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Chiari Malformation Community
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Avatar universal

Chiari, Worsening symptoms..

This morning I woke up up my neck really sore and feels on fire and so does the back of my head. The throbbing pressure isn’t as bad first thing when I’m in bed. Soon as I get up everything gets worse... Is this throbbing head pressure that is in time with my heart beat a chiari thing? Please someone respond.
29 Responses
Avatar universal
Today I woke up after a very good night's rest feeling substantially better, but for the prior three days I woke up with terrible neck pain and the typical sensation of pressure at the base of my skull. Your symptoms sound very similar to mine.

The throbbing sensation is also to be expected. Our herniations (especially when they are under extra pressure from blocked or diminished CSF flow) do move in almost piston fashion with each beat of the heart. Take a look at this very brief YouTube video showing the sort of 'piston' movement of the herniated tonsils. You can literally see the herniation moving up and down with each heart beat.

https://www.youtube.com/watch?v=WSwjMtn3Txo

My posture when sitting is one of my biggest problems, so getting up and walking helps me tremendously. For others, laying down helps them the most. Whatever works for you, I recommend getting into that position, or doing that activity to assist your CSF flow as much as you can until the episode passes.

I sometimes combine my walks or times I'm resting by laying down with breathing exercises. The breathing alone isn't going to change the herniation of my tonsils, but when I do it right it does bring my heart rate WAY down. And, in light of what we see in the linked YouTube video, where the herniation is moving up and down with each heart beat, you can imagine how this would be helpful in the long run for avoiding further herniation, and in the short term for easing the blockage of CSF flow, allowing the backed up pressure in our heads to slowly get past the herniation.
5 Comments
The throbbing is almost constant now could that mean the blockage is really bad now? What also concerns me is my balance getting worse.
When my blockage is at its worst I similarly feel terrible. Also, without a doubt that is when my balance, light headed feelings, and general 'fog brain' is at its worst.

This was validated for me last month when I had my latest MRI, which included a CINE study. I had been feeling lousy the entire week prior to the scan, and sure enough, my flow (while not completely blocked) was very diminished, creating a lot of pressure, headaches, worsened tinnitus, etc. for me.
How are things going with getting into see a specialist? I know things are tricky w/ your insurance at the moment. Would you qualify for Medicaid? Maybe you could find a provider that would see you with Medicaid.
Well I see my primary doctor Wednesday and I’m going to see if he will send me to a specialist I found in Nashville.
Great news... please hang in there. Focus on those things that you can do to alleviate your symptoms as much as possible in the near term.

I know in my case there are times where my workload just won't permit me to break away for even a walk when I'm not feeling my best. As I let those bad moments pile up on each other, I have found myself at times needing to take a day or more off work.

I try my best to listen to my body, and intervene with walks, breathing exercises, healthy eating, going to bed earlier in the evening, etc. to keep me as present as possible for my family and my work.
Avatar universal
A little clarification to my comments above about the herniation from our chiari malformations moving up and down with each heart beat. The specific reason we frequently feel throbbing in sync with our heart beat is because the cerebral spinal fluid (CSF) moves with each beat of our heart. So, particularly when a patient has diminished or blocked CSF flow, we feel that throbbing in sync with our heart beat, because with each heart beat your CSF is trying to cycle from the spinal canal, up to the brain, and back down again. That is what you see reflected by the CINE MRI in the brief YouTube video I shared in my last comment.

Also, sorry to have missed your recent posts until now. I was gone for the weekend, and pretty much offline the entire time.
Avatar universal
Didn’t you also say previously you had shortness when bending over and straining? Does hot environments trigger your shortness of breath ever? I know if I ever get to hot it’ll bring on a attack. I’ll get this burning feeling in my ribs and then feel breathless..
2 Comments
I never thought about the temperature having an effect on this shortness of breath and light headedness when bending over, especially when bending over to pick something up or even doing light duty work (i.e. picking up toys, etc.) when bent over.

However, now that you mention it, the worst episodes I've ever had (which were episodes where I thought I was going to pass out) did occur in recent years when working outside in the heat. That said, I should say that because I've always been a heavy sweater, when working in heat like this I drink TONS of water. So, I would not simply attribute it to dehydration. You might be on to something with heat impacting this symptom.
I’m just really concerned this is hydrocephalus or something this throbbing pressure is the worst it’s ever been today like my head is being crushed...
Avatar universal
Can chiari make your head heavy and feel full of fluid? I’m at the hospital now my head feels so have and feels full of fluid in the back :( I’m so scared
6 Comments
Not to mention the bad head pressure I hope this isn’t serious
I've felt lethargic, brain fog, neck pain and headaches sufficient enough to make my head feel heavy, like I just need to lay down, but never like it was "full of fluid". I hope the docs at the ER are able to help you get some relief. Just remember, ER docs are rarely going to know much about chiari, so you need to be prepared to inform them so they know what to look for.
Well the er doc just came in and actually sounded pretty knowledgeable about everything. I told him about the bad head pressure and fluid like feeling and fullness on my head and he mentioned doing a lumbar puncture he said my pressure could be high in my head. He also mentioned if it is high needing a shunt put in. I’m so beyond scared... :(
I’ve never had a LP and I’ve heard it can make chiari symptoms worse
My wife is a PA at University of Michigan's NICU. They do shunts quite a bit there. While there is a risk of infection, they are pretty safe, and if the pressure in your head is off the charts, it would likely give you a lot of relief.
Share this link w/ the doc... https://asap.org/index.php/medical-articles/spinal-taps/
Avatar universal
and this… have him read section 3.1 specifically

https://www.sciencedirect.com/science/article/pii/S2352872917300295
Avatar universal
Thank you I will. I’m so scared man honestly
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