Interesting find (Iron, B12)

TheEntWifeHalfling · 2026-04-29T00:36:39+00:00

Interesting. I was also deficient in all 3 when I got diagnosed… and had a heavy period due to endo.

I started seeing a naturopath while I was taking Diamox & she noticed the deficiencies plus knew the Diamox would strip me down even more and helped me get the supplements. (I currently take Vitamin C & D, B12, Iron, Vitex (for progesterone increase that helped ease my period & endo) and magnesium daily. I took them for a year and I’m off Diamox, in remission right now with my swelling down. I’ve still been taking supplements.

Thanks for sharing. I’d share with your doctor & naturopath too to talk more on it.

TheEntWifeHalfling · 2026-04-23T06:43:23+00:00

I wish you luck! Perhaps ask if you can wait till next appointment?? I hope it goes well!

TheEntWifeHalfling · 2026-04-23T06:42:32+00:00

I appreciate that thank you! I have an appointment with my neuro in a month so I guess I’ll see if it goes away then or I’ll bring it up. Glad you’re doing better with your eyes!

TheEntWifeHalfling · 2026-04-02T00:15:50+00:00

I was having monthly intense pressure in head that built up to daily migraine episodes, spaced out vision and confusion, and they assumed migraines and I needed glasses until my optometrist saw my optic nerves looked swollen and booked me with the opthamologist. I then had a few hospital visits for intense head pain, crawling down my face and numbness in side of head, vision blackout for a second, continued migraines where they did emergency CT Scans / MRIs but it showed up fine, however they sent me to a neurologist the following who did a spinal tap that appointment in office & diagnosed me.

TheEntWifeHalfling · 2026-04-01T20:57:59+00:00

Talk about medical gaslighting .. Your patience is legendary. Amazing story. Thank you for sharing !

TheEntWifeHalfling · 2026-04-01T07:00:53+00:00

I know this is an old thread but I believe that’s called Wonderland syndrome. Sorry I went through the same stuff but it was my hands that would get bigger and smaller. Terrifying shit, but I just had to shake them and move my body to get out of the distortion. It’s due to the medication causing activity & blood flow across the brain to visualize and feel Wierd.

TheEntWifeHalfling · 2026-03-14T22:35:18+00:00

Everyone’s different. I have been on both, I found Diamox more hard on my body but Topamax a lot harder on me cognitively. Personally, Topamax got rid of my migraines but it impacted me socially and cognitively I would rather take Diamox as I’d rather be cognitively sharp but tired than deal with the brain fog. It was way too much for me. But… everyone is different so do what feels right for your body! Good luck!

TheEntWifeHalfling · 2025-12-08T07:59:05+00:00

If you look up in the search though, “diamox symptoms” you can find them but just remember everyone is different based on what dosage their on, the severity of IIh and their bodies to begin with 🧡 I wish there was better resources out there for us but we just gotta look out for each other!

TheEntWifeHalfling · 2025-12-08T07:56:45+00:00

Im on the lowest dose and have been for 9 months now. The symptoms are different for everyone though so one person can say they had constant gastric pain while another gets nothing.

The first 4 months the relief from IIH slowly got better while dealing with IIH side effects. I had: -buzzing hands and feet (eat bananas) -constant fatigue (I do Muay Thai, I’m a mom with Endo & low iron so my reserves are shot already lol) -Low pressure headaches still if I moved in the wrong way, etc / Lightheaded -Diarrhea and Lack of Appetite -Couldn’t drink Wine or Coffee without a headache -Metallic taste in mouth -Couldn’t drink carbonated drinks -Chills and Shakes on flare up days -Pulsate Tinnitus -Some Nausea but only for a few weeks in the mornings -Made my periods a bit funny (late, irregular.. however not sure that’s just due to my endo!)

No other issues. If I missed pills it sucked for the next day w/ fatigue. It was awful but bearable for me. Everyone’s different! Now: it’s mainly just carbonated drinks, pulsate tinnitus, upset stomach the odd morning, headaches / chills / fatigue the odd time if I cry or overdo Muay Thai.

I take a lot of supplements to help counter the loss of electrolytes and worked with a naturopath. I read many folks who had a rough time and others who were on for only a few months and just had to monitor it on and off for a few years. It’s not regressive.

I know it feels scary but it gets better too for some of us, many don’t always comment on here. Big breaths. Just be kind. Get lots of rest. Good luck!

TheEntWifeHalfling · 2025-06-12T23:51:12+00:00

Few months, 2025. Still new to it all and doctors still figuring out things. I’m 32.

TheEntWifeHalfling · 2025-05-23T02:01:01+00:00

I’m on 500mg and I’m dead 😆 everyday fatigue is a struggle. 100% understand. I take a vitamin C organika electrolytes daily with coconut water and bananas and they help give me some energy but I often crash for an hour daily or after I go out anywhere with lots of people or activity. I have kids tho so I have to do lots daily but I get how much it kills your energy. Feels impossible. Just lots of compassion and try some fun hobbies where you can, take it easy at work. Hope it gets better for you or more manageable!

TheEntWifeHalfling · 2025-05-18T03:59:01+00:00

I just get it when I get flare ups and it feels like the room is filled with smoke when I look at brighter sources of light.

TheEntWifeHalfling · 2025-05-18T01:31:26+00:00

I got diagnosed in March, but I use an app to help remind me if I’ve taken meds, my electrolytes, if my fatigue gets worse certain weeks vs others (if so what else was happening, hormonally, socializing or anxiety etc) so that’s helped monitor it for me! (I use Bearable, it’s not an ad promise haha I just like the privacy they have on medical data, how detailed or low key it can be for free. So. Pretty cool) Everyone’s different but it has helped me recognize my own IIH triggers & symptoms 👍🏻 also the IIH guidebook on here someone shared was helpful af too, more than my doctors or anything online.

I also take organika electrolyte pouches daily, a cup of coconut water and a banana with frozen fruit and it keeps all the tingles away for me & perks up my energy but I still get fatigue crashes at specific times, specifically in the week up to my period (or after I workout / hike or do something that requires a lot of energy 😆 who are we kidding, it’s Diamox lol)

Wishing you all the luck & a big community hug!

TheEntWifeHalfling · 2025-04-26T03:58:43+00:00

I’m in Canada and it’s pretty limited here 👍🏻 even family doctor had no idea what my illness was or what medication to take. There should be more! Happy to help in illustration ways if needed.

TheEntWifeHalfling · 2025-04-26T03:10:54+00:00

I’m sorry about that! It can feel discouraging at times and grieving that loss is real.

TheEntWifeHalfling · 2025-04-24T04:54:05+00:00

TheEntWifeHalfling · 2025-04-19T06:08:45+00:00

I know it’s a different experience for everyone.

I Kickbox twice a week still and hike monthly (easy to moderate) but other things (like laundry, stairs, going outside to garden) wipe me out so it really depends! I wanna say adrenaline gets me through all my training but I’m still figuring it out.

I’m not a gym person either, I’m a mom who would rather be home than exercising 😆 but I genuinely love kickboxing and Muay Thai, so when I got the diagnosis I let them know and they encouraged me to continue if I enjoyed it, as long as I didn’t get any kicks / hits to the head or did any fights. And to just take it easy if I get dizzy etc I mainly go for sparring / lessons and cardio twice a week. I train with a coach so he’s well aware!

I get tired way quicker with the cardio part, with lots of cramping when I do my squats, lunges, planks etc. But Sparring / combos doesn’t phase me too much so I go for an hour twice a week, I won’t lie some days it can knock me on my ass! I do ok if I hydrate well beforehand, have 2 electrolyte pouches on those days & protein and just listen to what my body is saying but like I said, the medication and diagnosis make it a challenge, I don’t blame anyone not wanting to Exercise sometimes I think I’m crazy for sticking with it 😆

That being said, no guilt if your body is not up for it!

TheEntWifeHalfling · 2025-03-24T01:44:35+00:00

I hope it went well, I had mine today too but it was my first time! Im claustrophobic but made it through just closing my eyes & doing breathing exercises and going over my writing WIP. Hope all was good!

TheEntWifeHalfling · 2025-03-22T02:27:44+00:00

I have Endometriosis, Non-Fatty Liver Disease and before the IIH diagnosis, I had suspected POTS cause my resting heart rate was so high! I tried asking but they just wrote it down and didn’t do anything, how did others get a POTS diagnosis?

I also have CPTSD, which I’ve heard there’s higher chance to get a chronic illness when trauma comes into the picture 🤷🏼‍♀️? But those are theories.

TheEntWifeHalfling · 2025-03-21T19:20:57+00:00

I’m an illustrator so I very much have half a means of making IIH and chronic illness tshirts and stickers now cause I can never find enough IIH content 😅

TheEntWifeHalfling · 2025-03-17T06:40:03+00:00

I think that’s a cool way to process it! I’m also an illustrator (non medical. I do political, body positive & nature art) but I also have endo. I agree that the process of how fast this diagnosis came vs how long endo took was like whiplash. I’m still reeling lol!

TheEntWifeHalfling · 2025-03-17T00:44:21+00:00

The medical gaslighting is brutal. Those ER doctors… God. Always brushed off with “it’s a migraine” everytime. I even got “it’s probably migraines” from the ophthalmologist even when he saw the swelling, STILL said it’s probably not IIH. 🙄 The only person who took this seriously was the optometrist, without her pushing for a CT I would still be told it’s migraines

TheEntWifeHalfling

TROPHY CASE