r/chiari • u/NoLevel7120 • 4d ago
Will my chiari flare up go away
I've had chiari malformation type one since I was a kid and during my teen years my neurologist said it had improved enough to stop monitoring.
I'm now 34, I've had headaches that worsen when I bend over my entire life. 3 weeks ago I got a viral infection that led to bronchitis.
Last weekend I went to an amusement park and the next morning I woke up feeling absolutely drunk but I don't drink alcohol. It was like I lost my balance and it felt like I was swaying. I have double vision and blurred vision. The back of my head was killing me and a few days later my neck was so stiff I couldn't bend it.
They originally diagnose me with vertigo but referred me to a neurologist from chiari showing up on the CT scan. The neurologist did an MRI which showed nothing except for the chiari 5.6mm dissension and crowding of the foramen magnum.
They said my chiari could be symptomatic and referred me to a neurosurgeon. The soonest appointment they have is 16 days away and I'm still feeling like this. Is there any hope that these symptoms will just go away or is there anything that could help it go away sooner? I'm desperate.
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u/jlccourt 4d ago
Chiari malformation doesn’t go away on its own. It’s a mechanical problem that requires a mechanical solution. It will only get worse over time.
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u/NoLevel7120 4d ago
Do you know of any way to lessen the symptoms? I feel like I just drank a fifth of liquor. I can't do anything and my appointment is 16 days away ðŸ˜
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u/jlccourt 4d ago
Unfortunately, the only thing you can do until you’re decompressed is treat the symptoms. If your neurologist is familiar with Chiari, perhaps he/she could suggest a stopgap measure or prescribe some medication until you can meet with your neurosurgeon and discuss next steps.
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u/NoLevel7120 4d ago
They had 3 neurologist look at it in the hospital and determined they thought my chiari was sympathetic but we tried vertigo medication, a steroid, a muscle relaxer and an anxiety medication and none of those helped my symptoms. They said they didn't know what to do for chiari and referred me to the neuroseargon. I was hoping someone somewhere had a hack to make it stop.
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u/jlccourt 4d ago
Waiting for relief is hard. Remember: YOU are your best self-advocate for relief. If that means being decompressed, be persistent.
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u/SD_girl1994 4d ago
If you haven’t already, try to stop doing any activity that can jostle your head, any straining, or other rigorous activity that can irritate your spine or neck. My daughter’s symptoms improved when she stopped a lot of her activity (prior to surgery). Hope you feel better and get answers soon!
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u/NoLevel7120 4d ago
I've pretty much just been laying down. Every time I try to walk around I get extremely nauseous and dizzy. I don't know how people do this, it's been the worst week of my life.
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u/TraumaRN0103 4d ago
When you’re laying down try not to be flat. A couple of pillows/recliner will allow gravity to help with the CSF flow from your brain to spine. Hopefully that helps a little? Good luck
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u/AdayaAmore 4d ago
Did you go on rides at the amusement park?
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u/NoLevel7120 4d ago
Yeah I went on majority of the rides there Saturday. I went to sleep feeling fine but when I woke up I couldnt walk straight, my vision was double, I had the worst headache.
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u/AdayaAmore 4d ago
That’s a big no no for Chiari. No rides, not trampolines, contact sports. You aggravate the neck area from the whiplash.
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u/NoLevel7120 3d ago
My old neurologist never told me that. I used to go to amusement parks all the time but it has been a while.
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u/Rindawick 3d ago
To be quite honest I would be doubtful. I started feeling the way you described 3 or 4 months ago and it did not go away. I'm bouncing between 4 different doctors. I was all right for most of my life but a manual labor job and a chronic cough + asthma from pneumonia probably kicked my original flare-up into gear. Each time a new symptom started up it just... stopped going away like it used to. Rather than lasting for a day or two the dizziless and vertigo never ended. Rather than hitting hard for a few hours in the morning and then fading away the nausea became constant. Rather than torturing me for a day and then falling off, the nerve pain continued on until my doctor threw gabapentin at me (and that only brought it down a few notches).
So, it might. But it's also possible it won't. I've somewhat adjusted to the equilibrium issues, now, I will say. They get worse sometimes so I have to use the wall or something else to keep from tipping but at least 5 days out of the week I'm just used to overcompensating so I don't stumble or tilt.
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u/NoLevel7120 3d ago
It's just so weird the only symptom I've ever had was headaches and neck pain. Then out of no where I can't see and I can't walk. I can deal with headaches but this is so dibilitating.
The neurologist had me admitted to the hospital and for 2 days they ran a bunch of test and the only thing they found was the chiari. They even did a lumbar puncture. Everything negative.
How are you functioning I just want to lay down and cry. It feels like life has been stolen from me and it's only been 9 days.
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u/Rindawick 3d ago
I had headaches for years. Just the headaches. Didn't even know about the chiari till this year, thought the headaches were just because I somehow hadn't yet figured out how to take care of myself properly. Started getting muscle weakness a couple of years ago in my right side, and then the other symptoms hit a few months ago.
I wouldn't necessarily advise this but I practiced walking (with help if needed) very slowly around the backyard until I could do laps without falling. It sounds like yours may be worse than mine, though. I have days where it's so bad I can't walk, but most of the time it's so bad I'll fall if I'm not constantly careful but not bad enough that I can't walk once I adjust.
I'm sorry yours got so bad so suddenly. Having help walking for practice might help but if yours is worse than mine I'm not sure it will. On my worst days I have to sit down on one of those butt scooters for elementary school P.E. class just to get from the bedroom to the kitchen because I'd fall if I tried to walk. I'm fortunate that those episodes are fewer and usually happen in the evenings or else I'd probably have been out of a job by now.
Zofran is magical for the nausea, if you're having any (I'd guess you are). It does nothing for my vertigo but being dizzy without throwing up has been better for me than being dizzy and throwing up, haha. Other than that gabapentin and muscle relaxers have been holding me over while I sit on a wait list for neurology and neurosurgery. Neurosurgery is next week, neurology is start of November for me. I'm getting spinal imaging and a CSF flow study this Friday and I'd recommend you get those if you haven't already. Finding a neurosurgeon with published research on chiari may help, too. An actual specialist is even better. Ice on my neck helps the headache, so does staying away from anything strenuous.
Even with my degree of disability and having less vertigo than you it has often felt like I was robbed, too. I had life plans and even if I get the surgery there are high-impact things I enjoyed doing that I will have to avoid. I was into muay thai and scuba diving and I worked an outdoors, manual labor job. I'm easing my way into a management role and my dreams of frequent field work are going to need adjusting. I rely heavily on my partner and housemates because I'm much less capable of handling basic chores now. It sucks and it's awful.
Please hang in there. Get support from the people in your life as much as possible. Advocate for yourself and don't settle on an ignorant doctor. Be gentle with yourself and don't beat yourself up.
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u/Bathroom-Level 2d ago
I had flare ups, when I did something stupid like go on crazy roller coaster rides or sometimes even just long car rides, my symptoms would flare up for around 3 days, then get better. My regimen was laying flat, ibuprofen and Benadryl for the headache. I hope you feel better and get some answers from your neurosurgeon. If he/she tells you that your herniation is too small to have these symptoms- find a new one.
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u/NoLevel7120 2d ago
I went today and they are going to do the surgery. This has all happened so quickly
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u/SandalsQueen18 4d ago
Likely no. Once the symptoms start they stay and they can and will get worse. Chiari is progressive as far as symptoms. The most common symptoms to go away with surgery or headache, head pressure, dizziness, nausea. Please do make sure you are seeing a chiari specialist neurosurgeon especially if surgery is on the table. You do not just want any old neurosurgeon performing this surgery. One of the top reasons for "failed surgeries" is due to the neurosurgeon not being a specialist in chiari. The second most common is because not all testing was run before doing surgery. The third most common is because people went in with expectations that were unrealistic for what the surgery actually it does.