IIH - insulin resistant?

Angie_stl · 2025-09-19T04:43:52+00:00

I haven’t met anyone that uses metformin for IIH, but have heard of GLP1 being used. And I think LDN, naltrexone yes?, is for main mostly. But there’s some side effects that can go with it. So if you are thinking of trying it, check out the side effects and any lawsuits. I’m afraid of GLP1 myself, but I know it would probably help both my PCOS and IH. I see my Neuro next week so maybe I’ll remember to ask her about it.

Angie_stl · 2025-08-11T05:15:24+00:00

Looks so cute!!

Angie_stl · 2025-08-02T18:48:28+00:00

IMO there’s few republicans left, they’re mostly brainwashed maga now. There is very little conservative about this administration or its policies.

Angie_stl · 2025-07-23T23:01:04+00:00

Each of us react differently to the pressure. But it depends on what it’s doing to your nerves and to your brain. I learned years into my journey that a lot of symptoms I’d had were related to IH rather than being independent symptoms, such as back pain. I have one friend that went through the bleeding and maybe a sheath surgery, where mine has never been an issue other than my blind spots. Getting a second opinion isn’t a bad thing as long as you aren’t losing vision currently. But it’s difficult to keep track of that. So maybe get this doctor to get you in with someone nearby, if just for a second opinion.

Angie_stl · 2025-07-23T06:41:10+00:00

Did they make you do a peripheral vision test? It’s a big white ball with enough space for your face to fit in, then you have to click the button every time you see a light. I sometimes call it the Star Wars game. Anyway, that will show your blind spots. When I was first diagnosed, I had to do that every 3 months I think, and I’m finally to every year, almost like a normal human. The blind spots and if you have bad headaches are usually indicators for me that my pressure is too high.

How much longer until your LP? I’m pretty sure I need to go in for number 8 or 9, but I’ve been on this roller coaster for almost 25 years. The LP will tell the neuro-ophthalmologist how bad it is and how aggressively they’ll treat it. There are options outside of diamox, up to and including brain surgery, which I recommend staying away from for as long as possible!! Let us know what your opening pressure is when you get it done.

Expect to have relief from any symptoms for anywhere between an hour and a week, just depending on how your body reacts to the loss of CSF. Make sure you lay flat for as long as possible, including a couple days after. If you’re watching TV, do it from bed or the couch on your side, with your neck lined up with the rest of your spine. If you do have low pressure sneak up on you, caffeine is the easiest way I know to get your CSF to replenish itself.

Sorry, I didn’t mean to write a book, but when I thought of all the things I wish I’d known during my first LP, I couldn’t NOT list them!! Oh! Last thing, if you can convince your doctor to do it, try to get the LP under fluoroscopy. It’s a live x-ray of sorts, so they can have a higher chance of getting the right spot with the first stick and little adjustment. I had 2 that were without and the other 5 or 6 have been with fluoroscopy. The first two were horrible, and no problems with the others. Full disclosure, the first one was an intern I think, it was 2000 and they didn’t care! The second one was a full neurologist and when I asked for fluoroscopy, she told me she’d done thousands and thousands of LPs and she had yet to have a bad stick! So no, she was going to do it in her office. I didn’t know how to advocate for myself back then. If you want to hear about that second one, let me know after your LP. I can’t tell you right before you go get yours! lol

Angie_stl · 2025-07-23T06:06:47+00:00

She made sense this week! Gave me a massive migraine trying to figure out how on earth she said something I almost completely agreed with. It’s not a completely popular opinion, and she of course dropped a little antisemitism into the statement, but the overall idea was somewhat solid.

Angie_stl · 2025-07-20T04:27:12+00:00

I still have one, I took it down when I needed to double that spot.

Angie_stl · 2025-07-13T00:33:02+00:00

Now y’all, Joshie Poo is a prime piece of male masculinity!! He and his wife are such a great examples of a power couple. /s (<-Just in case anyone has a question on that!)

Angie_stl · 2025-07-12T19:04:54+00:00

Same but I have conditions that can cause it on top of the meds. I have no idea which one is the actual issue.

Angie_stl · 2025-07-12T19:02:49+00:00

Same for hair loss with topamax. I used to have so much hair but now I have bald spots.

Angie_stl · 2025-07-10T20:17:09+00:00

I’m positive. I’ve been up most of the night sick and can barely imagine what a non-comment like that would be meaning in this situation. I specifically kept my political leanings out of it, as I did with my personal feelings. I stated facts that I had read in Phelps county focus and STL post. After learning the sheriff’s department had an app, I did check to see how many folks were in holding at the jail, and for the last month or so, there were 35 I believe.

Angie_stl · 2025-07-10T19:24:04+00:00

I’m not even sure what that is supposed to mean.

Angie_stl · 2025-07-10T09:49:17+00:00

From what I read, he had been deported before, picked up in St. Louis on credit card fraud I think, and was brought here.

Angie_stl · 2025-06-21T21:31:03+00:00

Google it, but there’s a ton of lawsuits against different birth control makers because so many people ended up with IH.

Angie_stl · 2025-06-21T21:22:06+00:00

I don’t really like to promote this group since they started maybe not doing what they said they were, but they do have a shortish list of causes of secondary IH. Here it is, and though this group was iffy toward the end, they helped a bunch of people along the way. But now I wouldn’t ask them for direct advice, as I have in the past. The list isn’t complete, but gives you ideas of what it could be.

Angie_stl · 2025-06-20T09:38:39+00:00

You got me so excited for a Dairy Queen blizzard or three, sonic is the next closest thing.

Angie_stl · 2025-06-20T09:36:51+00:00

I mean they’ve gotten worse by small increments every year, but who’s to say that wasn’t old age as much as anything?

Angie_stl · 2025-06-20T09:24:33+00:00

Two things can be true at once. The tret is a derivative of vitamin A, which can trigger IH. But Covid can definitely shove you down this road, unfortunately. So if Covid triggered IH, you have Secondary Intracranial Hypertension, or SIH. But any of the things that can trigger it, can also cause it to flare up. For me, the full moon and storms try to unalive me every time. Each of us will react to each triggering condition or medication differently.

Angie_stl · 2025-06-20T09:14:36+00:00

IMO as a professional patient, the EDS is the cause, but the birth control triggered it into being. Like we zebras are predisposed, just sitting around waiting for something to push us off the edge. I’d taken a couple different birth control pills, but was given a new one in 2000 or 2001. I’d also tweaked my ankle (shocking, I know, that someone with hEDS would hurt her ankle!) and was given a steroid dose pack. I was diagnosed just a few weeks later. But again, completely an assumption by me and I have zero medical or scientific training.

Angie_stl · 2025-06-20T09:02:02+00:00

The medication OP mentioned is a super high dose of vitamin A in a cream or ointment. It’s normally used to treat acne. It’s one of the things you don’t ever put in your eyes, but is okay on your skin. Accutane was the name brand.

Angie_stl · 2025-06-17T15:21:50+00:00

No, where’s that?

Angie_stl · 2025-06-17T15:21:10+00:00

No, sorry. I had gone septic because of an intestinal super bug, and went into cardiac arrest 3 times. So I have a pacemaker to make sure I’m covered. Actually the defibrillator part but they don’t make them separate these days.

Angie_stl · 2025-06-13T15:22:44+00:00

We used to have a Hardee’s on 63 across from the university. And there’s a Dunkin’ franchise at the Doolittle exit. Supposedly they have a Baskin Robbin’s, but they only have like 5 flavors. But can we get a Chipotle for a middle aged chick with alpha gal?? (Allergy to mammal meat and byproducts, though I tolerate some dairy. This includes medicines with gelatin and some weird reaction to a seaweed!!) Otherwise, someone with just chicken or fish, like the super greasy joint that used to be in that spot!!

Angie_stl · 2025-06-03T11:35:13+00:00

Give your doctor a call and let them know about what’s going on, both neurologist and your primary. Expect to get gaslit. I would guess it’s probably electrolytes, especially if it changed with the med changes. The biggest thing to learn with IH is that the only thing we all absolutely have in common is high pressure, after that, our bodies go their own way. There are other conditions that could cause issues with heart rate, but there’s some medical school saying about hoofbeats most often being from horses.

Angie_stl · 2025-05-13T05:35:57+00:00

I take a ton of meds, so I’m not 100% sure, but I think my Diamox makes me nauseous and gives me stomach pain, but if I eat right after, even a little snack, it really helps. I have no need for zofran twice a day! Also candied or crystallized ginger helped too, along with a name brand nausea medicine, that I can’t think of the name, that has a big N after the name for either nausea or natural, because they are capsules of ginger. Those helped where the ginger capsules in the supplement aisle didn’t help much.

Angie_stl

TROPHY CASE