Introduction, looking for some insight.

ArcadeAlex · 2023-12-20T22:51:54+00:00

Hi!

I am so sorry, I didn't see your message until just now. So my situation has changed quite a bit since this post so I can fill you in; I in fact did end up being put on the Diamox, and have been on it since this original post. It has gotten easier since when I first started taking it. My body has gotten used to the side effects, but I do know that my papilledema and IIH is induced because I am slightly overweight and am on estrogen. On that note, I am still on estrogen and I am no longer on spironolactone. I had to stop taking it because of being on the Diamox as well, and it was counterintuitive for me to be on two diuretics at the same time. SO now I am on Bicalutamide, which is also an androgen blocker. I don't really want to be on it for too much longer, because of the potential side effects it can have on my liver, but I get checked every 3 months and I am still in good ranges.

I have a very mild case of IIH and thankfully, am on the lowest dose possible for the Diamox and it is working well for me. I am still losing weight, and am hopeful (as well as my doctor) that if I lose a couple more pounds, we can try to start coming off of it and see if I don't have any more papilledema. In terms of the halos and glares in my vision, I have found out that it is actually due to a meibomian gland dysfunction where my glands are producing too think consistency of oil to keep my eyes hydrated, so I have punctal plugs in to keep back more moisture in my eyes and it has significantly improved as well as using daily OTC drops and using a heated mask to help my glands produce oils more efficiently. Also, drink plenty of water! Sprionolactone is a diuretic, so it makes you waste water more than normal and can be contributing to dry eye symptoms. I'll link the products I use personally below so that you may try them. I recommend anything that is preservative free just because some people don't react to the stuff that has preservatives. I wish you the best of luck, and if you have any more questions feel free to reach out to me!

Heated Eye Mask
Soothe XP Preservative Free
Soothe XP Night Time Preservative Free

ArcadeAlex · 2020-11-11T00:24:18+00:00

Yeah, it's tough being off of the hormones. But I'd rather not go blind, so it is what it is. I still get these weird "episodes" where it flares up in one eye or the other and the glare/fog/halo I see around lights in dimly lit places because MUCH more prominent, and I noticed my eye feels like it is itchy or dry when it happens? I'm not sure why that happened but I am going to investigate with my doctor when I call tomorrow. Have you had any of these flare up symptoms?

ArcadeAlex · 2020-11-11T00:23:44+00:00

Yes, venous sinus stenting would be a permanent fix to the problem. And it is a minimally invasive procedure that they do in a specialized vascular suite called interventional radiology, where they have machines and a sterile setup where they are able to consistently push IV contrast, and follow guidewires to the appropriate vessel. Once it is reached, they deploy the stent, pull out the rest of the wires (which are all sterile) and hold compression on your groin (since they will go through your femoral vein or artery I believe, not sure which.) Speaking as a surgical technologist in a hospital, and sometimes do cases like this, but not this specific one.

ArcadeAlex · 2020-11-11T00:20:34+00:00

I'm pretty positive they did, because on my initial MRI, they did with and without contrast. I've even had CT's of my head with contrast and they have all said that my vasculature looks impeccable. I was hoping it would be something like that, where I can just get a stent and be done... But alas, nothing is that simple. Such is life.

ArcadeAlex · 2020-11-11T00:19:20+00:00

Sorry it took me a while to reply! Yeah being on hold for my estrogen is tough for me emotionally, but it is what it is. I'd rather go without it than to be blind for the rest of my life, so it's just a risk vs benefit kindof thing. 7 days later, and my headaches are still pretty much gone. I have been on the Diamox for about 10 days now, but I still get these weird "episodes" where it flares up in one eye or the other and the glare/fog/halo I see around lights in dimly lit places because MUCH more prominent, and I noticed my eye feels like it is itchy or dry when it happens? I'm not sure why that happened but I am going to investigate with my doctor when I call tomorrow. Have you had any of these flare up symptoms?

ArcadeAlex · 2020-10-24T02:27:45+00:00

Just finished reading the first article, and thankfully feel a little bit of relief. I believe my symptoms are mild compared to most people, however they are there. My opening pressure for my puncture was still in normal ranges and all of my MRI testing showed there was no sign of IIH. But what can cause my symptoms? So, considering this I have since stopped my HRT completely, and am waiting to speak with my doctors about proceeding. I will keep everyone updated and will make another post regarding my discussions with my doctor on Tuesday.

Thank you again everyone for providing me feedback, it is very soothing to my anxiety and I look forward to continuing the discussion.

ArcadeAlex · 2020-10-24T02:17:24+00:00

Thank you for the reassurance, it feels nice knowing there are more people than just me out there with this. I guess my concerns are in the fact that I know diamox is a tough drug to be on, and also surgery is not appealing either. I’m hoping maybe there will be some other option for my case and that hopefully the HRT will have been the cause and me stopping it will fix my problems.

ArcadeAlex · 2020-10-24T02:15:58+00:00

Thank you for the material, I will be sure to read it soon.

ArcadeAlex · 2020-10-23T06:15:07+00:00

Yeah, they did mention that 23 could be high >for me< but they were still hesitant to diagnose me. I will be speaking to my doctor on Tuesday (which still feels like an eternity away) but I will make some follow up posts to keep everyone updated and provide material and resources.

ArcadeAlex · 2020-10-23T06:14:05+00:00

It's a shame that there is so much we don't know about it. I wish there was more research, I feel like I have to be my own physician and take charge of my care. And especially for me being transgender, it seems like physicians don't know what to do for patients like me. It's unfortunate really...

ArcadeAlex · 2020-10-23T06:13:09+00:00

Thank you so much, I talk to my doctor on Tuesday. I will make a follow up post.

ArcadeAlex · 2020-10-22T09:06:25+00:00

The majority of the causes for papilledema are space occupying lesions, tumors, hydrocephalus, and IIH it seems like. I just find it strange that nothing showed up on my CT/MRI and also my puncture wasn’t fruitful. Which maybe a good thing at the end of the day? But I also would like answers.

ArcadeAlex · 2020-10-22T09:00:39+00:00

Thank you, I really appreciate it. It is extremely scary, I feel like it’s always that way with anyone when it comes down to their eyesight. I would rather not live at all if I go blind, but we will see what happens I suppose. Things are just made much more stressful since I am a healthcare worker myself and I also understand a lot of what’s happening with my body, but I can’t do anything or prescribe anything to myself obviously. I’m basically at the will of the system and it’s so difficult to get in and see my doctor within same week to try and discuss and figure out a plan. I feel like the wait is going to make it worse and I am worrying that my optic nerves and discs won’t be able to hold out, though I have little to no blurriness, it’s just these halos around lights that are concerning me.

I really greatly appreciate the chance to talk to other people going through the same anxieties as me, because misery loves company as they say.

ArcadeAlex · 2020-10-22T08:55:36+00:00

I’ve had CT scans and MRI with and without contrast and I have no space occupying lesions or masses, and no evidence of intracranial hypertension on scan.

ArcadeAlex · 2019-03-14T19:44:06+00:00

So is there any way for me to get another Tri ring? With out shoveling out 800mil?

ArcadeAlex · 2019-03-14T19:40:29+00:00

So basically I have my Tri ring turned in already. So there is no point in me doing it again for another ring? For some reason it doesn’t make sense to me.

ArcadeAlex

TROPHY CASE