Chiari Online Support Group

Anyone Else Experiencing These Symptoms.. Also, a background on me

Hello all, a little background on my chiari journey so far. I was diagnosed may2018 kind of by default. I was having issues with headaches and double vision and extreme fatigue. I went to an ophthalmologist and I had severe papilledema. I was sent emergency to a nearby neuropthamalogist who told me he suspected IIH… waited a few weeks for an MRI… Returned 6 weeks after when MRI results were in and IIH was kind of confirmed. It was a big guesstimate because he had also found out I had a chiari malformation at 8mm. Because of this he opted not to do lumbar puncture (which is totally okay with me lol :joy:) He put me on diamox a few times a day for a year and voila… no more double vision/headaches.

Now to take it back, a year leading up to my diagnosis I started to have weird symptoms (which now I know was related to either the IIH or Chiari Malformation or both lol) I would get vertigo very infrequently especially when standing or turning too fast, balance problems, muscle/nerve twitches in my face, nose, lip, fingers, arms, toes and back (all very mild at that time) pain at the base of my neck.

Fast forward to now… I still get all the muscle/nerve twitches in the same areas… I even get these weird vibrations or fascultations (?) In my feet very frequently throughout the day, still have pain at base of neck, still have weird balance, now starting to get some brain fog every now and then, right side weakness maybe once or twice a week that affects my entire right side from eye to leg, my hands are also very shaky at some times and it depends on how I’m holding them and what I’m holding in them as well… some days seem much worse, some days seem much better. I notice my headaches and symptoms are also much much worse during my “time of the month” (sorry to the men out there TMI) lol. But outside of that I feel alot better than I did a year ago and would take this over anything that was going on last year. I think the diamox really helped with the pressure.

At my most recent neuropthamalogist a few weeks ago he said he is shocked that I am doing so well. He also says that he wants another MRI to check on my chiari but said since I’m doing so well he doesn’t really want to mess with it? He said if it ever gets to the point that he cant treat it then he will refer me to a neurosurgeon. Which I guess I’m okay with for now. I’m just soooooo worried about my symptoms and their progression (it currently isnt too fast). But on the same hand I’m kind of happy with where I’m at because my aunt also has a chiari and has had several surgeries and is completely disabled, cant work ect…

Another topic I wanted to bring up… can weight make symptoms worse? I NEVER had symptoms until I gained a ton of weight that I’m currently working to get off. My neurologist says that the 30 pound weight loss that I achieved in the past year helped significantly with my papilledema and intracranial pressure… he also says he feels my chiari would benefit from extra weight loss… currently 250 5ft 5in… 24 y/o F.

Thank you all for listening! Please share if you have had any of these symptoms…did weight loss help you feel better? Thanks again!!

Hey Taylor,
Welcome to Ben’s Friends. I must say I find it interesting that you’ve been diagnosed with IIH and chiari. IIH or idiopathic intercranial hypertension basically means intercranial hypertension with no known cause and yet Chiari can be known cause of intercranial hypertension as it can alter the flow of cerebral spinal fluid (CSF).
I have intercranial hypertension due to a blockage of the aqueduct, where the fluid drains from my skull, but because there is a known cause it is not idiopathic.

Your fear of your fluctuating symptoms is normal. It often scares the daylights out of me, always on edge thinking ‘Ohh that’s different… …is that ok?.. …Do I need to act?’ Here, I think the best advice is “Be aware, but not alarmed”. I now look for a progression of symptoms. A headache for me is normal, visual distortions a bit more concerning, tingling in my hands and feet that’s even more concerning, but then if I have nausea leading to vomiting too. I need to act, NOW. Now these are MY signs, where others may have other signs.

Weight gain can cause issues as this can alter the body’s positioning and how the fluid flows from the brain through the spinal cord. Although for me my weight post surgery has gone the other way, I used to be around 95-100kg. I’m more like 75-80kg and that’s dripping wet and fully clothed.
Hope it helps.

Merl from the Moderator Support Team