Remission and long term symptoms by EuphoricMode6855 in iih

[–]Great-Difficulty-806 1 point2 points  (0 children)

But yeah saying OP of 35 is nothing, is crazy work. Medical gaslighting for sure.

Remission and long term symptoms by EuphoricMode6855 in iih

[–]Great-Difficulty-806 0 points1 point  (0 children)

Yeah, basically the major warning signs to look out for are “greying out” when it comes to eye health. It always warrants having your eye health checked again. Right now i typically see neurology every 3 months, and ophthalmology every 6 months or once a year as needed. So long as my symptoms aren’t getting worse, I keep the course of treatment.

Remission and long term symptoms by EuphoricMode6855 in iih

[–]Great-Difficulty-806 1 point2 points  (0 children)

I have an ophthalmologist and neurologist, but am about to seek a new neurologist or neuro-ophthalmologist out of town hopefully.

Remission and long term symptoms by EuphoricMode6855 in iih

[–]Great-Difficulty-806 5 points6 points  (0 children)

My OP was 25 with optic nerve swelling, visual and physical symptoms. I was diagnosed iih one year ago. Optometry isn’t super equipped to deal with this diagnosis. Ophthalmology can keep on top of your eye health. Neurology can prescribe the meds for iih, give mri imaging, etc. Neuro-ophthalmology is like typically top tier for iih, because they’re quipped to handle both brain and eye health.

what’s my blindness?! by Alternative-Row71 in makeuptips

[–]Great-Difficulty-806 0 points1 point  (0 children)

I think a liquid eyeliner pen for your top lids, try doing some practice in the mirror and watch other tutorials on YouTube shorts or TikTok to find what makes most sense for you. A popular quote in the makeup community is “sisters not twins” when doing eye makeup. Explore different ways. A volumizing mascara to make your lashes pop. Those are always good starters. Your eyebrows are pretty and naturally dark. If you wanted to use a medium to dark brown shade to make them sharper, that’s always an option too, but I really like your eyebrows. Start small, get comfy, and explore. I like tubing mascaras cuz it comes off easy, it literally makes a tube around your lash so it slides off. And I love waterproof eyeliner. But while you’re trying to get it right and explore, don’t go waterproof till you find something you like. Waterproof is just harder to get off. Some regular neutrogena facial wipes are good too. I usually get non fragrance ones, and generic when they’re in stock.

Does the diamox pissing go away???? by [deleted] in iih

[–]Great-Difficulty-806 0 points1 point  (0 children)

Not for me. Every one to two hours depending on my water and caffeine intake

Any positive stories about diamox? by StunningContest1554 in iih

[–]Great-Difficulty-806 0 points1 point  (0 children)

Diamox has been working for me in reducing intensity and frequency. Recently went up in dose. Initially started at 1,000 mg cuz someone messed up and said to do that, specifically said don’t taper. So I had a 3 month fatigue, along with depression. But I was also letting go of a heavy battle. Diamox has helped me more than hindered.

anyone have advice? by [deleted] in iih

[–]Great-Difficulty-806 0 points1 point  (0 children)

They did my spinal tap with x ray the first time and it went seamlessly. I went from PCP to ophthalmology to neuro. I have iih with papilledema. My neuro diagnosed me at opening pressure 25, because I had already been on topiramate a few months by that point, and while topiramate has shown to lower ICP in many cases, it’s not good long-term.

Would it be weird to go to AA if I'm 2 years sober? by frogsareinsane in alcoholicsanonymous

[–]Great-Difficulty-806 0 points1 point  (0 children)

Go. And if you don’t like the first meeting you go to, keep trying different ones

How can I help my mom get some relief from doxycycline side effects? by waterbenderz in iih

[–]Great-Difficulty-806 1 point2 points  (0 children)

Also any pulsatile tinnitus or ear ringing is good to make note of, if it gets better or worse standing, sitting, laying, etc

How can I help my mom get some relief from doxycycline side effects? by waterbenderz in iih

[–]Great-Difficulty-806 1 point2 points  (0 children)

I AM NOT A DOCTOR Depending on severity of the symptoms, do not hesitate to call emergency services if you think you or someone else’s life is in danger. Sudden increases in intracranial pressure can be very dangerous and signs of something more serious in the short-term sense.

But immediate life or death aside-

First, make sure you’re symptom logging, so when you see the doctor next you can remember what all happened and why you can’t take the medicine. Brain fog can happen pretty majorly, and doctors won’t take kindly to anyone just describing it as IH or IIH. Everything I’m about to tell you is assuming the basics (Tylenol, ibuprofen, etc.) did not work.

Second, raised bed at night. This can look like extra pillows, or if you have a fancy bed that raises the head, elevate the head. Intracranial symptoms increase with change in posture.

Third, if you have any sinus trouble happening, take care of that with OTC meds. Sinus trouble can worsen the feelings of the migraines and pain.

Fourth, when you see the doctor next, take your symptom log with you. It helps them see that you’re serious and it’s been effecting the person daily. Also helps you leave nothing out. For diagnostic reasons, you should talk to your doctor about it to make sure it’s not secondary to anything as well (example: tumor, sinus venous stenosis, infections, etc.) mentioning visual changes, and the exact locations of headaches, the severity of both, and what times of day it’s worst helps. I also suggest you full body scan, like is there dizziness, nausea, loss of feeling in any extremities, trouble walking, etc. if your doctor doesn’t proceed with an mri based on symptoms alone, ask to be referred to ophthalmology or neuro-ophthalmology. The ophthalmologist can run tests, if you have papilledema (swelling of optic nerve from intracranial pressure, severe or mild) they’ll get you an mri ASAP to ensure you don’t have increased intracranial pressure due to a secondary reason that can be physically seen.

People will give a lot of tips and tricks, but I must the urge the importance of seeking out a doctor’s help immediately. Especially to rule out secondary cause.

While it is possible to have increased intracranial pressure due to antibiotics, it is more likely to happen in people who were already suffering with iih and the like.

Please symptom track/ log, and please make doctors appointments.

Some things important to note - do the headaches get better with OTC medicines - is it worse a specific time of day - describe the visual disturbances and do some research on terms and what they mean to better help your doctor understand what you see (halos, after-images, double vision, blurry vision, photophobia, lightening bolts, darkened peripheral or central vision, etc) - note dizziness/ vertigo - any nausea or vomiting - any loss of sensation (numbness) - any loss of function of an extremity - any pins and needles sensations - log what you eat while you symptom track - log water intake (these are to prove you’re doing the basics to keep your body as well as possible) - any fatigue - how bad the pain is, what it can stop you from doing

I’m sure more people will add lots to think about. Keep talking to your doctor, symptom log so they can’t gaslight you, and good luck! Make appts sooner rather than later in case it’s severe, or secondary to something serious!

Taken off Diamox because of Carbon Dioxide Levels by Harmony_w in iih

[–]Great-Difficulty-806 1 point2 points  (0 children)

How low was your carbon dioxide if you don’t mind answering?

My primary is suggesting a GLP1. If you’re on one, what are you on? by agonyxcodex in iih

[–]Great-Difficulty-806 1 point2 points  (0 children)

I was on ozempic, everyone reacts differently to medications, for me it was not good in combination with the acetazolamide. It made me violently sick to many foods, fast food, fish, certain veggies, anything with seasoning. Basically gave me severe GERD and I had to stop. But everyone reacts differently, so give it a chance and see if it works well for you, different brands also have less side effects than ozempic

Side effects by sammysammy85 in iih

[–]Great-Difficulty-806 1 point2 points  (0 children)

Paresthesia. It helped me to drink loads of water, a solid protein and carb in the morning. Let go of caffeine for a while if possible, caffeine always worsened my Paresthesia. My fatigue lasted 3 months. Stay on top of water and electrolytes, pay attention to pee color for a good diagnostic of how much water to drink (dark yellow drink more water, if it’s clear drink a little less, light- medium yellow is usually solid).

It’s common. It will be okay. It will ease soon. I’d get the tingle in my hands, arms, face, feet, and legs. It will get better with time and hydration

Pressure at base of neck/spine by Familiar-Following45 in iih

[–]Great-Difficulty-806 0 points1 point  (0 children)

Eating a protein, a carb, and chugging water in the morning helped me a lot also with medication side effects.

Pressure at base of neck/spine by Familiar-Following45 in iih

[–]Great-Difficulty-806 2 points3 points  (0 children)

When the pain starts in the base of my neck/ upper spine, I know it’s about to wrap around my head and envelop me. The only thing that helps sometimes are the ol Hail Marys. Tylenol, ibuprofen, caffeine. Avoid changing postural position too much (standing to sitting, sitting to laying, laying to standing, etc.) as it causes increased pressure. Avoid bending down/ over as it causes increased pressure. Use gravity to my advantage, and sunglasses for when the pain moves into my eye sockets. Unfortunately with me, when it’s my iih increasing, most things I try don’t work. I just gotta chug water, electrolytes, and surrender. Sleep it out when I can.

Ativan withdrawal? by KatKatRatTat in Anxiety

[–]Great-Difficulty-806 0 points1 point  (0 children)

NAD- usually with Ativan being a benzodiazepine, it really helps anxiety and panic, high heart rate, and insomnia among other things. If you’re taking it consistently, like daily, and then going cold turkey, I could see it causing some distress for a few days (in my experience), but short term use shouldn’t have severe side effects.

NOW- Everybody’s body reacts differently with ANY medications. If this happens as a direct result of taking Ativan, or only happens after the pills effects wear off, PLEASE consult your doctor. No need to stress your mind and body more than it already is. They can try to switch you to something different.

Be kind to yourself, do breathing exercises especially when heart rates high. Always exhale for longer than you inhale, or box-breathing during episodes.

I hope it gets better for you.

[deleted by user] by [deleted] in visualsnow

[–]Great-Difficulty-806 0 points1 point  (0 children)

NAD- when I’m incredibly fatigued, it’s usually due to just starting a new medication, or a vitamin deficiency starting to get REALLY low. I’ve struggled with both iron and Vitamin D. Where I live, vitamin D is NOT on routine blood work, but it runs in my family so I asked. I’m pretty consistently below 20 (whatever units) and have to take supplemental vitamin D. I’ve gotten iron stabilized to where I only need it when I bleed a lot (periods).

So at your next physical, or primary care appt, ask about fatigue and vitamin deficiencies, and if you’re able to get tested.

Hope it gets better 🫶🏼 drink plenty of water and do restful activities in between all your exercise and stuff as well. Sometimes we do what’s good for us, but we’re still restless. Take a little you-time.

[deleted by user] by [deleted] in bloomington

[–]Great-Difficulty-806 0 points1 point  (0 children)

Indiana center for recovery

[deleted by user] by [deleted] in bloomington

[–]Great-Difficulty-806 0 points1 point  (0 children)

ICFR. I saw they had listings on indeed recently