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Head pressure
Has anyone with Chiari experience head pressure?
I have a 12 mm herniation with CSF blockage but haven't seen a NS yet.
Aside from the body symptoms, my head has a whole list of them and pressure is definitely one of them. They come and go and change, so I never know what kind of day it will be. Or even the next hour.
But for the past year I have had an ongoing headache with pressure behind my eyes. I've had it for years but not everyday like this. It hurts when I press above my right eye. The back of my head is very sensitive (where the herniation would be) so if I lie on it during the day too long it kills me. I have to use a very flat pillow at night and it is usually better in the morning.
Problem is I am so tired constantly that I want to lie down on the couch a lot. I use a very soft blanket bunched up behind my neck as pillow and lie to the side.
I also get the cotton brain. Hate that one the most I think. It gets so bad it feels more like a stone brain, like the neuron activity is coming to a complete halt. I stare at the tv and can't comprehend it. And reading becomes almost impossible to understand. Fortunately that too doesn't last forever. Not yet, anyway. Otherwise I will be a zombie! This is a symptom I have had all my life, but fortunately it isn't every day and I was able to work for many years on and off.
I don't have tinnitus beside a few seconds of it here and there so I can imagine how horrible that would be constantly! But I do get the wooshing and pounding noise with my heartbeat. Also sometimes I can hear my heart beating in my left ear like the vein is pulsating too strongly.
I feel lightheaded and dizzy and find myself staggering lately. That's all I can think of for the head symptoms. Thought I'd add mine in here too lol. Best wishes to all of you!
Aside from the body symptoms, my head has a whole list of them and pressure is definitely one of them. They come and go and change, so I never know what kind of day it will be. Or even the next hour.
But for the past year I have had an ongoing headache with pressure behind my eyes. I've had it for years but not everyday like this. It hurts when I press above my right eye. The back of my head is very sensitive (where the herniation would be) so if I lie on it during the day too long it kills me. I have to use a very flat pillow at night and it is usually better in the morning.
Problem is I am so tired constantly that I want to lie down on the couch a lot. I use a very soft blanket bunched up behind my neck as pillow and lie to the side.
I also get the cotton brain. Hate that one the most I think. It gets so bad it feels more like a stone brain, like the neuron activity is coming to a complete halt. I stare at the tv and can't comprehend it. And reading becomes almost impossible to understand. Fortunately that too doesn't last forever. Not yet, anyway. Otherwise I will be a zombie! This is a symptom I have had all my life, but fortunately it isn't every day and I was able to work for many years on and off.
I don't have tinnitus beside a few seconds of it here and there so I can imagine how horrible that would be constantly! But I do get the wooshing and pounding noise with my heartbeat. Also sometimes I can hear my heart beating in my left ear like the vein is pulsating too strongly.
I feel lightheaded and dizzy and find myself staggering lately. That's all I can think of for the head symptoms. Thought I'd add mine in here too lol. Best wishes to all of you!
Ps I also have chronic pan sinusitis. Five years ago, my MRI said "some sinus disease. Today, my tinnitus is much stronger, and the most recent MRI says "chronic pan sinusitis". I don't have a lot of mucas and no allergies, but the swelling alone might affect the eustatian tube/nerves. Just a thought.
1 Comments
Huh! CP sinusitis! I'll DEF. keep that in mind and ask. That's a good lead. Yes, I had obstruction of flow, crowding, herniation and after the surgery, my (ex) NS said my brainstems was severely pinched-more than he expected. (now wondering if it was pinched so bad due to something never addressed by him- which is a retroflexed odontoid). The "eeeeeeeeee-rrrrrreeeeeeee" is the exact same sound now(when it returned) as it was pre-surgery. I though "heaven-sent"...I felt like Scrooge from "A Christmas Carol"...dancing joyously through the streets w/the joy of life (all that, but from the confines of my bed-not even an Irish jig was done- but I FELT like that!;) ) So, it was like a nightmare when I woke in Dec. 26th to that same unrelenting sound again. I'm with you- I'd think that if an MRI would show nerve impingement & at least then there would be an answer. I'm hoping that perhaps ... Just perhaps, it needs more time to heal. I'm hoping my NL will request an MRI for such (she's amazing & is a "puzzle" person..so, I think she'll help me with this one, esp. as I've no NS anymore/at the moment). I'm the same as you (or will be w/next ENT appt). They can't find anything wrong & hearing is great, which just as you feel, is of course great! I think we Chiaians fear getting a test back that is looking for one thing, but something else shows up that we don't want to add to our "list".
I see my NL on the 25th...so I'll let you know what happens-what she am wants to do-tests, etc.
I too have horrible gerd...for as long as I can remember- but prob. the worst over the last 10yrs. Interesting- I'll have to look into that too. On my last 2 MRI's, it also shows abnormal (enlarged) parotid glands. She wanted a biopsy done- but then I went into the Chiari Surgery- she seemed a bit unsettled w/that finding (esp. as I'd already been tested for things like Lupus, Sjogrens, MS, etc. all negative). But, I'm curious, if they're swollen/enlarged, could they be pressing on a nerve that's triggering the tinnitus? My goodness girl, I bet we never thought we'd have to know these round-abouts & terms & doing detective work, putting together the puzzle that is our body, eh?
I can't believe you've lived w/tinnitus so long! It's utterly the mist nagging thing..and I don't know if it's like this for you, but for me, it's like this constant "reminder" that something(s) in my body is not right- yet it can't be figured out what. It could be Chiari...pressure, be it neck CSF, nerve...
OR, it's truly an alien in my head, ruling my own body just as an experiment. Lol!
I will certainly keep you posted in this. I'm still hoping to be able to let people know that the "brick" has been resolved. But that, again, could just be an alien stabbing me in the back of my head for the fun of it.
;)
Keep me posted too!!! Thanks for putting up w/my long arse replies!
<3
~emme~
I see my NL on the 25th...so I'll let you know what happens-what she am wants to do-tests, etc.
I too have horrible gerd...for as long as I can remember- but prob. the worst over the last 10yrs. Interesting- I'll have to look into that too. On my last 2 MRI's, it also shows abnormal (enlarged) parotid glands. She wanted a biopsy done- but then I went into the Chiari Surgery- she seemed a bit unsettled w/that finding (esp. as I'd already been tested for things like Lupus, Sjogrens, MS, etc. all negative). But, I'm curious, if they're swollen/enlarged, could they be pressing on a nerve that's triggering the tinnitus? My goodness girl, I bet we never thought we'd have to know these round-abouts & terms & doing detective work, putting together the puzzle that is our body, eh?
I can't believe you've lived w/tinnitus so long! It's utterly the mist nagging thing..and I don't know if it's like this for you, but for me, it's like this constant "reminder" that something(s) in my body is not right- yet it can't be figured out what. It could be Chiari...pressure, be it neck CSF, nerve...
OR, it's truly an alien in my head, ruling my own body just as an experiment. Lol!
I will certainly keep you posted in this. I'm still hoping to be able to let people know that the "brick" has been resolved. But that, again, could just be an alien stabbing me in the back of my head for the fun of it.
;)
Keep me posted too!!! Thanks for putting up w/my long arse replies!
<3
~emme~
Hi Emme, you are funny and provide a great, informative read, lol, so no worries! Did your tinnitus return sounding exactly the same? I was just wondering if it may take time for the nerves to heal properly.
I do think it's possible that the ringing is Chiari. I've had it all my life, just not as strong. I'm assuming, since you did have surgery, that there was csf obstruction. I don't have that. I wonder if they can see the nerve impediment on the MRI scans? If so, it would be pretty clear and easy for them to diagnose, wouldn't ya think?? I saw two ENTs that found nothing. My hearing is good too. Lately, I read that gerd can cause ear symptoms. I'm being checked for anything that could possibly cause gerd symptoms (have a great new GP). I am also having my cortisol levels checked, which can cause all sorts of problems too. I have learned to deal with the constant "hisssss" though it would be nice if some of this testing could give me some answers. All my testing comes back ok, which I am happy about of course. I just hope that new direction this doctor is looking will help. Please keep me posted with what you're able to find out about all of this. I will do the same.
Heather
I do think it's possible that the ringing is Chiari. I've had it all my life, just not as strong. I'm assuming, since you did have surgery, that there was csf obstruction. I don't have that. I wonder if they can see the nerve impediment on the MRI scans? If so, it would be pretty clear and easy for them to diagnose, wouldn't ya think?? I saw two ENTs that found nothing. My hearing is good too. Lately, I read that gerd can cause ear symptoms. I'm being checked for anything that could possibly cause gerd symptoms (have a great new GP). I am also having my cortisol levels checked, which can cause all sorts of problems too. I have learned to deal with the constant "hisssss" though it would be nice if some of this testing could give me some answers. All my testing comes back ok, which I am happy about of course. I just hope that new direction this doctor is looking will help. Please keep me posted with what you're able to find out about all of this. I will do the same.
Heather
Haha, I was going to say what a great way of explaining the foggy, hazy, achey headaches we can awaken to, but you beat me to it. Has anyone ever explained the reason for the ear fullness to you? I had one ENT tell me he thought it was my neck that caused the ear symptoms. I am still in the process of figuring all of this out. My herniation is 11-13mm but with good flow and no obstruction?? I wonder if the pressure alone could do it?
1 Comments
Hey lynn...Well, I was sent to an ENT-full work up-imaging, to for specifically look ear.. (Before surgery) and all the usual inner -ear tests. But, they found absolutely nothing wrong. (I didn't tell him about Chiari b/c I didn't want him to jump on that w/o coming to his own conclusion first). His conclusion was it must be something Neurological. After I told him about the Chiari, he said that it can definitely be due to CSF flow as well, it can be due to nerves that are being compressed&become irritated, and causing an array of reactions.
Then, going back to my NL, she agreed it was likely due to the Chiari-be it from the CSF flow but in her opinion, was due to compressed nerves. I was then sent back to my NS w/this info., he said it was sounded like compressed nerves- (I don't get a "heartbeat" sound, or waves like a rush of water sounds. Just a non-stop- Jet 747 sound, sometimes accompanied by a high pitch "eeeeeeeeeeee"...it never goes away- it's either bad or really bad. Either bad or stamped up version of bad. Intense&relentless) So, during the surgery, I was told my forearm could be sore after surgery b/c they would be putting a series of needles there, so that they can find out which nerves were being effected - apparently, said nerves can be detected in your forearm! ( this truly fascinates me...how tinnitus, which is being being brought in by a compressed nerve in the brain that transmits as malfunctioning to the ear nerve/whatever, can be detected in my forearm '! Crazy!) Well, apparently, something worked b/c when I truly came to/ truly "woke up"( vs. being mumbling, incoherent lump) I felt like my whole body jumped out of the bed for a second, with the realization that for the 1st time in soooo long, the roar-ring was 100% gone! My NS said many nerves read as "decompressed" according to the needle get -up on my arm(haha- funny memory about the nurses kept telling me my forearm would hurt, kept asking me about it, the "spider bites" as they called it can hurt. Yet all I could think was- I don't know, I don't think so, I've no idea but I DO have this major pain going up my neck and my head is killing me! lol...those "spider bites". All this while my tongue was so swollen I couldn't speak-we were communicating by paper!)
BUT anyway, yes, the "thick dense cotton brain" was gone -for me, the varying degree of thick dense, distorting cotton brain&intensity of tinnitus went hand in hand. Apparently,it was all nerve related. It was a most welcomed change-to be rid of that heaviness & roar-ring.
Unfortunately, on Dec. 26(day after Christmas), I woke to the unwanted dinner guest who'd returned. It has not let up since Dec. 26th. :(
When I brought this up to my NS, he said that BOTH- the thick fullness on head/ears, as well as the tinnitus had absolutely NOTHING to do w/Chiari. This was confusing- I'd wondered, what happened to the NS I'd seen before this-who claimed that these things were directly linked to Chiari. Everything he was saying was complete contradictory to what I myself knew, but also what he'd always said before!
So, long story not so short, my NL sent me to see an ENT one more time to be sure/confirm its not inner ear&such. She's already said she believes it's Chiari- nerves that are still/re-compressed.
So, I'm at that point. My take (from the 1st ENT & my NL) is that the fullness could be from pressure due to interrupted CSF flow, but also, compressed nerves can cause strange signals to the brain, creating such a feeling.
I'm sorry this is such a long answer... It seems I'm somehow completely unable to write a short, sweet, to the point reply. Ugh. As well, I've to throw in a story or two of my experiences- (which are prob. the most unnecessary of things!)
I do plan on addressing it in a hard way-non"light mention"...I'm going to be very assertive going about this-the dense distorted cotton brain, tinnitus and very much worsened vision with both my upcoming visit w/a new ENT, & NL...as well as the tinnitus...and as you well know, they go hand in hand!
I had a doctor once tell me that "well, tinnitus wot kill you". No, physically it's not killing me...but look up tinnitus and you'll see that the suicide rates are very high w/those who have never ending tinnitus (I'm NOT saying I'd mill myself-but I do not want a Dr. to undermine what the thick, myshy dense, distorting cotton brain does to me and the tinnitus screaming at me non-stop, reminding me of things not being right.
I don't know if I actually even answered your question. I suppose the answers I got are both *nerves being compressed and *pressure, CSF. My neck was, is & I'm worried it always will be a major problem. But nobody mentioned my neck. However, I do recall my NL(early on) mentioning that sometimes TMJ/TMD (I have a most horrible daily battle with my jaw) can irritate & compress the nerves that run right along inside the ear & cause tinnitus. But nobody ever mentioned the neck.
Sorry for SUCH an annoyingly long reply! :/
Do you still see an ENT? Has your NL ever talked to you about it?
~emme~
Then, going back to my NL, she agreed it was likely due to the Chiari-be it from the CSF flow but in her opinion, was due to compressed nerves. I was then sent back to my NS w/this info., he said it was sounded like compressed nerves- (I don't get a "heartbeat" sound, or waves like a rush of water sounds. Just a non-stop- Jet 747 sound, sometimes accompanied by a high pitch "eeeeeeeeeeee"...it never goes away- it's either bad or really bad. Either bad or stamped up version of bad. Intense&relentless) So, during the surgery, I was told my forearm could be sore after surgery b/c they would be putting a series of needles there, so that they can find out which nerves were being effected - apparently, said nerves can be detected in your forearm! ( this truly fascinates me...how tinnitus, which is being being brought in by a compressed nerve in the brain that transmits as malfunctioning to the ear nerve/whatever, can be detected in my forearm '! Crazy!) Well, apparently, something worked b/c when I truly came to/ truly "woke up"( vs. being mumbling, incoherent lump) I felt like my whole body jumped out of the bed for a second, with the realization that for the 1st time in soooo long, the roar-ring was 100% gone! My NS said many nerves read as "decompressed" according to the needle get -up on my arm(haha- funny memory about the nurses kept telling me my forearm would hurt, kept asking me about it, the "spider bites" as they called it can hurt. Yet all I could think was- I don't know, I don't think so, I've no idea but I DO have this major pain going up my neck and my head is killing me! lol...those "spider bites". All this while my tongue was so swollen I couldn't speak-we were communicating by paper!)
BUT anyway, yes, the "thick dense cotton brain" was gone -for me, the varying degree of thick dense, distorting cotton brain&intensity of tinnitus went hand in hand. Apparently,it was all nerve related. It was a most welcomed change-to be rid of that heaviness & roar-ring.
Unfortunately, on Dec. 26(day after Christmas), I woke to the unwanted dinner guest who'd returned. It has not let up since Dec. 26th. :(
When I brought this up to my NS, he said that BOTH- the thick fullness on head/ears, as well as the tinnitus had absolutely NOTHING to do w/Chiari. This was confusing- I'd wondered, what happened to the NS I'd seen before this-who claimed that these things were directly linked to Chiari. Everything he was saying was complete contradictory to what I myself knew, but also what he'd always said before!
So, long story not so short, my NL sent me to see an ENT one more time to be sure/confirm its not inner ear&such. She's already said she believes it's Chiari- nerves that are still/re-compressed.
So, I'm at that point. My take (from the 1st ENT & my NL) is that the fullness could be from pressure due to interrupted CSF flow, but also, compressed nerves can cause strange signals to the brain, creating such a feeling.
I'm sorry this is such a long answer... It seems I'm somehow completely unable to write a short, sweet, to the point reply. Ugh. As well, I've to throw in a story or two of my experiences- (which are prob. the most unnecessary of things!)
I do plan on addressing it in a hard way-non"light mention"...I'm going to be very assertive going about this-the dense distorted cotton brain, tinnitus and very much worsened vision with both my upcoming visit w/a new ENT, & NL...as well as the tinnitus...and as you well know, they go hand in hand!
I had a doctor once tell me that "well, tinnitus wot kill you". No, physically it's not killing me...but look up tinnitus and you'll see that the suicide rates are very high w/those who have never ending tinnitus (I'm NOT saying I'd mill myself-but I do not want a Dr. to undermine what the thick, myshy dense, distorting cotton brain does to me and the tinnitus screaming at me non-stop, reminding me of things not being right.
I don't know if I actually even answered your question. I suppose the answers I got are both *nerves being compressed and *pressure, CSF. My neck was, is & I'm worried it always will be a major problem. But nobody mentioned my neck. However, I do recall my NL(early on) mentioning that sometimes TMJ/TMD (I have a most horrible daily battle with my jaw) can irritate & compress the nerves that run right along inside the ear & cause tinnitus. But nobody ever mentioned the neck.
Sorry for SUCH an annoyingly long reply! :/
Do you still see an ENT? Has your NL ever talked to you about it?
~emme~
Hi
I get pressure in my head, especially around my ears. My ears seem to dictate how I'm feeling. I know if they are particularly full, that other symptoms are likely to follow, like neck/throat pressure and headache. Along with the head pressure I always have ringing ears.
I get pressure in my head, especially around my ears. My ears seem to dictate how I'm feeling. I know if they are particularly full, that other symptoms are likely to follow, like neck/throat pressure and headache. Along with the head pressure I always have ringing ears.
1 Comments
Exactly the same here lynnbrook. Same indicators... The thick cotton fullness is always an indicator&is always accompanied by the tinnitus, which will always be worse when I wake with the heavy, full, thick dense & distorting cotton brain.
*On a side note: I think I have a surplus of adjectives in my back pocket to last a lifetime of making attempts to adequately describe all my ailments! ;) I was realizing this today, as I just had to fill out yet another 5 page packet of "new patient" forms. Always so much fun. We all should just create a health resume! Lol!
*On a side note: I think I have a surplus of adjectives in my back pocket to last a lifetime of making attempts to adequately describe all my ailments! ;) I was realizing this today, as I just had to fill out yet another 5 page packet of "new patient" forms. Always so much fun. We all should just create a health resume! Lol!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
As emme mentioned above, it is important to know ALL related conditions are ruled out as well as non related conditions as they can affect how we feel and heal.
Yes head pressure is very typical with Chiari...and IIH, .....pressure is one of the ones I would get at the temples it felt like my head was in a vice.....and I always had the increased pressure with large weather changes.
Hello and welcome!
Yes, very much yes. For me, head pressure both pre-surgery as well as post-surgery (I'm 5mo. out from surgery-but still dealing w/some surgery complications).
Have you been dx. w/Chiari? With a Chiari specialist?
Do you have other symptoms? Obstructed CSF flow?
I've learned the hard way, as our Selma (our lovely wealth of knowledge member) says, if dx. w/Chiari, make sure you also are tested for ALL RELATED CONDITIONS. It truly truly is of great importance.
I look forward to hearing back from you. Welcome to our Chiari Community/Family.
~emme~
Yes, very much yes. For me, head pressure both pre-surgery as well as post-surgery (I'm 5mo. out from surgery-but still dealing w/some surgery complications).
Have you been dx. w/Chiari? With a Chiari specialist?
Do you have other symptoms? Obstructed CSF flow?
I've learned the hard way, as our Selma (our lovely wealth of knowledge member) says, if dx. w/Chiari, make sure you also are tested for ALL RELATED CONDITIONS. It truly truly is of great importance.
I look forward to hearing back from you. Welcome to our Chiari Community/Family.
~emme~
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