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Headaches
Hello, I have Chiari 1, diagnosed about 4 years ago. I have had migraines ever since I was 4 years old. The neurologist does not think my headaches are from the Chiari because they aren't in the back of my head. They are over my eyes and my eyes hurt, usually on one side. Does anyone else have this and do you think these headaches can be from the Chiari or are they unrelated? Thanks, Rita
It's funny, sometimes it looks to me like my whole face is a lot slacker..especially if I let it completely relax.
I have no gag reflex (which I hear is common with this) and I'm told that is due to cranial nerve damage so I guess that would account for the facial slackness and numbness..
You are right, it is so overwhelming the number of symptoms we get and some of them you can't even describe accurately!!
I have no gag reflex (which I hear is common with this) and I'm told that is due to cranial nerve damage so I guess that would account for the facial slackness and numbness..
You are right, it is so overwhelming the number of symptoms we get and some of them you can't even describe accurately!!
COMMUNITY LEADER
I wanted to comment on ur eye drooping...I had that too and lucky for me the nurse at my drs office saw it......I said my face felt numb and she said and ur left eye is drooping too...so there r soooooo many things we get with this......
I also get the floaters and blurry vision even after surgery.....I went from a magnification of 125 to 200 and it doesn't help me see ne better.
I also get the floaters and blurry vision even after surgery.....I went from a magnification of 125 to 200 and it doesn't help me see ne better.
My right eye lid slighty droops too!
My issues are: vision blurring and wanting to split into two (like when you zone out but happens constantly), black spots in vision, sparkles in vision (especially in bright light), in dim light I see static (like TV static) and colors float across my sight blocking my vision plus sometimes I see a bright flashing light. Once thing I get that is really hard to explain is that images burn into my vision, I will look at something and it will flash in my vision when I am looking somewhere else, sometimes repeatedly. That one is really hard to explain to a doctor and it gets worse as the headaches intensify. Sometimes I will be seeing 6 things at once all obscuring my vision.
Just thought I'd put it out there to compare...
My issues are: vision blurring and wanting to split into two (like when you zone out but happens constantly), black spots in vision, sparkles in vision (especially in bright light), in dim light I see static (like TV static) and colors float across my sight blocking my vision plus sometimes I see a bright flashing light. Once thing I get that is really hard to explain is that images burn into my vision, I will look at something and it will flash in my vision when I am looking somewhere else, sometimes repeatedly. That one is really hard to explain to a doctor and it gets worse as the headaches intensify. Sometimes I will be seeing 6 things at once all obscuring my vision.
Just thought I'd put it out there to compare...
Hello :) My eye issues are some blurring, one smaller pupil, numbness around my eye extending into my forehead, cheek and ear, I also get a drooping eyelid. (all of this is only on my right side each time) NONE of this EVER happened with a migraine before. I can't wait to see my neurosurgeon next week and possibly not hear.. it's a migraine. If only the doctors could feel ONE of those crazy head pains!
I think I know what you are talking about... I would describe it as a slicing pain through my head sometimes like when you get an ice cream headache. Mine last anywhere from 30 secs to several minutes..
Yes, I get those too!! I was diagnosed with Chiari 1 in September and just had my surgery 4 weeks ago. Unfortunately, I still get the headaches now but I am hoping that will change.
When I first started to get them (several years ago) the main pain focused on my face, temples, forehead, behind the eyes. So much so that when I went to my GP they kept telling me it was sinuses because of the placement. As my condition progressed into other symptoms, my headache evolved too and I started to feel the back of the skull pain plus my scalp would hurt even my hair too. The pain then travelled into my whole face even in my cheeks, jaw ect. Now, I get a lot of pain in the back of my head but when they get bad it is still my face that hurts the most. Sometimes, my eyes feel like they are on fire and I have to close them.
I noticed that Zygy mentioned weird eye issues occuring with the headaches too which I get as well.
Hope this helps!
When I first started to get them (several years ago) the main pain focused on my face, temples, forehead, behind the eyes. So much so that when I went to my GP they kept telling me it was sinuses because of the placement. As my condition progressed into other symptoms, my headache evolved too and I started to feel the back of the skull pain plus my scalp would hurt even my hair too. The pain then travelled into my whole face even in my cheeks, jaw ect. Now, I get a lot of pain in the back of my head but when they get bad it is still my face that hurts the most. Sometimes, my eyes feel like they are on fire and I have to close them.
I noticed that Zygy mentioned weird eye issues occuring with the headaches too which I get as well.
Hope this helps!
I agree completely!!!! I don't think I could survive if it lasted much longer than the ten seconds! I would at least not be breathing :) I find I also shake my head or move my neck trying to lessen the pains. This is the head pain that I think of when I hear "chiari headache". I really can't seem to explain this pain to anyone, it is so different from a typical headache, I really have a hard time even calling it a headache!!!
I don't know if anyone else already knows this or has tried but whenever I get one of those "10 second brain exploding I can't breath or talk or see oh God my head is bursting I'm going to pass out or die" headaches (LOL) I have found if I stretch my neck side to side and pull my shoulders down it lessens the intensity and duration of the headache.
I am so happy to see a headache thread! I have been thinking about asking about headaches and what everyone calls them. Sometimes it seems that the "chiari headache" refers to the back of the head pain but then other times it seems people with tons of headaches refer to those as chiari headaches.
Since I started having problems about five years ago, there have been all kinds of headaches with them increasing rapidly in the past year. I have had migraines since I was a child, I am very used to these types. The newer headaches seem to be from the back of the head but come around to the front around one eye like a migraine but not exactly. My neurologist thinks they are migraines... all I know is that they are different and can sit there for days! It also seems to bother my eye and I get some weird eye issues when I get this type. They may be a type of migraine but I feel like they are caused by the chiari especially since they come with so much back of the head pain.
The chiari headaches I get are short. The ones that I call Chiari are the "cough headache" style. The "grab your head and stop breathing for ten seconds" type! I can get a lot of smaller ones that I can seem to control, you somehow slow down what you were doing and can manage to stop some of them from becoming that severe pain. When the big ones hit, I describe it as someone dropping a car on the back of my head... I pretty much stop what I am doing, grab my head and don't breath until they let go! These are the ones that I went to my doctor about, I thought at first that they were just muscular from my accident.. turns out it wasn't muscular :)
I think though that headaches at this point are as varied as jelly beans on Easter! I would be very curious to hear if others think the same way. I have more experimental headache meds and never even know what to try because recently I swear that nothing seems to work! I have so many different types of headaches at so many different times of day. I had posted about my night headaches... that is a new one for me. Now I get crazy head pain that wakes me around midnight and end up walking around my house for a couple of hours while it calms down. Neuro also thinks this is migraine but my meds don't work for this headache. Luckily I have pet rats and they think that someone to play with in the middle of the night is just the greatest thing ever!!
I think no matter what our doctors call these headaches, we know our bodies and we know when something has changed! Regardless of what they appear to be, I feel we know they are coming from something new! When you go 30 years having migraines, you would think you have a pretty good idea what one feels like. When they instantly change we should be expected to believe something different is going on.
-Zygy
Since I started having problems about five years ago, there have been all kinds of headaches with them increasing rapidly in the past year. I have had migraines since I was a child, I am very used to these types. The newer headaches seem to be from the back of the head but come around to the front around one eye like a migraine but not exactly. My neurologist thinks they are migraines... all I know is that they are different and can sit there for days! It also seems to bother my eye and I get some weird eye issues when I get this type. They may be a type of migraine but I feel like they are caused by the chiari especially since they come with so much back of the head pain.
The chiari headaches I get are short. The ones that I call Chiari are the "cough headache" style. The "grab your head and stop breathing for ten seconds" type! I can get a lot of smaller ones that I can seem to control, you somehow slow down what you were doing and can manage to stop some of them from becoming that severe pain. When the big ones hit, I describe it as someone dropping a car on the back of my head... I pretty much stop what I am doing, grab my head and don't breath until they let go! These are the ones that I went to my doctor about, I thought at first that they were just muscular from my accident.. turns out it wasn't muscular :)
I think though that headaches at this point are as varied as jelly beans on Easter! I would be very curious to hear if others think the same way. I have more experimental headache meds and never even know what to try because recently I swear that nothing seems to work! I have so many different types of headaches at so many different times of day. I had posted about my night headaches... that is a new one for me. Now I get crazy head pain that wakes me around midnight and end up walking around my house for a couple of hours while it calms down. Neuro also thinks this is migraine but my meds don't work for this headache. Luckily I have pet rats and they think that someone to play with in the middle of the night is just the greatest thing ever!!
I think no matter what our doctors call these headaches, we know our bodies and we know when something has changed! Regardless of what they appear to be, I feel we know they are coming from something new! When you go 30 years having migraines, you would think you have a pretty good idea what one feels like. When they instantly change we should be expected to believe something different is going on.
-Zygy
COMMUNITY LEADER
HI and welcome to the Chiari forum.
Chiari symptoms can cycle, so for urs to come and go is quite normal......u can also have a flare where the HA is worse than other times and last a bit longer than ur usual HA's......
AS for what the HA feels like...it depends on the day and what I did that day or the day b4.....sometimes it is a throbbing pain at the base of my skull and after a few hours radiates around to my temples.
Some days it is a pressure HA......and feels like itis going to push my eyes right out of their socket.
I am sure others will have other types of HA's to describe as we can also have migraines in addition to the Charai HA's.
Glad to have u join our little family and I hope u find the answers ,info and support u seek.
"selma"
Chiari symptoms can cycle, so for urs to come and go is quite normal......u can also have a flare where the HA is worse than other times and last a bit longer than ur usual HA's......
AS for what the HA feels like...it depends on the day and what I did that day or the day b4.....sometimes it is a throbbing pain at the base of my skull and after a few hours radiates around to my temples.
Some days it is a pressure HA......and feels like itis going to push my eyes right out of their socket.
I am sure others will have other types of HA's to describe as we can also have migraines in addition to the Charai HA's.
Glad to have u join our little family and I hope u find the answers ,info and support u seek.
"selma"
what do your headaches feel like mine are so weird like a burning pinching feeling i want to know if this is from chari 1 i have with a 2.5 not sure .is everyoone headaches constant because my will go away for a while and then come back Pleasse post your opinon and what your headaches feel like Thanks
COMMUNITY LEADER
Hi and welcome to the Chairi forum.
Most of us find that the drs that have a haard time believeing that our symptoms r from the chiari r not chiari specialists.
We do have a thread here of specialists that members have been to and were happy with...please research all drs to be sure they r in fact a true chairi specialist...and only u can decide if that dr is right for u.
As Jean mentioned it is possible to have ur HA's in diff areas of ur head..and for it to affect ur eyes is very chiari.....u can even have migrsines in addition to chiari HA's.
I hope u continue to post ue concerns and allow us to support u in ur search for answers.
"selma"
Most of us find that the drs that have a haard time believeing that our symptoms r from the chiari r not chiari specialists.
We do have a thread here of specialists that members have been to and were happy with...please research all drs to be sure they r in fact a true chairi specialist...and only u can decide if that dr is right for u.
As Jean mentioned it is possible to have ur HA's in diff areas of ur head..and for it to affect ur eyes is very chiari.....u can even have migrsines in addition to chiari HA's.
I hope u continue to post ue concerns and allow us to support u in ur search for answers.
"selma"
Even though I am a 'newbie' to Chiari 1, I have read & heard that not all Chiarians experience the same symptoms. My headaches are usually in the back & top of my head or at the base of the skull, but I do have days when it feels like the back of my eyes hurt & I have a "sinus headache." However, if I apply pressure to my sinuses nothing happens...if I apply pressure to my usual headache spots then the pain/pressure above & behind my eyes increases.
Do you have any other symptoms? The list of Chiari related symptoms is long & varied so anything out of the ordinary/norm is a possibility. I know 4 yrs is a long time to go back over & review, but maybe if you can list other 'oddities' a connection w/Chiari can be made. Good luck & keep us posted. ***Jean
Do you have any other symptoms? The list of Chiari related symptoms is long & varied so anything out of the ordinary/norm is a possibility. I know 4 yrs is a long time to go back over & review, but maybe if you can list other 'oddities' a connection w/Chiari can be made. Good luck & keep us posted. ***Jean
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