okay hello is there anyone with pseudotumor cerebri/iih alive on this apppppppppp
hi! I'm Erin. I'm new here. feeling a little down because with the weather changes I haven't really been. feeling well. my head hurts and ear are ringing. are there any others out there who are experiencing the same with IIH recently?
other then lumbar punctures and medicine is there any other way to treat the fluid?
has anyone found out that their intracranial hypertension was caused by ssri or antipsychotic? im waiting for my MRI. im just wondering what could be causing my intracranial hypertension.
How do many of you deal with working (if that's not to personal)? I know for me with all the meds plus the swelling and the brain foggyness and the fact that I can't drive because all the other things this condition has caused it makes it hard keeping a job😕
Other than meds, are there other treatments I should be trying? I haven't had a headache free day since diagnosis.
how many neurologists did you go to before finding one thats helped you?
I was diagnosed last year by my neurologist with pseudotumor cerebri, and I also struggle with adhd. I was recently prescribed adderall for my adhd, but had to get the ok from my neurologist to take it. I was wondering if anyone has taken adderall with pseudotumor cerebri, and it affected them in any way, because I still haven’t heard back from my neurologist🙃 ⭐️also I had a spinal tap done last year, and everything came back normal⭐️
My neurologist has sent me to see an opthamalogist to confirm his suspicion that I have pseudotumor cerebri. He seems fairly certain based on my symptoms, MRI, and retinal scan. One of my symptoms is double vision. Have any of you lost your ability to drive/been told you no longer can drive by the doctor based on the double vision or other vision issues? I am quite worried about this now that my appointment is less than 2 weeks away.
My eye sight has gotten significantly worse in the past 1 or 2 months, out of nowhere. I am having blurriness, eye pain, and some colored spots occasionally. Does this sound like it could be a sign that my pressure is high? I’m scared it’s from the IIH…
I started taking Minocycline in 2012 for acne,which is what they think caused my IIH. I had 20/20 vision before that and my vision was getting worse every 6 months or so until I got diagnosed a year ago and stopped taking the acne med and went on a diuretic for 5 months. After that my pressure has been good at my Neuro Opthamology appts. My script for glasses hasn’t changed in a year now. I haven’t needed the diuretic again yet and haven’t been having many symptoms though I had a horrible headache last night into this morning and can’t help but worry. My Neuro Ophthalmologist appt was supposed to be this week out near Boston (I live in Western MA) but she’s moving practices so I’ll be seeing her in May for a check up. They check the pressure through my eyes instead of ever doing an LP again,in another comment I explained I got a CSF leak from my LP and it gave me a horrible what they call spinal headache,I thought it was just normal back pain after the LP but it got so bad I had to call my dad and have him bring me to the ER. To patch the hole they had to,bedside in the ER with no sedation,draw blood from my arm and inject it into my spinal cord to patch the hole up to stop the leak. I also was in a lot of pain during the LP which supposedly isn’t normal. Phew has it been a year😅
I’m trans and my doc forced me off T after my IIH diagnosis - so far I haven’t found a doc willing to let me back on it. Hoping to connect with someone else on T with IIH about whether you were able to continue?
Have you gone through with a surgical procedure for your IIH? if you have, which one and has it helped? How many different medication cocktails did you try first?
I suffered from this over the summer, intense migraines, neck pain, and extreme fatigue. I got a lumbar puncture and have been on medications for it as well. I haven’t had the symptoms since, but my vision was damaged and I’m wondering if anyone has had lasting effects from it as well.
What’re your experiences with iih/pseudotumor cerebri?
Other than meds, are there other treatments that may help?
Hello, I'm newly diagnosed with IIH or Pseudotumor Cerebri. I have struggled with losing weight and staying fit my whole life. How do you deal with all of the new restrictions that comes with managing the illness, like losing weight and keeping it off and the side effects that come with taking acetazolamide?
I'm in the process of getting a diagnosis of IIH and I also have Hashimotos and PCOS. I was wondering if anyone else has all 3 conditions that I could connect with? I'm trying to get a game plan together to combat all 3, but it is really confusing and difficult.
Hi Im Bonehead5918 its nice to meet y'all! I go to get an MRI done on my brain to rule out a 🧠 tumor on Tuesday. My question is. After you had your MRI and it was clear did they make you do the spinel tap? if so how long did it take? how many times did they stick you and did you end up getting a spinel headache after?
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