Arachnoid Cysts

Posted by melmoore @melmoore, Nov 6, 2023

I discov that I had a large cyst about 6 years ago, when at that time I was not showing symptoms other than occasional "episodes of vertigo and depression."
Fast forward to about 2 years ago, I started getting this horrible dizziness and motion sick feeling every day that last for most of the morning. This went on for months, when I got into a neurologist he said my symptoms are likely not related to my cysts and there has been no changes from my previous scan. He diagnosed me with vestibular migraines and prescribed me Klonopin. After being on that for a month they cleared up. Other than the occasional small episode here and there, I was fine up until a couple of months ago. Nearly every morning as soon as I start moving around I get dizzy and feel very motion sick and nauseous. This has caused a huge problem in my life because I've had to miss a lot of work and I lost a job because of that. Because some mornings are just not bearable. I went into the ER and they did a CT and told me the same, no changes. But from my own research the one cyst is very large (image of findings attached) and there's multiple other cysts that are not as large.
I'm waiting for an appointment back to the neurologist but at this point I feel defeated because, I keep getting told "There's no change, it's not likely causing my symptoms. "
Also there are some nights I have trouble sleeping because I go from really hot and sweaty to cold off and on all night, and those mornings are the mornings where the dizzy and motion sick episodes are the worse.

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Do your research ( John Hopkins, Mayo, Cleveland Clinic etc) and find a neurosurgeon who at least acknowledges that the cyst could be causing your symptoms. I have a rate and a small Tarlov cyst on the sacrum that most doctors say isn’t causing an array of symptoms that fit the cyst symptoms perfectly. . Fortunately I have a neurosurgeon who admits he doesn’t know much about these cysts but is willing to explore treatment options with me. These cysts can be drained to see if diagnostically they are the problem. If yes, there are next steps to pursue. Good luck. You shouldn’t have to suffer because a doctor doesn’t want to go the next step.

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Regarding vestibular migraine and vertigo attacks. Dr told me to cut out coffee and cutback on cheese and chocolate at nite. It worked. My attacks are very infreqent now And i also have a tarlov cyst on my sacrum. There is now alot of info about this condition online This is a good place to start
https://vestibular.org/article/diagnosis-treatment/types-of-vestibular-disorders/vestibular-migraine/
Hope this helps

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Severe vertigo is a disability and you should be able to apply for disability if you can't work because of it. Save all your reports and make copies to send to the SS. I was approved in 4 months on the first try but mine was for back issues. I sent every MRI, exray, scan any image and report I had. Letter you got when you lost your job should state why. Copy it all and apply.

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@melmoore Hello and welcome to Connect. I wanted to offer some information about another possible cause for vertigo and that is a cervical spine problem. I experienced vertigo myself that was being caused by muscle spasms spontaneously rotating my neck vertebrae. C1 & C2 can rotate a lot because they do most of the work of head turning. If they stay stuck in that position from a muscle spasm, it is stretching the vertebral arteries inside the vertebrae that run up both sides of it. If you look up or down, it kinks and already stretched artery that supplies some blood for the brain, and that causes vertigo. That was bad enough for me, that I fell backward one time and couldn't do anything to stop it when I looked upward at birds flying overhead. Having my physical therapist realign the vertebrae again stopped the vertigo, and after I had my spine surgery for the collapsed C5/C6 disc, the muscle spasms calmed down and it doesn't happen anymore.

To look for a diagnosis like this, you would need some spine imaging, and evaluation from a spine specialist and/or physical therapist. This is the kind of issue that can change a lot with good and bad days depending on how much stress you are under, and if you are doing anything physical that stresses the neck or shoulders because they are all connected by muscles. This is one physical cause for vertigo, although there are other causes. My guess that it may be worse in the morning could be related to the position your neck is in while you sleep and how your pillow may not support your neck properly. There could be some vertebrae rotation happening while you sleep. That does happen to me a little bit now and then, but not enough to cause issues.

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A recent trip to the ER with blood work and a CT, The CT showed no changes. My blood work showed slightly low WBC. I have not been sick other than these migraines and vertigo spells every morning and feeling very tired.
I went in to a clinic last week and was put off work and given magnesium 400 mg daily, vit B2 400 mg daily, zofran, and motion sick patches that go behind the ear.

My symptoms are nausea, motion sickness, headaches with throbbing feeling and whooshing and sometimes ringing in my ears. The rest of the time I feel just very low energy.
I'm just wondering if someone can tell me if these symptoms can be related to the cysts, since there are so many and a couple large...? Or am I looking in the wrong direction? Because this has severely impacted my life these past few months

I've had a little relief with the nausea medicine. But I am still having all the other symptoms.

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Update: I woke up yesterday morning to vision changes. Anything up close is really blurry. My eye glasses make it worse. Also when attempting to read or focus on something I get really sick to my stomach.
I've kept a small headache constantly the past few days.
Along with dizziness, nausea and feeling motion sick.

Can someone please point me in the right direction here. I feel like over the past 4 months every thing has gotten gradually worse. This fit is almost a month old with very few good days.
I'm still waiting for my neurologist to call with an appointment. As I had to mail paperwork back to them first.

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Praying you get some relief. When I have these issues, I sometimes get relief from Tylenol , Afrin and Omnaris nasal spray. When it is really bad, I have to take a methlyprednisone dose pack. 👌

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