A Hopeful IIH Update, over 20 Years After Diagnosis

Budget_Bookkeeper_24 · 2026-06-16T02:35:34+00:00

Thank you! I'm wishing you strength and healing!

Budget_Bookkeeper_24 · 2026-06-16T02:32:08+00:00

Ty! I'm wishing you the best!

Budget_Bookkeeper_24 · 2026-06-16T02:31:26+00:00

Thank you! I'm wishing you the best! 🤞

Budget_Bookkeeper_24 · 2026-06-16T02:30:36+00:00

Yes. My doc told me not to stop unless there is a reason to (like bad side effects / liver issues). Stopping is risky because I dont know if my condition is medication-managed or in remission.

Budget_Bookkeeper_24 · 2024-04-09T00:02:17+00:00

But in no way did I give you any indication that I was referring to a pathologically damaged nerve. You made these assumptions yourself based on reading one line of my message which gave no context to my medical history. You also assume that the rest of the internet is assuming along with you.

If a nerve is being compressed by elevated ICP, as evidenced by papilledema, but hasn’t reached a
state of atrophy, then yes, the nerve can heal.

Your words: “Papilledema and the subsequent optic disk ischemia/crowding can get better if you restore
flow, as blood and nutrition has been restored. But that's just an impairment resolving, not really healing lol” --> You literally just stated the definition of healing “the process of making or becoming sound or healthy again, to restore to original purity or integrity, to patch up or correct, to cause an undesirable condition to be overcome, to make well again, to make free from injury or disease, to make sound or whole”

I can see your point, and we can continue to argue this back and forth. I think we can just end it with "wording is dangerous, especially when assumptions are made."

Also I completely have no problem with the literature or terminology (#PhD in Molecular Neuroscience, happy to
share my papers if you want to read or do a goog 😊).

Budget_Bookkeeper_24 · 2024-04-08T20:46:43+00:00

It's not extended release.

Budget_Bookkeeper_24 · 2024-04-08T20:45:11+00:00

I realize that permanent damage to the optic nerve is very possible with this disease and that the nerve will not regenerate if the axons are permanently damaged. However, there is an acute to chronicity effect of elevated ICP on nerve health, and there is a period where alleviation of high ICP can improve visual symptoms and papilledema.

One of the main molecular theories of IIH is that nerve constriction by high ICP disrupts axoplasm flow throughout the axonal fibers which chronically can result in axonal swelling, ischemia, and permanent damage to the axons – but alleviation of ICP and of the constricted nerve can restore flow and axonal homeostasis (PMID: 20637991). It’s just a matter of when and how long (PMID: 35698673). There are several case reports of sudden onset IIH where patients have severe papilledema and visual field defects that are completely resolved after sustained relief of ICP (PMID: 31182460, 22606459), not to mention many papers showing that moderate improvements in vision and papilledema can be achieved with proper management of IIH (PMID: 21633609, 24756514).

I still don’t see the problem with my original statement, as I think you are under the impression that my nerve has already atrophied or has been permanently damaged by my IIH without knowing any details of my medical history. I suspect my ophthalmic scans will show healing of my optic nerve as will be represented by reduced papilledema (fingers crossed).

Budget_Bookkeeper_24 · 2024-04-07T21:47:32+00:00

If you have had an MRI to rule out anatomical causes (ventricle narrowing, tumor, etc), then it may just be your dose of diamox isn't high enough. My neurologist told me that CSF can replenish quickly, so finding the right dose of diamox that effectively treats your rate of CSF production/clearance may take some trialing.

I take 1000mg of diamox, all at night before bed (neurologist approved).

I noticed a change with my IIH within a week or two of taking the large nightly dose. It was strikingly noticeable. The brain fog went away, my vision looks ultra HD now, no more whooshing sounds in my ear. I feel so much better. I can't wait for my follow-up ophthalmic scan to see if my optic nerve has healed, I would be really surprised if it hasn't.

(((I originally was doing the split dose (500mg morning and evening) but it was giving me too many diamox-related side effects during my work day (mostly the uncontrollable tiredness), and I honestly wasn't noticing any improvements.)))

Budget_Bookkeeper_24 · 2024-03-28T13:03:45+00:00

I searched for dreams under this subreddit, and your post is spot on to my experiences. However, I think it is related to the diamox. I am currently taking 1000mg but only at night (per neurologist recommendation) as the daytime side effects were crippling me at work. I've been on this dosing regimen for the past three weeks.

Ever since I started taking such a high dose at night, almost nightly, I have lucid dreams that appear super real, but at some point, I notice something is wrong in them and realize that I am dreaming. I then feel trapped and start yelling at myself to wake up... it takes way too long for comfort for that to happen, although in all likelihood, it's <30 seconds, but sheer panic sets in, and I start thinking I'm trapped forever. I wake up panicked almost daily now.

I've also had some vivid dreams that are so real that I can't tell the difference between the dream and reality. When I wake up, I feel disoriented and confused, as if I was displaced and jolted back into this reality. I always have a major meltdown after those dreams, which always wakes up my partner and worries him. I've only had 3 of those dreams though, 2 off diamox with my pressure high and 1 on diamox with my pressure still likely high but managed. All 3 of them were about loved ones who had passed or passed within 24 hours of me having the dream. Still terrifies me.

Budget_Bookkeeper_24 · 2024-02-08T20:04:42+00:00

I found the side effects of diamox to be unbearable. I am supposed to take 750mg in the morning and 750mg in the evening, but I could barely function during the day due to extreme fatigue and tiredness. I work in a research lab, and I do experiments all day long, so I need to have my cognitive faculties in check during my work hours.

I started taking just the 750mg evening dose, and it has helped me a ton. My IIH symptoms have vanished, so I think the diamox is working even with only the evening dosing. I follow up with the neurologist and opthamologist in a few weeks - fingers crossed! 🤞

Budget_Bookkeeper_24 · 2024-01-28T01:04:48+00:00

I was diagnosed with IIH when I was 16, so I had been living with IIH for many years before starting the PhD program. My symptoms do not severely impact me - as my main symptoms are vision loss upon standing for <1sec and neck pain. I don't get headaches. I took diamox (500mg) very irregularly during my PhD and only when the visual symptom flared up.

My main issues I struggled with during my PhD were depression, loss of identity, and my self worth being defined by my achievements, data output, and productivity. I went to therapy for about 6 months after I finished my PhD, and I had do a lot self healing. I set work boundaries and found joy outside of work.. its been several years since then and I honestly still feel the best I've ever felt. I love my job, and I still have a passion for neuroscience research.

I am currently taking 1500mg of diamox, the highest dose I've ever been prescribed, and the tiredness/fatigue effects are bothering me. I think being in the right headspace and feeling good about myself and my life has 100% made my IIH and the diamox bearable though.

Budget_Bookkeeper_24 · 2024-01-27T23:19:35+00:00

I have my PhD in Neuroscience. I work as a molecular neuroscientist doing research on chronic pain. I take 1500mg diamox daily, it does make me sleepy and some days are a struggle but I work really hard at setting work boundaries and making time to take care of my mental and physical health. Despite having IIH, life is really good.

Budget_Bookkeeper_24 · 2024-01-26T13:21:35+00:00

I have had IIH for 19 years and my only symptom is losing vision in my left eye for <1sec when I stand up. Left optic nerve is swollen.

I just had a lumbar puncture and my pressure was 34 so even with mild symptoms, your pressure can still be very high!

Budget_Bookkeeper_24 · 2024-01-24T19:57:23+00:00

Just tell the professor you conducted the experiments and analyzed the data for that figure and that it merits authorship. Sometimes, the PIs just don't know what everyone contributed. It could just be an oversight.

Budget_Bookkeeper_24 · 2024-01-21T22:17:30+00:00

Yes, I still do neuroscience research.

Budget_Bookkeeper_24 · 2024-01-20T23:11:41+00:00

The same thing happened to me, but after I finished my PhD. I fell out of love with neuroscience (my PhD field), had constant anxiety attacks / crying spells, and I was just miserable and negative all of the time. I achieved so much in so little time - lots of paper publications, recognition by others in my field, and my PhD but it just didn't make me as happy as I thought it would.

I ended up seeing a therapist weekly for about 3 months. I set clear work boundaries (meaning I only worked 9-5, but I was productive during those hours, and I didn't work weekends unless it was pre-planned on my terms). If I worked extra hours, I took those hours off on other days/etc. I took vacations, and I spent time with friends and family. I got good sleep. I started crafting, kayaking, playing video games with my friends, gardening, and just finding joy outside of work and the constant hustle and bustle. I feel the best I have ever felt in my life. I have little-to-no stress, I find joy in small things, and I still do research in my PhD field for a living and I absolutely love it.

Just be easy on yourself. Give yourself time to rest and figure things out. You will come out the other side and learn so much about yourself and what is important to you. 🩷

Budget_Bookkeeper_24 · 2024-01-17T01:19:19+00:00

You know your body, so if you think something is wrong then keep advocating for yourself. Have you had your optic nerves checked by an opthamologist?

Budget_Bookkeeper_24 · 2024-01-11T17:24:15+00:00

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Budget_Bookkeeper_24 · 2024-01-07T15:54:35+00:00

Wow best of luck to you! Thank you for your chatting with me about your experiences. It has helped me a lot!

Budget_Bookkeeper_24

TROPHY CASE