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Symptoms I experience with Arachnoid cyst

Jul 26, 2009 - 7 comments

I am still waiting to see the neurologist.  This is a list of all my current symptoms, and ones I think are related to the cyst, feel free to email me  if you are suffering from the same things, and have an arachnoid cyst:

Forgetfulness...loosing things, no short term memory.....I have to write it down, then I loose it,  then I forgot I wrote it. Then find it weeks later and wonder....Why did I write that down.  Its great LOL
Dizziness, physical exercision like walking up 5 steps gives me a headrush.
Vertigo, though only when I am laying down, dont know if thats truly vertigo.
*Kidney stones (5 at once, and kidneys full of 'sand') no prior problems with kidneys, no family history, healthy diet and exercise.
Constant headache, dull, throbbing pain that worsens when I cough, bend down, put my head down, etc.
Severe headaches (in last 6 months, accompanied by vomiting) sensitivity to light sound and smell while having a *severe headache.
Visual disturbances, these happen a lot, at times it looks as if I JUST had my picture taken, then it fades, others come in the form of a long yellow white streak across something. Also if I see something bright white, there appears to be, spots on it, blue or yellow moving, blurry spots. At night trying to sleep it sometimes looks like there is a strobe light on, when my eyes are closed.
Inabality to focus, I took ADD medicine in high school, this helped, but I never got back on it, maybe I should
*Fatigue, or I feel weak, like I have NO ENERGY.
* Mornings when I wake, I am shaking for an hour or so
Though I feel fatigue, I cant sleep at night, perhaps due to my stressing over the cyst.

* symptoms that have appeared in the last 6 months

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by jesicomp, Nov 12, 2009
ok long time no update. I went to the neurologist, in July. He told me that, the cyst was not related to my symptoms. He gave me some anit-nausa meds and some mild, very mild pain killers. Whatever he gave me was much like fioricet. That stuff is a joke. I have been turning to my own treatment over the last few months. It seems to help for the most part, but I am still not satisfied with no real answers. No one I know has a headache every day, so I am going to keep going until I figure it out, We are now living in PA.

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by bigbird1976, Dec 31, 2009
I just read your blog and wanted to let you know bout me i am a 33yr old and was born with the cyst
I have now had surgery twice for an arachnoid cyst..
I have had incredible headaches and pain in the right side of the face for years and told that the cyst couldnt be causing it.. When dizzyness and the feeling of falling when i layed down was taking over my life and i slept on the floor

I had a hickmans reservoir put into the cyst in sept in08 ..and drained relief was pretty much soon after..
Headaches not gone but alot less intensity and all vertigo feeling are gone at this stage
then in Feb this year i have lost some sight in the right eye and  showed intercranial pressure again.
the cyst had closed over again.. MRI showed the cyst had reformed and was placing pressure on the optical nerves , ventriculargram scan not pleasant to do showed that the cyst was blocking the flow of the CSF fluid so once again i had the cyst deflated and drained.. Sight has not returned, headaches have not changed still constant varying in intensity.. but my eye is not sore allll the time.. So once again its wait and see .. i am going for another scan in feb..
Be persistant with following up changes, i know i will be.. email chat if you want to.. i know what you are all going through.

Avatar universal
by britboy007, Jan 06, 2010
I'm a 47 year old male in pretty healthy condition.  I recently went to the Dr because of an inner ear problem.  He diagnosed a perforated ear drum and requested a CT scan and MRI.  Yesterday, he gave me the results and also told me that they had discovered an arachnoid cyst in my brain "and it was the biggest one he's ever seen".  He did show me the scan and to my amazement it takes up almost 1/3 of my brain.  He said it's probably congenital and that it's been slowly growing over the past 47 years.  I have made an appointment with a neurosurgeon in about 10 days.  I have not experienced many of the symptoms that other people posting here have described.  I'm sure it varies with each persons situation.  Does anybody know how the cyst is drained?  Is this the only remedy?          

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by Jeanean419, Jul 27, 2012
To Britboy007, I was told the same thing and it is not normal for a female(me) to have this kind of a cyst, because it is more common in young males. my cyst took up the whole left side of my brain crushing it against my skull. I had to have surgery to lessen the pressure because I couldnt walk, I was dropping things and having seizures. Most cyst are drained through what the call Fenestration were they drill a whole in your skull and make little holes in the cyst so it can drain back into your body, I am coming up on my yearly MRI that you have to have the rest of your life to make sure that the cyst doesnt grow any bigger

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by Worried_mama_bear, Apr 18, 2014
My son is 16 years old and we just found out he has a arachnoid cyst. He was at basketball practice and experienced extreme dizziness and he couldn't walk so coach had him sit for a while thinking that he was just out of shape. He just wasn't coming around so he called me and when I was talking to my son he had slurred speech! I told them to take him to the ER immediately! They ended up doing an MRI and they found the cyst but the neuro thinks the dizzy spell is not related, but ever since that day he has suffered migraines vertigo balance disorder nausea. I am really concerned because we just aren't getting answers! He Is now seeing a balance physical therapist. He is 16 and trying to deal with this every day! The dizziness never goes away! He is on topamax for migraine and meclizine for dizziness! Frustrating!!

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by Beccacollins1, Jan 30, 2016
Worried_momma_bear....please let me know what happens with your son. I have a 17 year old going through the exact same situation.

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by Motherof3Garcias, Aug 31, 2016
I am a 32 try old female with arachnoid  cyst in a rare place (cavum vellum) right smack in the center on my brain.  I have bite experienced the vertigo but yes to the headaches and also headaches when I vend down and come back up, and horrible short term mmemory loss.  My pcp put me on topamax, it's helped with headaches,  concentration,  memory,  energy.... I'm only taking 1/2 of the full dose in combination with vitamin b complex and magnisium.  I do MRIs and followup with opthmology every 4-5 months and while it's big and growing I pray that we don't need brain surgery bc it's in a really tricky spot to get to.  Anyway,  try doing something like that to help the headaches it's dealt changed my life for the better!

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