768044 tn?1294223436

Pain when lying down

Hi everyone!

Haven't posted here in a while... but...

Well, I have chiari (12 mm with crowding of the foramen magnum and displacement of the cervical spinal cord)... most of the time the doctors don't think I get headache-type symptoms from it, I've done a bunch of stuff in my life to make sure I don't trigger chiari symptoms and it's mostly seemed to work. I get terrible migraines which are completely out of control but the doctors say they are completely unrelated to the chiari and I believe them I think because the migraines don't sound exactly like they could be related to the chiari headaches.

But, the last few nights I've been getting weird headaches... I've been getting my normal migraines, except my normal migraines have been more severe and even when I get rid of the migraine with the migraine medications or NSAIDS or even stronger pain killers like opiates (normal medication routine), even when the pain has completely stopped, then if I lie down or recline at all, then a different sort of pain starts. It feels like my head is on fire and I get a really bad headache that is all over my head, in the back of my neck and head too and I can feel everything sort of "pulsing" especially in the back of my head, although the front of my head hurts a lot too. I had to prop my bed up so I was sitting up to sleep last night, it was the only way I could sleep because I thought I was going to go crazy every time I tried to lie down... I started to get so frustrated because I was so tried... I just wanted to lie down to go to sleep so badly... I felt like I could pass out anywhere no matter how bad the pain was every time I sat up but then when I would lie down my head would "catch on fire" and the pulsing would be maddening.

Sleeping is very painful if I don't sleep on exactly the right kind of pillow... I get a very sore neck and back of my head... it will feel like it is bruised... but, nothing in my sleep has changed... I still have my comfy pillow and my comfy mattress. Everything feels right, my neck feels supported and good... but, lying down or reclining instantly makes me head feel like it's on fire and exploding even though everything feels right otherwise.

This is NOT a normal migraine thing at all. My head will often feel hot when I am having a migraine but not like that... and it has never felt worse when lying down... often it feels better lying down, unless the pain is so bad that I can lie down, but lying down doesn't make it worse then, it just doesn't make it any better... so lying down making the pain worse was just the weirdest thing ever. I do often get dizzy when I recline or lie down or my eyes will start shaking (nystagmus) if I recline my head in some position, which I've often thought was a chiari symptom... but never headaches before... and never if I lie flat on my back or side before, which is how I normally sleep, my eyes will only do the nystagmus thing if I recline my neck, like have it in a "L" shape sort of, like if my body is one arm of the "L" and my head is the other arm of the "L" then the nystagmus will start... but lying down flat with a good supportive pillow has never triggered weird neurological symptoms or pain before.

Anyway... I will of course tell my neurologist about this.... but I was just wondering if lying down can trigger a chiari-type headache, if this could even be a chiari-type headache, or if I should cross a chiari-type off the list of possibilities entirely?

Thanks for the help!!
4 Responses
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620923 tn?1452915648
Hi Marileew.....

May I ask how long it has been since ur last MRI?...it sounds like u had a change and it could have been an innocent sneeze or a bumpy car ride that triggered the change, but u need to get to a chiari dr and let them know the changes u r experiencing.

Try a pillow that is softer or roll on ur side and see if that doesn't help.....

Since u have a dx of chiari I was wondering if u have a NS?......

And as for lying down triggering this new type of HA, yeas it is  possible...u may be getting a blockage of CSF flow while lying down.....u need to see a chiari specialist.

Helpful - 0
Avatar universal
you stated  I have chiari (12 mm with crowding of the foramen magnum and ) YOU have been diax already  you need to see a NS . That is a big hernation  I would think the NS would want to do surgery . Dont wait to long. where do you live cause you need the right NS . OK i seeyour in canada . there is a list I will send to you. Roz
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Avatar universal

Dr. Rudolph Arts  
Barrie, Ontario  
(ph) 705.721.1060  

Dr. Paul Muller  
Chief of Neurosurgery  
St. Michael's Hospital  
Toronto, Ontario  
(ph) 416.864.5590

Dr Hurlbert
Foothills Hospital
Calgary, AB, Canada

Dr. Rutka  
Sick Children's Hospital
Toronto, Ontario

Dr. Ramesh Sahjpaul
Neurological Sciences  
339 Windermere Road,  
London, Ontario N6A 5A5  
(ph) 519.663.3706  
(fax) 519.663.3753

Helpful - 0
Avatar universal
Hi, I have a rare case of chiari 1 malformation (15mm). I went to The Chiari Institute in New York and Dr. Insinga said I really need the decompression surgery asap. But I have Indiana Medicaid and it wont pay for the surgery since it is out of state. I was wondering if you knew of any insurances I could get.  Thanks, Amber
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