Chiari headaches

[Avocado Baby]

Hi,

I get quite a few headaches that feel like they're coming from my neck. My physio has told me that they're muscular but sometimes I get one that feels more throbbing and more from the back of my head.

Does this sound like a 'chiari headache'? Can you describe the difference between a regular headache and a headache from the chiari?

I hope this post makes sense!

Thanks

Ali :)

[Eleanor]

Hi,

I get quite a few headaches that feel like they're coming from my neck. My physio has told me that they're muscular but sometimes I get one that feels more throbbing and more from the back of my head.

Does this sound like a 'chiari headache'? Can you describe the difference between a regular headache and a headache from the chiari?

I hope this post makes sense!

Thanks

Ali :)
Hi Ali, that is a really good question. I hope someone has an answer for you. Eleanor

[Summer25]

Kind of sounds chiari to me. I always get pain in my neck when it is chiari. I don't really get headaches though. Is it going away with otc pain meds? Is that your only symptom? I wouldn't worry to much unless other things arise.

[Avocado Baby]

Well...part of it was coming from my new glasses, which aren't right but I do get headaches too. They don't go away with otc pain meds, which is what my dr told me to take. I'm not really worried about it, just intersted.

[Summer25]

Well...part of it was coming from my new glasses, which aren't right but I do get headaches too. They don't go away with otc pain meds, which is what my dr told me to take. I'm not really worried about it, just intersted.

Have they started recently? Do you have a shunt? The first thing I checked if I had headaches were if they went away with otc meds. If they don't it usually means a shunt malfunction for me.

[Avocado Baby]

Well I've always had them occasionally but not often enough to be worried about. I don't have a shunt cos my hydrocephelus wasn't bad enough. The headaches have eased since I changed back to my old glasses.

I do get chiari headaches if I bump or shake my head.

[Justy Me]

As I keep hearing more and more about chiari malformation, I took it upon myself to do some reading on the subject. Turns out, you get pain in your neck upon coughing or sneezing. That makes SO much sense to me! For years when I was younger I would have sneezing fits due to allergies and my neck would hurt SO bad that my mom would have to hold my head up til the spasms went away ( I could not move until the pain passed). I had no idea why that was happening and it was disheartening to not have any explanations. I feel like, now I can finally put rhyme to reason. Has anyone else had the same issue??

[Justy Me]

Another question.....is chiari strictly related to hydro? I don't have a shunt

[Lifeisgood]

Chiari and Hydro are two totally different things. (I have Chiari but not hydro). Chiari is basically an abnormal positioning of the brain, usually being pulled in a downward position. It is possible to have one of these, both of these, or none of these.

[Justy Me]

Thank you Lifeisgood....I knew that they were separate issues I just was a bit confused as to whether it came about due to the presence of hydrocephalus. I just wanted to make sure. I appreciate your help :)

[Lifeisgood]

Hey Justy Me. Anytime!!! :) There are lots of things about SB and associated conditions which are confusing. I am learning everyday!
It my case, my Chiari was caused by a tethered spine. In my surgery, when they released the tether, they actually saw my spine move into a more normal position and future scans showed the Chiari was improved.

[rene]

I have had debilitating headaches that have been the "chiari" headaches..I can tell because if I push on that area of my neck it hurts. I actually started doing something that most doctors say no to which is a chiropractor and literally I had a headache for a year straight, almost dropped out of school they were so bad and the day after I went to her I didn't have one. She is very careful because she knows my disability and most chiropractors won't even touch me..the one I go to is almost retiring so I am going to an abilities convention next week and will see if they have any one there who works on SB patients..it really does help, also massage can alleviate it to a point.
I hope this helps a bit.
Rene

[Lifeisgood]

Chiari and Hydro are two totally different things. (I have Chiari but not hydro). Chiari is basically an abnormal positioning of the brain, usually being pulled in a downward position. It is possible to have one of these, both of these, or none of these.

So I may have to eat my words a little bit, because I saw a special on tv the other night, and it was about fetal surgery for SB. One of the docs on it said that there is a theory that some kids Hydro MAY occur because if the brain is in a lower position due to Chiari, it may block the normal escape route of the cerebrospinal fluid. He did say that this was just a theory though and it is not really understood why a lot of kids with SB develop hydro. But it is still possible for kids with SB to have one, none or both of these conditions.

If anyone is interested in seeing the special, it was called "Surgery for the Unborn" and it was showing on one of the medical channels here in England. (I am currently here on holiday). The case studies were of kids in the US. Not sure who will be able to view this, but here is a link.

http://skyplayer.sky.com/vod/content/SKYCULTURE/Hidden_Channels/BBC_Lifestyle/content/videoId/fd901f92522a7110VgnVCM1000002c04170a________/content/videoDetailsPage.do

[Avocado Baby]

[QUOTE=Lifeisgood;17488]Hydro MAY occur because if the brain is in a lower position due to Chiari, it may block the normal escape route of the cerebrospinal fluid. He did say that this was just a theory though and it is not really understood why a lot of kids with SB develop hydro. But it is still possible for kids with SB to have one, none or both of these conditions.

QUOTE]


I was going to post to say that, but forgot. Sounds like it was an intersting documentary.

I've recently been referred to a spinal neurosurgeon to investigate my Chiari. I went for one MRI and now I've been asked to go for another one, because this one investigates the CSF flow *sigh*

I wanted to ask whether people find their headaches are worse when the weather is humid?

[liveloveandserve]

I have had neck pain, leading to headaches for 4 days now. The pain comes and goes. I went to urgent care yesterday. They did a CT scan and xrays and everything came back normal. Would the urgent care doctor have seen fluid build up if I did have hydrocephalus?

I have spina bifida and am an adult. I had a tethered cord release about 7 years ago. My family is worried that this neck pain that might be a migraine or a pulled muscle could be something more. Should I go see a specialist or wait a bit longer and wait for other symptoms?

[Summer25]

I would see a neurosurgeon. An MRI would be better in finding a cause.

[NerdaliciouS]

Wait, wait, wait. You mean chiari has all this stuff involved? O_O I get severe "headaches" kind of in the back of my head there. Where that indent sort of is, lol. I don't even know if I'd consider it a headache, I've always compared it to having a concussion. There's a crapload of pressure. Pressure headache! All I can do is stay still. Breathing even hurts, swallowing is damn near impossible, and if I have to get up? There better be walls to grab onto. And they last for weeks at a time without leaving.
Wouldn't say I have it, but I definitely wasn't aware that there's symptoms like that for it, too.

[Summer25]

Yup, that is probably the chiari.

[Avocado Baby]

Wait, wait, wait. You mean chiari has all this stuff involved? O_O I get severe "headaches" kind of in the back of my head there. Where that indent sort of is, lol. I don't even know if I'd consider it a headache, I've always compared it to having a concussion. There's a crapload of pressure. Pressure headache! All I can do is stay still. Breathing even hurts, swallowing is damn near impossible, and if I have to get up? There better be walls to grab onto. And they last for weeks at a time without leaving.
Wouldn't say I have it, but I definitely wasn't aware that there's symptoms like that for it, too.

Definitely sounds like it.

I've quite often put my headaches down to tight muscles but I get two different types of headaches. Ones that start in the back of my head and go over most of the top of my head. I can feel the pressure from inside.

Then I get sharp, stingy pains in my face and behind my eyes which I do think is from tight muscles.