Recently diagnosed in August with Chiari 1 malformation, but also a basilar tip aneurysm. Neurologist felt I needed to consult with Neurosurgeons at Johns Hopkins, but after reviewing MRI and CT scan, they concluded that the type of aneurysm I have is "life-threatening" but not fixable either by surgery or endovascular embolization, and that the symptoms I have related to the Chiari are not severe enough to warrant any type of intervention. How's that for luck? Finding two things wrong in your brain at the same time!.
The new "normal" is now living with vertigo (dizziness) and nystagmus (uncontrolled eye movements). I'm learning what makes it better and what makes it worse. Headaches are related to the amount of dizziness at the time but I feel like I walk thru the day with what I call "foggy brain syndrome" - like I'm not all the way awake. Dull-witted. Some days are better than others. I've had some blood pressure spikes into stroke territory, (although my BP has usually been low or low/normal), so the docs put me on beta blocker, but that didn't seem to control the BP spikes, so they added a calcium channel blocker and HCTH. No problems over the last month except I feel fatigued doing any little thing around the house (I am retired fortunately). I feel like I'm spending my life in my rocking chair. The spirit is willing, but the body isn't. The fatigue most likely caused by beta blockers - which keeps your heart in check. No discussion at all about Chiari surgery, although neuro. believes symptoms may be related to it. I really don't want surgery and would rather try to live with symptoms if I could somehow keep them under some modicum of control. To not be dizzy would be my #1 priority. What a drag that is!!
I’m sorry to hear you’ve an aneurysm in addition to your Chiari diagnoses. I wanted to suggest you have a look at our Chiari Info for Members tab on the top navigation bar. Amongst many other resources, there is a link to information on “Dizziness and Chiari” that may prove helpful to you in coping with symptoms. Also, as you’re able, have a look at member gabbyjazzypant’s discussions. She has developed many positive coping strategies in managing her Chiari outside of surgery as well. Again nice to have you with us and be sure to stay connected here.
Hi Laurie - Good to feel connected to someone "locally" (BaltimoreBaby) as hubby and I were both born and bred Baltimore. I was even born on Baltimore Street (the old Bon Secour Hospital). I will look up the info you suggested. I feel like I was left with no answers by the doctors who discouraged me to research the internet. I did anyway and feel like I got more information and maybe even some validation for the symptoms I was experiencing. One question, though - folks here talk about dizziness but do they also have nystagmus (the uncontrolled eye movements)? All my dizziness is due to the eye movements, which is intermittent and not constant, although always brought on by my standing, turning my head, bending over, etc. The world goes back to normal when I'm quietly sitting still. I'm learning how to navigate on a moving merry go round most of the time. Anyway, good to hear from you.
BaltimoreBaby said:
Hi, opred. Welcome to our community. I'm sorry to hear you've an aneurysm in addition to your Chiari diagnoses. I wanted to suggest you have a look at our Chiari Info for Members tab on the top navigation bar. Amongst many other resources, there is a link to informatuon on "Dizziness and Chiari" that may prove helpful to you in coping with symptoms. Also, as you're able, have a look at member gabbyjazzypant's discussions. She has developed many positive coping strategies in managing her Chiari outside of surgery as well. Again nice to have you with us and be sure to stay connected here. Hugs, Laurie
Hi, opred.
Nice to meet you as well.
Many here have nystagmus as well though I don’t know it’s primarily behind their dizziness symptoms. Here’s just one search on the symptom I found using our search function-
http://www.chiarisupport.org/main/search/search?q=Nystagmus
Since it is a concern for you, you may try also posting a discussion on your nystagmus symptoms in relation to your dizziness in our Symptoms category for specific feedback from others here. You can also try reaching out to those experiencing nystagmus through past discussions. I also wanted to be sure to caution you to discuss any self-management of symptoms with your care team especially as you have other medical concerns and your doctors are most appropriate to advise you. This community is for sharing peer to peer support and experiences. Best wishes.
Hugs,
Laurie
Hi, opredhatter! Movement related dizziness can be also caused by inner ear problems(not sure what it is called in english). If you had that, then it can be improved, not sure if cured, with motion sickness meds.
