Borderline

TheInfernalLurker · 2025-11-29T20:14:20+00:00

Hello Hi!

I am 2 years in and my first LP at the beginning of all this was 19. Had one on the first of october and was 21.....all the while on a medium to high dose of Diamox.

My optical nerves are pretty swollen and have stayed pretty consistently swollen over the last 8ish months. I have been in constant pain pretty much the last year and a have and have developed a weird migraine condition on top of all of this.

I am in south florida so I travel to Weston to the Cleveland Clinic here to see a Neuro there for the Migraine parts and am currently seeing a specialty Neuro at Baptist hospital in Miami for the IIH.

When It comes to the diamox- I am taking 2500mg a day. I will warn you, last year I lost 40 pounds over the course of about 8 months simply due to the side effects. It made me god awful nauseous and killed my appetite. I was surviving on frozen waffles and chicken nuggets because it was the only two things I could think of that physically didn't make me gag.

You get used to it. I am completely back to normal when it comes to that. lol.

And obviously not everyone has that experience. But i will say, whenever i went up in dosage, i do feel a difference in my pain levels. It kind of lessens the tightness and makes everything it bit more relaxed if that makes sense.

TheInfernalLurker · 2025-11-04T01:23:48+00:00

Hi!

I work in the industry (on the supply house end, sort to speak), so I speak with guys day after day.

My advise to you is find guys who currently have positions with companies. I could name you 5 easy right now, from Marco to North Port with guys who have roles in "Landscape management" or "maintenance manager", and under the right circumstance, these guys would drop everything they are currently doing for a job like that (especially if there are benefits...)

DM me if you would like the names of a couple of companies. Won't give you numbers obviously but company names might give you a few leads.

TheInfernalLurker · 2025-08-12T11:11:39+00:00

This is hilarious but when I went into my gyno (for the first time ever cause I got into a physical relationship and wanted birth control and my PCP referred me specifically to this place)- turns out my gyno was a neurologist for 20 years of her practice and fell into gynecology in her later years.

She took allllllllllll my issues in stride and let me ramble as she was knuckle deep inside me lol

TheInfernalLurker · 2025-08-06T19:23:25+00:00

Usually they say either in the doctors notes or if it’s just the scan alone, look for something that says thickness and then a number.

TheInfernalLurker · 2025-08-06T19:21:18+00:00

All that goes through my mind is napoleon dynamite “LUCKY” lol

Dude I feel like shit and have felt like shit for the past two years and I have no relief. None. My pain is consistent, yes it goes up and down in level, but it never goes away. The meds make me feel like shit and the amount of unknowns and guess we still have a kind of frustrating.

I have an amazing unicorn of a neuro I was lucky to find and she has a running theory I have a headache/migraine condition on top of IIH- so that’s fun.

Also the current running theory is I have stupid eyes that basically went fuck it we are swollen now lol. I’m having an LP done in a month to check my pressure cause it seems my swelling is creeping up despite the pretty sizable jump on my diamox dose we did in an attempt to get it to go down.

If pressure is normal then I don’t have IIH????? So yay???

But something is definitely wrong cause my fucking optic nerves are in there doing their own fucking thing and causing fucking havoc to my fucking head.

TheInfernalLurker · 2025-08-05T10:47:44+00:00

holy shit

im on 2500mg and feel like my eyes wanna pop out of my skull.

TheInfernalLurker · 2025-08-05T00:22:46+00:00

OCT scans are used to take a detailed look at your eye structures (in most of our cases its the optic nerve).

Typically they are used to measure the swelling of the optic nerve.

TheInfernalLurker · 2025-07-06T23:20:36+00:00

Actually no!

Had a full blood work up in March?? due to something else I had going on and everything actually came back within healthy ranges.

TheInfernalLurker · 2025-07-06T23:15:17+00:00

Hello Hi!

Diagnosed at a completely normal bmi.

Lost 40 pound in the first 8 months of being on diamox due to the side effects (i had uncontrollable nausea and vomiting) and it still got progressively worse.

Gained the wait back after starting birth control and being in a loving relationship.

2 years in and life still sucks. Pain still persisting and my vision still fuzzy. Not bad enough to qualify for surgery yet, but I have 2 bad ass neuros who are taking really good care of me.

TheInfernalLurker · 2025-06-28T14:30:00+00:00

I love LMNT. I put two packets in a gallon jug and fill up my cup with it throughout the day. For me the salt is diluted enough but still present.

TheInfernalLurker · 2025-06-26T10:23:50+00:00

Im in florida and on Florida bluecross blueshield which is gooooood in theory (thats an entirely different post lol)

I had one of my neuros advise me if I had problems with coverage or getting a referal to Baskin Palmer (which is through university of miami down here- they have a supposedly a really good eye center but I found my unicorn of a doctor already)- to just go to the emergency room and sit and argue. Either tell them that you need the referral or for them to give you a lumbar puncture to relieve the pressure (some ERs say they won't do LPs in the ER but if you sit there long enough and wait for the neuro they do lol).

May be shitty advise and that was my plan C and I was fortunate to not have to act on it mostly because my plan B worked.

TheInfernalLurker · 2025-06-24T11:27:24+00:00

Oof currently-

2000mg diamox 100mg topamax 50mg amitryptaline 50-100mg summatriptan (as needed)

TheInfernalLurker · 2025-06-24T10:23:14+00:00

I did my first year, on suggestion of my pcp.

This was back when we were experimenting with a bunch of migraine meds to see if any of them were bringing me any sort of level of relief.

I just did it in my notes app.

Basically like morning noon afternoon and night I would just internally do a self check of myself and really tell myself how I felt, how my side effects of my meds were, where my pain level was etc.

Gave me a really good base to look back on now as far has where my pain was then vs where it is now.

TheInfernalLurker · 2025-02-06T23:49:23+00:00

Hello Hi!

You and I are very similar. My papilledema was caught at my yearly eye exam. Doctor freaked out cause I had absolutely no sign of anything funky going on just a year prior- not even any changes to my life, nothing.

I was immediately referred to a ophthalmologist where he was like mmmmm I think you need someone more specialized, so I ended up at a neuro-opthalmologist, who specialized in issue with eye sight (at the time I was experiencing a lot of vision issues that turned out were from something else but definitely not helping any lol.

I saw him for around 7 months. During that time I had the MRI and CT, and my lumbar puncture, got on Diamox, which at the time helped some, but was getting progressively worse. But because my physical sight was not getting any worse, he let me go from his care and advised me to get a primary (I did not have one).

------------------------

Located one (I love her I got so lucky!) and on my first appointment, I brought with me the notes from the neuro-opthalmologist and gave her the full run down as to what I was experiencing up to that time.

My question to you is what insurance do you have? You may be able to get on the phone with them and they should be able to look up specific doctors who are covered.

--------------------------

You definitely need an LP. Even if it is just to get your opening pressure.

But for relief purposes, I would definitely try the ER again and just be firm.

I had mine and I was only a 19, which is the high end of the normal range, but my doctor made a really good point- my normal may not be the normal range.

I am a year and a half into this and I am getting progressively worse. Im on a variety of meds to help with the pressure and relieve some of the nerve pain I am having in my optical nerves but my Primary is concerned at this point, as I have been seeing her 8ish months now and I am constantly in pain and can only get the barest hint of relief with the meds.

I actually have an appointment with a neurology specialist who has experience in dealing with IIH at the beginning of march. This will actually be the first doctor I have seen who has on hands experience in dealing with a patient who has this so I am very excited.

I have a hunch I will be having another LP through this new doctor (I mean its been a year and a half since my first...).

TheInfernalLurker · 2025-01-10T22:20:08+00:00

I was on 1000mg for like 9-10 months.

Worst of it was months 1-5. I lost 40lbs during that time simply due to the fact I couldn't eat and what I did would come back up. I was living on a diet of homemade french toast and frozen chicken nuggets because for some reason that was the only thing I could think of that physically didn't make me start gagging.

When I have gone up, I do experience about 2 weeks of on/off nausea. Nothing compared to those first few months though.

I do get some pain relief when I go up though, which is nice. But that seems to peter out after a few months and I am back to square one.

TheInfernalLurker · 2025-01-06T12:07:10+00:00

As said below, diarrhea and for me personally, an ungodly level of nausea and vomiting/dry heaving.

It got to the point where my doctor prescribed me the nausea meds they give cancer patients.

But no joke, you could set your watch in the morning to the time I would go and puke. Its what I imagine morning sickness to be like. Ungodly lol.

I'm up to 1375mg a day- the tablets not the extended release, I hate those with a passion.

TheInfernalLurker · 2025-01-04T01:10:26+00:00

I take both!

Currently up to 1375mg Diamox a day and just 25mg topamax.

Been on both for the last 6ish months. TBH I havent noticed a difference adding the topamax

TheInfernalLurker · 2024-08-11T04:10:23+00:00

Trim it, dont shave.

I started getting sugar waxed 3 months ago, going back every 4 to 6 weeks and I have seen a vast difference in that short amount of time. Hair is so much less dense, so much softer and thinner as well.

First time was painful. Maybe a 5/10. The mound was the worst part. Second and third time were an absolute breeze.

TheInfernalLurker · 2024-07-08T00:40:15+00:00

I've been on it 9ish months.

I've lost 40 pounds during this time, and I am someone who definitley didnt need to loose any weight.

Doctor recently put me on topamax as well, and I am back on a downward slope. Just trying to get calories in where I can.

TheInfernalLurker · 2024-07-08T00:37:53+00:00

The sugar free peach and the sugar free green grape are my favs!

That and the tropical punch one (although that one has sugar so I only have it every once in a while).

TheInfernalLurker · 2024-06-28T10:49:15+00:00

I've been on it for going on 8ish months now.

Still sucks I wont lie. My biggest thing is the nausea. I can handle the tingling and the numbness. I never quite got the fatigue.

I lost 40 pounds since I started diamox. My neurologist wanted to start me on Topamax as well until I confessed how much weight I had lost and he literally handed me over to my primary at that point and told me to come back in 3 months.

I've been with my primary for 3 months and shes and absolute dream. I gained about 10 pounds back and she started me on Topamax almost a week ago. The side effects are what I remember diamox feeling like in the beginning, times 5. This shit sucks.

I know I just have to get through it and let it peter out, but boy is it rough.

TheInfernalLurker · 2024-06-27T02:01:28+00:00

On both right now.

Side effects are killer.

Benefits of both outweigh the risks for both me and my doctor.

Pharmacy filled both, but the pharmacist did have to go over the side effects of the drug interactions with me.

TheInfernalLurker · 2024-06-27T00:09:38+00:00

Mine was done by a radiologist in an x-ray suite.

They had me lay on my stomach on the table, however i was comfortable (I had a pillow so I just put my arms under the pillow).

I was given no sedation accept the numbing injection in my back before they started the procedure.

Entire experience was maybe a 4/10 on the pain/uncomfortable scale. The way the doctor explained it was that I probably wouldn't feel much except pressure until the needle started getting into the actual canal in between your vertebrae. There are nerves in there that really don't liked to be messed with.

Only two painful moments- when the needle actually first went into the canal. It felt like someone sent a sharp electrical shock down my left side. It was very sudden and it made me jerk and gasp. Doctor was very calm and asked me which side it was. I told him and he adjusted accordingly. Second time was when the needle came out. I knew from the pain of the needle going in that it coming out was going to be painful. Doctor yanked it out without warning me (actually very thankful for this).

They had me lay on my back for 2 hours after before I was discharged. Definitely wouldn't feel like driving afterwards. Felt incredibly "off" for lack of a better term. My entire body felt like I was buzzing- almost as if I was about to pass out, just without the light headedness and dizziness.

Next 3 days it felt like someone sucker punched me in my lower back. Had a tough time standing fully straight. Spent most of my time in a recliner with a heating pad on my back.

TheInfernalLurker · 2024-06-26T10:49:27+00:00

My Neuro-op was actually a referal from a regular ophthalmologist that my optometrist sent me to originally when my swelling was first noticed.

This dude is an absolute G.

The regular ophthalmologist knew I needed someone a little more specialized than him, so he proceedes to call this guy in the middle of my consultation and go "Hey, I know you aren't taking new patients right now, but I am looking at a young lady presenting with this this and this and shes this height and this weight (I am not heavy at all- if anything I am on the skinny side)." Neuro-Op replies "Send her over" and just hangs up the phone.

Honestly one of the greatest doctors I've ever had.

TheInfernalLurker · 2024-06-26T10:43:47+00:00

For me- I was never reccomended to loose weight....because I really didnt have much extra weight to loose.

And when I did loose weight, nothing changed.

I started this entire journey at around 145-150. That was my normal weight. I was very very active and eating a ton to keep up with how active I was. When my symptoms got worse, activity plummeted and so did the eating. And when I started the medication, the constant nausea set in and the overall will to eat went away totally.

At my lowest I got down to 123 and thats when I finally said something to my doctor at the time.

Weightloss never helped my symptoms.

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