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Chiari Malformation Community
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700067 tn?1332992883

Constant headache and nausea, no relief

I had my decompression in July 2012. Actually been doing well since then but in the past week I’ve had a lot of problems with headaches and nausea. Mind you, headaches were never one of my main symptoms with Chiari. I had surgery due to the tingling, numbness, weakness, brain fog, etc. that comes with it. I’d only have a headache a few times a year. Over the past 7 days, however, I’ve had an almost non-stop headache and nausea. It’s worse when I am upright. It reminds me of the headache I got after a spinal tap. Although it’s painful, it feels more like pressure than anything else and starts at the back of my head. I also have CCI and EDS so I’m not real sure what this is attributed to. Could be any one of the three! I'm on pain meds for my EDS but they are not touching this headache stuff. Anyone else had anything like this?
12 Responses
Avatar universal
Hi there,

I am almost 6 months post op and for the last 5 days have had  return of the tingling in my head, face, hands, and a little in my feet.  I, too, am clueless as to what is going on.  I called my NS and she wants a full set of MRI's to see what is going on.  I also have the headache but mine goes away with Motrin.   I hope you find relief soon.  Maybe a call to NL ?

Good luck and let us know,

Mel
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome back....sorry you are not feeling well

  It can be the weather or your activities....stress.....or your EDS....CCI due to EDS can cause HA's.....and the weather can also affect our joints and CCI is an unstable joint.

Did your Dr say they would treat your CCI?
700067 tn?1332992883
The only treatment for m CCI is to have the fusion surgery-something I've been avoiding for as long as possible, especially since it hasn't caused me any real trouble that I can't manage on my own. My neurosurgeon doesn't accept my insurance so I can't go to him at the moment. My neurologist's next available appointment is months away. I have a feeling it's probably a CSF leak since it feels kind of like it did the last time (hard to remember, exactly, since the body forgets pain). I'm just going to go to the local ER and see if they'll run a CT scan and MRI to rule out a leak and possibly get a blood patch to fix it. I don't have a fever or any other symptoms of illness and since this has continued on for over a week now without any relief from the steroids, pain pills, caffeine, or lying flat I guess it's time to bring in the big guys. I try to resist going in until it's absolutely necessary but this is just ridiculous and I feel like crap.
620923 tn?1452919248
COMMUNITY LEADER

  Have you been doing the neck exercises from surgery? I know at least for me it helped with my CCI and my beck is stronger....but, your HA's and symptoms you are dealing with now could be CCI...or EDS.....

Another possibility is POTS.....

Having a leak ruled out is a good idea.....

Keep us posted on what you find out...good luck  <3
700067 tn?1332992883
I have great mobility in my neck. Came out of surgery being able to turn my neck with ease.Even the NS was impressed. I am at the hospital now, though. It's a leak. Getting ready for my blood patch.
Avatar universal
Hi there.  How in the world did you know it was a leak?  I am impressed.  So you have had leaks before?  Where is it leaking from
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