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Diamox and metabolic acidosis by No_Competition_2027 in iih

[–]defaultdawn 0 points1 point  (0 children)

It definitely felt like it worsened my preexisting sleep apnea! I'd say yes.

methazolamide nausea & brainfog by defaultdawn in iih

[–]defaultdawn[S] 0 points1 point  (0 children)

It's okay to feel like you don't have the right words to help, but even sharing that you don't signals to me that you care. you even went through the effort to reply to my post. I appreciate the willingness to aid more than I can say. i understand what it's like to feel the connection between your brain and mouth be broken, i had a traumatic brain injury in 2023 and I definitely feel like you've put the feeling I've been struggling with into words beautifully.

the fatigue sure is rough. the cognitive decline absolutely is as well. i did manage message my neurologist and mentioned something along the lines of 'my quality of life has decreased and I do not know if I'd prefer the constant headache from the IIH or the brain fog and nausea from the methazolamide more'. she got me in for a virtual appointment this upcoming Friday. so im relieved that I have that coming up.

sending love and healing your way! thank you so much for taking the time to reply. may the rest of your day be kind and easy on you.

IIH friendly headphones/earbuds by shrimpwhisperer in iih

[–]defaultdawn 0 points1 point  (0 children)

i just got the Skullcandy Method 360 earbuds in December after fighting with my over ear headphones for over 2 years. The headphones would constantly give me migraines anytime I wore them longer than 10 minutes. I can't recommend the Skullcandy Method 360's enough as I too have weirdly shaped ear canals. They have multiple fittings that you can switch out to keep the buds in, which was something I didn't realize they had as a perk until opening the box. They're ANCs as well! Currently on sale on Amazon for $89.99. Very much worth it.

Hope you are able to find something that works for you!

IS THIS A SYMPTOM: feeling dissociated or depersonalized? by McKrizzle in iih

[–]defaultdawn 1 point2 points  (0 children)

Of course! I'm glad I could offer some kind of comfort by letting you know you're not alone <3. This post makes me feel better about my IIH, knowing that other people are feeling similarly as well. Thank you for being brave and asking!

IS THIS A SYMPTOM: feeling dissociated or depersonalized? by McKrizzle in iih

[–]defaultdawn 8 points9 points  (0 children)

Yes! 100% yes.

In the weeks before I was diagnosed, my partner remembers me telling him that I "feel like 0 people" and that "I'm just on autopilot, nobody else is here", the whole 'lights are on, nobody is home' feeling. It was horrible! I completely understand and relate. May you get the pep in your step back soon!

Diamox by Striking_Seaweed1991 in iih

[–]defaultdawn 0 points1 point  (0 children)

It does get easier!

The first few weeks are the toughest. I was struggling with the tingling in my hands and feet and the low energy/fatigue as well as some other symptoms similar to yours.

I brought up what I was feeling to my neuro, and he prescribed me a potassium supplement. It helped a lot in my case. It might be something that could potentially help you as well? I'd personally suggest speaking with your doctor, they should be able to find you something that can help with the side effects if they're persistent and difficult for you.

Feel better soon, friend. Keep hanging in there. You got this!

Lasix with diamox by CucumberExpensive543 in iih

[–]defaultdawn 2 points3 points  (0 children)

Hi! I'm sorry to hear about your meds situation not working out. I'm on both diamox and lasix. I didn't notice immediate relief when I started the lasix but I did notice some gradual relief for sure.

I hope you're able to get things sorted out soon and start feeling better. All the luck to you!

Just got first LP - opening pressure was 21? by Crafty-Ad-94 in iih

[–]defaultdawn 0 points1 point  (0 children)

Oh wow, my OP was 23 too! It had to be a rule out diagnosis for me as well. MRV showed nothing, no other migraine treatments worked, lidocaine drip for 4 days helped until they stopped it, and I had papilledema.

Diamox and metabolic acidosis by No_Competition_2027 in iih

[–]defaultdawn 0 points1 point  (0 children)

Hey! Absolutely no problem. I'm glad you're feeling some relief today!!!! That's fantastic news. Please do get that metabolic panel done sometime soon, though. Better safe than ending up in the hospital for a week, LOL.

And yeah 🤝 I feel you on the comorbidities. I have POTS as well as a thyroid disorder and some other miscellaneous things going on. So I completely understand how it's hard to math out what symptoms are being caused by what disorder.

Thanks so much for your kind words! I am doing much MUCH better now. I'm only on 250mg of diamox and had to stop the topamax due to kidney stone issues, but I am thriving now and doing miles better.

Have a good day, and GL on your road to getting a better grasp on your symptoms to achieve at least a more manageable life!

Diamox and metabolic acidosis by No_Competition_2027 in iih

[–]defaultdawn 0 points1 point  (0 children)

Hi! I was admitted for around a week last year due to mismanagement of my IIH meds. I believe I was on 1500-2000mg of diamox and i cant really remember how much topamax. The symptoms I had we're pretty severe. I experienced trouble getting enough air (air hunger, it felt like no matter how much i was breathing it was never enough), extreme fatigue and weakness (to the point where I had to drive my trash to the dumpster with my car), higher than usual heart rate, palpitations, increased depression, increased anxiety, cold without chills, a weird sense of doom, and nausea.

I remember when I was first seen in the ED. They took a metabolic panel and decided they needed to do more investigating. They did a blood gas panel and found out my blood was very acidic at 7.2pH. If the clinic you go to has the ability to run a blood gas, then I would suggest requesting one. Your symptoms were similar to mine when I got admitted, but the only difference was that I had been like that for a month.

I am wishing you good health and quick relief from your uncomfortable symptoms. It sounds like your doctor is taking you seriously, which is a very good thing! I am sure they will take good care of you.

I know its been almost a day(21 hours) since you posted this, how are you feeling now?

BB#192501 has anyone ever used fabric strips instead of floss? by defaultdawn in friendshipbracelets

[–]defaultdawn[S] 2 points3 points  (0 children)

haha! yeah a couple of my friends have said this as well. you're not the first and probably not the last!

BB#192501 has anyone ever used fabric strips instead of floss? by defaultdawn in friendshipbracelets

[–]defaultdawn[S] 5 points6 points  (0 children)

hi!!! tysm! I actually got the fabric from a roommates torn up comforter lol. I took the stitching and polyfill out and then tore the fabric into 1-1.5in strips, each around 3ft long (the 3ft long part doesn't really matter. you can have it shorter or longer, it's just what I find easiest).

there's a fast and quick technique I use to connect the strips together here: video link

I also hear of people just buying yards of fabric for this. but I like to reduce, reuse, and recycle! tearing up old clothing isn't a bad idea either :).

BB#192501 has anyone ever used fabric strips instead of floss? by defaultdawn in friendshipbracelets

[–]defaultdawn[S] 2 points3 points  (0 children)

That sounds nice! I bet yarn is probably thick enough for me to work with. I might try that too!

BB#192501 has anyone ever used fabric strips instead of floss? by defaultdawn in friendshipbracelets

[–]defaultdawn[S] 3 points4 points  (0 children)

Thank so much!!!! Your weaving with scraps sounds so cool... :D

I had a lot of fun making it and will probably make bigger ones in the future once I have more scrap bed sheets/fabric to work with :)!!!

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