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Headaches caused by Chiari Marlformation?


Gena
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I went to some of the links posted under Sue's question about chiari and discovered that the main symptom is the intense headaches in the back of the head that are agrrevated by coughing,sneezing, straining, etc.

I have not been dxd with chiari, but since I've had POTS (only about 2 1/2 months) I've had bad headaches in the back of my head that seem to be characteristic of chiari malformation. LIke the Chiari type of headache, when I cough, sneeze, etc it makes the headache much worse. It feels like a tightening in my scalp or intense pressure. The headaches are sometimes extremely severe and can ruin my whole day. The only thing that seems to help them is to lie down for a few hours.

Sue or anyone esle with CM--Do you get these types of headaches? And how were you dx'd with chiari-- via MRI results?

Does anyone else with POTS have headaches like these and NOT have chiari?

I've had an MRI of the neck a couple of weeks ago, and I have appt. to get an MRI of my head next week. The MRI of the neck was normal according to the Dr. who read it. Perhaps I should have someone double check the MRI??

Thanks for your help!

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  • 3 weeks later...

I had similar headaches before I had my spinal surgery. I had impeded CFS flow due to a high spinal compression that pinched off the cord... I could provoke a headache by leaning forward. Straining would intensify it.

Regardless of what anyone symptoms were here on this board, you really need to be seen by a knowledgeable doctor. If you've not had an MRI of your head and c-spine, that might be something to check in to.

Hope you find answers.

Nina :)

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I get pain in the back of my head right above where my neck ends and my head begins (does that makes sense?) when I lean over or when I vacuum. I don't know why vacuuming bothers it so much, but I have to take breaks when I vacuum and tilt my head up and back (like looking at the ceiling) and this relieves the pain. Bending down to clean the shower, do laundry, or take groceries out of the cart always hurts the back of my head....again, holding my head up and back relieves the pain. I have chronic neck pain. Maybe one day when I pay off all of my never-ending hospital bills I'll have this checked out. (Remember, I have a 15-year-old...he seems to have a thing for messing up his face...once he burnt himself so bad the skin was just melting off...the last time he had lots of scrapes, a black eye, a cuncussion and amnesia...and those ER visits aren't cheap and aren't completely covered by our insurance).

I don't know if my experiences sound like anything you've experienced or not, Gena. Have you ever asked a doctor about it? How were the MRI results?

Michelle

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Hi Nina and Michelle,

I recently had an MRI of the neck and head and they were normal. I mentioned the headaches to the neuro at Mayo Clinic last week and he didn't offer any ideas. How do they know if you have too much spinal fluid causing the pain...would they see that on an MRI or is there another test for that? I do notice that they get worse when the muscles in my neck are stressed - like today I was under so much stress at work and found out my grandmother was in the hospital.

My head also hurts where it meets the back of my head and then also higher up around the little bony areas that stand out on the skull (I have one on each side so it's a normal formation :) ). If I sneeze or cough when I'm lying down it really hurts. Other days, the pain is much less but it's still there. Sometimes I think maybe it's a compressed nerve in my neck or something. Thanks for your responses!!

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Gena, my films were evaluated by a neurosurgeon. Before that, however, it was obvious to the untrained eye that there was something wrong. My spinal cord was pinched off and looked like an hourglass.

Nina

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Hi, Well I guess this is my first post. I too get these pains in my head. When I asked the DR. about them he just said it was all part of having POTS and I really have a hard time cleaning the tub because if I have to bend over I get a real pressure in my head. I also noticed that if I over do it one day I usually get the headache the next so I have to learn to not do that. :) Well lets see if it worked.

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Gena, I have had MRIs of the head, neck and spine as well as a doppler ultrasound of the carotoid arteries to determine if any of that could account for the pain that I had vertically down both sides of my neck and at the top of my neck/base of my head. Everything proved "normal for a person of my age".

I find that it happens most when I have been on my feet too long or may happen the next day after doing mild exercise. If my neck muscles are tight it is much worse. I have been fortunate to be able to go to a massage therapist for the chronic pain weekly for the past year and a half. It helps but lying down is what helps the most.

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Geneva,

I agree that mine intesifies when my neck muscles are tight. I do go to a massage therapist about 2x/month, but I wish I could go more, but my insurance won't pay for any more than that. And yes, lying down is the best remedy, but kind of difficult to do when I'm at work :)

I guess it's comforting to know that these pains are common in many of us. I won't worry about the pains in my head and neck anymore, since my MRI was normal and others seem to have similar pains. Thanks!

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