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Describe your Chiari headache
Hello all. I am wondering if you could describe your headaches to me. I am the mom to a 9 year old girl who has nearly constant headaches in the front of her head. We have had MRIs and been told she is not symptomatic and am treating her for migraines, despite compromised CSF on MRI, which Dr. felt was not an issue, even though the radiologist said there was 'no flow'. We have been told chiari headaches are quick, and accompanied by sneeze, cough, etc. and that her headache is not chiari related. I have no idea what it is like to live with constant headaches like my daughter, with little to no relief. All she wants it them to go away. Could you please just inform me a little regarding your headaches and what may work for you, if they sound like ours? I am taking her MRIs and sending them for consults over my winter break (full time graduate student), but I am still curious right now, what your experiences have been with headaches or your children's. Thanks so much for your time.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
May I ask, do you know what type of surgery you had? Many times with Children they do a less invasive type of decompression surgery that does not open the dura....?
Since the dura is not opened it can result in needing more surgeries.....not sure why you required 4, or if you have other related conditions.
I had surgery...only one and it was while an adult....and I can still get headaches too if I laugh too much or yell...cry....I would not attempt to jump off a diving board.....lol...but it is not uncommon to continue to have these type of symptoms even after having surgery....they can be due to related conditions, scar tissue...and a number of other reasons,, that being surgery does not eliminate symptoms, only restores CSF flow.
I am curious, you said now anything from jumping...etc....result in a throbbing headache....didn't you have them before surgery, if not why was surgery done?
May I ask, do you know what type of surgery you had? Many times with Children they do a less invasive type of decompression surgery that does not open the dura....?
Since the dura is not opened it can result in needing more surgeries.....not sure why you required 4, or if you have other related conditions.
I had surgery...only one and it was while an adult....and I can still get headaches too if I laugh too much or yell...cry....I would not attempt to jump off a diving board.....lol...but it is not uncommon to continue to have these type of symptoms even after having surgery....they can be due to related conditions, scar tissue...and a number of other reasons,, that being surgery does not eliminate symptoms, only restores CSF flow.
I am curious, you said now anything from jumping...etc....result in a throbbing headache....didn't you have them before surgery, if not why was surgery done?
I got diagnosed with it in 4th grade and had 4 surgeries to deal with it now anything from jumping off a diving board, yelling, laughing and much more will result in me having a throbbing headache in the back of my head
I was diagnosed chiari as a toddler but my parents never told me. There was no internet back then so their only understanding was that it affects your coordination or stability of nerves. They suggested no surgery unless it (chiari symptoms) interrupts my life and causes pain etc... well, fast forward 30 years...
It started with twitching all over- I thought all people experienced tremors like me. Until I drove a new car with extra sensitivity steering wheel. I was shaking and twitching so bad that it probably looked like I was drunk driving.
My toes, heels, fingers, hands arms, elbows, shoulders, neck keep going numb, tingling, intense needle like pain. Then my legs become restless while this is happening.
My teeth are grinding as a result from irritating pain from severe headaches lasting over a week long without any breakthrough - I've been on 300mg topomax, 5 mg tizatriptan, 50mg sumatriptan and tramadol 50mg every 4-8 hrs. Nothing works!
It feels like two elephants are sitting on my head. It feels like a lot of pressure but there's sharp pain like electricity feeling that randomly hits wherever it feels like going. Which makes me grind my teeth more.
I'm always super nauseated. Jumping from constipated for at least a week to having diarrhea for weeks and unable to eat anything or keep anything in my body. When I sleep I wake up with vomit in my mouth.
I have a lot of muscle stiffness and stress all over. We used to get a massage twice a month- you can feel the difference when you've skipped out on 4-5 months of it. As a matter of fact, five months ago is when the symptoms were popping up and they've been worse as time went on... something to consider?
It started with twitching all over- I thought all people experienced tremors like me. Until I drove a new car with extra sensitivity steering wheel. I was shaking and twitching so bad that it probably looked like I was drunk driving.
My toes, heels, fingers, hands arms, elbows, shoulders, neck keep going numb, tingling, intense needle like pain. Then my legs become restless while this is happening.
My teeth are grinding as a result from irritating pain from severe headaches lasting over a week long without any breakthrough - I've been on 300mg topomax, 5 mg tizatriptan, 50mg sumatriptan and tramadol 50mg every 4-8 hrs. Nothing works!
It feels like two elephants are sitting on my head. It feels like a lot of pressure but there's sharp pain like electricity feeling that randomly hits wherever it feels like going. Which makes me grind my teeth more.
I'm always super nauseated. Jumping from constipated for at least a week to having diarrhea for weeks and unable to eat anything or keep anything in my body. When I sleep I wake up with vomit in my mouth.
I have a lot of muscle stiffness and stress all over. We used to get a massage twice a month- you can feel the difference when you've skipped out on 4-5 months of it. As a matter of fact, five months ago is when the symptoms were popping up and they've been worse as time went on... something to consider?
COMMUNITY LEADER
Hi you may want to look at the threads you are posting on as they are old and not current...and the members that posted on them may no longer be active members...you can send a PM ( private message ) ask if you need info on how....or post to the newer threads with active members to get answers.
Not sure whom you were addressing this comment to?
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Thanks for sharing ur chiari journey so far with us...and we do encourage people to always get copies of MRI's and the reports and get a 2nd and 3rd opinion so that they can go with a Dr that is well informed and they r comfortable with.
As for 3 to 5 mm being diagnostic, that is also being debated....as some consider 5mm to be the criteria, it is not the length of the herniation, but the over crowding and obstruction of CSF that is more of a concern.
And we all should be checked for related conditions.
Thanks again for sharing with us : )
I was diagnosed with Chiari and have had decompression surgery. My herniation was 14 mm, when 3-5 is diagnostic. When I was about 10-12, I started having symptoms that I just thought were weird. For example, in the morning my hands would be numb when I tried to grip my bike handlebars and my feet/legs would feel numb when I tried to run - like the pins and needles you get when your legs 'fall asleep.' I also had headaches - I would not call them catastrophic, but chronic. I went to the hospital for a week, but they stopped before the MRI (it was expensive back then).
I also remember having a catastrophic headache once or twice. here's one example, I was at a Robin Williams concert as a teen. I laughed and laughed. On the way home I began to get nausiated and got a headache similar to a non-ending 'ice-cream' headache. It was brutal and lasted for the rest of the night and into the next day.
For my whole life, I would get evening headaches (thought they were from not eating). They would come on slowly and dull and give me an unpleasant experience for hours.
When I was 35, I started to get more common brutal headaches (non-ending ice-cream type). My head would crackle and it was impossible to concentrate. I once spent all night rocking back and forth hoping to die. At the same time, I was beginning to experience knee-buckling, tingling in the fingers used for snapping, terrible neck pain, and my vision went south (literally) over-night. One morning I wole up and when reading little print, the letter seemed to be rotating around each other (from the eyes no longer coordinating well upon strain).
Chiari can also impact your autonomic stability (dysautonomia). I would have terrible rage at times when having an episode. I never hurt anybody, but scared the crud out of some people. Though they deserved it, it looked a bit crazy. (Decompression helped this a lot).
My GP actually caught this with a head MRI. I t was serious enough that I had my decompression within 2 months of the first GP MRI. Now I still have my headaches (having one now), but they are more rare and generally less severe. I still have the other issues, but they are also less severe and seem to be stabilized.
I have heard Chiari referred to as the 'Platypus' of disorders, because the symptoms seem to not go togther very well. When you understabd what is happening, they are perfectly explained - but at first glance, they are all over the map.
I am a psychologist and teach neuro-anatomy. This does help in my understanding, However, the resources are available.
Finally, if the MRI was not 'diagnostic' ('symptomatic is something else), then I would just be sure they were -looking- for Chiari. Some radiological techs don't know what to look for, and can miss a slight herniation (say, 3-5 mm) that can snevertheless be responsible for symptoms. Get a copy of the MRIs (they are now usually on CDs) and become familiar with them. Share them with other experts.
I also remember having a catastrophic headache once or twice. here's one example, I was at a Robin Williams concert as a teen. I laughed and laughed. On the way home I began to get nausiated and got a headache similar to a non-ending 'ice-cream' headache. It was brutal and lasted for the rest of the night and into the next day.
For my whole life, I would get evening headaches (thought they were from not eating). They would come on slowly and dull and give me an unpleasant experience for hours.
When I was 35, I started to get more common brutal headaches (non-ending ice-cream type). My head would crackle and it was impossible to concentrate. I once spent all night rocking back and forth hoping to die. At the same time, I was beginning to experience knee-buckling, tingling in the fingers used for snapping, terrible neck pain, and my vision went south (literally) over-night. One morning I wole up and when reading little print, the letter seemed to be rotating around each other (from the eyes no longer coordinating well upon strain).
Chiari can also impact your autonomic stability (dysautonomia). I would have terrible rage at times when having an episode. I never hurt anybody, but scared the crud out of some people. Though they deserved it, it looked a bit crazy. (Decompression helped this a lot).
My GP actually caught this with a head MRI. I t was serious enough that I had my decompression within 2 months of the first GP MRI. Now I still have my headaches (having one now), but they are more rare and generally less severe. I still have the other issues, but they are also less severe and seem to be stabilized.
I have heard Chiari referred to as the 'Platypus' of disorders, because the symptoms seem to not go togther very well. When you understabd what is happening, they are perfectly explained - but at first glance, they are all over the map.
I am a psychologist and teach neuro-anatomy. This does help in my understanding, However, the resources are available.
Finally, if the MRI was not 'diagnostic' ('symptomatic is something else), then I would just be sure they were -looking- for Chiari. Some radiological techs don't know what to look for, and can miss a slight herniation (say, 3-5 mm) that can snevertheless be responsible for symptoms. Get a copy of the MRIs (they are now usually on CDs) and become familiar with them. Share them with other experts.
Its hard to describe my HA's shannon and they in my opinion are not my biggest issue, but I will say when they come they last for up to 4 weeks at a time.
They are always in the same place imagine drawing a line from the very top of your ear about 5 cm back towards the back of your head in a perfect diagonal, and this is ALWAYS where my pain is. I can honestly say they dont floor me like many chiarians, but nothing takes pain away, they are about a 3 on a pain scale from 1-10.
I do get the intense pain when coughing or vommitting, but its very brief, 2-3 seconds then gone.
When I have these long persistent HA's they feel more like my head is being squeezed or my brain touching sides of skull.
I do get severe eye pain righ eye so can really sympathise with your daughter, the pain is horrific and sometimes accompanies HA but not always, this is a symptom that can come on its own and again last for up to 3 weeks.
I would love to no if our friends on here no if my HA are chiari HA's as this is one symptom I have always said is yes there but not that bad to live with.
Pray you get answers for your daughter and she gets relief she deserves.
Niki x x x
They are always in the same place imagine drawing a line from the very top of your ear about 5 cm back towards the back of your head in a perfect diagonal, and this is ALWAYS where my pain is. I can honestly say they dont floor me like many chiarians, but nothing takes pain away, they are about a 3 on a pain scale from 1-10.
I do get the intense pain when coughing or vommitting, but its very brief, 2-3 seconds then gone.
When I have these long persistent HA's they feel more like my head is being squeezed or my brain touching sides of skull.
I do get severe eye pain righ eye so can really sympathise with your daughter, the pain is horrific and sometimes accompanies HA but not always, this is a symptom that can come on its own and again last for up to 3 weeks.
I would love to no if our friends on here no if my HA are chiari HA's as this is one symptom I have always said is yes there but not that bad to live with.
Pray you get answers for your daughter and she gets relief she deserves.
Niki x x x
Thank you so much for all of your comments. I am so grateful to have a broad illustration of your headaches. Its hard for my dd to describe the pain, being only 9, having had headaches for the past 1.5 years and solid for the last 2 months, she has little life experience to describe them to a dr. She rarely complains of pain at the back of her head, she complains violently around an eye and her forhead. She complains of dizziness too, but that may or may not be due to topomax. I really appreciate all your feedback and descriptions. She is going to see a neuro opthamologist in Jan. to rule out intercranial pressure, she had a high spinal tap opening pressure, but the NS didnt' see anything in the optic never, but did suggest we see one. I will send her films out to chiari specialists simply because while I thought they were, it seems they simply deal with it on occassion, perhaps specialist was used too loosely. I will see him again after this neurooptha. appt, and ask directly about her csf flow and ask for a comparison of the films, which I do not think he did the first time. I wonder what change there has been. Thanks again everyone, you have given me loads to think about and while there is a lot of typical headaches, a lot of you say they are constant. This NS actually told me that is not a chirari headache, they are quick and short. An ongoing headache is not chiari...your words have educated me and I feel like I am in a better place to advocate for her. I realy appreciate all your time! Thanks, shannon
I just remembered something that sheds some light on how my headaches were years ago, before I had a dx and severe neurological problems. Ive always had the sharp, severe, quick headache with straining. I always got pressure headaches if I overdid it. But what I remember is that years ago, when my little sis was in school for massage therapy, I asked her if there was a muscle group that could be massaged at the back of my head/neck that might help the constant ache back there. When I showed her where, she said I basically didn't have muscle there, that it was my skull. So, the pressure manifested back then, as feeling like tight, knotted muscles at the base of my skull.
My headaches are constant and dull. I wake up with it and go to bed with it. I have increased pain with a cough or sneeze but also if I look up or down too long or turn my head right or left too fast. My headaches are more pressure with the pain and is in the back of my head but worse at my forehead. Feels like a pressure cooker. Stress and doing to much makes it worse. I take pain meds which help a little but nothing has helped with the pressure yet. I tend to sleep a lot when it gets bad. If she has comprimised csf flow then I would definatly seek a specialist. I have been getting the run around and will be seeking specialist help after the holidays. I hope the best. I can't imagine my daughter going through what I am. I have lived with this for years and my pain tolerance is pretty high.
If her CSF is blocked, how could it not be causing problems/symptoms? I think that would qualify as a true miracle. CSF needs to flow to cushion the brain, to nourish the brain. If she's got obstruction, then she's at high risk for developing a syrinx, which can cause paralysis. Get her to a dr asap who actually knows what they're talking about!
As far as the headaches go, I always have an achey one; always. The worse ones often begin with feeling like I've been whacked across the back of my head with a 2X4. They spread to my eye sockets, forehead, and temples. I get sharp, stabbing pain in and around my eye sockets. I have papiledema(optic nerve swelling from intracranial pressure) in my right eye. I also will get bad stabbing and shooting nerve pains behind my ears and around into my jaw. My head also feels really heavy, like I can't hold it up for long, when my HAs are bad. Any movement, postural change, just turning my head on my pillow, is agonizing when my HA is bad. I also get very dizzy and get bad vertigo when I sit up from laying or stand up from sitting. I've stumbled and even fallen a few times, but thankfully haven't injured myself too badly. My Hubby has caught me dozens of times and prevented me from falling.
If I sneeze, cough, strain in any way, yes, I'll get the "classic" intense, horrible pressure headache that doesn't last long. These however, often bring on a bad headache shortly afterward, like I've described above, or make them worse. If I cough or sneeze(I've had a cold bug lately) I'll scream from the pain it causes me. It scared my kids at first, but they're used to it now.
Please don't let anyone dismiss your DD as being asymptomatic, especially since you have proof that her csf is messed up. Find a dr who really knows chiari and can help her. With obstructed csf flow, she most likely needs surgery. Your best bet is to find a qualified chiari neurosurgeon. Most neurologists don't know much about chiari. Mine told me that he saw no signs of intracranial pressure and my 4-5 mm herniation is too small to cause problems and that I just had migraines(migraines don't cause 24/7 vertigo, dizziness, parasthesia, etc). A week later my Opthamologist was referring me to a surgeon because of the papiledema.
As far as the headaches go, I always have an achey one; always. The worse ones often begin with feeling like I've been whacked across the back of my head with a 2X4. They spread to my eye sockets, forehead, and temples. I get sharp, stabbing pain in and around my eye sockets. I have papiledema(optic nerve swelling from intracranial pressure) in my right eye. I also will get bad stabbing and shooting nerve pains behind my ears and around into my jaw. My head also feels really heavy, like I can't hold it up for long, when my HAs are bad. Any movement, postural change, just turning my head on my pillow, is agonizing when my HA is bad. I also get very dizzy and get bad vertigo when I sit up from laying or stand up from sitting. I've stumbled and even fallen a few times, but thankfully haven't injured myself too badly. My Hubby has caught me dozens of times and prevented me from falling.
If I sneeze, cough, strain in any way, yes, I'll get the "classic" intense, horrible pressure headache that doesn't last long. These however, often bring on a bad headache shortly afterward, like I've described above, or make them worse. If I cough or sneeze(I've had a cold bug lately) I'll scream from the pain it causes me. It scared my kids at first, but they're used to it now.
Please don't let anyone dismiss your DD as being asymptomatic, especially since you have proof that her csf is messed up. Find a dr who really knows chiari and can help her. With obstructed csf flow, she most likely needs surgery. Your best bet is to find a qualified chiari neurosurgeon. Most neurologists don't know much about chiari. Mine told me that he saw no signs of intracranial pressure and my 4-5 mm herniation is too small to cause problems and that I just had migraines(migraines don't cause 24/7 vertigo, dizziness, parasthesia, etc). A week later my Opthamologist was referring me to a surgeon because of the papiledema.
I have had the typical Quick ten second "Chiari" headaches. They were terrible, very painful and all the time with pressure type movements. What I find though is that a lot less people have tons of this type but it seems EVERYONE seems to suffer with other types of headaches! I thought I had typical migraines... I had them since I was a child.... Mostly over one eye, or behind the head near the neck. They did respond to migraine meds and really were very typical migraines. I had the decompression surgery and since then (six months ago) I have not had to take my migraine meds even once! They said my surgery would not cure those headaches but in my case it did so I strongly feel that it was related! It was in my case. I just recently was put in a position in Physical Therapy that I know would have caused a Chiari headache before my surgery but I was not worried about it, when I sat back up it caused a Chiari headache to both my surprise and dismay. I had not had this pain since surgery. Because the neck was bent I am certain this was causing CSF problems, which caused the chiari headache but then interestingly enough, I got a headache... very much like my old migraines but not quite as severe probably because when I sat back up things returned to normal. CSF should NOT be blocked.. find someone that will know more about Chiari and CSF, it is not easy to find someone to listen but if there is a chance that it is what causes her pain it will be worth the hunt! My life is so much better without all the headaches. I have seen that plenty of Chiari patients do NOT have the typical Chiari headaches! That is a good diagnostic piece of information, my weird head pain is what got me to an MRI to see the Chiari but other than that it does not determine if you have Chiari. I hope I said this all right :)
1 Comments
Are you still doing ok?
COMMUNITY LEADER
I love how a dr that never had a condition can say that the symptoms r so cut and dry and must fit, but get them to tell u about meds, they will say well not all the side effects r listed blah blah blah...give me a break, listen to those that have it so u know for sure,,,but no, they dismiss what we have to say.
My HA's were constant..dull just always there...depending on what I did made them worse, a cough , laugh, or sneeze would cause a sharp pain, but that was not the HA.
The HA started at the base of my skull at my neck, some days it felt like a vise grip was wrapped around at my temples...making it diff to think...vision would be blurry...
Stress did make them worse....and many times they would be bad upon waking, get better during the day only to get bad again at night,...I felt it was the lights that did it...
Right now, I am post op...still have HA's, but I still have chiari...and other issue, but much better than b4....the med topamax is helping...first 2 weeks I didn't think it would, but there is an adjustment to the med I was unaware of.....I did not have this med b4 surgery so I am not sure how it would affect the HA's.
Best of luck
"selma"
My HA's were constant..dull just always there...depending on what I did made them worse, a cough , laugh, or sneeze would cause a sharp pain, but that was not the HA.
The HA started at the base of my skull at my neck, some days it felt like a vise grip was wrapped around at my temples...making it diff to think...vision would be blurry...
Stress did make them worse....and many times they would be bad upon waking, get better during the day only to get bad again at night,...I felt it was the lights that did it...
Right now, I am post op...still have HA's, but I still have chiari...and other issue, but much better than b4....the med topamax is helping...first 2 weeks I didn't think it would, but there is an adjustment to the med I was unaware of.....I did not have this med b4 surgery so I am not sure how it would affect the HA's.
Best of luck
"selma"
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