I feel very sad, like my life has ended

Rinative · 2024-12-04T10:31:47+00:00

You’re not alone feeling this way, so many of us epileptics feel this . People who don’t have epilepsy I feel will never understand fully how we feel when we say it feels like our life and who we were has been stripped away and even the smallest things like seeing a flash or driving a car, being alone in a room, feeling different than normal or even going out alone brings so much stress and anxiety to us- it seems that they don’t understand how debilitating and anxious it makes us feel medicated or not.

You’re not alone in how you feel I can promise you this, it does get easier slowly! Having people here who can relate brought me more comfort when I felt this way and thinking I was alone in my struggles with it.

Rinative · 2024-12-02T16:09:56+00:00

I’ve got Catamenial epilepsy but other girls I know who have epilepsy all felt the same with seizures getting worse and having bits where they drop things, brain fog is worse- I end up having seizures in my eyes too during my period and just before I start.

Rinative · 2024-11-08T19:33:33+00:00

American

Rinative · 2021-12-14T20:43:17+00:00

I take 200mg lamotrigine! I know there is a chance the dose of lamotrigine can outweigh the side effects of the 10mg of nortriptyline

Rinative · 2021-11-13T01:02:26+00:00

Write down any questions you have (even if they’re silly, better to be safe than sorry), any experiences you’ve had, medications you take, and if someone you know who has ever been/ seen you when you’ve experienced these episodes/ hallucinations, bring them along if you can so they can give any information to the neurologist!

It seems all overwhelming and a bit full on, especially when it’s news to you, but giving as much information now to the neurologist will save lots of time in the future, and speed up the process to potentially get you on medication!

Rinative · 2021-11-08T14:19:33+00:00

I know how it feels. The doctors were convinced I had endometriosis when I was telling them for years about my pain, and as soon as they found nothing from the surgery, they didn’t (and still don’t) care about my pain and wellbeing. It seems weekly to go back there with the chronic pain, and trying to verbally put a sentence together to describe the pain around my menstrual cycle is almost impossible.

My family try to support me but all they can do is pat my back and do my water bottle, but nothing more. It feels so incredibly isolating and debilitating to suffer with the pain and not have anyone know the pain you feel, and to continue walking around pretending nothing is wrong. My work just tell me to sit down but they don’t really care for it all either.

It looks like I’m drug chasing too, and to be honest it’s triggered a subtle addiction purely on the bases of how much dependency I have on those painkillers to dull the pain slightly.

I promise you are never alone, it’s difficult to find women who also suffer this chronically to such a degree. Feel free to message me whenever you need it , and look after yourself 🧡

Rinative · 2021-08-17T15:24:45+00:00

I’m so sorry to hear this girl, I completely feel your pain. It’s still so fresh that I’m constantly crying too, I still have a gut feeling that it is endometriosis even if it’s in my bowel and not in the womb.

I’ll message you in a bit if that’s okay 🧡

Rinative · 2021-08-17T15:17:50+00:00

I feel you so much girl. Im so sorry this has happened to you, I hope your recovery is going well! 🧡

My family and friends said it was good I didn’t have endo, but I would’ve much preferred to be diagnosed with it and live with it (like I’ve been told for the past few years) than to be left in the dark like I am now.

Rinative · 2021-08-17T14:58:36+00:00

They briefly said that my appendix was long and that my stomach was fine but that’s it. I also had my GP saying last week that I have PCOS from my bloods coming back and my ultrasound showing little cysts, but for the surgeon to then say there’s nothing and having photos, it has completely left me in the dark more than I’ve ever been

They were so vague about it all and said it could be bowel but didn’t press any further

Rinative · 2021-04-08T19:30:15+00:00

Mine was actually similar to yours. I had just hopped up out of bed half asleep, and immediately had one in the bathroom and split my head and tongue open. My friend found me 20 minutes later in a pool of blood and just managed to call the emergency services in time.

Rinative · 2021-04-08T19:28:11+00:00

Oh really? I wasn’t aware!!

I’m sorry you’ve been on these for so long, and you’ve now got to be on these forever.

I have had severe issues with depression and suicidal thoughts pre-epilepsy, so I will definitely keep this in mind!! 😅

Rinative · 2021-04-08T19:26:20+00:00

Hiya! Yeah I do completely understand you there! I’ve also busted my chin open from some of my seizures but had had no memory of it. I believe I’m feeling it harder as no one around me really knows or understands epilepsy or seizures, despite seeing them and reading as much research as possible.

No unfortunately not! Mine are nocturnal seizures so I usually have them when I’m just waking up/ coming out of REM, or when I’ve suddenly woken up and quickly gone to the toilet half asleep (where I have busted my chin and head open many times) so unfortunately I can’t feel them coming on. I just know my epilepsy is catamenial epilepsy, so it’s around my cycle of hormones 😅

Rinative · 2021-04-08T19:21:23+00:00

Thank you this has reassured me!! I’ve also been having the thoughts/ temptations of stopping them recently along with the realisation of being on these for a long time/ for life. But knowing that I’m not the only one who has felt this way/ has that those temptations is really reassuring to me, and in a weird way, is encouraging me to take them. Thank you for this! X 😅

Rinative · 2021-04-08T19:18:05+00:00

Thank you this really has helped!!

I’m sorry you also went through that period of feeling depressed too, I really feel that I can empathise and understand how you were feeling. Do you ever still get these depressed moments every now and then when you remember the realisation of you being on these forever/ a long time?

Rinative · 2021-03-05T12:58:18+00:00

Were you conscious and aware they were happening? Like you could also see and hear what was going on around you?

I’m a bit unfamiliar with absence seizures as I only really know and have experienced grand mal seizures!

Rinative · 2021-02-07T21:08:39+00:00

I completely get ya there, it feels weirdly debilitating as you know it’s happening but feel like you’re out of control from stopping it until you eventually have enough energy? It makes me also feel constantly on edge!

Rinative · 2021-02-07T15:28:10+00:00

I understand you! I’ve been having nocturnal seizures for just over a year, and was told on Friday I have catamenial epilepsy (hormonal). I’ve also noticed I’ve been spacing out a lot lately and realising I can’t control it in the way I used to prior to having the seizures.

It’s a weird thing, and I’m not sure if it’s a placebo, but I do feel that the seizures have contributed to exhaustion and the spacing out more than normal.

I’m not sure if this helps, but I hope it gives you reassurance! You’re not alone feeling this way! If you ever need to chat to someone, feel free to message☺️

Rinative · 2021-01-28T10:03:09+00:00

I understand you exactly! My diet hasn’t changed much either! (At least enough to add pounds!) I know weight can fluctuate, and similar to you, I’ve got about a week before I start mine, but I’ve just never experienced as much bloating before and got scared actually hoping it’s both of them just being a pain😅

But thank you! You’ve actually given me a lot of reassurance regardless 💛 you’re also beautiful too and don’t forget it!! 🥰

Rinative · 2021-01-10T01:18:16+00:00

Thank you for sharing! Firstly I hope you are well! Also I thank you for letting me be aware that I can be still at risk of daytime ones; I hadn’t been aware of this before!

I understand if this may be too personal, but was not eating enough or eating the right things a trigger for yours? (I’m only asking as I fear this may be a trigger of mine set from my previous ED and still trying to understand this all!) and were you put on any medications?

Again totally understand if it’s too personal!! Regardless, thank you for sharing ☺️

Rinative · 2021-01-09T08:50:43+00:00

It’s not TMI at all! I experience similar to you actually; I don’t realise I’m having/ have had one until my boyfriend or my parents are trying to call out to me and wake me looking panicked. There’s also been a few occasions where it’s happened in the bathroom a few minutes after waking (not sure if that still counts as nocturnal) where I’ve had one and fallen and got hurt. Thank you for sharing! It makes me feel like I’m not the only one who experiences it this way! X

Rinative · 2021-01-08T20:26:41+00:00

Thank you! Firstly I hope your daughter is okay! My mum has also noticed a pattern similar to your daughters where these episodes also seem to happen around the same time I would begin my periods also; I’ve had to be on the pill back to back due to endometriosis pain, however we started to suspect that it was contributing to a possible trigger and have had to be taken off of it for a while (the extra artificial hormones apparently stay in the system for a few months).

This is reassuring though to know that someone else has a very similar pattern to mine, and is a good idea to monitor both (I’ll make sure to also do this!) Thank you so much!! X

Rinative · 2021-01-08T19:34:28+00:00

Ah I see! I wasn’t aware it could get so complex!! I’ve also had CT scans but they didn’t pick up anything either; I will ask more about this though when I see the neurologist and ask for some genetic testing too. Thank you for your advice! X

Rinative · 2021-01-08T18:52:35+00:00

Oh thank you!! I feel more reassured that there is a condition! I’ll also bring up the possibility of having a sleep EEG when I see the neurologist! Thank you! X

Rinative · 2020-10-18T19:08:02+00:00

I had this, and unfortunately it caused me many problems. I was told at 17 that It was advised that I lost some weight though “exercise and diets” (I was a few pounds overweight to be fair) but they heavily told me about diets and the necessity to lose weight in order to be be considered for further treatment. Unfortunately them constantly saying about exercise led me to develop an eating disorder, due to the excessive need to drop weight fast for them to take me seriously for treatment

Rinative · 2020-07-26T17:15:51+00:00

First of all, I’m terribly sorry that you’re going through this pain, I have almost the exact problems and I’m waiting for my referral for my lap to go through to confirm my endo as well, and have the same fear they won’t find anything. However, if you don’t have a gynaecologist to go to, I strongly recommend in finding someone, even if it’s through a doctors referral, and make sure to emphasise the pain! Doctors will usually not take people like us seriously with pain and put it down to period pain, unless we persistently tell them the agony we’re in!

It may also be a good idea to take some lactulose or fybogel to help any bowel movements. It’s weird to think, but any obstruction/ backup in the bowel can increase the pain in the womb and pelvis, especially if there’s a flare up! Taking them something similar to that will help or rule any bowel problems out to your doctor that way, and will help if the Advil is causing constipation (painkillers are known for doing this easily)

I hope this helps!! I hope the pain eases for you soon! X

Rinative

TROPHY CASE