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.
31 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.


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.
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..
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
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

Avatar universal
Thank you I will. I’m so scared man honestly
Avatar universal
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.
She is still part of the site, but she is not always online.
Avatar universal
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..
Avatar universal
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
I’m suppose to hear something from the neurosurgeon about the mri results and see what he wants to go. Surely he wouldn’t wanna do emergency surgery?
I don’t know why I’m so terrified of surgery.. I’m scared I won’t wake back up or I’ll have a complication or something..
Does this sound like ICP??
Avatar universal
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
Thank you Kerri. I guess it could be ICP because I do have the throbbing pressure when I stand and stuff. Did you ever have burning pain in the back of your head and neck? Was the ringing in your ears high or low pitched? I don’t really have a lot of ringing in the ears just more of a throbbing pressure that goes with my heartbeat.. Just seems like my symptoms have progressed a bunch in the past month
Avatar universal
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.
I really think it’s ICP just from research and look at other people’s mris. I noticed my optic stuff is being smushed on the scan and I’ve heard that’s characteristic for ICP
Did you also by chance loaves liquid sounds in the head like the sound water makes going through skimmed water hose?
Kinked I mean
I don’t know if I would call it liquid sounds but I have a whooshing feeling like my brain is swimming. Kinda hard to describe
Sounds like they are gonna try to send me home without a spinal :(. I could lose my eye sight or worse... Just don’t get why they can’t do it.. I’m starting to get the ringing in my ears now..
Sometimes things happen for reasons we can’t explain and can be a blessing in disguise. Maybe the person performing the LP could’ve done more harm than good. Have you ever had vision field testings or your eyes dilated? They can see high pressure that way also. And they will look for papilledema which is swelling of the optic nerve caused by high ICP. Maybe you could go that route
Yes it’s been over a year when I had the eye test done but I probably need another one. Yeah you are right about everything happening for a reason just wish I could understand it..
It would prob be a good idea to get those testings. Might answer more questions thank you think. And I’m still searching for my reasons also butteying to power through all the madness chiari causes.
Kerri thank you for all your advice I appreciate it more than you know
I think we can all relate to the fear and confusion when you’re new to chiari. It takes time and I still have questions. But just know that we are all here for each other. No one can understand more than a fellow chiarian

No need to thank me, but you’re very welcome
Avatar universal
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 meant their was no swelling of the optic nerves.
Avatar universal
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?  
620923 tn?1452915648
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....
HHI? How do you rule out pots? I know going from lying to sitting to standing my blood pressure doesn’t drop at all.
They do a tilt table test for POTS. HHI ...intercranial hypertension....which I believe you felt you might have.....until things are ruled out, you have to consider everything.
Well I did have my eyes checked and my optic nerves looked good. I read that they become damaged if you have intracranial hypertension.
Well then it could be Chiari, EDS and a few other things like your activities, or the weather......
Avatar universal
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  :(
Everything has thrown me into a deep depression :( I’m so scared I’ll drop dead....
Also with the nausea I have this bad taste in my mouth all the time..
I am very sorry you are so distressed, and I wish I knew what to tell you to help you with the anxiety you have in addition to all your symptoms......I am familiar with the feelings you are having....and I can not say difinativly they are Chiari as I do have several other related conditions.....but, I do know how you feel.

Did you look into the NIH for clinical trials to see if you qualify for any?
Hope you’re doing well
Thank you I’m honestly just trying to do the best I can.... Just so tired of the fullness and pressure feeling and almost constant woozy feeling... I do have an appointment with the neurosurgeon June 28th which is over a month away.. I talked to the neurosurgeons nurse yesterday and she said they were probably gonna order the cine mri. I just hope I can make it to the appointment..
Avatar universal
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??
620923 tn?1452915648
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 definitely do think stress is playing a big factor in everything... I found a old cat scan report from 2015 that said 6mm chiari and according to the mri I had last week it’s still 6mm.. So why would my symptoms be getting worse if the herniation isn’t changing?
Avatar universal
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?
I've been offline as of late and just noticed your posts. Forgive me if you've mentioned this before now, but have you been diagnosed w/ intercranial hypertension (IH)?

I assume not, and this is why they'd want to do the spinal tap to check for excess CSF. Obviously we discussed this earlier, and the associated risks. (I believe especially for patients w/ stability issues, like maybe EDS??)

That said, I think there are precautions an informed chiari specialist could detail (or maybe the precautions and guidelines are already published somewhere out there) that can be followed to reduce the risks for CSF leak problems that could lead to further sagging of your herniation.

Otherwise, there are at least indicators out there, such as the following, that could at least give a reasonable amount of evidence of IH.

For instance, by MRI (I believe) it could be indicated (or at least hinted) by a finding of CSF in the pituitary sella,  by a flattening of the back of the eyes' globes, by findings of large pockets of CSF, and maybe more. (I'm not an expert on this matter, so my knowledge is limited here.)

A neuro-ophthalmologist can also look into your eyes and verify this flattening if the relevant MRI images are not available (though, my understanding is that a MRI would normally be ordered to verify what the ophthalmologist found).

Often times, patients with IH will also complain of headaches or head discomfort that is worse when laying down, and made better by getting up. I assume this is because when the head pushes against the pillow, mattress, floor, whatever, it applies a certain amount of pressure on an already inflated pressure created by IH.

This is my best non-professional advice for determining if, in fact, you are suffering from intercranial hypertension. Beyond this, you really need to fight like mad to get yourself in front of a chiari specialist. Only they will be able to most safely navigate the issues you are experiencing.

620923 tn?1452915648
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 just really worried because my lightheadedness is constant and it’s hard to walk because I feel so unsteady..
With me, the high ICP causes positional unbearable headaches and sometimes will wake me from a dead sleep with the worst headache ever. If I move my head up and down or side to side I get a whooshing thumping sound. Also if my heart rate is increased it pulses loudly.

Some of what you’re experiencing could be that or it could be a combination of things like POTS and chiari.

I agree that the ER isn’t of much use. A specialist is where you need to be. If you’re able to go to one, that’s your best option.
Well my head pressure and headaches never really woken me from sleep I don’t think. So maybe it’s not ICP? I’ve also just had my eyes check d and my optic nerves looked ok.
I get frequent "high pressure" headaches typical of intercranial hypertension. While it is sometimes the case that these pressure headaches can develop over the course of the day, usually I wake up with them, and they are only resolved by me getting up and moving.

Occasionally the pressure headache will be severe enough to wake me from my sleep at which point I get up because I wouldn't be able to tolerate laying down with them any further. They get better and are resolved as time goes.

And, while as these pressure headaches progress, they regularly reach a point where I feel pain, pressure, and at least some modest discomfort behind my eyes, my most recent MRI does not show any flattening of the ocular globes (thank goodness). But, when the headaches are particularly intense, my vision gets blurry.

I'm looking at getting formally tested for this in the near future.
Avatar universal
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.....
620923 tn?1452915648
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.
Avatar universal
Has anyone had constant lightheadedness with chiari? I’m scared it could be something else :(
Avatar universal
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 :(
I keep getting feeling like my head being hit by ocean waves like a back and fourth wooziness... Every day I just keep declining I'm so scared of not being able to go to work and take care of my family...
Avatar universal
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?
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