u/Common_Safety_8830

I have been on the path to remission, hopefully. I have had to stop taking diamox all together because every time I took it I would get the world’s worst headache. I was told to stay on the meds for another four months to see if I could stop. Worried I am going to mess it up and can’t get my treating doctor to respond to me about the issue. I don’t get normal headaches it’s always the special hell IIH headaches so this is so weird. Fingers crossed!!

Is exercise on table when flaring or have an open wound?

Anyone in remission right now?

When you were entering remission do you remember getting side effects for a dose of diamox that normally was fine?

Thanks y’all

Turns out I have a bad infection and my “side effects” were probably not related to taking the meds at all. So now I am on a powerful antibiotic, it was fun trying to figure out what I could actually take.

Now I just need to decide if I am going to wait until the antibiotics are done or risk two new meds and the same time. Seems risky. I am also nursing an injury so kinda on edge about if this is going to cause a flare or worse.

🤞🏻🤞🏻🤞🏻

Took my first two doses today and I don’t think it went well. Advice?

I was prescribed 60mg.

First dose was okay, felt decent but had some pretty rough cramps.

Second dose, nausea, weakness, fatigue, feeling heavy and tired, just icky overall.

It has been at least 2-3 hours since that second dose worse off and I still feel horrible, that shouldn’t be possible right? I have a monster headache, still nauseated, shoulder and neck pain. What gives…

Thinking maybe I should have tapered into these doses.

Anyone else just jump right in or were you eased in? Calling my doctor tomorrow to talk about the meds.

Turns out I have a nasty infection, probably didn’t have anything to do with the meds.

Silly question but how do you know it is working? Took my first dose 30 minutes ago. Kinda dawned on me not super sure if this… perkiness.. is placebo or what.

I have been lurking since I didn’t have a diagnosis only the suspicion pending tests.

My antibodies were negative but my RNS was positive on my face. So seronegative MG is the diagnosis. I am starting Mestinon.

We also talked about Vyvgart, but also did mention that seronegative status can make it harder to get these more targeted therapies.

What is your experience with getting treatment if you are also seronegative?

Any challenges that you have faced you might have wished you knew about in the beginning?

Any general advice?

Thanks y’all

Bloodwork came back negative so now my neuromuscular specialist wants to do additional testing. Wait times where I am are so long, like 6-12+ months but she has me coming in next week. Bit of a shock.

Has anyone had these tests done? What was it like for you? Any advice?

Bloodwork came back negative so now my neuromuscular specialist wants to do additional testing. Wait times where I am are so long, like 6-12+ months but she has me coming in next week. Bit of a shock.

Has anyone had these tests done? What was it like for you? Any advice?

Today my five year old got her second dose of xolair. She got about 8 of the biggest, densest hives I have ever seen. Not even on the leg she got the injection, the opposite arm. She also has some unknown urticaria so maybe it is related I don’t know. It has been 10 hours and they’re still there. Has anyone else gone through this? How long did it take for the hives to go away if you got them? I feel like I am in uncharted waters, it has never taken this long for hives to go away.

Looking for a solid steak house. Anyone have any recommendations?

I was recently diagnosed, a moderate 15 degrees, my pain is a hip hike leg discrepancy. I have been in PT for it and my specialist said that I could benefit from seeing someone about shoe lifts since my right leg is a little shorter and it is causing pain. This is new and only started to be a big problem for me in recent years. He said since they can’t prescribe I need to go see another specialist like a spine specialist or podiatrist.

I am going to the PCP who spotted my scoliosis in the first place to ask for the referral but I am curious, if you have a shoe lift, who prescribed yours? I have no experience with any of this so no idea what I should be doing in terms of managing this.

Had my 2 month checkin yesterday and the news was good. No paps on the left eye, trace on the right and he saw SRVP’s for the first time since I was diagnosed.

Hopefully I will be fully in remission and off the meds by the end of the year. Fingers crossed!

Wondering if anyone is successfully taking HRT for perimenopause.

Had a hysterectomy two years ago, I am 39 now. I have no idea how to tell if I am going through true perimenopause yet. I want to say yes but I keep thinking maybe not.

Any ladies in here who started HRT or knew it was peri after a hysterectomy? How did you know?

Okay so, does having IIH somehow allow you to defy the laws of physics? I have been doing all the things to drop the weight, I should be down AT LEAST 25 pounds by now but I am down…. 5.

I know how to drop weight. The only thing that has changed here is now having IIH.

I feel like I am going nuts, I am in a massive deficit now and the needle is still not moving. It bas been months and I am starting to get real frustrated.

Anyone else have this issue?

I had a little success with intermittent fasting, might try it again. Feel like I have to go to extremes just to get a little weight off. 😭

I am a bit of a loss. My five year old will not part with any of her things. I have been on a hard stop no new toys or games until we can part with some old toys for six months now. She still asks for new toys and we tell her essentially no, that we have no room.

I have no idea where this all came from. I thought it was a phase. She not only remembers everything she has but notices when things she hasn’t played with for years are gone. I tried quietly removing some things thinking she would not notice and that was a mistake. I have since tried to show her in many ways that giving up old toys is a good thing. We have some little things she “earns” with a chore/reward system to show value. I am out of ideas.

Has anyone run into something like this before? How did you manage it? I really don’t push the issue but she gets super upset that we are not getting anything new. I would like to buy her some more age appropriate things but we actually have no where to put them.

ETA thank you all for the input. I got some solid feedback and a suggestion that I am going to try. I think this is a very important issue for her so handling with care is important.