What's happening to me?

[Lizziequink]

So many times I've read the posts on this site and felt thankful that the symptoms I have had seemed minimal compared to others suffering from AI. Last night changed my mind. My sleep lately has been disturbed and I've been waking up every hour or so, but last night when I woke I felt I wanted to be sick (no alcohol involved, I'd drunk the equivalent of a bottle of wine over the entire week). When I tried to get out of bed I started shaking uncontrollably and everything started spinning. Still felt sick but was only brining up white phlegm, nothing more. I couldn't stand without risking falling over and my legs just wouldn't hold me up. I was struggling to breathe and my husband had to keep telling me to breathe. I felt very hot, sweat was running down my head and face and according to my husband I was flushed in the face and round my neck.

He called for an ambulance and by the time it arrived, although I was still shaking, sweating and felt as if I was burning up, temperature, blood pressure and all the other tests they did were fine. They wanted to take me to hospital but by that time I'd started to feel a bit better so the ambulance men spoke to a doctor for advice and it was agreed that I should call an out of hours doctor if the symptoms happened again before I could see my GP.

No-one else in the family was ill and we'd all eaten the same things. and apart from sleeping till lunchtime today, whatever the problem was seems to have passed for the time being. Has anyone else experienced these symptoms? Liz

PS hope you've all had a good Christmas xx

[Hidden]

Oh Liz, I’m so sorry. You must have been terrified. I’ve had similar things, but not lately, luckily. Blacking out, a seizure once, a lot of the fever and chills. I don’t think I’ve had any dry heaves(?), but yes, very scary. Make sure to talk to your doctor even if you are feeling better now. Let your doctor know what you experienced.

[Lizziequink in reply to Hidden]

Thank you so much. I don't think I've ever felt so frightened. Really thought I was dying as I've had confusion, etc before but this felt more like some kind of fit. Still feeling a bit off but intend keeping a diary of experiences so I can feed them back to my GP. Very best wishes, Liz

[Hidden in reply to Lizziequink]

Liz, keep us updated please.

[Lizziequink in reply to Hidden]

I will. Many thanks for your advice & support, Liz

[Hidden in reply to Lizziequink]

Absolutely! You’re very welcome.

[NeuronerdDoaty]

(Sarcasm alert!) I just love the bizarre things my body likes to throw at me. Sometimes symptoms become common; sometimes I don’t see them again (yet). It’s just that kind of issue.

I’m sorry you had to go through that. I agree with Sue petal. Alcohol is really not good for most of us. It will enhance anything else your body is going to do. (Like other people’s rotten kids😁)

It seems there’s an issue here with the vagus nerve for some reason. I would definitely not leave any of those symptoms out while talking to your doctor.

Please take care and your husband gets an A+!

Sending you strength and peace

Doaty❤️

[Lizziequink in reply to NeuronerdDoaty]

Thanks for your advice regarding alcohol, Doaty . It's certainly not worth what happened the other night. I'm feeling much better this morning - joints a bit painful and ribs hurt from coughing up but I can handle the pain, its the confusion and vertigo that cause the biggest problems for me.

I'll pass on your A+ to my husband - he really is my rock. Best wishes, Liz x

[eekt]

I had vertigo aka labyrinthitis with similar effects and exactly the same feeling - 'what's happening to me?'...I've recently been told by ENT my hearing loss is due to lupus damage to the hearing nerve, so I'm guessing it was inflammation of something aural affecting my balance

It was extremely frightening - I was home alone and was wondering if it was a stroke - but by the time I saw a GP at 2pm, the symptoms had more or less gone. He prescribed an antipsychotic, for the nausea he said 😵 😎 (he thinks I'm making SLE up..) but I read the leaflet and that drug can induce lupus so I returned it the pharmacy unused

An experienced doctor might have linked it to SLE, phoned the rheumatologist, and prescribed a short burst of steroids

Clearly this is just my experience, but worth seeing ENT to have it checked out as there is a life-long version of labyrinthitis that can be slowed with appropriate medication, and also there's a research paper saying everyone with lupus should have a routine hearing test that can pick up vestibular inflammation damage at an early stage and likewise point to early treatment

Willing you well and hugs to you and your wonderful husband xxxx

[Lizziequink in reply to eekt]

Hi eekt, many thanks for your advice. I've been experiencing balance & dizziness issues since the beginning of the year and visual disturbance and confusion (a couple of episodes when I didn't know who or where I was and had no memory of what I'd been doing) and continuing lesser episodes. Unfortunately, despite my husband going with me to describe the confusion episodes, my rheumatologist refused to listen saying I'd not mentioned them before, totally discounting the fact that I hadn't seen him since September the previous year.

Having said all that, what happened the other night, apart from the dizziness, was different - more like a fit. Anyway, I've got an appointment with one of the GPs at our surgery that I trust on the 9th and will take a record of what's been happening.

Thanks again, and I've passed on your comments about my wonderful husband to him, much to his embarrassment, bless him xxxx

[eekt in reply to Lizziequink]

So glad the current episode has passed Lizziequink, but you definitely want those symptoms investigating since it's been going on for a while

Some rheumatologists are just pants 😵 and think of lupus as joints, rashes and pleurisy...last review I had, I asked him to go through SLEDIA after telling him I'd had a hearing teat that showed moderate-to-severe hearing loss, and <plonker alert> he just decided to put zero against cranial nerve involvement....I had thirty seconds for questions at the end of the appt, between him rising from his chair and showing me to the door, and I asked if my deafness could be SLE-related, so he referred me to ENT...hearing nerve damage due to SLE said ENT <doh emoji>

Please be well, willing the bestest outcome from your appt....and a husband like yours should be available on prescription xxxx

[Lizziequink in reply to eekt]

Again, thank you so much eekt. Love the <plonker alert> bit. I've a strong suspicion we could well be talking about the same rheumatologist At the end of my last appointment with him (when he wasn't prepared to listen) he said that it was obvious I wasn't happy seeing him and it might be better if I was referred to another specialist. Unfortunately when I saw the new guy he had a letter from the previous one outlining his thoughts and the whole appointment was focussed on what the previous guy thought. When I asked about the letter he was basing his diagnosis on, the new guy said I already had a copy of it since the letter indicated I'd been copied into it. Needless to say, I hadn't so didn't have the opportunity to challenge any of it. I even had to ask for them to do blood tests as the last one I'd had done for ESR had been in October and had shown they were 69 (normally mid 50s). Can't wait to find out what happens next !!!

[Lottie8 in reply to Lizziequink]

Interesting post Liz ziequink. I immediately thought of m y husband’s similar experiences. About 18 months ago he woke up with confusion and unawareness of where he was and what he should do. His memory was pretty hopeless but it gradually came back during the day. This happened again about 3 or4 times ....roughly a month apart. His GP took bloods and sent him to a TIA clinic and for a MRI of his brain. All clear.He then saw a Neurologist who diagnosed him with a fairly rare condition known as Transient epileptic amnesia .He was sent for an EEG which confirmed that he was having a small fit while he was asleep . He was given an epileptic drug which has prevented this from happening again.....touch wood. Unfortunately the DVLA took his driving licence away ( that didn’t go

down well !) even though this had only happened during sleep.

He gets his licence back in March..a year after he started the drug.

This may or may not help you but Good Luck !

[Lizziequink in reply to Lottie8]

Many thanks for that Lottie8. I'll certainly follow that up with my GP next week.

[Lizziequink]

Hi Sue_petal. You may well be right about alcohol. I drink so little of the stuff it's never had any effect in the past but I have decided that if that's what caused the episode it's just not worth it. Best wishes, Liz

[Gmagolf]

I know there’s a lot of weird things going around. Perhaps it was a 24 hour virus. I’m glad you’re feeling better.

[Lizziequink]

Hi Gmagolf. Thanks for that. I hope you're right and it was a virus that triggered and extreme episode of some of the stuff I've experienced in a smaller way in the past. Had a couple of 'wobbles' re balance today but generally feeling much better than yesterday x

[eekt]

Thanks Sue_petal, my GP described it as vertigo and labyrinthitis so I was none the wiser though he decided it wasn't viral after looking in my ears (which were blocked by wax - I can fill an ear with wax in a month?!?) and that was as far as investigations went

Before the appt, after I could see straight to go online, to check if I should go to A&E, a symptom checker came up with Meniere's and that's when I realised it was a balance disturbance...and I'm thinking since it came and went in the space of hours, it wasn't infection

If it happens again, I know to lie on my side till it goes away..(Meniere's takes more than once for a dx) xxx

[AimeeA]

It could be an inner ear disturbance. I once woke up terrible vertigo, spinning,nausea,weakness etc. There are tiny crystals in your inner ear that can dislodge and get into the wrong tube in your ear and cause this. You can Google vertigo and there are some movements you can do at home to get the crystals back in the right place and the problem instantly stops.

I still have this recur sometimes but do the half somersault maneuver and it fixes it. It's quite scary when you don't know what it is and could have triggered a panic attack. .I thought I was having a stroke!

Also, people with lupus should probably drink no wine at all due to being sensitive to sulfites which wine is full of. You could have had a delayed immune reaction to that wine over the course of a week. Google lupus and sulfites. You can have clear alcohol like vodka but not too much.. the additives in wine, beer, and non-clear alcohol can be murder on lupus patients.

[Lizziequink in reply to AimeeA]

Thanks AimeeA. I'll certainly look into that. Best wishes, Liz