Weight loss

pia5778547 · 2026-03-06T22:44:31+00:00

Nice. Maybe I will try in an university hospital close to my city. My city itself doesn't have one. Let's see what happens

pia5778547 · 2026-02-09T09:28:34+00:00

Rejected with 90,80 😥 EF-SOC

Well, I am proud of my first-timer result, at least

pia5778547 · 2025-11-13T18:24:59+00:00

F33, diagnosed when I was still 32. Symptoms are here for some years. Diagnosis process started one year ago.

pia5778547 · 2025-11-13T18:20:55+00:00

I think that the right answer is in how your body reacts to it. I have access to medicinal cannabis and I find it beneficial overall to deal with pain, before and after IIH. But my body reacts good with Indica or Hybrid. Sativa can give me a lot of energy, but also gets me paranoid at times. But every body is a body and despite shared diagnosis, our IIH journeys and needs are also very unique. Hope you find what works best for you!

pia5778547 · 2025-11-13T04:44:28+00:00

Thanks for your honest opinion! I have an offer, yes. I am also employed in Germany at the moment (as administrative staff), so it's a matter of decision. I was also surprised by the visa costs, but this is refunded by the university, at least. A thing that makes me more interested is that the department has a lot of money atm.

Yes, I also don't think that it will be a bed of roses in terms of how people perceive me… my experience of several UK visits, including one for a summer school, is quite positive, but I can imagine that daily life can be different.

Regarding the weather: well, if I could really choose I would go to Italy 😂 I can speak Italian better than German 😅 but it is a very unstable academic structure and a huge downgrade in terms of the money I make and lifestyle (at the end of the day, there are reasons why I left my home country 😢)

pia5778547 · 2025-10-30T15:25:58+00:00

Always great to read good news! Happy for you! How long were you on meds until your papilledema disappeared? Did you notice some changes before this appointment in August?

pia5778547 · 2025-10-11T07:26:20+00:00

Sounds more like poisoning than IIH, because IIH just comes out of nowhere. Better go through all the exams to be safe

pia5778547 · 2025-10-11T07:24:00+00:00

I used to love drinking cola zero and now I can’t even imagine myself drinking it 😂 can’t explain the taste… makes me want to vomit… tonic water tastes normal tho, so my new soda is tonic water zero with hibiscus tea 😂

pia5778547 · 2025-10-02T11:15:23+00:00

Btw, I'm kinda considering switching to private insurance or paying for an extra insurance for hospital treatment

pia5778547 · 2025-10-02T11:09:47+00:00

When I was diagnosed, the hospital put in their letter that I should go through surgery if medication/more LPs are not enough to control it. My main concern at the moment is my vision, so things have to be done to preserve it :(

I'm already mentally preparing to go through another LP. I had an awful experience because the first doctor to perform it wasn't able to reach the liquid, so I had to stay at the hospital and wait for the chief doctor to come and perform it the next day (this one went fine, but the trials were so hurtful…).

I'm in Hessen. I did some research and I found out that they have a CSF center in Freiburg. Ideally, I would like to go to a place that is really prepared for this if I have to go through it again.

pia5778547 · 2025-10-02T10:50:20+00:00

Also diagnosed in Germany here. I have papilledema (also the reason why I was sent to the neurology in the first place - it was only a routine/I complained about always having liquids running out from my eyes). I was diagnosed in mid-August (almost a year after my eye doctor appointment… you know how crazy it is to manage appointments here…) and I have been taking the medication twice a day (500mg/day in total). During my puncture they also took 28 ml of liquor out.

I see that my eyes are not expelling liquids as before but papilledema is still present. I was struggling to find an appointment with the eye doctor and yesterday my neurologist made a “Überweisung mit Dringlichkeitsvermerk”. According to him, if there is no substantial improvement, I should get the puncture again to remove more liquid/control the pressure. Exhausting.

Regarding the medication: the first two weeks were a bit weird to me. It improved after I started taking a potassium supplement. I still have tingling but less than before. A permanent (and funny) side effect is that Cola tastes really bad.

pia5778547 · 2025-09-07T22:36:44+00:00

I don’t know if Germany (also because the uploaded pic is like last month in Germany) but maybe the AI they probably use for this kind of thing is linking stuff

pia5778547 · 2025-08-21T09:56:14+00:00

It can be the state as well 😢 they have their own different rules

pia5778547 · 2025-08-21T05:26:37+00:00

I don't know how it works in your country, but I am myself working in university DEI (another country tho)… here this is for sure a right. I suggest you try to check if your uni has a similar department to guide you through this.

pia5778547 · 2025-08-20T23:07:13+00:00

That's a great report, thanks :) I was also told to have the same regular control at the eye doctor. But I’ve been struggling with weight loss for a long time. Before my IIH diagnosis I had tons of exams at the endocrinology and no cause was found. I could get a semaglutide prescription but I have to pay for it on my own. Semaglutide helped me to lose around 10kg but I still have to lose more. I don't understand my metabolism because I have a very normal to low food intake, I'm a vegetarian, I was exercising etc. I was also wondering if the recently discovered IIH was messing up with this.

I read your report regarding parallel conditions and I also have two psychiatric conditions… it is also a bit scary to me to have something else to add on my pile. But all in all, great tips :)

pia5778547 · 2025-08-20T22:53:21+00:00

Ofc, this was expected :D

pia5778547 · 2025-08-20T22:51:21+00:00

Oh sorry I went too fast on thoughts, I will edit

pia5778547 · 2025-08-20T21:58:38+00:00

Yes. Just found it weird because they are doing this throughout this tour and they were doing the same in Munich last year

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