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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.
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.....
COMMUNITY LEADER
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 don't think spinal tap will help in fact it could make you feel worse......
4 Comments
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.
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.
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.
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?
1 Comments
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.
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.
COMMUNITY LEADER
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......
1 Comments
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?
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??
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 :(
5 Comments
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?
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..
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