AIBU to complain to PALS

[biologicallybroken]

Hello.
I don't know what to do or where to turn and I'm utterly desperate. I will try and keep this brief I just desperately need some advise.

Medical history: I was diagnosed with cancer at 23. After gruelling 9 hour surgery and intubation for a while after, followed my chemo, by the grace of god I'm alive. I still have the cancer (it's a rare one that you have to stabilise) but thankfully there is no evidence of tumours. I can only pray for many more clear scans. I don't drink or smoke, never taken drugs. Have a 1 year old DD conceived via IVF 2020. She's nearly 2.

What my new issue is, is completely unrelated. This is probably really outing but I'm passed the point of caring.

Beginning of august I collapsed at home. I had never collapsed in my life. I was putting a chicken in the oven, and just dropped to the floor (chipping a tooth on the way). Heart rate was c35bpm.
Hospital put it down to vagal syncope. Had a bag of fluids and sent on my way.
After a few days at home it happened again. And again and again and again. I knew I couldn't kept going into hospital each time so tried the GP - still waiting for an appointment. Last month the collapses have turned into full blown seizures. Admitted to hospital again, had every scan, ECG, EEG, tilt table test, stress test, 72hr halter. They have absolutely NO trigger whatsoever. The doctors witnessed many. Sent home with ivabradine and to see what happens. They also fitted a Loop Recorder in my heart.
Last Wednesday I had 6 back to back seizures in 30 minutes, with me being totally unresponsive during. I have no recollection of it. Loop recorder showed heart rate of 229 for 42 minutes.
Another week in hospital, more head scratching. Sent home with POTs diagnosis. Now apart from the first ever collapse, every single other episode has been sitting / laying / even sleeping. Tilt table test fine. Blood pressure slightly low but fine.

Near the end I promise. This morning. I was up early 5am reading. (I struggle to sleep from the adrenaline dumps from the seizures) symptoms started, woke DH for an impending seizure. I was out cold for 8 minutes. I was breathing, heart rate was reading 272. It was between 250 and 280 for 12 minutes. Came round vomiting seeing the blue lights.
The paramedics were fighting my corner to get me a side room. As soon as they left I was put in the waiting room in A&E on a normal chair. I had 3 seizures in that chair, one ended up with me on the floor. I was beside myself with embarrassment. Got taken into a side room, said bloods were fine, heart rate is fine and to go home. I am terrified that I'm going to die. 5 out of 7 ECGs showed prolonged QT but no diagnosis. I have surrendered my driving license, therefore have stopped working. I cannot be on my own. I can't take my baby out. My life has well and truly gone up the shitter. I begged and pleaded with the doctor to please help me. She said as I'm 28 and slim, my heart will take it and not to worry. That I don't need to keep coming back in.

The lines are blurring. Surely a sudden loss of consciousness and an incredibly high HR for a sustained period of time is an emergency. When it happens I honestly feel like I'm going to die. I panic which doesn't help. Family history on mums side of ventricular fibrillation.

I'm waiting for an 'urgent' referral to a Arrhythmia clinic within six months. I'm not allowed on ANY anti anxiety meds to just try and get some sleep as they don't know what's wrong. I've been living off of 2 hours broken sleep for weeks. I'm underweight, I'm tired, my hair is snapping and my nails are breaking. I look ill.

I got sent home. I waited 45 minutes for the nurse to remove my cannula as they were ushering me out of the room saying they needed the bed. The nurse didn't come. I walked out, came home and took it out myself.

I'm sat in tears in the bath. When will this get better. Do I need to complain to PALS to get some sort of care or answer? Am I being dramatic and there really is nothing anyone can do? The doctor suggested going private if I can afford it. I can barely afford food on the table as I'm now not working. My mother had a serious stroke at 34. I'm desperately scared history is going to repeat itself. If you're still here, thank you. Thank you so much.

Is there anyway you can Google, figure out who might be the best specialist in this area, see if they practice on the NHS anywhere, call their secretary to explain and see if they can get you an appointment and then beg your GP to refer you?

I have done the above and saw a specialist in a different city, although it was 10 years ago now.

Also contact your Mp, they can actually be quite useful with nudging things along.

Either way keep fighting, keep trying, kick up a fuss. If you’re not working now dedicate your time to fighting the system. Complain to everyone. Go to different hospitals, different specialists.

oh and keep a super accurate record of a) every health incident (seizure, dizziness etc) with time, date and any other relevant info (were you sitting/standing etc) and b) name of every single person you speak to from receptionists to consultants along with the time, date and number you spoke to them on.

im so so sorry you’re going through this. I hope you find an answer.

I agree. My sister has had PoTS for 20 years and has never had these sorts of episodes.

This sounds a nightmare you poor women! I think you should complain to pals. You need to get on top of this. Yes the nhs is under pressure but if we don't complain it won't ever change. Im a nurse as well so I don't say complain lightly. Hope you get better with it soon x

Thank you, I had the CRS and HIPEC surgery with chemo for mesothelioma (at 23).

I'll absolutely bring this up with the team. I had no idea!

Yanbu to complain to PALS, it’s really no way to live. You sound exactly like my oh 5 years ago, are you anxious op? We saw every specialist you can imagine, absolutely ruled out epilepsy and after about 3 months of tests he was diagnosed with cardiac syncope. He was having episodes that completely mimicked tonic-clonic seizures, it was after the 48 hour ecg that we found out his heart rate would shoot to 175+ immediately before. Are you under a cardiologist?

Also I meant were you anxious before the episodes, because who wouldn’t be after having their life turned upside down.

So sorry to hear what you are going through. Sounds like you now have a plan, and fingers crossed you get some answers / help.

Reading you were in the bath made me feel anxious though! Please be careful x

Hi everyone. Bit of an update. Not a great one though.

Yesterday morning I had a 14 minute seizure. Proper typical seizure and ive chipped my bottom tooth.
After 3 minutes DH called 999, they were there in 4 minutes. They couldn't stabilise me so a response car came after that. I was still completely fitting and seizing when they turned up and I was really glad they saw just how bad it is. So they can give my case a bit more creditability.

I've been in hospital and moved to the cardio ward. I am absolutely flawed I feel like shit. I haven't slept a wink due to the adrenaline dumps. Ward round consultant came in saying POTs again. I challenged it this time and said they are happening in my sleep (I was napping on the sofa when it happened and thank god my husband was next to me.) and no seizure is safe for 12 minutes.

She offered me psych meds and left. I am so angry I can't even explain. I don't need psych meds. Yes I'm utterly terrified and anxious, but I don't want a plaster. I want answers to be fixed. She asked why nobody has video recorded me having a fit - I said my husband was on the phone to 999 the whole time, I was fitting of course he's not going to sit there and record it. Plus the medics came and saw everything. I was blue lighted - they don't blue light unless deemed life threatening.

She's sending me home today. This is my life now.

On the same breath a consultant last week (different to her) said they think I have prolonged QT and sent me home with a huge list of meds I cannot take. On them was a specific warning not to take any psychological drugs. So why is yet another consultant saying any different?

I'm now being so fobbed off. My heart rate went up to 238 for 17 minutes - this is not safe and not normal. I'm disgusted with it all, she was so rude and dismissive and when I challenged her she literally walked out and just said 'you need to go home'
I had 6 seizures in total yesterday. 6.

I've got a private appointment on 14th November and I cannot wait to get my care taken from this hospital. What an absolute shitshow.

Also - I have a picture of my shoulder. One of the seizures I had yesterday I was being pinned down. Again when challenged they said they were trying to 'stimulate pain to assess lack of consciousness'. I was coming out of the seizure felt like my shoulder had been battered. I now have a fist size bruise on my shoulder. I'm tired. My body hurts. I'm so scared. The nurses and doctors have been incredible and they're as frustrated as I. The consultant on the other hand. I'm utterly broken.

So it sounds like the consultant possibly thinks your seizures are functional and possibly not related to a cardiac or neurological cause. Which from your description is supported (not proved! ) by the duration and frequency of your seizures, a lack of response to the treating medications and awareness. Unless formally diagnosed with a functional seizure disorder an ambulance crew would typically treat presuming an epileptic cause, and it would be normal to prealert into resus as you're not going to sit outside queuing with someone having seizure like activity. We would do this even if suspecious of a functional seizure (there are subtle differences in the type of movements that occur and this is why the consultant wanted to see a video of exactly what it looked like). A diagnosis/prescribing for functional seizure (psychological medications) by a consultant would only normally occur following a very detailed history and extensive testing looking for other causes proving negative.

I wish you all the luck with your appointment on the 14th in getting closer to a treatment plan that works for you.

If there is agreement from them of a functional cause then it's not minimising you or suggesting you're 'faking' or that you could just stop if you wanted to. It's far more complicated than that, this would be like telling someone with severe depression to just smile and be happy. But one of the first steps to recovery in this instance can be acceptance of the possibility.

I'm not trying to diagnose you! Just perspective from someone who sees a lot of patients having both functional and epileptic seizures.

Thank you, all your replies have been really helpful and informative.

We have a couple of videos but not the really bad ones as DH is too busy on the phone to 999, but many doctors have seen the seizures here as well as paramedics who have written very details accounts of what they looked like and what happened. I almost don't want to show her the videos we do have as they are very minimal compared to the bad ones.

2 nurses have been in since apologising because of her lack of bedside manor. I can only pray the new consultant can help me. I don't understand why she wants to put me on anxiety drugs when I was sent home with a list of medications that were specifically not to be given due to the prolonged QT, but she's sending me home with a box.

I'm so lost :(

The warnings regards QT intervals and certain drugs are just that, warnings. An experienced clinician like a consultant could weigh the risks surrounding this on an individual patient level and feel it's still safe/patient benefit to prescribe. These can be complicated prescribing cases which require a lot of knowledge to understand and weigh benefit and risk, not something I have myself in this instance.

It would be a reasonable question to put to the prescribing doctor - "Some of these new medications I was prescribed are on a list of ones I was warned not to take when I was seen before, they said I had a long QT interval and it could be dangerous, has this been considered?" It's there interests to reassure you, there's no point in prescribing if you're not going to take them.

I’d get a private appointment with a cardiologist. Try to get as much information for them before the appointment/ discharge letters/ notes etc

Sorry I just saw earlier posts. My reason for mentioning it was because I am checked every 6 months because of one of the medications that I take.

What a nightmare for you.

DH has got Atrial Fibrilation that was only discovered when he went under anaesthesia for a hernia repair. As it was at the start of lockdown, it took months to try and see anyone.... and in the end after a few very scary syncopal episodes we bit the bullet and went privately for a consultation.

It's taken nearly 2 years and he's better after a catheter ablation but he's started getting AF again in the last month so we're having to see the Cardiologist again.

It's so scary when it's your heart.

So sorry you’re going through this. Without specific expertise this would be my plan:

Yes to PALS. Also insist on emergency GP appt and then insist on urgent referral to every possible relevant consultant, ask them to write a letter to expedite the referral you have. Call every hosp department that you are known to and ask what the process is for urgent appt. Don’t rule anything out as you don’t know what it is yet.

If possible, do small things that help your general health like eating fresh food, calming sensory activities, read a good book or magazine, yoga.

Hi op. I'm so sorry you're going through this.

I have looked after a teenager who had very similar symptoms you. She'd have seizures up to 14 times a day. They also thought it might be a cardiac problem and she had a monitor fitted. Her heart rate would be very high during a seizure but then settle. Loads of cardiac tests all come back clear, epilepsy tests clear. Mri etc absolutely everything came back clear but there we still were helping her as she had seizures back to back some days.

She was eventually diagnosed with a functional neurological disorder. She had help through a team who specialise in this and she's recovered enough to live a normal life (she's now in her 20's).

Might be something you'd like to take a look into.

Best of luck x

Might not be top of your priority list at the moment but apply for PIP.

This!

My oncologist has recommended an amazing cardiologist who works in the same hospital as my cancer team.

I sold the shoes and paid for the consult which is in just over a week - he did say it would possibly be the case if he can treat me, then to move my NHS care over to them and then I can be treated under one roof.

I hope so - I'm so tired

This is excellent news!!