man it's good you had fun scary about what ever happened with the lights and you.

I go to a bit of shows here and there, and i've come to take my sunglasses in no matter when sometimes the lights are just to much for my poor eyes. my friends always laugh at me going your in the front row wearing sun glasses but hey it really helps me be able to see. ( i also bring my own earplugs i swear i must look 80 in the crowd)

For seizures, maybe I will take sunglasses, but I will also take a preventative medication for the chance of a seizure.

It was fantastic, though! I was 7th row. On the 6th when I go to see The Band Perry (again) and Brad Paisley, I will be 9th row. Then November 7th when I see Carrie, I am 8th row. And on December 21st, for Trans-Siberian Orchestra, I am 3rd row and they REALLY use lights...so yeah!

I totally love hearing your stories. It's really refreshing to see someone here get out and enjoy life. My butt is pretty much glued to the recliner all day long....booo-hiss...lol. I'm pushing to get better and praying this IIH away. Enjoy the upcoming concerts and please be careful my dear.

I think it IS related to OTC/IH. The first sign of problems were not headaches for me. They were what my neuro said were epileptic-like activity in the brain. I didn't really get the headaches until I went off the low/medium dose antibiotics I was on. Now I can't take any antibiotic without the pressure increasing, even the ones considered "IH-safe." But again, most of the pain comes post-antibiotic more than when I'm actually on an antibiotic.

Cottages,
Are you saying that you think the seizure-like activity was PTC/IIH related? Or do you think, at all, that it could possibly have been from the antibiotic?

This was the first time I had been on an antibiotic since February, which was after my incision from my last surgery got infected from reopening a little bit.

I also had a seizure in my sleep three nights ago. I ended up dislocating my shoulder again (happens every time now!) and actually ended up with a really, really bad case of jaw spasm/locked jaw. I have had pain in my jaw since, some trouble opening it to take a bite, laugh, yawn, etc.

I guess, if even "safe" antibiotics effect me, it could possibly be that that was the cause of these two episodes. I didn't really think of that. My mom and I decided to watch for any signs that it was causing issues with my PTC or anything, but neither of us thought of that! I just talked to her about it and she thinks it's a little too coincidental too! I started taking the antibiotic, two days later had the first episode (described in my initial post above), then three days after that, I had the full on seizure.

This is crazy! I never imagined all of this was possible...it is kind of scaring me! If an antibiotic as weak as Amoxicillin causes these issues with me, what would I take for infections or when I get as sick as I was last week?! :(

Yes I am saying that I think the antibiotic is was a "but for" factor for the seizures. I also think that IH was a "but for" factor for the seizures as well. Sorry to talk in legal "causation" terms, but I really think this is the best way to express what I am trying to say because there can be more than one "but for" cause.

For example if you got shot in the shoulder and foot and bled to death, but wouldn't have bled to death if shot only in the shoulder or only in the foot, each would have been a "but for" cause because "but for" the shot in your shoulder, you would not have bled to death from the foot injury, and vice versa.

So, here, in other words, if you never had IH--whether or not in or out of remission at the time--I think that you never would have had a seizure on this antibiotic. Whatever bodily process goes wrong for IH to occur, a mechanism in most, if not all, antibiotics seems to exacerbate the "gone wrong" process.

Minocycline is known for its very high lipid solubility profile, which allows it to penetrate tissues much more effectively than antibiotics with a lower lipid solubility profile. One of the "tissues" it easily penetrates is the spinal column (CFS).

Amoxicillin is slightly lipid soluble and does penetrate the CFS, although not as effectively as minocyline. But once you have IH, it MAY be that Amoxicillin penetrates CFS more readily, again because of the "gone wrong" process, whatever that is exactly.

I really did not have these epileptic-like attacks once I got off the antibiotic. Once I got off them, that's when the seizure-like symptoms subsided and the typical IH symptoms really set in, along with a few atypical symptoms, like a burning or what feels like a scalp someone rubbed menthol on. Someone else on this forum has talked about that tingly/menthol symptom.

Anyway, since my IH was initiated by minocycline, I thought I'd be okay on other antibiotics that are not known to cause or exacerbate IH. Nope. I learned this year that they may all cause problems because two on the "safe list" took my IH and tinnitus through the roof again after 6 stable months of low/tolerable head pressure.

So, like you intimated, gee, hope we can all steer clear of all bacterial infections for the rest of our lives...right? Ugh!

Kind regards,
Cottages

Cottages,
It's so frustrating! What if we get a really bad infection! Say, just suffer?

This past time, I was coughing so much that I would vomit from or and also I plopped muscles out from between my vibs.

It is a no win situation.

Excuse any spelling...I keep dosing off from the muscle relaxer!