u/strawberrybunny11_

I think I have epilepsy. I was diagnosed with FND, after being checked for epilepsy 3 years ago and the EEG didn’t show anything. Back then, my seizures were mostly absences. About a year ago, I started getting shaking episodes, but I was always awake, and aware they were happening, eyes open and everything. So they continued saying it was FND, which made a lot of sense!

In the past 3-4 weeks, it’s been different. I’ve been admitted to hospital twice and had a lot of them. They feel so different, I dont remember them at all. I come to and I’m confused and exhausted. I also have been noticing things happening before they start - weird taste, feeling really scared suddenly and an almost buzzing feeling.

Yesterday I apparently had a cluster of seizures, and fell out of the hospital bed and hit my head. They said I kept screaming before they happened and was very confused afterwards. I don’t remember what happened and it’s really starting to scare me, is this cause to push to be checked for epilepsy again? My family have it, my grandad, uncle and brother.

Hi all, I’ve posted here before if you want to read and see what’s happened to this point.

I was diagnosed with IIH after they found papilledema in both eyes, and did an LP (pressure 46). I was started on 500mg of acetazolamide 2x a day, and had severe adverse reactions so they stopped it and started topiramate, which I also reacted badly to. In the end they admitted me to hospital where I’ve been for 4 days or so, and now they’re saying there’s no other options.

In the UK, where I am at least, they are saying there is no other treatment for IIH. They said the only option would be a shunt, and they don’t want to do that as I’m ’not bad enough’.

I’m just so frustrated, I’ve been dealing with symptoms for best part of a year - collapsing, severe headaches, flashing lights, throbbing, even seizures etc. I can’t keep living like this, I’ve had to drop out of uni, I’ve lost all my friends, I don’t leave the house coz I end up collapsing.

They’ve told me because they did the LP, my IIH is ‘fixed’, and that the pressure is no longer high. I don’t understand how they could possibly know that? I asked about how the pressure can bounce back up and they said unlikely. I’m just feeling so defeated, my symptoms are not better at all, and now I’m going to be sent home with nothing. I’m still really struggling with my vision, but they keep arguing that because the papilledema hasn’t gotten worse in the past two weeks that it’s stable, but it’s still really bad and causing symptoms!!

I’m desperate now, it’s making me so low. They’re now saying they’re going to make me take acetazolamide again ‘just to see’. It’s all so contradictory to me, if they’re arguing that they’ve cured me, why are they trying to make me take medication again? I really don’t want to take it, it gave me breathing issues and nose bleeds, I also threw up, and I couldn’t feel my legs. It was awful. Sorry for the ranting

Back in hospital *again*

I was diagnosed (after 9 months of struggling) following them finding papilledema in both eyes, and doing an LP (pressure 46). Started on 500mg of diamox 2x a day, and had adverse reactions so was switched to topiramate and also had adverse reactions. On top of that, they checked my eye pressure and it’s not improved from the medication ANYWAY so I don’t know what the point is.

Just seen neurologist who said there are no other medication options available in the UK, and my only option is to lose weight and hope it might help. Which I think is insane. I’ve already lost loads of weight and it hasn’t helped in the slightest. I just don’t know what to do now, I can’t live like this. I’ve had to quit my job, drop out of uni, I’ve lost friends, I can’t leave the house coz I keep collapsing, I sleep all day coz I’m in so much pain, it’s just horrific.

I asked about a shunt and they said they “only do that in cases with high pressure or if the vision is affected”, which both literally apply to me so I don’t know what the issue is

Hey everyone, sorry in advance for this rambly post.

I’m so tired, I’ve been struggling for so long. I’ve had a total of 7 weeks inpatient in hospital in the past 6 or so months, and only just got diagnosed. When I got diagnosed I was almost excited, I thought I’d finally feel better, but now I’m feeling worse than before. My symptoms are worse than they’ve ever been - the pressure headaches are awful and my vision feels like it’s getting worse.

I understand treatment takes time, and it’s just unfortunate that I didn’t react well to diamox and I’ve had to switch to Topamox, but I’m getting to the point I’m so low I can’t be bothered to get up. When I do get up, I’m so dizzy I keep collapsing in public. I just don’t know how to cope, this is awful

Hiya, just a question about coming off Diamox.

I was only on it less than a week and had an intolerance to it so was told to stop, I’ve had 48 hours off it or so, and I’ve developed like a sudden flu? I feel so ill, constantly coughing, headache, dizziness and nausea are all worse and I’m so so so congested. I was in 1000mg and went straight to 0 is this a withdrawal? I’m meant to start Topamox tomorrow as an alternative but I’m nervous after the bad reaction I had with Diamox :(

Hi everyone. I was only diagnosed a week ago today, had an opening pressure of 45. I had severe migraines and also had papilledema.

Since being put on Diamox a week ago I had such severe side effects that I’ve been taken off it, but given no alternative?? I was in hospital yesterday with what seemed to be a mild allergic reaction to it, and they told me to stop taking it, but I haven’t been given anything else. I’m really worried because the pressure was already high enough and effecting my vision.

I really want a shunt, I’ve done a lot of research and believe I fit the criteria. Although it is a horrible thing, I think it might be the best option, but I don’t know how to go about it. Despite being newly diagnosed - I had been waiting since October to get this investigated - I have been dealing with these symptoms for ages. I had a high opening pressure of above 40, and I’m not responding well to medication. I am only a little overweight so I’ve not been advised to do any major weight loss, I don’t know what my other options are atp.

When I was discharged from hospital last week after the LP and diagnosis, they told me to contact the neurologists if anything went wrong, I haven’t been able to reach them despite trying for days. In the end I just went to A&E yesterday, and they told me to stop the medication but I haven’t been given a follow up. I think it’s appalling how this is being handled and they’ve sort of done half a job. How did anyone else in England manage to get treatment? I’d really appreciate some advice, thanks :)

Hi everyone :)

For a bit of background I’ve been having severe headaches, seizures and vision problems for a year or so. I had an LP in January but they didn’t check the pressure they just took a sample. After multiple new symptoms like swollen optic discs and really loud ringing in the ears I went back to hospital last week, and fought for them to properly check everything. I’d never heard of IIH before, but was diagnosed on Sunday.

I had an opening pressure of 46, and they put me on acetazolamide 1000mg a day (500 night/morning)

And I just cannot get on with this medication. It has been so bad I thought it might be a complication after the LP, my partner took me to A&E last night they said it’s not. I feel like I can’t function, I’m getting:

- numb fingers and heels
- sore throat
- really bad headache
- ringing in ears is worse than before
- muscles keep locking (knees/wrists)
- nose bleeds and blocked sinuses
- tingling sensation in legs, feeling really weak
- breathless/hurts to breathe in
- and I feel so sick I’ve barely eaten

Since I came home from hospital Monday, I mostly slept through Monday- Thursday morning, I just couldn’t move, everything hurt so bad. The doctor at A&E told me to just keep on the medication and see if it gets better but I can’t stand it, what are my other options?

Hi everyone, I’ve developed even more symptoms since starting Diamox on Sunday, and I can’t believe how quickly they’ve started. I’m getting quite concerned that I’ll have to come off them because it’s so severe I can’t function normally.

Im still having the previous side effects of not being able to taste things the same, especially fizzy drinks - I’ve stopped drinking them altogether coz they taste so gross! And my fingertips are still numb.

Ive also started having intense muscle pain, and it’s like some muscles have locked? I woke up yesterday and couldn’t move my right wrist, it’s so painful I can’t sleep rn. I’m also struggling to walk because my legs don’t feel right, and I get out of breath so quickly. The ringing in my ears is also awful, and idk if this is from the lumbar puncture but it only started yesterday - if I breathe in too deep my chest/back has a stabbing pain.

Sorry to winge, it was just great to hear I wasn’t alone with the other symptoms. I have a doctors appointment on Friday to discuss what vitamins and electrolytes would help, because I’m on so many other medications from way back I don’t want to take anything and make smth worse. Luckily I won’t be seeing the doctor who told me they weren’t side effects 😂

Hiya, I’m back again sorry. I came home from hospital yesterday evening after 6 days in, and finally got my diagnosis. Started Diamox on the 3rd, and I’m having so many new symptoms it’s crazy. As I was leaving hospital I asked the neurologist about them and she blamed them on anxiety/psychological problems but I know myself and I’ve never had these before. I already asked about the numbness and the taste, that’s fine. But I just woke up (it’s almost 3am) and my genital area hurts so bad, like to the point I feel sick with pain. Is this normal? I’m concerned

I just asked the doctor if the Diamox was causing these things and he said no, but idk what else it could be? I’ve only been on medication for 24 hours and I’ve lost feeling in my fingers, and I can’t taste drinks it’s so weird

Hi all, I’m 21F, and I’ve been experiencing severe neurological symptoms for over a year. Two weeks ago, things got worse and I started to lose my vision, I went to the optician and she sent me to hospital. I had severe swelling of the optic discs in both eyes, and lots of pressure in my skull. In the past year that I’d been having symptoms, I had 5 mri scans that showed nothing except an incidental pineal cyst.

Yesterday they finally did a lumbar puncture and diagnosed me with IIH, it sounds strange to say I’m happy to be diagnosed with something, but I am. I really thought I was going crazy. I had to fight for that lumbar puncture, the doctor on Saturday was going to send me home with paracetamol because she thought I ‘was probably fine’ 😭 sorry for the rant I’m just happy and relieved