Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
My 19 yr old daughter was just diagnosed with IIH or Pseudotumor as the Neurologist called it. I have been researching and asking tons of questions the past week. That has led me to this forum. About a month in a half ago my daughter started complaining about her eyesight getting bad, Mainly her periferal vision and she said she had a blind spot in it as well Just the right eye. She also had really bad pain in the sholder and a neck. we thought maybe a pinched nerve was casing the and affecting her eyesight. After seeing a few doctors to an opthamologist who told us her optic nerve was inflammed and seh needed to see a NeuroOpthamologist. So we went in and they did all of tests and she said she has nerve damage in the right eye and the left eye is also really inflammed. Sge wasn't experiencing any other symptoms just the loss of vision. The neck and shoulder pain went away after 2 weeks or so on there own. She went in for an MRI with and without contrast and everything came back fine. No tumors. Then she went in for a MRV again everything perfect. They set up a lumbar puncture and she had a very high opening pressure of 51. They tested the spinal fluid and did a full blood workup and all of that tested fine. So the neurologist diagnosed her with Pseudotumor and she is taking 500mg diamox 3 times a day. She is a 19yr old college basketball player and is 5'10" with a weight of 125 lbs and a BMI of less than 5%. The Neroophamologist is dumbfounded by this and said she has never treated a person at her age and weight and physical fitness level with this problem. Are there other people out there similar to my daughter who have this problem? I am really nervous that maybe they are missing something? Something could be causing this and deathly scared she might lose her vision. She has only been on the diamox for about a week. The side effects aren't terrible right now but I am worried when practices start back up. Thank you for any input.
My daughter Olivia had a really horrible neuro reaction to her immunizations (for middle school), HPV, TDaP , meningitis. Like within 10 minutes couldnt walk, vision changes, worst migraine ever, projectile vomitting. Neuro symtpoms lasted for 12 hrs. Then, she got an avulsion fracture a month later, swim team, made a funky turn at the wall transitionkng from butterfly to breaststroke. We didnt know she had this C7 fracture for over a month. only complaint was neck, shoulder, back pain. Ultimately, after intermittent vision changes, arm weakness, leg weakness, then migraines, then complete inability to mobilize without full body spasms... She eventually lost her vision from the severe papilledema. Which is how IIH was discovered.
She thin, petite, healthy eater. No soda, rare junk food. Loved when we made veggie juice, fruit smoothies. Ate TONS of kale,
spinach, mangos.
I KNOW this ALL over the place. But we still don't know if it was an autoimmune reaction to the vaccines (hpv and meningitis were new for her), or high vitamin A levels (yes she tested high), or if the c7 avulsion fracture somehow contributed??
She had a needle bone biopsy of cervical spine and was found negative for cancer or infection. Thankful! But she gor exponentially worse after the biospy. Like on couch and immobile. Way way Worse spasticity in every muscle: we could see the muscles all contracting! painful for her!
Her ICP/opening pressure was 47! and now on Diamox 1000mg/day.
She's having a hard time making it theough school, definitely no sports for now. EXHAUSTED and overwhelmed. Has cognitive and speech delays. Short term
memory loss now. Like your daughter, active, healthy, thin, no acne meds (except salisylic acid face wash: which we stopped out of fear once IIH was discovered). She sadly has stopped eating veggies and no mangoes. And is NEVER hungry (diamox). But luckily papilledema completely resolved and vision normal again. Did you check vitamin A??
i'm going to enroll her in IIH registry. Maybe this isnt as "rare" as thought
1:200,000 children
And, incidental finding of mild scoliosis during all of this.
Phew. poor girl.
Any similarities in our girls? Mine doesn't drink starbux yet
my son and I have IIH and my daugher who is 11 gets headaches. I have decided not to let her get HPV vaccine because of this syndrome they are seeing in some kids after that vaccine, which sounds just like IIH. reading your story I highly suspect the HPV vaccine. I'm so sorry, I hope she will recover.
anemia makes sleep apnea worse, by reducing oxygen carrying capacity.
Diamox causes acidosis, NOT alkalinity. and if you take baking soda you need to realize that this is a huge sodium load and this will contribute to brain swelling. it is not necessarily an answer for people with IIH and acidosis.
Much like your daughter, my vision was the only symptom I had. I have basically no peripheral vision in my right eye now and my vision gets kind of wonky the more tired I get, but my neurologist and my eye doc say that I am in the clear. In remission. Because of my eyesight though it sometimes doesn't feel like it. And gosh, i am terrified of headaches, because while I never got them I feel like any headache I get will unleash them all.
Yeah, it's scary, but be there for your daughter and take her out to eat after doc appointments. Spoil her a little, let her get away with stupid stuff sometimes. My mom does all of that for me and it's just such a relief, such a blessing.
(Btw, my bad vision happened because I couldn't afford the spinal tap and took too long getting it done, so if it was done in a timely manner, your daughters vision should be fine. And I've been told even months after the spinal tap and months of treatment the vision can repair itself- im kind of hoping for this)
Best of luck to your daughter and you, sending good vibes your way~~~~~