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.

Also - anything neuro has been ruled out. All brain and epilepsy tests are clear.

I'm really sorry I have no advice but hopefully someone will soon ❤️. That sounds just awful and from an outsider perspective with no medical knowledge I agree with you that surely there must be more that can be done here.

Yes contact PALS . I ama doctor this is absolutely not ok.

Have you has an echo?

Have they thought about SVT as a possibility?

They may need to do something called an ajmaline test and ablation as a treatment.

But these would be done as an outpatient, and can take weeks to arrange. In the meantime you need to be started on medication to try and regulate your heart rate while you are waiting for your appointment.

If your symptoms keep happening do not hesitate to reattend A and E.

As a minimum you should be put on medication to regulate your heart rate while you are awaiting your outpatient appointment.

@Rowthe
I've had many many echos. For days at a time so they've managed to capture and see for themselves a live seizure / tachycardia.

The loop recoder in my heart is basically a mini ECG, I have a blipper when I'm having an episode and I press it and it sends it live to the hospital. They see it happen to me all the time. Some days I go without any and some days I have a few and I record (and DH has videoed a couple.)

I'm on ivabradine to 'control' my HR - it's done absolutely nothing.

I'm utterly terrified 🥰

OP sending you lots of love. Your concern is really valid and I can’t imagine how it feels (also a mum of a 2 year old).

sadly a private assessment may be the only quick option- is there any possibility of previous work or DPs work covering this? Credit card?

PALS is definitely worth it too, you have nothing to lose but honestly there is so little they can do in terms of improving things for staffing. They might get you seen quicker in the clinic?

Thank you. I will do that.

oh @biologicallybroken that sounds so shit and so scary! i honestly don't know what to say to make you feel any better, but hold on to what the professionals have told you that you're young and fit enough to take it healthwise.

Emotionally-wise is a completely different matter! Have you asked for your medical notes and readings from these episodes/admissions? They may give you a bit more insight.

But, yes, if you're not happy with the answers you've been given you should get in touch with PALS who may, at least be able to explain everything to you more clearly and get the answers you're looking for. That's all any of us want - to be able to understand what's going on. If you're worried, then you need reassurance. I would in your situation! xx

I've just this second put my louboutin wedding shoes on market place - even if it's enough for a consult or anything. I'm desperate. Even just for a second opinion. Or just one more person reassuring me my heart isn't going to suddenly cop.

It sounds like the chemotherapy has affected your heart if you've never had an episode before.

If you've had an echo they would have picked up any structural problems. So you can be reassured that your heart will not suddenly stop. Any of the causes that can cause the heart to suddenly stop will have been picked up on an echo.

It sounds like possibly related to the chemotherapy you've got an accessory pathway that is causing your heart rate to go very fast.
If the ivabridine isnt helping they may need to change it to an alternative, but possible treatment may be an ablation procedure. The wait for that would be weeks to months.

But if your echo was normal then the risk of sudden death is almost zero.

My two daughters went through many episodes of SVT and had to be blue-lighted to hospital on more than one occasion before the doctors could diagnose and recommend a treatment. It was SCARY!! But, If I'm honest although it was scary for them and for me, the medical hospital staff had seen it all before and knew how serious it was and when it was safe to discharge them back home - even though the underlying problem was still there (if that makes sense?)
But I think you need far more more reassurance from them - and if it takes PALS to get that reassurance, then you should definitely take it up with them xx

Have they checked your thyroid?

You poor thing, it sounds terrifying. I really hope you get some answers soon. PALS might not make much difference but I think in your position I'd be trying anything and everything xx

Thyroid is okay.

The chemotherapy I had wasn't the usual IV type (if there is such a thing as usual chemo.)

It was hot chemo, through bilateral chest and abso drains and put directly into my abdomen over the course of a week whilst I was asleep. So I guess if anything's going to knock my ticker out of place, it'll be that.

It was nearly 5 years ago though..

I appreciate all of your replies more than you know. Thank you each and every one of you. ❤️

It sounds like an awful situation, by all means speak with pals but it does sound like they've done a lot of tests, presumably not yet found anything that they can treat so referred you onto the specialists. Unfortunately there's a wait list but presumably everyone on it is having similar problems....

The bed situation is a nightmare and should never be happening but demand is through the roof and stretched beyond the ability to cope, they need to move people through so they cam see the next person. Also as you say you can have a seizure/collapse at anytime, so being practical it's no different to sitting in a chair at home.

I know you want a diagnosis and effective treatment, but what are you hoping would change as a result of your complaint? Do you think theyve missed something? Withheld a treatment? Caused you harm?

The new/being trialed plan to ease the pressure in A&E is known as constant flow. Rather than people that need admission onto a ward waiting for bed space/being monitored in a&e which can take hours, they're just going to be moved up and put on the corridor outside the ward. This clears space in A&E. The downside is the corridors are not monitored like the wards, patients could be left there for significant periods without safe access to food/toilet, there is no piped oxygen. But its thought that less harm will be caused leaving patients unmonitored in corridors then is happening by delaying people in the waiting room unassessed.. It's going to be a scary winter.

I genuinely wouldn't say this sounds like POTs. Specially if a tilt table test comes back fine, and seizures with that level and length of unconsciousness just aren't a POTs thing.

I think they've fobbed you off with the diagnosis.

And definitely it's a yes to complaining to PALS. Something is seriously wrong here. Have they definitely definitely ruled out any form of epilepsy? There's so many kinds.

I am so, so sorry you're stuck going through this and I hope you get answers and some relief soon. I'm currently going through a serious health problem myself and I just want to be through the other side so I can learn how to manage it.

I think the reason being I feel a bit off about it all is they've told me i have POTs. That doesn't come with seizures and loss of consciousness of that extent. And also - it happens normally when standing and all POTs tests have come back normal - so in my irrational mind I think it's something more sinister.

I absolutely don't want to complain to cause more strain. The NHS have saved my life multiple times and I am more grateful than they will know. I've done a lot of charity work for the NHS and I was starting a paramedical science degree (which I now can't do, I can't drive until a year seizure free)

I think you're right in what you're saying. I'm just utterly terrified. The medication they've given me quite obviously isn't working either. I just feel like I'm struggling to keep my head above water. But I don't want to complain if it's just going to cause more stress and strain and investigations into staff, as not one staff member has mistreated me. The cannula thing doesn't bother me. Easy mistake and I took it out once home.

I'm just so so so scared. And the prolonged QT is throwing me off. I took one look at google scared myself shitless and haven't looked again.

I agree. I think the same.

Thank you for your reply I really appreciate it

@TheArtfulStodger they've tested for epilepsy. They toyed on putting me on Keppra but want to sort the cardio side first.

I totally sympathise what you're going through. We need closer to start piecing life back together. I hope you get the answers you need soon and you feel better.

(Also anybody who calls anybody a 'Karen' for complaining is an absolute knob.)

Complain to PALS and your MP. It was the only way I could get my father the medical attention he needed and that was prior to covid. It’s worse now.

You have had chemo which is a very harsh and destructive treatment. It could also be from something completely unrelated. They need to get you in-front of the right experts.

A private consultation with a cardiologist shouldn’t be more than £250. Sell them shoes and anything you can think of.

Do your research to find the right person to go to. They all have their own interests.