others experience/ feelings / support

[Charl48]

hello new to here , had a seizure 1st one , they think it was due to low sodium die to a medication I was taking . My health had been bad for months prior still on going investigations going on .. I was in icu for 2 days then in a ward for 7 . I’m really struggling with low mood anxiety and trying to make out what happened . Struggling sleep and having dizzy spells ( totally feel traumatise , muscle aches headaches

[Sepsur]

it’s important to try and do a little exercise - even walking a few hundred feet if that’s all you can manage. Rest when you need and eat little & often. You mood maybe all over the place for sometime - it’s not unusual. Your poor old body has been through an unbelievable trauma which takes its toll

[Charl48 in reply to Sepsur]

Thank you for this 🙏🏻 , yes that’s what I’m doing my body won’t let me do anymore yet

[Sepsur in reply to Charl48]

Dizzy can sometimes be a sign that you are a little dehydrated- it’s also a sign of low blood pressure - take care standing up - I have 4 staples into the back of my head for standing too quick - bending is equally problematic. Also check how deeply you are breathing - we often get into a bad habit of shallow breathing.

[Charl48 in reply to Sepsur]

Yes I agree with the breathing 😮‍💨 especially as I get very anxious 😬

[Sepsur in reply to Charl48]

Try and practice some deep thoracic breathing - like box breathing - lots of handy hints on this page

cc-sn.org/information

[Hidden]

My husband sodium levels fall to unacceptable levels too and when this happens he feels weak. We always tell the new professionals we meet as many people suffer from their sodium levels being too high. He now takes 2 sodium chloride tablets a day and has regular blood tests to ensure the level is maintained. Like you he is finding it hard to understand what has happened. For us the first symptoms were in March 2023 and we are still on the journey of discovering and understanding what is going on and as different dosages and types of medication are tried. Some of these have been causing light-headedness, lack of appetite, extreme tiredness, low blood pressure etc. The cardiac nurse tells us it takes time to tailor the drugs to each of us and these symptoms are the signs that a drug dosage needs to be lowered or the drug changed. It is demanding, exhausting, worrying and shocking. As Sepsur says you have had a rotten time with ITU etc. it is not surprising you are reeling with the events and emotionally feeling low, in a sense how could you feel otherwise given what has happened. If you look through the posts on here you will find so many people who struggle emotionally with the shock but gradually find something new emerges.

[Charl48]

thank you for this 🙏🏻they gave Iv - I had bloods last week they are currently good level ! I like your husband need to know exactly what’s going on . It’s all very scary 😟

I am have been given no medication for this they believed it to be to with an anti depressant I was taking , which has now stopped ! They only think this obviously this has now stopped .

[Slip-Digby]

There is no antidepressant on earth that will put you in the intensive care unit for two days!

(unless of course you have an catastrophic allergic reaction - which doesn't sound like what you describe)

No wonder you feel like you don't know what is going on. What was the antidepressant that they say caused this?

I wish you the best and hope you get to the route cause of your problems!

[Charl48 in reply to Slip-Digby]

They believe the sertraline antidepressant caused the low sodium which caused a seizure! Waiting for mri results and ct scan results yet 🥹

[downthemoor]

I've only just seen your post. Dec 2022 I had seizure and CPR ....rushed in with suspected stroke. Was severe hyponatraemia ...sodium less than 100 on admission. 6 days in ICU to stabilise plus fight aspiration pneumonia . Like you had felt ill for months before it happened. They say I just had D&V that caused it but I beg to differ as though I remember nothing 5 days before hospital and all through ICU it wasn't that severe a tummy bug according to texts and info from family. 18 months on and I'm a shadow of my former self ..not helped by covid this Xmas . My heart is all over the place with the slightest exertion, even housework is too much. Endless visits to GP , cardiologist and endocrinologist have found nothing....

[Charl48 in reply to downthemoor]

I’m currently a shadow of my former self too @ the moment 😕

[downthemoor]

As Sepsur says....look at cc-sn.org there's so much help and information available from this group. I would have gone under without them!

[downthemoor]

ALSO...if you google drug induced hyponatraemia there's a long list that take levels down. Including amitriptyline that GP has just put me on as getting no sleep since ICU plus nerve pain of frozen shoulder. I'm staying alert and aware of the symptoms this time! My partner says I was confused but 111 told him they had no concerns as sounded 'normal' . Hence ended up with 999 CPR air ambulance the whole works.....

[Charl48 in reply to downthemoor]

So you take amtriptyline now ?

[Slip-Digby in reply to downthemoor]

To absolute hell with Amitriptyline - an archaic medication prescribed off label for things the GPs haven't got the bottle to prescribe properly for.

If a doctor offered me that ghastly, stone-aged shite I'd ... Ah I just donnae think that stuff is safe. There are so many safer and well tolerated drugs.

It's a big no from me X

[downthemoor in reply to Slip-Digby]

My old GP admitted it had a 'horrible profile ' and was a 'nasty drug' ...his words . When I asked why they prescribed he said 'it's what we give when we don't know what else to do '🤦🏼‍♀️

Just stopped it as felt so zombified on it ...plus increased my tinnitus to awful levels and my heart rate which is still recovering from ICI increased to uncomfortable levels . Oh and migraine ...haven't had for years now how two massive ones in a week . So after two and half weeks I'm ditching it!!

[Slip-Digby in reply to downthemoor]

---------------

"My old GP admitted it had a 'horrible profile ' and was a 'nasty drug' ...his words . When I asked why they prescribed he said 'it's what we give when we don't know what else to do"

---------------

What that really means is 'As a GP we know you need proper sleep medication and proper analgesia (like what hospitals use because they know what they are doing) but since Shipman - the worse serial-killer of all time - a GP who used Diamorphine to commit hundreds of homicides, and since all those women GPs handed benzodiazepines to like candy in the 60s started asking difficult questions in courts all over the world, er we just give you Amitriptyline and pretend we don't know any better'

Well they do know better but haven't got the balls to prescribe what you really need.

Ask a GP if we would prescribe his wife / mother:

Amitriptyline or DHC / Morphine for severe pain?

Amitriptyline or Lormetazepam / Diazepam for sleeplessness with anxiety?

In fact print this reply out and let your GP read it and see how they react.

Because I might just be a humble patient, but I know anyone who is prescribed Amitriptyline 'off-label' is getting a very bad service from the medical profession.

First - Do No Harm. Well stop RXing garbage from the 1950s originally created for schizophrenia then.

[downthemoor in reply to Slip-Digby]

Well said! Just come off ami as made me feel so dreadful ...like a zombie, heart rate racing ...have had problems with this since ICU so def didn't need to make it worse...so at least I know what's me now. I was given diazapem once for MRI scan anxiety and it did give me the most amazing sleep ever! I was so sorry when I ran out of them!! Melatonin sort of helped get a day/night pattern after ICU but not for long term. Zoplicone certainly sends me to sleep but again not for long term. Crazy they give ami so readily....

[downthemoor]

yes just started as haven't slept for months with frozen shoulder on top of post ICU sleep struggles....only lowest dose so hope safe!!GP knows my history so hopefully thought about it!

[Charl48 in reply to downthemoor]

That’s interesting to know as I have a tear in my hip and bursitis and pain I that I am barley getting sleep - the Gp given me 2 weeks of zopiclone (won’t give more than that ) I try to use sparingly) I am currently on the sick from work ! As I have no energy yet to work ! I am doing little walks out and housework ! I’ve been out of hospital 2 weeks. Waiting on Ct results for abdomen chest pelvis ! I had ultrasound (2) on pelvis and I do have fibroidsi bleed very heavy had biopsy uterus clear last year that’s clear had 2 brain scans after seizure they are clear !had lumber puncture in hospital came up with slight high protein in csf the nearokgist believes this to be because of the seizure ,So I’m now waiting on mri on spine to come back and ct on on. Abdomen chest ! And I’m due to go to a haematologist also ! I’m 2 weeks out of hospital. I will look @ that website x

[downthemoor]

Yes do!! They won't give zoplicine fir longer as addictive but amitriptyline is off license for pain esp at noght and def helps sleep .

I had every test under the sun similar to you ...CT lumbar puncture etc....it's very early days for you . I learnt that the hard way . 18 months now for me...GP generally not versed on ICU recovery which can be long no matter how short the stay . The group will help immensely

[Charl48 in reply to downthemoor]

Thank you it’s definitely helping me ! IMs o lucky to have the help and love patients from my partner too ! Are you back @ work ? X

[downthemoor in reply to Charl48]

No I'm 67 so retired but had to give up a busy voluntary role and can't even do housework or shopping ...did get a bit better but covid at Xmas sent me right down again . I was joining all the exercise groups with Critical Care Network now back at the starters class....it's a long journey . I hope you know you have to declare a seizure...can't drive after one ...if it's unprovoked like mine you get license back after a few months ...got mine back after 8 but still find driving too much

[Charl48 in reply to downthemoor]

Yes I have regarding car 🚗 I