New here

[MattDL]

Hello all

I am new here but unfortunately not new to chiari. I like many of you have had countless Symptoms over the last 2 decades. All of them came to a head (no pun intended lol) when I had a LP done about 5 years ago for what was thought to be MS. I had every chiari symptom up to that time except headaches. Since then my life has been a strange up and down roller coaster headache wise. I have bouts where I have severe headache for weeks to months followed by a period where the headache is barely noticeable. I will exercise, weight lift, do life. Then 4-5 month later bam...hits me again. This has happened probably 5-6 times since the LP.

I've had numerous brain MRI with fine - show 3 mm herniation and mildly attentuation of flow.
I saw world renown leak expert to rule out csf leak - he thought I didn't have a leak
Have seen 2 chiari specialists - one who said he would never touch me (surgically) and another who didn't recommend it.

I am here because guess what, this last week...bam...headache hit again. Caffeine helps a little but the worse is the nausea. On and off all day I feel nauseous/

Anyone else have this? Anyone else have input for me. I'm super frustrated, worried and confused

Thanks for your time

Matt

[wnzday]

you may ask your doc about promethazine for the nausea, that's what I take and it works well, as I struggle with that too when my pain & migraines are really bad.
As others have said, there are many things that can trigger your flare ups, BUT sometimes there just isn't any rhyme or reason.

[Sara_Jane19]

Sadly, or happily depending on how you look at it, not all of us are surgical candidates. It sounds like this may not be the best option for you, but make sure you get a second, third, or more opinion until you feel comfortable with what the doctors are explaining to you.

Like Selma said you may want to get related conditions ruled out ( I will let her go into those as she knows far more about them than I do!)

As far as the nausea I use Tums like candy when i get nausea. If it is longer term I have heard that many people use a probiotic supplement or eat a lot of yogurt to try to help balance the natural bacteria in the gut.

The fact that your headaches don't bother you that much is actually encouraging as far as Chiari goes! This makes me think that getting checked for other conditions may be the way to go... Most people with symptomatic Chiari get headaches from straining (sneezing, crying, heavy lifting, coughing, etc.) I know this was a big classifier for my NS to determine if I was a candidate for surgery or not.

You may want to keep a journal to see if you can determine either the length of the cycle between flare ups and/or if there is anything that sets it off. Loud noises, light sensitivity, something you ate, lifting too much, over tiring yourself, etc. could all be things that may set off your flare ups. Good luck and keep us updated!

[MattDL]

By the way my herniation is 3mm or more (measured as high as 5) and cine showed very little blocking

[MattDL]

I'm not sure how much was ruled out. I know the neurosurgeon I saw at university of Washington is a chiari specialist and he said he is not sure if chiari is causing my symptoms but said for me surgery is to high a risk. He said sometimes the solution is worst than the problem and from looking at my MRI (10+ of them) he said to run from anyone that wants to operate. His name is dr ellenbogen and he is a great doctor but he said the surgery is quite a big deal. The worst part of my flare ups isn't even the headaches as they are manageable with caffeine. The worst is the nausea. On/off I feel nausea all day when I have these flare ups. Over the years I've had many symptoms - balance issues, dizziness, ear fullness, tinnitus, tingling sensations, headaches, nausea...ugh! ;)

Any input from anybody would be appreciated. Thank you all for your time

Matt

[selmaS]

  Hi and welcome to the Chiari forum.

In looking back, I can say my symptoms acting much like urs,.,.come and go, when they hit, I would go to a Dr, and get no results as to what it was or how to make me feel better,,,then it would calm down and I would stop seeing Drs,.....until 2007 I had a drop attack and had injuries from the fall that required surgery,,..one of my surgeons sent me to a NL as he suspected LUPUS, it was in testing to rule that out as well as MS and lymes that my Chiari was found,......

Not everyone with Chiari is a surgical candidate...but, when we have it and we r not, then what? Well look to related conditions...I would hope the Drs u saw had testing done to rule all of them out as many  of them can cause many of the same symptoms as chiari and y we get lost in the shuffle,

Did u rule out all Chiari related conditions?

[linnielou232]

So sorry to hear you also have Chairi and having these flare up's.  They are hard to deal with.  Something I noticed in your writing is that you weight lift.  This could cause your flare ups.  You want to avoid lifting and bending as much as possible.  I know for me this will flare my Chairi up.  Just try to rest and not lift for a couple of days and see if this helps.   Wishing you the best.
Linda :)

[QuiltingLady]

Welcome!  I've found a lot of help and comfort from the "experts" at this community.  

I've had the same off-and-on headaches.  There's never a day that goes by that I don't have a mild headache.  The really bad ones are weeks apart then last for weeks.  My other symptoms are more severe.  

I'm analytical by nature, so my PT has encouraged me to be smart about my activities, but don't expect to always figure out what caused what.  Chiari is just not that predictable.  She's more concerned that I learn how to deal with the headaches, etc when they happen.

My NS prefers to wait and see -just like yours.  I also have another herniated disk (3rd one) and he wants to take care of that first.  I have tethered cord and am having more tests to see where I'm at with that.  As is the case with you, it's a very slow process.