Hey folks, my wife had a new symptom today and just wondering how urgently we should get it checked out.
Currently her primary symptoms are pressure headaches caused by the standard triggers (stress, after fitness, after bearing down, after bending over for any length of time) dizziness, and light headed at times.
Today she was out shopping and she ended up with what she described as tunnel vision that lasted for about 30 minutes… Followed by a headache… She’s unsure what triggered it possibly bright light.
New symptoms are always a concern. I am very sorry she is going through this
and I am sure it must be scary for her.
When did your wife have her last MRI & how was her CSF Flow at that point?
A lot of Chiarians have vision issues, some have to do with headaches and some don't.
Either way you still need to know the cause if possible. It can also be serious if there is CSF restriction or blockage.
Does she have a NS? I would definitely be asking for a CINE MRI to check the CSF Flow if she hasn't had one recently.
I am not trying to alarm you but I know many Chiarians that have permanent vision problems and don't want your wife to
be one of them. If she doesn't have a NS you can probably get her in with an Ophthalmologist pretty fast.They will be able
to look at her optic nerves and tell if her intracranial pressure is raised or there is any optic nerve damage. I have a bent
optic nerve myself and vision problems.
Tunnel Vision is listed as a symptom of migraines even though I have never heard anyone else say they have that
symptom. I don't and have different kinds of migraines. I would still get it checked to be sure.
Please let us know how your wife is doing,
I ended up with permnt vision issues. Had the blurry tunnel that goes grey and dark mine always goes away after i shake it off. I also am unable to drive though because of focus issue. Cant determine the distance between me and a merging car or a up high falling box. I jump n scream. I drove for a few year as adult with difficulty. It was a passion, but i handle not driving now for three years, okay. I loved my explorer. I think its a nerve problem. I dont even bring it up. Havent done eye test since my parents divorce at age 17. Suffer migraines and double vision. Maybe i should get eye test anyway. Good lick i hope ur visions stays moderately healthy. Get on a migraine prevention if you suffer headaches.
I've had tunnel vision preceding migraines and my NL explained it away as aura. Aura is very common before migraines and shows itself in a wide variety of forms. Also some meds, such as Topamax, can cause vision problems. If your wife is taking any meds that may cause vision problems, it should probably be checked out asap.
I have had tunnel vision several times. Sometimes stress or being tired causes it. Need to check CSF for sure. I have a syrinx from C4-T-9.
I am sorry to hear about your wife maxpower- I am so scared about my vision changes as well- I get blurry vision , peripheral and depth perception changes and when on my laptop too long, everything goes "gray and white" and super blurry.
Kyle mentioned many Chiarians have had permanent eye sight/ eye issues/ sight loss?? It is my left eye that is the most affected. I have an asymmetrical pituitary gland also- I always get a metallic taste in my mouth and feel so out of it ALL the time. I feel like I have a low grade flu constantly. :(
Tracy mentioned symptoms that are considered urgent- did you mean in other people, but with Chiairi these are just "par for the course?" I am up at night to the point of delirious and exhaustion, fighting sleep - I am so frightened to fall asleep-- my heart pounding and racing, I feel a "trickling water" effect in my forehead, down middle of chest, and back. Has anyone ever experienced this?
I need to see an opthamologist asap. I will check into CINE MRI and CSF block/leak- Waiting for insurance and feel like a sitting duck. ;( I have applied to be a research participant and spending hours looking for help with medical care- even just a consult to know I am ok and this can wait until I get insured .
Thank you all for your support and would very much appreciate all the answers I can get. XO, Stacey
Ps. Max power- Has your wife had endo issues or testing? I am also going to have consult with neuro-endocrinologist- I am new to this, but I hear many Chiarians also have "smooshed" or asymmetrical pituitary issues - this is my issue with eye sight changes because the gland is now infringing on optic bone/nerve.
Hope this helps and best to your wife.
Thanks for all of the replies everyone.
Yes she had both a NS and a NR. Her last mri was in may and didn’t really show any changes or cause for concern, I think the main thing he was looking for was the development of a syrinx (which hasn’t happened yet).
I actually did ask about a cine mri on our last visit… But I believe the jist of his response was that it shouldn’t be necessary.
As far as medication, the only thing she takes is advil… And that’s only when she is experiencing a headache that isn’t going away.
There’s great medication for migraines!! Which really help. Imitrex 100mg. Nose spray and pills. The pills you can cut in half if too strong. It helps more than Advil!
I've been experiencing tunnel vision several times a day for a couple of years now. For me, this happens only when changing from sitting to standing or sometimes when I lie down on my belly with my head tilted back. My peripheral vision goes black, slowly closing in to where there is only a small dot of vision left. I stand frozen for just a few seconds with my eyes shut because I can barely see and painful pressure builds up in my head that is debilitating. I cannot do anything for a few seconds (maybe 20 seconds at most), and then the pressure subsides and normal vision returns. This sounds like maybe what your wife experienced, but mine has never lasted minutes. On a scale of 1-10, the pain is off the charts and so unbearable that I'm afraid I'd kill myself if it ever lasted any longer than the few seconds it does. I started Topamax a few days ago and have been experiencing fewer of these headaches, but I still have headaches and the Topamax adds more symptoms that I'm not so sure I'm willing to tolerate much longer. I'm going to give it some time though.
I am still in limbo with finding a neurologist or neurosurgeon. My family physician is working with me as much as she can but said there is not much she can do for me which is why she referred me to a neurologist. The neurologists office has been very slow in receiving my referral, viewing my MRI and setting up my appointment. They cannot see me until February which is why my family physician honored my request for Topamax and continues my Tramadol. It's not providing much relief. I have drop attacks and many painful symptoms with my chiari malformation (7mm herniation), syrinx and scoliosis. I'm hoping the neurologist has good news when I finally see her.
Anyway, since this has been happening to me for a couple years, it is my guess that your wife's new symptom is not a medical emergency. It is definitely a very painful and distressing one though, and it is our body's way of telling us something is not right. I am not a doctor and I think your wife needs to bring this up to one just to be on the safe side as it could be something totally different. I will be saying a prayer for your wife.