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.
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.
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.
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..
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
and this… have him read section 3.1 specifically
Thank you I will. I’m so scared man honestly
Does anyone know if Selma is still here? Wonder what she would think about everything I know she’s heard a lot of chiari stories.
They are keeping me overnight for observation. They did a mri of my brain and Cspine and I’ll go over it with the neurosurgeon tomorrow.. The nurse told me the mri said borderline chiari but guess we will see what the neurosurgeon says.. Insaw the neurosurgeon before I had the mris and she didn’t think I needed to get a spinal tap until I had the mris done. God I hope this isn’t high pressure in my head I’ve read it can kill you quick..
Hydro and high ICP are similar but different things. Hydro is fluid inside the brain itself and high ICP is fluid buildup on top of the brain. I have high ICP and although miserable I’ve not heard of it causing death. It can lead to permanent blindness if not treated due to pressure increase on the optic nerve. There is a mad that is used to treat it called diamox. It has nasty side effects but it reduces the amount of fluid. I was on it for well over a year.
Hoping you get some answers soon
Without the proper testing it’s haed to say what it is or isn’t. I can only go by symptoms that I’ve had. I had throbbing pressure headaches that pulsed loudly and painfully inside my head. Couldn’t move my head even slightly without it. I literally heard my heartbeat every time I moved and the ringing in the ears was deafening. Also I had visual disturbances including bright flashes of light and black spots that caused loss of vision. I had many visual field tests and had significant abnormalities show.
If you proceed with an LP, be sure they are aware of your chiari because drawing too quickly can cause the brain tonsils to be pulled down further causing worsening symptoms. Also be aware of the chance of spinal fluid leak from this procedure. It happened to me and had to have a blood patch to seal it
I did have burning pain in my neck and back of head. And the shoulder blades. And the ringing in the ears (which I always have but gets intense with the pressure) is very high pitched and it’s literally all I can hear along with a helicopter sound thumping nonstop. Very frustrating.
I wouldn’t let anyone jump to inserting a shunt as those can cause more issues than they help sometimes. It was proposed for me but was a last resort. Most times the decompression surgery can help and sometimes the surgery can cause high ICP. Which is what happened to me after surgery no 1.
Well I saw a neurosurgeon about they scans I had yesterday and he said it’s a small malformation at around 5mm. He said he knows quite about chiari and he didn’t see any kind of blockage or anything and he said he didn’t think chiari was causing my symptoms... Which I don’t really believe that but guess I’m gonna have to investigate other causes. I did get a eye exam here at the hospital awhile ago and their was ok swelling of my optic nerves which is good but doesn’t rule out ICP..
I got discharged last night I still worry about having ICP... I did read I had moderate disk bulging in c-6 and c-7 maybe that could be causing the headaches and neck pain? It wouldn't really explain the ear and fullness in the back of my head though.. I just really wonder whats causing everything if not chiari. Is it less likely I have ICP with a clear eye exam?
Hi...have you had POTS ruled out? HHI?.....Chiari can come with other conditions, and until all testing rules these others out it is near impossible to say what is causing which symptoms. OR how to treat them and which one first....
Alright I’m really starting to get worried.. This heaviness I’m the back of my head is so bad along with the lightheaded spells. I’ve also developed nausea the past couple days does this sound chiari related?! The back of my head just feels so heavy and I’m having derealization where it looks like everything seems unreal I’m really scared I don’t know what to do :(
Please guys I’m really worrying today. I’m feeling really faint for some reason :( I’ve had everything checked out so many times so it’s gotta be chiari related right? The fluid and fullness feeling is really bad what could be happening??
YES, it can be Chiari related.....and it can be related to the weather in your area, including temps, and barometric pressure.....it can also be what you do activity wise as well......there are so many variables to what could be causing you to feel this way....including worry and stress, they factor in as well......
I just don’t know what to do I feel like I’ve done everything I could possibly do :(. I’ve been to the er countless times and they do nothing regardless of how bad I am. Every day gets worse I’m progressing fast and just don’t know what to do... Should I go back to the er and demand a spinal tap?
The ER can't help, only a CHIARI specialist can.....the ER is for life saving and to help with intollerable pain....outside of that they have no idea how to begin to treat someone with Chiari.
I don't think spinal tap will help in fact it could make you feel worse......
I’m really becoming so scared the lightheadedness is there constant even when lying down :( I want to go to the er again but don’t want it to be a waste of time again... The lightheadedness even at rest is what really worries me.....
Hi I am so sorry you are so stressed out over these symptoms and I know the ER will not be of any help to you.....so I know it will be a wasted trip, but if it helps you feel better going then maybe you should.
I can only offer info on what I know, and all I can suggest is to try to relax, keep hydrated as that can affect how you feel....and look at your weather....we all tend to be walking barometers.....and that too can add to the light headed feelings you experience.
I used to get like I was hyperventalating just with taking....my husband had a few suggestions for me on that one....but I do understand your being worried, afraid....etc....I was too....all we can do is try to see if our activities are a contributing factor, our diet, the weather....etc...then try to avoid some of the things that may add to the symptoms.
Has anyone had constant lightheadedness with chiari? I’m scared it could be something else :(
Well a little bit of an update. I was supposed to have my 6 month follow up th neurosurgeon yesterday but I had the appointment time wrong... So now I have to wait till October the 15 to see the neurosurgeon.. I wish I could say that I was better and not getting worse but the past couple of months I have progressed it seems.. The past 2 weeks my unsteadiness has been really bad I'm scared to even get up and walk because of it.. My lightheadedness and head falling feeling has gotten worse too :(. Should I go to the er about this? I'm so scared that I'm eventually not going to be able to walk on my own :(
Also for the past month I’ve been having a lot of skipped heartbeats I’ve read with the skipped heartbeats lightheadedness etc. it may be brain stem compression could it be?