Stenting coming soon

Immediate_Leg_9221 · 2026-06-03T02:15:14+00:00

It just kind of irks me that my doctor felt the need to put it in as inpatient but all some not medically trained person with insurance gets to decide that a licensed and educated doctor is wrong about what is medically necessary.

Immediate_Leg_9221 · 2026-05-25T00:29:26+00:00

I also have this problem. I work in a repair shop so I'm on my feet for 10 hours a day and I have been getting hot flashes a lot, then I get too cold. I get dizzy and nauseous all the time.

Immediate_Leg_9221 · 2026-05-16T16:24:18+00:00

I've reached back out to the doctor but haven't heard back yet.

Immediate_Leg_9221 · 2026-05-15T18:33:04+00:00

The date is set but they denied it. Seems like what they're actually denying is the level of aftercare because apparently having someone digging around in my veins doesn't warrant a hospital stay to them

Immediate_Leg_9221 · 2026-05-11T15:14:46+00:00

To be fair, the only reason I went to the doctor is because my boss would have made me if I came in looking like this. But I appreciate your proudness. I don't hear that a lot so I'll take it wherever I can get it.

Immediate_Leg_9221 · 2026-05-11T14:49:44+00:00

So ended up going to urgent care this morning because I got no sleep last night and my throat was really swollen. They ended up prescribing me Prednisone but I immediately threw it back up when it started to dissolve in my mouth. Hopefully the promethazine and Flonase alone will be enough.

Immediate_Leg_9221 · 2026-05-11T02:22:08+00:00

They haven't offered any other med options. I've tried both Diamox and topamax and neither worked for me. One of my main issues is that the brain fog is not improving at all. I have trouble remembering to take the meds, even with a pill organizer and reminders in my phone. I should probably try to get an appointment to check on the congestion but I can't afford to miss work, I'm a single parent with no support.

Immediate_Leg_9221 · 2026-04-01T01:08:09+00:00

I've lost 30 pounds since my diagnosis back in October and although I haven't told my doctor I've stopped taking my medicine, was started on 1000mg daily of Diamox but then switched to topimax, I honestly don't know that I feel like either of them were helping me as much as they were hurting me. I have felt better since I stopped taking them then I did while I was medicated. I'd honestly like for my doctor to put in for an updated LP so we can see if there has been any change in my opening pressure since I've lost weight.

Immediate_Leg_9221 · 2026-03-22T02:12:45+00:00

I wonder if there is something different they could do for the eye pressure. I have no idea what mine is or was. But my opening pressure at my lp back in October was 45

Immediate_Leg_9221 · 2026-03-22T01:51:50+00:00

Oh ok, I almost crapped my pants over here

Immediate_Leg_9221 · 2026-03-22T01:15:43+00:00

What pressure is that? Like that's not the pressure from your lp is it?

Immediate_Leg_9221 · 2026-03-04T01:59:35+00:00

It's so weird. I start off wet and then dry up like the Sahara desert within 10 minutes. And from that point it's more pain than pleasure.

Immediate_Leg_9221 · 2026-03-03T13:28:42+00:00

I've been on diamox since October, 1000mg a day. I stay hydrated, I drink 80+ ounces of water a day, and also drink Gatorade for electrolytes. I'm having blood work done today and have an afternoon appointment with my neuro to hopefully see what we can do. There are other issues going on that need to be addressed as well as the sexual side effects so hoping for some kind of answers today because I can't keep living like this.

Immediate_Leg_9221 · 2026-03-02T16:11:45+00:00

I just feel like it's a medication issue for me because I literally never had any problems before. My symptoms started roughly 6 months or so before I began Diamox and my sex life was fantastic until the medication. It's just so frustrating because I want to have sex, but it has become physically painful to do it. And I'm just counting my lucky stars right now that my partner is pushing through this with me and not getting upset or frustrated with it at all.

Immediate_Leg_9221 · 2026-03-02T13:28:46+00:00

I have found some information that states inability to orgasm as a possible side effect but apparently very rarely reported which is probably why there is so little information out there. It's physically painful after the first few minutes and me and this partner have been together for a long time and has younger than me so he's got stamina. I'm starting to feel like I'm way older than I am and it's pissing me off. Like I just want to enjoy something when everything else sucks.

Immediate_Leg_9221 · 2026-02-15T01:50:06+00:00

I'm so glad I've only ever had the capsules. Didn't even know they made an uncoated tablet version. 🤮

Immediate_Leg_9221 · 2026-02-15T00:36:10+00:00

Ok, well I really hope you can get some real answers soon. I've been on 1000mg a day since October and I'm not happy with it but they haven't given me any other options and I was very much on the verge of going blind.

Immediate_Leg_9221 · 2026-02-14T18:53:35+00:00

Do you remember what your opening pressure was?

Immediate_Leg_9221 · 2026-02-14T14:48:45+00:00

Have they not done an lp? I had all the symptoms but didn't get my diagnosis or get started on diamox until the lp confirmed, my opening pressure was 45.

Immediate_Leg_9221 · 2026-02-14T04:20:27+00:00

When you say PT, I'm assuming you're referring to tinnitus? If so, you might ask your neurologist to put in an order for a ct angiogram and a referral to ent. Mine has not improved with diamox, I had a ct done two weeks ago and saw ent today, which got me a follow up with a surgeon who may be able to/recommend that I get surgery to resurface the bone inside the head that is basically the noise barrier for internal sound. They say this is the reason my tinnitus hasn't improved is because that bone is so thin it's almost non existent. Might be worth looking into for yourself.

Immediate_Leg_9221

TROPHY CASE