What are /r/iih's favorite Products & Services?

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sure! I meant jamaican extra black/dark castor oil. I use the Sunny Isle brand. I bought mine at Target, but it’s also available on Amazon:

> My neurologist told me it has very few side effects

You must have misheard, he probably said "there are very few side effects it doesn't have" 😂

Honestly at the start Diamox (Acetazolamide) is really quite awful, but your alternative is becoming blind, so it's the better option.

Even if you experience side effects, stick with it for a month and it will get way better. Nowadays I don't have any side effects.

If you experience pins and needles in the hands and feet, get potassium supplements. (I take https://smile.amazon.co.uk/gp/product/B09HYZMQYV/ in the UK)

iPhone has a built in filter that you can find where you adjust your brightness. It's been a while since I had Android but you can probably Google the best app for your phone. For my computer, I use an app called F.lux (available across all platforms). And in newer TVs you can even go in to the settings and adjust the blue light balance there as well.

I get this a lot, especially when I have a migraine. I'm also on computers 8+ hours a day for work, but I use blue light cancelling glasses and flux. Sunglasses, too (sometimes even indoors).

Way late to this, but I found https://justgetflux.com/ when I was in university and it helped with eye strain/headaches (pre diagnosis), now it's a must have on all my computers. You can adjust how orange to make the screen which is cool, and now I have less days with sore eyes/eye strain. Just a suggestion!

Hrm...I am so sorry you are experiencing this and also had a rough experience with a LP - those should not hurt and, if it wasn't an X-ray guided one, I recommend asking for one with an X-ray visual as the doctor can watch exactly where the needle is going and avoid sensitive spots.

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Something that helps my IIH headaches and may help your burning ones may be this ice wrap.

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However, I wonder if it is just coincidental - not saying you are not valid in your LP concern or frustrations - but sometimes things may pop up around the same time.

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Consider any changes to your haircare routine - have you noticed flakiness/itching? I am considering all the options and recommend getting a gentle shampoo to see if that helps.

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HOWEVER - do keep pushing your neurologist - keep a log when it happens/how intense, etc. so you have the data to show it is a frequent and annoying occurrence. Data is your friend when it comes to doctors. Do this before and after the new blood patch (which I hope helps!) to have proof when you go to your doctor.

I really recommend this book, it talk about how the ICP cutoff of 25 is really deeply engrained but there’s no real evidence for that cutoff and 18-19 for some people might just be too much and cause severe symptoms. The book says it’s for patients and families but I think it’s a little more at the level of a healthcare professional so it should be perfect for you. I’m a healthcare professional and I find IIH is really not understood well by my peers, even my peers in neurology. So you might have to train yourself to be the doctor you need.

This all really sounds like IIH to me, not everyone with IIH has papilledema. Just a thought, have you been worked up for sleep apnea? - The weight gain makes me wonder if it could be a contributing factor?

Here’s the book you should get if you have time for one more thing to read :-D https://www.amazon.com/dp/3030800415?ref=ppx_pop_mob_ap_share

I like a wedge pillow much better than the TV type pillows. I've been using the Extra Wide Bed Wedge Pillow | Extra Large Bed Wedge Pillow (31” x 33”)| Memory Foam Top and Jacquard Cover| Wedge for Sleeping Acid Reflux GERD (Extra Wide 12" Height (31 x 33 x 12)) https://smile.amazon.com/dp/B0831STHJD/ref=cm_sw_r_cp_apan_i_PKSYTMWHM1BAP7NPRZJY?_encoding=UTF8&psc=1 from Amazon and am really happy with it.

Limited-time deal: Bed Wedge Pillow - Memory Foam Top Adjustable 9&12 inch Folding Incline Cushion, for Legs and Back Support Pillow, Acid Reflux, Heartburn, Allergies, Snoring, Reading- Soft Washable Cover (Grey) https://www.amazon.com/dp/B08KHSYBXM/ref=cm_sw_r_cp_api_glt_i_dl_WJP4Q3021KX763V4GV7X?_encoding=UTF8&psc=1

I'm pretty happy with this one

InteVision Extra Large Bed Wedge Pillow (33 x 30.5 x 12 inch) and Headrest Pillow in One Package - Helps Relief from Acid Reflux, Post Surgery, Snoring - Egyptian Cotton Cover - 2 inch Memory Foam Top https://smile.amazon.com/dp/B01BVXPU2C/ref=cm_sw_r_apan_glt_i_81J9H4Z0RGGH67JRVNTD?_encoding=UTF8&psc=1

I use this one specifically: https://www.amazon.com/Biore-Aqua-Watery-Essence-Sunscreen/dp/B07RW32L8W/ref=sr_1_3?crid=WY1N6KQTHKA9&keywords=biore+spf&qid=1644934566&sprefix=biore+spf%2Caps%2C112&sr=8-3

At the time that my eyes burned I was on 2g of Diamox a day. We were at the lake in the middle of summer and I didn't have any sunglasses on me. I honestly think it was the reflection of the sun on the water that did me in. It was terrible, wouldn't wish it on my worst enemy lol

Yeah, I haven't found any of the doctor's I've seen to be particularily helpful. Most of what I've learned is through my experience with the condition over the past 8 years and personal reasearch. Good luck!

So diamox depletes potassium and sodium bicarbonate. Low potassium has a specific set of side effects and so does low sodium bicarbonate. So now a lot of people think diamox is a horrible drug with too many side effects because of those 2 things it does. So I take a supplement that has both and it has cleared up a lot for me. Specifically crazy stomach aches I would get.

Klaire Labs Sodium Bicarbonate & Potassium Bicarbonate Supplement - Key Components That Help Maintain Healthy pH (Acid/Base) Balance - Gastrointestinal Support - Bi-Carb Formula (250 Capsules) https://www.amazon.com/dp/B001PYUMOE/ref=cm_sw_r_cp_api_glt_fabc_S4VC43GXQE093X1K6Y8B?_encoding=UTF8&psc=1

Sorry your PT has been bad:( I sleep on a complicated pillow structure that basically keeps my upper body elevated about 45 degrees while preventing my head from rolling to either side. When my PT was at its worst, I also started using an adjustable noise machine like this one and playing an audiobook on low volume right next to my head. The worst part of PT for me is that I can't stop focusing on it which just makes it worse and can keep me up for hours. Using a blend of low-level sounds to "confuse" my brain really helps to drown it out without waking me up.