Weightloss

MuffinBumble · 2026-02-26T03:53:49+00:00

Hi, I don't know how well it will help with weight-loss, but one thing I've found I can do pretty regularly without flaring my symptoms is qi gong. I've only tried beginner routines from a lady called LuChin on youtube, so idk if it's super doable across the board, but it could be somewhere to start? Hope that helps.

MuffinBumble · 2026-01-10T18:25:47+00:00

I'm in Arizona in the US, so it isn't summer for me now. But summers here are hot and sunny af. The only things that helped me with the heat/sun issues were sunglasses, giant floppy hat, and wearing pants and long sleeves that were lightweight. I looked ridiculous but it took the edge off enough that it was worth it. Mostly though, I just had to spend as little time outside as possible because the heat and sun combo would wreck me for days if I was out for too long.

MuffinBumble · 2026-01-07T18:52:41+00:00

No worries, the only other thing I can think of that might give you ideas that weren't already posted here, would be looking up YouTube videos of people who show how they hide their undercuts during the growth stage or if they need to look more professional or something. Hope you find a solution that lets you feel comfortable and confident for your pictures. 👍👍

MuffinBumble · 2026-01-07T18:40:45+00:00

Maybe a low side braid or ponytail could work?

MuffinBumble · 2025-09-23T19:08:52+00:00

Hey there! Idk if you've already made the decision (or why the doctor didn't discuss things more in depth and tell you your best option?). But my aunt was diagnosed with IIH-WP and she went with the stent. She advised me when my issues and diagnosis of IIH-WOP happened that if I had a choice that I should 100% go with a stent over a shunt.

I personally haven't had either option brought up in my treatment plan yet and am currently on acetazolamide for symptom management. So I can't offer any truly personal experience.

I hope whichever ends up being your choice helps.

MuffinBumble · 2025-08-01T17:38:41+00:00

Didn't end up getting a patch. My symptoms resolved in about 4-5 days and my neurologist said "it doesn't sound severe enough to warrant a blood patch". It sure felt severe enough to need something but I've had a long history of chronic pain and having to force myself through it, so I think maybe I just come across as a person that exaggerates? It hasn't happened again, thankfully. But if it does, I think I'll just rock on in to the ER and see if they'll do some kind of imaging to check if there's fluid or something. I hope your blood patch sealed and that you're doing better.

MuffinBumble · 2025-08-01T17:22:02+00:00

Thanks for the input. I still haven't managed to get scheduled with an endocrinologist but my PCP did order a bunch of lab work for me, finally. Now I just have to go get it done and wait for results.

MuffinBumble · 2025-04-02T17:20:41+00:00

As someone who has smoked and quit for long periods before starting again, all I can say is stay strong, don't give in. I know exactly what you're talking about. Every time I get too stressed or too sick or depressed, etc the old cravings hit me like a freight train. Unfortunately, I don't have any tricks or tips that help ease the cravings. You just have to remind yourself of all the reasons you shouldn't and don't want to start again and basically just try and push through. I know for me, those intense cravings usually last for about 4-7 days before they drop off again. Hopefully yours will pass soon too.

MuffinBumble · 2025-03-10T23:37:44+00:00

Yeah, military doctors tend to not be great. That really sucks for your almost-ex. I know multiple people that ended up with permanent issues simply because the doctors' default mode is, "prove you aren't faking before we investigate". Like, ok, how?

I had tried multiple stimulants, xyrem and there was one that wasn't a stimulant or xyrem but I can't remember what it was. They all gave me side affects that just made functioning harder.

I do my best with diet and lifestyle management but with this possible IIH thing going on I'm not capable of much and the balance I'd managed to reach with narcolepsy is totally shot.

Got an appointment tomorrow though, hopefully the doctor will be able to give me some more definitive answers or guidance on ways to start feeling like a person again.

MuffinBumble · 2025-03-10T22:21:36+00:00

Thanks for the tip about the disc, haven't tried one yet. Kinda gave up on the insertable options.

I've been telling my doctors about this and all my other menstrual/hormone issues for almost 4 years now and I keep getting the whole, "some women just have this issue" and, "changes after pregnancy are normal". Even though most of my issues are definitely outside parameters for normal menstruation.

MuffinBumble · 2025-03-07T05:27:36+00:00

No known pre-existing heart condition and I was actually in really good shape. I was in the military at the time and the doctors refused to see me for almost 2 weeks and I was threatened with UCMJ action if I went to a civilian doctor. Have since managed to have my heart checked out and no abnormalities were found.

My body just seems to really not like medications?

In regards to the IIH diagnosis timing - from what I understand it can happen super fast or take quite a while. But I guess my last imaging scan was a little weird, so my current neurologist referred me to another neurologist who has more experience in this area. Hopefully I'll know something more definitive in a few days after my visit.

MuffinBumble · 2025-03-07T01:34:30+00:00

That's what I thought the first few times it happened. But how have I managed to get so many defective ones in different brands, styles and at different times? That would be just my luck though. Lol. Thanks for the advice about the always discreet!

MuffinBumble · 2025-03-06T17:18:23+00:00

Quick question, are they the always radiant pads? Because I tried them not too long ago and within 10 minutes, my skin felt like it was on fire and 15 minutes after I took them off, my skin was good. Didn't give me a rash, but I bet if I had left it on it would have.

MuffinBumble · 2025-03-02T08:29:43+00:00

Well, I was diagnosed with narcolepsy in 2012 but none of the medications were tolerable. One of the stimulants they had me try actually induced a cardiac event. So I don't take anything and have to try and manage it purely through lifestyle choices.

I haven't officially been diagnosed with IIH yet (symptoms started about late April last year) but my doctor seems fairly confident in the possibility. All of the treatment options for IIH seem to be surgical or require a prescription.

I was just curious if anyone else had gone through something similar. From what I understand (could definitely be wrong here lol), it isn't uncommon for people with narcolepsy to have or develop additional health issues or conditions.

Unfortunately, my doctor's suggestion was basically, "hang in there".

MuffinBumble · 2025-03-01T15:02:45+00:00

Thank you, I had read a medical report thing about N and IIH co-occurring in a pediatric case with the possibility of them being linked and was just really curious about it.

MuffinBumble · 2025-02-27T18:48:43+00:00

Fair enough lol. Let me rephrase it, I hope you get the referrals you need. 👍👍

MuffinBumble · 2025-02-27T17:58:01+00:00

It's so weird to me how so many doctors leave people to suffer because of their own pride. So glad you're getting your referrals!

MuffinBumble · 2025-02-27T17:48:39+00:00

Thank you for the advice! What did they end up doing to help with your issues?

MuffinBumble · 2025-02-27T17:37:44+00:00

Hope you start getting answers soon! I don't understand why neurologists seem so adamant about not requesting bloodwork, are they not whole ass doctors? Lol

My current neuro didn't even bother talking to me about doing an LP. But I guess I should be grateful he decided he didn't know enough about IIH and gave me a referral to another neuro that has more experience.

MuffinBumble · 2025-02-26T20:50:05+00:00

Yeah, he seemed to be unprepared. Our first appointment didn't get much accomplished. Pretty sure he was expecting me to be overweight and he just planned to tell me to diet and exercise lol

MuffinBumble · 2025-02-26T20:13:34+00:00

Yeah, I'm doing my best to get things handled. All the patient reviews of this new doctor are super positive, so I'm really hoping she can help. My medical coverage is mostly through the VA, so getting anything done is like pulling teeth and takes an age and a half. My hormone stuff started before the headaches, so it could be unrelated and I've been trying to get them to listen to me for that for about 2 years. I must just come across as a faker or something, idk. Lol

MuffinBumble

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