So confused...

[Mannas]

I'm very confused.  So I have had a rough couple of weeks lately.  My headaches have been almost constant, my balance is way off.  When I stand still I start to fall backwards or sway forward and back.  When I walk my legs feel like jelly and my knees are very weak.  I've felt like I've been in a fog or lost most of the time.  That's the bad.

Now the confusing part, yesterday I feel better and today I feel great.  When I was cleaning and bent down a few times the headaches started but overall I felt fine today.

Is this normal for Chiari?  I am due to see my new Neurlologist on Tuesday but I am afraid the day I go I will feel fine, which is good and bad.  I still do not know if it is the Chiari causing the issue or not.  The first doctor I was seeing was treating a CSF leak with a blood patch.  The first time seemed to help and then about a month or so later it was back.  After the second blood patch the symptoms have been much worse.  She was not looking at the Chiari and I really am wondering if that is the problem.  Cannot wait to go on Tuesday but was curious if this would possibly the case for the symptoms of Chiari to be really bad and then a day or two later be almost completely gone, and then back again a day or two after that.

[selmaS]

  Hi...u nailed it just right...chiari does  cycle, how long it cycles depends.....but I went long periods where I could tolerate the symptoms and the HA's...that went on for yrs.....but on and off I would have to go back to the Dr...it is bcuz of the way the symptoms cycle that Drs and even us chiarians find it diff to connect all the symptoms together.One of the major reasons it took yrs to get dx'd in my case.....

Most of us enjoy the down cycle when we r feeling good, knowing if we do too much, the up cycle of pain will return with a vengeance.

As Ray mentioned, u have to be careful with ur activities to help avoid certain positions and strains when possible to help lessen the pressure we feel.

   "selma"

[rod44]

In my experience the most symptoms of CM come in cycles. They can last for days or weeks, some symptoms like numbness are with me all the time.  My balance is off most of the time but sometimes it gets much worse with vertigo & dizziness especially if I cant tired, I have problems sleeping, some times I cant sleep and other times I cant stay awake,  this can last a few days or a few weeks.
When you bend down or strain, laugh, cough, sneeze this increases the CSF pressure and can cause problems.

Ray