Night sweats, Diploplia, dysphagia, uncoordination like I dont know where my legs are underneath me, when I move my legs my stomache gurgles, sensitivity to light, problems with grip like not being able to squeeze or squeezing so hard i pop the top off my paper coffee lid and spill all over. Aches and pains, spasms, like chilly or electric feelings that dont hurt but are just uncomfortable.
Hardly ever sleep, and that’s what makes me feel like I’m crazy, I forget peoples names, I accidentally put stuff I’m holding in the fridge, or put the tv remote in cupboard.
Depression, impulse control issues, sudden stuttering started in the last year. It all comes at the same time.
Idk when the nausea stopped, it was awhile after my second surgery but it’s gone for the most part.
Yes, I have all but one or two.
I was recently diagnosed and am now realizing that some life-long things are probably due to Chiari. I always have headaches in my neck and can’t bend over when I have a headache because there’s too much pressure.
One thing I’ve seen a few people mention and I’m very curious about is the hand tremors and shakiness. I’ve always had shaky hands, I have a strange grip when I hold a pen because they fall out of my hands, I can’t pick certain things up. I’d love to hear more because I’ve never met anyone with this issue.
Hey Abby,
Welcome to Ben’s Friends.
My name is Merl, I’m a member of the modsupport team here on our network. I do not have chiari as a diagnosis, but rather a growth in my brain which restricts the flow of CSF and presents the same/similar symptoms as you describe ie pressure and tremors (and many more).
But trying to get the medicos to align them all as related… …ohhh, near on impossible. When I’ve mentioned certain symptoms I’ve been given all sorts of reasoning from a low tolerance to pain to being told straight out “ohh that’s not related to anything I’ve done…” from a neurosurgeon after a craniotomy. Every medico has had a differing opinion on cause and treatment option, with each opinion disqualifying the others.
For me, ‘The shakes’ (as I call them) are intermittent. I can go weeks with no shakes, to not being able to hold a cup of coffee. Sometimes my shakes seem to be positional, if I’m holding an object in a certain position, I shake. But changing the position reduces the shake to more like a tremor. For me, I find with a full on shake my grip can be okay, whereas with a tremor my grip is less and I’ve dropped items without realizing it.
As for the headaches, I’ve been given every theory possible from a dental issue, to vision issues, to stress issue, to neck tension, to an issue with body positioning, to it all being psychosomatic etc, etc And some of those headaches are simply beyond belief. As I’ve often said the pressure/pain behind my eyes is so bad, at times I’m tempted to dig my eyeballs out with a teaspoon to relieve it. Nasty
Just know, you are not alone on this journey.
Merl from the Modsupport Team
Hi Merl,
I have never gone to a doctor for any of this, I stumbled across my diagnosis after a car accident last year and am just now starting to look into it more.
Im particularly interested in the tremors and shakes.
I have a similar experience where some days are great with minimal symptoms and others are hard. I typically cannot grab something like a coin off a table until I try a few hand positions- it feels like my fingers just cannot go where they’re supposed to go.
I also find that when I get nervous or anxious, I am quick to become so shaky that I can’t conceal it and I’m unable to hold things or write or type until I calm down. I talked to my neurologist about it and he suggested essential tremor and referred me to a movement specialist but I never went.
Have you ever been able to find a trend? I’d love to think that diet plays into it due to inflammation but I’m just not sure.
Glad to know I’m not alone in this.
Abby
Hey Abby,
From my experience, often when it comes to neuro-symptoms trying to obtain a clear diagnosis can be like trying to nail jello to the wall with lots of 'it could be ‘X’ or ir could be ‘Y’. But using that theory it could be ‘A’ or ‘B’ or ‘C’ or any other letter.
And I dont say this lightly either and here’s why…
As a young child I too was involved in an MVA (Motor Vehicle Accident). Went to the Dr and got told “…bit of a bump on the head, you’ll be OK…” At the time there was no such thing as CT or MRI scans.
Over the years I’d reported all sorts of weird/odd symptoms, but it was all dismissed. Firstly as ‘growing pains’, then ‘behavioural issues’. It was easier to simply label me as “A sh!t of a kid” (and I was). If there was trouble, I was probably in the middle of it.
Over the next few years I’d had a couple of head injuries that caused lingering effects, but nothing was found and it was all put down to hypochondria. I learnt it was safer just to ignore it all.
So add 10 years to that and I’m driving down the road and I had this mighty bright flash in my vision. By the time I’d pulled into the closest shopping centre carpark, the lights went out, I couldn’t see. This got the medicos investigating and I was sent for a scan “Ohh, look what we found…” they said, like it was all something new. I’d been telling them for many years something was amiss. Then they operated (craniotomy) and I’ve been on a neurosurgical rollercoaster ever since, I’ve required 6 neurosurgeries so far and have a shunt (a plastic tube) in my brain to drain the fluid from my skull into my intestinal cavity. I often think how different my journey could have been if it had been diagnosed and treated earlier.
I don’t think I’d call it a ‘trend’, but I know I have a few symptom triggers. Diet, medications, activity, light, noise, touch (at times) can all have an impact on which symptoms shows it’s ugly face. As I’ve sometimes said to others “It’s like trying to juggle bowling balls. You just know you’re going to get smacked in the head by one of them”
I frequently get the shakes. Sometimes I don’t even notice, it’s my wife who sees it. I’ve reported it to the neurosurgeon whose response was “Well, that’s got nothing to do with what I’ve done. It must just be ‘You’…”. He referred me on to a neurologist, who sent me to a pain clinic. I went through their program but with little to no success. And I still get the shakes.
Hope it helps
Merl from the Modsupport Team
Hi what you wrote are all thevsymptoms