Constant headache and nausea, no relief

[bledpub]

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?

[selmaS]

  Just from all the ruptures I would highly suspect you do have VEDS.....

  May I ask when you had the testing?....Hope you get answers soon.

Please keep us posted on what you find out....Good Luck..

[bledpub]

I have clinically been diagnosed with Hypermobility but the test results are not back yet from the geneticist and it's strongly suspected that I have vascular, or least some very big crossover symptoms. I've had several organs rupture including my gallbladder, uterus, and appendix and my placenta ruptured in 2 of my pregnancies. I also have large varicose veins, mitrovalve prolapse, and a murmur. So while it's possible that I don't have VEDS I at least have enough of the characteristics that we're concerned when I get chest pain or stomach pain.

[selmaS]

  A blood patch is your typically your own blood injected near the suspected leak the blood injected will create a patch to help seal the leak.......


  @bledpub= Oh I know my EDS symptoms flared post op too....my ribs pop out of joint all the time...as I turn to look at something or laugh...ugh..as you said if it is not one thing it is another....

What type of EDS do you have....vascular?

[Elisaandbucky]

I am reading you post and responses and hope you are feeling better and not frightened or feeling anxious. Can you tell me, either you, Selma or you, Bledpub, what the procedure is for a blood patch? Will you undergo a surgical procedure?

[bledpub]

They also put me on antibiotics because my white blood count was up and they were afraid of meningitis. They didn't want to do a lumbar puncture since I already had a headache and that can make it worse. (Been there, it was terrible.) Since the leak lasted for so long, though, acute meningitis-not the "bad" kind-was possible but antibiotics will help. I am just going to take it easy for a while. And I continue to do the neck exercises as well. I go to physical therapy twice a week, acupuncturist once a week, and get massages once a week, to help with the pain and mobility. Chiari isn't such a problem for me at the current time, but m EDS has gotten progressively worse over the past 2 years. Due to ruptures I've had to have my appendix, uterus, and gallbladder removed and have developed rheumatoid arthritis in my hips and fingers and osteoarthritis in my lower back and neck. The headache associated with the leak is really the first head pain I've had in years. Most of my other symptoms (weakness & tingling in extremities, brain fog, etc.) went away not long after the surgery, only to be replaced with EDS crap. If it's not one thing it's another, right? ;-)

[selmaS]

  Good to know you are getting the patch and that it was a leak and nothing else.....

I had great mobility post op too, a thousand times better then b4 surgery but I continue to do the exercises not so much for mobility as for strengthening the muscles as I also have CCI.....I no longer feel like a bobble head in the car..which was a major issue for me post op.

Keep us posted on how this patch works for you ((hugs))

[Mel5056]

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

[bledpub]

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.

[selmaS]

  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

[bledpub]

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.

[selmaS]

  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?

[Mel5056]

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