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Anyone w/ MRI experience?

So yesterday I got my appt through for my MRI at the nearer hospital, and it’s this Friday 😳

My bf(/carer) rang today to ask a few questions, eg about dimming lighting, turning lights off etc. He also said “during seizures Dally may twitch or move their hand/arm – what happens in that situation?”, and the nurse said if I have seizure and move, the MRI is ruined 😳😫

She then asked how likely it was I’d have a seizure, and it’s like um…very? 😅

I mean travel there will have weakened me & caused seizures, the lights at the hospital will have trigger me, and even on a ‘good’ day for seizures (w/ no big triggers) that sees me having 10-15 seizures…so yeah, add in some BIG triggers and I’m definitely gonna have a couple in 20-45 minutes of MRI-fun-time!!

So the nurse was like ‘hmm, that is problematic’, and we’re here thinking WHY WAS NOBODY TOLD THAT I HAVE SO MANY SEIZURES A DAY, & STAYING COMPLETELY STILL FOR SO LONG WOULD BE AN ISSUE?! Like is that not kind of important?!? 😂

Seriously, if we didn’t know how useless the NHS is, we could have not phoned to let them know and just assumed it would be on my file!! Then we’d have got there and nothing would have been prepared and we’d be screwed!

The nurse asked my bf how reliable my auras are, and he said I get auras with about 70% of my seizures. So now the plan is if I have an aura during the MRI, I press the panic button. They’re also gonna possibly put extra padding around my head in the cage, to try keep it still if I seize without an aura 😫

My question to anyone with experience who has experience with an MRI – do you know if they can pause, during? Eg if I pushed the panic button, can they pause the MRI until I’m still again or would it be starting again?!

Good news though, they have said they can turn all the lights off in the MRI room, including in the machine itself. So at least that’s something 😅

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Fall-outs, weird days, depression be gone

Sorry I haven’t been posting much, I’ve been going through such an intense depressive episode 😫

It’s been really tough, I’ve shed a lot of tears and have spent most my time feeling guilty & hopeless. Add to that family arguments/conflict on both sides, the stress of PIP assessments and other benefit crap, the daily struggle of various disabilities, and the fact I’m still grieving for our dog that was PTS before Christmas…and yeah, things have been awful.

But I hope I’m kinda climbing my way out of it.

It was supposed to be my MRI this weekend, but because of how fraught things were with my parents, we phoned up and delayed it so that it could take place at the hospital 15 minutes away instead of 90+ minutes away. My EEG & neurologist appts should also be there now, too, so that’s good 🙂

In order to switch where the appts were, my partner had to ring the following:

Call the neuro switchboard. Be put through to my neuro’s secretary. Be referred to the neuro switchboard again. Be transferred to the secretary AGAIN 😂 Be pushed back to the neuro switchboard for the 3rd & final time, then referred to the x-ray department HAHAHA 😶😂

The nurse we finally spoke to, in order to switch where the referral was, couldn’t believe we’d been sent to their hospital when our local is so much closer…we were like, “yeah, us neither!” 😅

I’m really, really glad that’s sorted though.

I’m knackered tonight. Seizure cluster this evening exhausted me, so I’m heading to bed now…hoping this post makes sense…?

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A&E, nice staff & negligence

I’ve been having an awful time for seizures.

Ever since autumn hit, and the days are mostly grey and the sun sets earlier, I’ve been having 10+ seizures MORE a day than I usually do.

Saturday was awful. Mid afternoon I was out of it for over an hour, with back to back seizures and being unable to respond or understand anything between them. I was having seizures regularly all day.

At about 8pm we called 111, making it clear they were NOT tonic clonic seizures and I was not in non-convulsive status epilepticus right now. We said we were just concerned abs didn’t know what’s to go four help. The guy said he wanted to call an ambulance to bring me in, and when we said we could get the train there so as not to waste their time, he said he wanted us to travel in am ambulance.

We arrived at A&E at 9.30pm. The paramedics were lovely – asking us about our pets and really putting me at ease. They turned the lights off in the ambulance and put the blue lights on so add to be nicer on my brain. I had four seizures on the way to the hospital.

We waited about four hours at A&E then were seen by a Doctor. He did some examinations, then turned the light off in the cubicle so he could do exams where I’d need to remove my goggles. He did this himself and I didn’t ask him to do so.

He did a pupil reflex test where he shone a light in my eyes, which immediately triggered a seizure. He timed the seizure (45 seconds) and asked my partner if how I was behaving was typical – staring, unresponsive, picking at things.

When I came round he said the light was clearly a trigger, and that these were obviously absence seizures. We told him how I feel before, during, and after, and he said it was all very typical of seizures.

It was so nice to be listened to and understood!

He wanted me seen by a neurologist, but there was no way to do that right now, so he said he’d admit me to a ward and I’d spend the night there.

We were waiting in that room about three hours. Within the first hour I had a blood test, ECG, gave urine, and had blood pressure & temp taken for the 4th time. 

At about 4am we were moved into the hallway. Here the fluorescent lights were extremely bright, and I’d already had 45+ seizures that day so my brain was mush. I began to feel very out of it,  had seizures, felt awful and was panicky. I got a really bad headache and my partner got me some paracetamol. The hospital was full of noisy drunk people which was not being my head. I remember tearfully begging staff to put me somewhere dark.

Just before 5am I was moved to the ward. A consultant Dr came and did reflex tests – no lights, just tapping my joints, getting me to squeeze his fingers etc – he asked for an overview of why I was there and looked at my notes. He commented that a temp reading said I’d had a fever earlier, which was ‘weird’ but ‘probably nothing to worry about’, although he wanted to do a chest xray the next day.

At 5.25am I was left to go to sleep, although it took a long time. I was next to the brightly lit hallway which didn’t help, and the nurses walked about singing, shouting to each other and patients etc.

At 7.15am a male nurse said “turning the lights on ladies”, and fluorescent light flooded the room. I’d slept with my face under a jacket, so I emerged and grabbed my wide brimmed hat and goggles. Almost immediately I started having seizures – the lighting was an obvious trigger, along with only getting one hours sleep, stress, the heavy seizure day the day before, and I hadn’t eaten in 20 hours.

I spent the next 45ish minutes out of it, seizing, and feeling terrible physically – trembling, exhausted, nauseous. I deliberately wanted to ask for help from one of the nurses walking past, but wasn’t aware enough and couldn’t manage words. I finally tearfully stammered to one “the lights are really getting to me”. He turned the light directly above me off.

At another point the nurse who had been assigned to me for the day said “welcome back” as I came around from a seizure. Otherwise I was ignored.

At 9am a Dr and someone else came to see me. He asked how I was, and all I could think to respond was “okay…”. He asked where I lived, and it took me about 10 seconds to work it out and reply. He asked what I did for a living, and I couldn’t work out what to say so said I receive PIP. He then said something truly disgusting: “You’re too young for PIP, no? You should be out and about in the world”.

I was unfortunately too ill to respond and tell him that disability has no age limit. And don’t you think I would truly love to be able to get out in the world, rather than living a life of misery?

He finished with “you want to go home today, yes?”, and I confusedly said yes. Because I did, after I’d Breen seen by a neurologist and gotten help. He then said I was released to go.

The nurse assigned to me came and asked if I had someone who could come pick me up. I was still confused, but said my partner. I called my partner and didn’t know what to say other than come to me haha.

I sat there for a while, not understanding at all what was going on, then gathered my things and tried to find someone to ask if I could leave and wait outside. I just wanted out. I stood in the hallway for several minutes, but was too out of it to understand how to catch anyone’s eye and ask, and everyone just walked past me. I had a seizure, then walked further up the corridor and finally said to a passing woman “excuse me, if I’m being discharged can I go wait outside?” She checked with a nurse and said yes.

I left the ward and walked down a few corridors before having to stop, very confused, and have a seizure. Once I’d come around I started walking, stumbled across an exit sign, and left.

I called my partner to let him know where I was heading, then called my parents. They were furious about how I’d been treated, and my mum insisted on calling the hospital. Staff were happy to speak to her about confidential information to do with me without asking for my consent.

My mum was told several HUGE lies.

  1. That I’d had a CT scan, and the results showed I wasn’t having seizures. This didn’t happen. I never had a CT scan. I didn’t have ANY examinations that could identify seizures. When my mum called back to confirm this, she was told it was a ‘mistake’ and that they can’t be expected to know details of 43 patients at once!
  2. They said that no staff had witnessed seizures in 12 hours of observation, and the reason I was released from the ward was because I hadn’t had seizures that morning. I was able to tell my mum I’d been having many seizures since 7.15am, and one staff member actually referred to them by saying “welcome back”. There were also the paramedics, two A&E nurses, and the A&E Dr who had witnessed seizures.

My mum was furious.

She’s filing a formal complaint for us, so we can rest and recover from the experience. I’m still having a ton of seizures and feel awful everyday, and medical professionals are still refusing to help. 

And I’ve learnt to never go to A&E for my seizures again!!!

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Crisis Resolution & Home Treatment Team – the useless service!

Gog here, but I can safely write this post for Anon too.

Crisis Team have failed us every time we have contacted / seen them.

There are lots of things out there that have a high rate of dissatisfaction and that don’t fulfill the job they are supposed to, but I think the scariest thing about CRHT is that it’s for people who need help urgently. They are in a crisis. It’s not just Anon and myself that have had terrible experiences with Crisis Team either, I’ve read and been told lots of things by other people that make my stomach tighten.

The first time we were referred to CRHT was actually the first time I managed to get Anon to see a Doctor, ever. She had been actively suicidal for months; we had only been dating about 7 months and I was physically exhausted from having to watch her every second of every day to keep her alive. The GP referred us to Crisis Team immediately.

We met with two women and spent a long time talking with them…I don’t remember exactly how long because this was seven years ago and we weren’t as experienced with the NHS then. We actually believed that this appointment would help us.

The appointment ended with the woman telling Anon that she was ‘just stressed about her exams’, and telling her to try relax. We had spent the past hour at least telling them she had been suicidal & depressed for 5 months, she couldn’t go out alone and her eating disorder was in full swing.

We got out the hospital and Anon burst into tears. I remember she just clung to me and sobbed. I wanted to go back in, to argue with them, but Anon isn’t forgiving…once someone has done something to her, that is it. She won’t trust them again.

The next time we saw them, a year later, was when I had taken Anon to A&E because I was scared she would kill herself while I slept. The Doctor at A&E treated Anon like a child – he was saying to her “And do you promise to go see your GP on Monday? And do you promise not to hurt yourself until then?” And Anon was just nodding dumbly because she had already shut down and would have agreed to anything then walked out and jumped off the nearest high building.

That was supposed to be our A&E visit, but I argued ferociously to see Crisis Team. I wish I hadn’t.

We waited hours until two men showed up and asked to speak to Anon. They wouldn’t let me go with her. I don’t know why, and at the time I wasn’t used to fighting for her – I still trusted the system, remember? I asked them when they’d talk to me, and they said they’d have a meeting with me after talking to Anon.

Anon doesn’t remember much of what happened. She said they took her to a room and asked her question after question, while she stared at the floor and couldn’t answer. She was struggling so much at the time, and on top of that she had (still has to some extent) trust issues and fear with unknown men.

After what felt like hours Anon appeared. You know what those idiots had done? Once they’d finished talking to Anon, they’d opened the door and told Anon she could go. She was in a hospital she had NEVER been in before, and she had no idea where she was or how to get back to me!! They left her to wander, terrified, around a hospital!

I was confused about when they would talk to me. I eventually saw them walking towards the hospital exit – wait, what? I ran to catch them up, and asked when they would be talking to me, and they shouted “Anon will tell you what we talked about” over their shoulder. That was it.

When we left the building Anon started crying hysterically.

The third time we had to deal with Crisis Team was after an urgent GP appointment following an overdose. The GP became quite panicked when we told him about Anon’s overdose; he took some bloods and then phoned and babbled to Crisis Team. They later phone and, after a twenty minute phone call, said they couldn’t help because Anon wasn’t “actively” suicidal…um, she had just taken an overdose the day before?!

The fourth time we saw Crisis Team was when Anon had been manic for weeks; she couldn’t sit still, she was hallucinating, and she thought she was invincible. We saw one male psychiatrist, and he was okay…the best experience we have had with CRHT anyway.

He asked Anon questions but she was too distracted to answer, and he wouldn’t let me help fill him in. He seemed to cling on to and ridicule things that I thought were totally unimportant (eg. Anon drank alcohol for the first time when she was 13, that she drank as much as 3 double vodkas on a night out – “do you have to be carried home after that??”). At the end of the appointment he told us to go to the GP and get referred to a psychiatrist asap…wow, thanks genius!

This brings us to yesterday 🙂

Yesterday was a really terrible day. Anon was panicked from the get go, but the sort of panic where you can’t function, think, exist even. She couldn’t talk because her voice would wobble and she would cry. She was terrified.

I phoned Single Point Of Access and spoke with someone there, and they gave us an appointment for tomorrow (today). We’ve never been given an appointment with someone so quickly! They told me to phone Crisis Team if we couldn’t cope.

We couldn’t cope, so I phoned Crisis Team. I told the man that answered that Anon’s anxiety was through the roof. She was hallucinating and extremely paranoid. The man spent ten minutes talking about ‘calm breathing’ and then said we should phone SPOA and ask them to push the appointment forwards.

This was ridiculous.

Not only had SPOA advised me to phone CRHT (and yes, I told him that), but by this time it was 4pm. SPOA is around 90 mins away, and even if they could fit us in (which is unlikely) they wouldn’t see us after 5pm. CRHT is a 24 hour service, yet they wouldn’t help us.

Thanks Crisis Team, you are the worst service we have ever had to deal with 🙂

I’m very anxious about the appointment today, mainly for how it will affect Anon. Fingers crossed.

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It’s so hard to get the ill person help…

It’s Anon’s partner and full-time carer here. Just come to have a moan – if we can’t whinge on our blog about Bipolar, where can we?

Things have been hideously hard for quite a number of years now, but it seems to have worsened drastically this past what, four, five months?

Anon is unrecognisable…constant fear and panic, hallucinations…just a total blankness, numbness and desperation. A terror. Last night she sat on the couch for hours, not talking or moving or being, with tears trickling down her face.

I’m pushing so hard against her to convince her to let me get us help, but I’m also having to battle equally hard against the wonderful NHS.

I got in touch with our GP practice and, as the GP that we so trusted and respected has apparently left, I spoke with the receptionist about getting Anon a new GP, and asked if there were any that specialised in mental health.

The receptionist was surprisingly helpful (they usually suck) and recommended a Doctor who sounded good. I spoke with Anon and persuaded her to give him a try, but we had to wait until this week when he was back from paternity leave.

We were supposed to get a phone appointment at 5.30pm from the Doctor, but at 6.10pm it still hadn’t come and we were both anxious and stressed and we also really needed to walk our dogs.

We headed out and at 6.20pm, when we were on a narrow country lane with absolutely no lighting and where cars drive way too fast, we got a phone call from the Doctor and missed the call. We rushed to a footpath off the road and phoned back less than ten minutes after the call, but the surgery was shut so nobody picked up.

The Doctor left an answerphone message which stressed Anon out, as even though I clearly told the receptionist why I was ringing and that the Doctor should talk to me, and not Anon, the Doctor started the message by saying “Hello [Anon]”, and went on to talk about how Anon needed a medication review and talked about something to do with her prescription…THAT’S NOT WHY WE MADE THIS APPOINTMENT!!

And as Anon has such trouble trusting Doctors after years of being treated like shit, she now doesn’t want to see him…

This weekend has been absolute hell and I am amazed we have got through it without a suicide attempt. Bless Anon she has been fighting so hard and when out walking, if we bump into someone we know or she’s training our dogs she has put on such a convincing mask.

Tonight I will probably end up calling NHS 111, but I don’t see how they can help.

Our issue at the moment is the one professional who treated us well has left, and Anon finds meeting new Doctors terrifying. Likewise we have no help from a Social Worker as she blew it with Anon, and Anon now doesn’t want to get help from the same establishment due to her paranoia.

Crisis Team have always made the situation worse and going to A&E would be incredibly stressful and difficult for us all, and in the past when we have gone to hospital we have been sent away with ‘keep doing what you’re doing, watch her 24/7 and go see your GP when you can.’

Nobody helps.

Professionals never seem to take Anon seriously, and I don’t know why. Is it because she almost always turns up for appointments, and she tries her best to answer the Doctors’ questions? Is it because she’s not crying hysterically, or screaming and shouting? Because she’s in just as much pain, just as much danger, as if she was.

Where else can I go for help? We can’t live like this. I have never seen Anon in such a crisis and I can’t help.

Most the medications we’d be willing to try for Anon I think we would really have to fight for, as the medications she wants to try either aren’t used in the UK or aren’t used for Bipolar…but the ones we have been offered (Seroquel / Quetiapine, Lamotrigine / Lamictal, Depakote, Zyprexa / Olanzipine, Lithium) we have either tried or all have side effects that would scare me, never mind Anon!

This is a huge rant, but I need to get it out somehow.

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Happy World Mental Health Day!

We are posting this in the last hour of World Mental Health Day 2015; I hope it’s been a positive day for everyone 🙂

Our lives continue to be a huge struggle that most people (including professionals – maybe especially professionals?) seem to be oblivious to.

Last weekend Anon almost ended up in A&E as she was struggling to understand that the world was real; she was extremely panicky, anxious and struggling with intense paranoia.

The only reason we didn’t make the trip to hospital was because we were 99% sure it wouldn’t help, so instead we said Gog would phone and speak with our wonderfully helpful GP on Monday.

He did so, only to find out that our GP has left the surgery for good and nobody had told us.

Anon has had such bad experiences with professionals, and is struggling so much with paranoia and anxiety, that seeing a new GP is unthinkable.

We are stuck.

I hope your week has been better than ours!