of waiting to see if the Sudafed the local ER prescribed with absolutely no relief— if anything, she was worse. I loaded her up and drove to the university ER. It was there that they discovered the Chiari via MRI. Although, at this point, I had never heard of Chiari and had no idea because the doctors there said it was merely a notation for her chart and all of these symptoms were from the migraine ( and there was no fluid or infection found in her ears). From that point I began keeping track of EVERYTHING. I have a calendar(s) with every symptom, pain level, meds, doctors seen, tests done, etc. Thank God I did that because flash forward to almost 9 months later and not only has she never been rid of the “migraine” (9 straight months 24/7), she has presented with so many more symptoms—from trouble breathing, numbness, chronic joint pain, tachycardia, to the slow loss of much of her vision and so much more that it would be difficult and useless to list them all. Besides, it seems pretty much everyone on this forum has all the same things, so I am sure you’re familiar. She still has extreme episodes of vertigo— to the point that she will literally hold onto the side of her daybed in fear of falling off! It is a very regular symptom for her. I started to make a new thread when I came across this post because she has yet another new symptom as of the past few days. I’ve seen other posts about similar experiences but they were so old that I thought it may be best to start another. She is experiencing vibrations— not just in her body (those have happened before and from time to time). These “vibrations” make her feel as if there is an earthquake… by her description “it feels like the entire house is shaking not just me”. Has anyone else had similar experiences? Her startle reflex is back with a vengeance as well and all her senses are super heightened again. Any input, as always, is greatly appreciated!
With love and prayers :purple_heart:. Angel

Sure did - nine months after surgery though I had shorter bouts after my children that I did not recognize as such. Still occasionally get a return of symptoms but have by and large controlled them with primitive reflex exercises. My peripheral vestibular system is just fine, it is the processing part that gets confused. I guess you described it pretty accurately!

Hi Yes i have continual issues with vertigo unsteadness. I am unable to look up as this will set it off. Battling with nausea at the minute. Keep your chins up.

That is too bad about the vertigo. What have you done to help with it - and the nausea too it seems!

I feel like my brain gets overstimulated trying to process everything around me when I go into a store. I get dizzy and feel out of sorts, weak in my legs and rely on the grocery cart to steady myself. Concentrating or focusing on finding a certain item is difficult at best. Feels like the brain fog that so many describe. I feel very fatigued and drained by the end of my trip. What used to be a simply trip to the store, has become a major undertaking. My doctor has restricted my driving so that adds another layer of complexity that I deal with. As far as my everyday life around the house, I am learning what I can tolerate when it comes to movement and what I need to try to avoid. Pushing, pulling, lifting or repetitive reaching with my arms (when preparing meals and housework) I get pain and pressure in the back of my head/neck, then dizziness/brain fog. The downward pressure feeling, on my spine, is very present.
I was diagnosed with Chiari after having extensive sinus surgery April 2019. Woke up after surgery with headache and dizziness. Doctor said it was pretty typical and would get better, but seemed to stay with me. Finally had and MRI and they discovered the Chiari. I’m in the midst of vestibular PT, to retrain my brain to help it process things. I’m pretty new to this therapy, so can’t say that it’s doing much for me yet. The exercises are very fatiguing to my brain, and set me off for a dizzy wonky episode. Looking up and or down, also cause the dizziness and feeling that I’m about to fall. Hoping with persistence this PT will be noticeably helpful.
I’m very happy that spring is coming, as being outside is therapeutic! I have always been active and worked 60 plus hours a week. Such a drastic change of lifestyle this past year!
I’ve not been able to return to work, exhausted my short term disability and extended medical LOA and was terminated. Wondering if I’m eligible for SS Disability?
Wishing the best to you and all of my new found friends on this site. You’ve all been a godsend to me as you share your stories :two_hearts:

I found that I had to address the neurodevelopment aspect of vestibular training before other parts of physical therapy for the vestibular training was effective or useful rather than just hard and annoying! This would be primitive reflexes that have a vestibular component to them. Hopefully your physical therapist knows about them or can research them and see if they are a contributing factor for you through assessment.