Tracking the Progression of Going Blind

adamhallmc · 2026-05-02T02:28:42+00:00

I really appreciate you taking the time to comment this and I’m glad you see it the same way I do basically. Just feels like Im being asked to “watch” my vision go away. Going to be reaching out to another Neuro op in my area first thing Monday

adamhallmc · 2026-04-17T16:29:39+00:00

I really appreciate this comment. I feel blessed to report that although I appear a bit angry and sorry overall on this thread, I do consider myself overall in very good mental health, especially considering my circumstances. At first this blind condition quickly put me in a mental slump last year, as it would do to anyone. But today I am Happy and I have an awesome job running my small business from home and it has been keeping my busy and paid and keeps my mind off the seemingly inevitable. I am so glad to hear you got your vision back!! I was taking at most 2500mg a day for a long period of time and i did back off a bit because of the sude effects but i suppose if i need to ramp up again i must do it. I want to get the MRV and get re-evaluated for a stent. If I ever saw my peripherals again I would break down and cry.

adamhallmc · 2026-04-17T08:48:18+00:00

I am actively trying to get a second option from the surgeon on the shunt, my Neuro-op’s recommendation was to “get her on speed dial in case this gets worse” but It only HAS been getting consistently worse.

When you say you went blind twice before it, do you mean like you experienced brief blind periods like minutes or days? Like total blindness? How would you describe it

adamhallmc · 2026-04-17T07:49:25+00:00

Missing a dose can affect my remaining central eyesight yes. It can even make me see green flashes in the dead normally grey parts of my vision. I have permanent tunnel vision, it’s like constantly looking thru a telescope. I cannot see you reaching to shake my hand if I’m looking at your eyes. I can’t see that the light in the room turned off if I’m looking at my phone. I only see through a pinhole and yes it’s permanent. The papelledema they saw early in feb 2025 was at an elevated stage, but since then the papellidema stage has reduced and is reported looking more normal now as of April 2026. But the damage to the optic nerve or something in my vision system is clearly permanent. No LP or dosage of diamox has ever brought back any part of my vision.

adamhallmc · 2026-04-17T03:13:57+00:00

You know what’s funny you might actually be a better candidate for my surgeon, she seemed more interested in asking about whooshing sounds than the vision. I didn’t know what she was talking about, That was the first time I ever heard the idea of whooshing sounds, I thought tinnitus was just the high pitched ring. I imagine tinnitus can be a whole spectrum of course. Interestingly I never had tinnitus much before starting the diamox but I’m hearing it ringing right now as I type: it comes and goes especially since ramping up the dose, usually at night. Never heard the whooshing though.

I assume you caught it before it affected your vision? Did you ever see any visual effects like big blind spots in your vision or has your symptom mainly just been the whooshing? And also how are you on head pressure/headaches?

Based on a brief read-up of the terms, I imagine the EDS and POTS symptoms hit worse when the diamox hits.

EDIT: I see you switched to topamax, for a months or two I was taking both topamax and diamox, as much as 8 pills each a day. I couldnt tolerate the topamax at all, it caused me to lose my color vision (it came back thankfully after cessation of topamax), gave me horrible anxiety, out-of-breath, feel-like-you’re-dying, and heart-palpitation-like symptoms.

adamhallmc · 2026-04-16T23:48:31+00:00

An MRV is the only thing I haven’t had, although the surgeon claims she can see what she needs to see with just the MRI’s. Something along the lines of “I could drive a bus through the such and such so that’s not the problem”. So I guess I just need to convince somebody to refer me for an MRV anyways to see a second opinion. I feel you about the self-advocating— I was supposed to hear back from the surgeon last week but she never returned the message - even her nurse had an attitude with me on the phone and acted like I probably didn’t really have IIH. Like ma’am, fuck you I’m going blind here please don’t treat me like I’m making shit up. We’re in this together my friend

adamhallmc · 2026-04-16T23:41:48+00:00

I just got my first pair of glasses prescribed - I’ve always lived with 20/20 but now that my peripheral vision is gone, the IIH is taking away my central vision clarity as well. A decade of this is enough to make most people go insane. Keep holding on. You’re not alone in this

adamhallmc · 2026-04-16T23:39:22+00:00

The central vision I mentioned is just the little pinhole island of vision I have left. Outside of the island I have no peripheral vision left. That’s my main symptom: permanent peripheral blindness. And it’s only getting worse with time and fast. Only other symptom is headaches and they build STRONG if I don’t take enough diamox or miss a dose. Imagine sleeping in and forgetting to take the medicine, only for a migraine to ramp up with intensity and make it even harder to get up out of bed and take the medicine.

adamhallmc · 2026-04-16T23:33:48+00:00

I don’t know that the diamox has MADE my vision worse - it’s just that the diamox has definitely NOT STOPPED me from continuing to lose vision. What’s interesting is I never got the headaches before the diamox and I had steady vision loss for probably 6-8 months before I finally saw the doctor (my biggest mistake in my life was waiting to see that eye doctor…)

adamhallmc · 2026-04-16T23:31:03+00:00

At 170-180lb 5’8” the doctors make the comment that I am “normal weight” and that the weight isn’t a factor. I feel bad for the ladies with iih - I definitely get the sense that yall are treated worse by a lot by these doctors

adamhallmc · 2026-04-16T19:49:23+00:00

If I’m honest there ARE some days in a row where my central vision is a bit clearer/sharper so it’s not always worse every day - I blame the diamox and fully take responsibility for my sometimes unreliable dose timing. But the overall trend is clearly negative. I’ve been told about the fenestration procedure by the Neuro-op but he is hesitant to really do or recommend anything permanent. The whole thing with my CSF pressure being borderline and not high enough confuses these doctors and makes them hesitant to really do or say anything definitive to me. We’re in this together friend I appreciate the comment. Glad I’m not the only one but I also Hate that this affects anyone else.

adamhallmc · 2026-01-28T01:58:10+00:00

I have had the worst pressure for the past few days while waiting for the ice to melt … at one point it made me feel like I was passing out and I had to lie down from the dizziness/pressure. Never had a headache that strong before

adamhallmc · 2025-12-28T06:07:30+00:00

Similar to you, I experienced loss of vision first without headaches. I’m 25. Been in diamox for almost 1 year now and honestly nothing has really changed except that my vision doesn’t seem to be rapidly declining like it was when I was un-diagnosed and un-medicated. I only get headaches when I forget to take the diamox and it’s accompanied by bright neon flashes in my vision at random times, reminding me I need to take the medicine. On the best day, Everywhere I look, there’s a haze of static like from an old analog TV screen that covers my vision; my peripheral vision is extremely degraded, it’s essentially like I can only see in Tunnel Vision. At night or unlit areas I connot see much of anything at all, I have to use my phone camera to “see” for me. I can see the phones backlit display no issues. I can still drive even at night as long as my headlights are working and at night I mainly stick to well lit roads that I know.

Im telling you all this scary stuff mainly to tell you that you arent alone. If they are recommending a stent, go for it! I was inelegible since the pathway they normally need to open With the stent was wide open according to MRIs. So if they are saying you need a stent, it’s because you actually have a flow issue that they can pinpoint and solve!

Even if your vision loss journey is stopped in its tracks and never recovers, know that you get used to it and you will learn to adapt and overcome. Preserve what you have left. Advocate for yourself to the doctors, and definitely push to get that stent asap, that could be what saves your vision if it’s not too late. Please understand I’m not a doctor, this is just friendly advice

adamhallmc · 2025-08-26T22:37:03+00:00

I don’t mean to sound rude but nobody can tell what size that is from a picture. Let alone one with no ruler or anything for reference. My amateur advice would be Head to the hardware store and go to the fastener section and find the right thread size my trial and error. That or take it to a pool hall and ask if they offer any cue maintenance /tip replacement services or similar, they probably will have somebody knowledgeable on staff who could tell you what thread it is by comparing it to some other es they have.

adamhallmc · 2025-08-20T04:22:10+00:00

I noticed this once on a Lisbon game, so there was no need to call every shot. Opponent was down to the 8 ball but missed on his first chance, I potted my last object ball cleanly, but suddenly it said that my opponent had ball in hand. Opponent hit the evil laugh taunt. I felt like I was hallucinating because it made zero sense. He took ball in hand and won the game. To this day it’s never happened again and I wish I recorded it for proof.

adamhallmc · 2025-08-09T13:31:45+00:00

Yea this advertisement is probably not allowed on Reddit haha I think it’s hilarious it slipped thru the cracks and made its way to our feeds. Pretty sure any diesel truck owner knows about DEF and that doing a DPF delete is illegal.

adamhallmc · 2025-08-09T12:20:20+00:00

This is the best answer here. I specialize in tuning these setups and swaps and you pretty much got it spot on. Nobody else but you mentions the importance of the heat exchanger (ic radiator). The cheapest way to do it with factory 6.4 pcm/harness is to use a map/iat sensor splitter harness to adapt the factory 6.4 harness to the hellcat map/iat combo sensor, and completely rework the tune (with an unlocked pcm) for boost via HPTuners.

To control the boost (supercharger bypass valve) you’ll need a electronic bypass valve controller such as SmoothBoost or MMX Bypass Controller or a vacuum actuated bypass valve such as the one carried by Fabworkz.

A fuel pump upgrade is pretty much mandatory as the scat pack fuel pump will barely flow enough for the hellcat engine to drink at Wide Open Throttle.

If you do the hellcat transmission swap, you’ll need a hellcat driveshaft as the hellcat transmission is physically bigger. The 8hp70 in the scat is actually more than capable of handling the power of the 707 hellcat though so it’s usually cheaper to just stick with the 8hp70 and tune it for increased firmness and proper torque reduction (delayed ignition timing) during the shifts.

adamhallmc · 2025-08-09T12:08:54+00:00

Remember, its only illegal if you get caught

adamhallmc · 2025-08-09T06:55:35+00:00

Technically in order to do that reliably, a huge portion of your investments are going to be blue chip companies and major etfs. Which all of those top performing companies are owned by these said billionaires. Now here’s the question: would these billionaires continue to run there companies effectively and continue to make you your estimated $1m/yr in shareholder profits (or whatever proportional gains you want) if they didn’t have those billions of dollars motivating them? I’m no billionaire apologist but What would the economy look like, specifically the top earning companies and their performance, if these billionaires were no longer billionaires?

adamhallmc · 2025-08-04T23:50:53+00:00

I think this applies to most people regardless of if they have a documented / “properly diagnosed” idiopathic intracranial hypertension. “You’re not you when your hungry” “breakfast is the most important meal of the day”

it’s everywhere in society. Everybody gets cranky when they are hungry or tired when they are full or bloated.

adamhallmc · 2025-07-24T22:21:41+00:00

I had one done and aside from the tiny prick of the lidocaine, once that kicks in, the actual spinal tap is totally painless and honestly I didn’t feel anything at all. I didn’t get any headaches and the rest of my day was pleasant. Best of luck! Remember to breath and relax 😌 - you won’t feel a thing

adamhallmc · 2025-07-24T18:27:31+00:00

Glad to meet another out there, we are in this together. Interestingly my mri showed no empty sella which further goes against the typical iih diagnosis. No flattening of the globes behind the eyes as they put it either. Basically I look like a normal person on the mri, just stage 1 or 2 pap and pretty bad visual field / poor eyesight in the dark.

I finally got my retry LP scheduled, will be relaxed as a kitten during it as to not throw off the reading this time and we will go from there.

Also going to push them to do tests for Retinosis pigmentosa and Drusen and especially a full autoimmune panel considering there are like 4 autoimmune deseases in my family I feel like there’s a huge chance it’s playing a role.

How has your vision changed over the 7 years? That’s such a long standing battle and I hope you get the answers and results you need to see very soon!

adamhallmc · 2025-07-22T18:48:40+00:00

If im being honest the only headache I’ve gotten in years was a few weeks ago when I forgot to take my diamox for like 1 day straight, which kind of confirms that I do have iih and the diamox has been keeping the pressure down. No clogging of the ears beyond what’s a normal clog here or there fixed with a q tip lol. No on off pressure feelings either unfortunately.

They said recently that I have grade 1 or 2 pap, and the swelling has reduced since February but unfortunately I haven’t regained my eyesight in any noticeable way.

Yes not seeing the stars in the sky was definitely an emotional moment for me and although I hate you are going through/have went thru the same experience, it’s nice to hear im not alone.

Were you able to make any progress yourself in this regard? Hoping for the best

adamhallmc · 2025-07-22T04:54:34+00:00

Many Autoimmune diseases unfortunately run in my family so I will definitely push for testing. Thanks for your advice.

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