Funny Turns: I do not know if anyone can help with... - LUPUS UK

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Funny Turns

CecilyParsley profile image
61 Replies

I do not know if anyone can help with this or whether it has anything to do with my autoimmune conditions. I have had a really bad head cold for over three weeks and I am still streaming snot. On Sunday I was watching tv and suddenly felt giddy, made worse when I closed my eyes. I had a numb feeling on one side ( left) of my head . When I tried to stand up it was as if I was drunk and I lurched to the left. My husband helped me to the loo and I nearly dragged him over several times. This lasted about two hours and left me with a headache. Since then I have had three short spells of giddiness when I go deathly white. I have just shrugged it off as another strange part of my condition but my husband and friends are very worried. Some say it looks like migraine? others say TIA. I tried to make an appointment with my GP and there are no available appointments until 30th March so I did not bother. Any advice would be gratefully received. I am concerned that this will be put down to hysteria but honestly my fatigue is so bad I do not have the energy to be hysterical lol

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CecilyParsley profile image
CecilyParsley
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61 Replies
KayHimm profile image
KayHimm

Cecily - these are really scary symptoms. I have a feeling they are in the category of hard to know without certain tests. TIAs and migraines can look alike. The place to go is the A & E, not your doctor’s office. Since it was a few days ago, can you call an emergency number for advice?

Do you have anti-phospholipid antibodies?

Best of luck.

K

CecilyParsley profile image
CecilyParsley in reply to KayHimm

Thank you for responding. I just shrugged it off on Sunday as I had cooked a dinner and with this damned awful fatigue since I came off the Hydroxychloroquine I can barely function so I thought I had overdone it. It did scare me because I was lurching badly to my left and felt as if I could not feel my feet on the floor if that makes sense? The subsequent episodes have been less dramatic and lasted from five minutes to about fifteen minutes. I feel giddy, lose my balance, my head feels heavy then it’s gone. Yes I was diagnosed with APS in 2009 and take 75 mg aspirin daily. I have promised my husband that I will go to the emergency GP on Monday as I really cannot face sitting for hours in A&E.

KayHimm profile image
KayHimm in reply to CecilyParsley

If you have APS, you should go to A & E with any symptoms like numbness. Please ask your GP for clear instructions.

K

Roarah profile image
Roarah

It could be a few things so you should see an urgent care doctor if possible. Bppv, happens when an ear crystal dislodges and lands in a spot that causes nystagmus usually if you roll over in bed, quickly look up to the left or right or bend to tie shoes. A doctor can fix it with an eply maneuver. After a virus labrynth is another likely culprit. Most vertigo causes, although a major PITA are benign but a few serious issues like stroke, tumor and ms need to be ruled out aswell. Try to see a doctor.

Xo

CecilyParsley profile image
CecilyParsley in reply to Roarah

Thank you. I have looked this up and part of it makes sense and fits the smaller episodes which last a few minutes and have all been triggered by getting out of the chair or the car but the two hour one on Sunday was just so different. The only similarities are the giddiness and the going white as a sheet. Isn’t it dreadful that you get so anxious about seeing a GP about anything in case they consider you a hypochondriac? I do anyway 😞

Roarah profile image
Roarah in reply to CecilyParsley

Do you have tinnitus and any hearing issues with this. The two hour episode can possibly be Meneire's. Regardless a visit to a GP or a referral to an ENT is warranted.

Do not worry what a doctor thinks of you most are very busy, have many patients and are knowledgeable enough to know that even the patients with a diagnosis of health anxiety are not to blame for it is a medical ailment just like lupus....Also statistically many doctors actually suffer from health anxiety themselves so no biggie if they think we have it.

CecilyParsley profile image
CecilyParsley in reply to Roarah

I do suffer with tinnitus intermittently but not with these episodes. No sounds, no floaters just the feeling of giddiness and headache. No nausea either. It is very strange. I just wondered if it is due to the mucus from the head cold that just will not go?

Roarah profile image
Roarah in reply to CecilyParsley

do you have non emergency urgent care available, I think it is best to just let a doctor check you out and they can offer treatment for your symptoms perhaps. Xo

CecilyParsley profile image
CecilyParsley in reply to Roarah

Sadly not. I can wait to see a locum on 30 th March or ring at 8 am on Monday and sit in the surgery until a GP becomes available. The nearest A&E is 15 miles away and last time I was there I waited six hours. We have a minor injuries unit 6 miles away but honestly if it is not an injury they won’t see you so I will wait until Monday unless I get a bad one again in which case A& E it is. Thank you

PMRpro profile image
PMRpro

Next time it happens - 999 immediately. The other word at the GP is EMERGENCY - when they must see you same day.

If it is a TIA it is a warning - and that MUST be ruled out. It could be BPPV - benign postural positional veritgo - and that can be treated. But the Mayo says (to save me all the typing):

Generally, see your doctor if you experience any recurrent, sudden, severe, or prolonged and unexplained dizziness or vertigo.

Get emergency medical care if you experience new, severe dizziness or vertigo along with any of the following:

Sudden, severe headache

Chest pain

Difficulty breathing

Numbness or paralysis of arms or legs

Fainting

Double vision

Rapid or irregular heartbeat

Confusion or slurred speech

Stumbling or difficulty walking

Ongoing vomiting

Seizures

A sudden change in hearing

Facial numbness or weakness

And by my understanding you have ticked a few of those boxes.

KayHimm profile image
KayHimm in reply to PMRpro

Thanks for posting!

CecilyParsley profile image
CecilyParsley

Yes definitely on Sunday I was completely unable to control the lurching to the side, my head and face on one side down to my nose felt numb yet I could feel myself touching it so not totally numb, my heart was lurching too..I forgot that bit..it felt like you experience on a rollercoaster that sort of lurch yet I was upright, I was not confused but felt as if I were going to faint.My headache afterwards was on the top of my head , not severe but like someone was pressing down on my head. It sounds very bizarre I know. I intend on requesting an emergency appointment on Monday thank you so much

I had similar symptoms before I lost my hearing. My GP at the time said labyrinthitis but it was something more severe. You really must get it checked out.

I didn't act soon enough or seriously enough. Listen to what others are saying. It is with good reason.

CecilyParsley profile image
CecilyParsley

Thanks Lou. God I am so utterly sick of myself at the moment. Who would choose a life like this? There is always something 😞 xxx

CecilyParsley profile image
CecilyParsley

Oh I am so very sorry that you lost your hearing. What caused it?

overnighthearingloss profile image
overnighthearingloss in reply to CecilyParsley

I had had perfect hearing in both ears.i had never in my life suffered with any kind of ear infections.

On this occasion I had a bad cold but was just dealing with it as any other. I went to bed one night hearing perfectly and when I woke the next morning I couldn't get up initially due to extreme vertigo. I had never experienced anything similar before.

Walking to the bathroom I had both hands bracing me on the corridor walls but still had extreme difficulty. It didn't matter if I was standing sitting or lying down. Everything was spinning. A bit later a very loud buzzing started in my ear. A while later that stopped and as I now know, that was when my hearing stopped in one ear.

I have sensorineural hearing loss. They have never identified exactly what caused it. But in some people it can be reversed with urgent intervention.

I didn't take it seriously enough and didn't act quickly enough on advice given to me.

It does seem like an enormous hassle at the time but you really must get yourself checked.

CecilyParsley profile image
CecilyParsley

Hug gratefully received Lou and big Cwtches to you xxx

CecilyParsley profile image
CecilyParsley

What a terrible experience for you. I really can identify with the cold and the having to brace yourself to stand. I was clinging to the door frame with both hands as everything was swimming. I am so very sorry that your hearing was so badly affected. Do they think it will return ever?

overnighthearingloss profile image
overnighthearingloss in reply to CecilyParsley

The prognosis is that it is permanent. It happened over nine years ago.

Please take note. If you are suffering anything similar timely intervention can make a difference.

CecilyParsley profile image
CecilyParsley

Thank you

MEGS53 profile image
MEGS53 in reply to CecilyParsley

Take care, CP. And pleeese make sure you see a Dr on Monday - at the latest! Sending hugs, xxx

CecilyParsley profile image
CecilyParsley in reply to MEGS53

Thank you I will do xxx

Forgot2mention profile image
Forgot2mention

Sorry, but that is outrageous that you have to wait until the end of march for a doc’s appointment. A&E seems like your best option. Good luck, hope you get sorted soon. Best wishes 👍

CecilyParsley profile image
CecilyParsley

I know and even then I can no longer choose which GP I see. My GP for the past seven years knows everything about me so I do not have to explain. I saw her a few weeks ago for the first time in over a year. The relief was immense as before that I had seen seven doctors who had never seen me, had not read my notes etc. It is not their fault they are overstretched and stressed out as it is but there should be an opportunity for people like us to see someone who knows us well.Thank you

overnighthearingloss profile image
overnighthearingloss in reply to CecilyParsley

I think a&e is perfectly valid at this time. Think about what possible procedures the doctor might want and he/she won't do those at the GP practice anyway.

As another said. Mention the APS. I was being treated for it at the time of my hearing loss

Roarah profile image
Roarah

What do you do if you have strep throat, bronchitis or sinus infection. The GP should be able to schedule you in for an acute care non emergency appt. if they can please do it.

If you have another attack go straight to the ER for suspected stroke patients never need to wait. Tell the triage you have a clotting disorder and you are worried about a stroke. If it is an acute attack you should be seen immediately for scanning but if they rule out stroke then you might wait before release but you will most likely already have a cot instead of a chair :). They act fast for stroke for the window opportunity for TPA is less then four hours.

CecilyParsley profile image
CecilyParsley

I can honestly say that I have been made to attend the surgery when I had Norovirus even. I had to use sanitary towels strapped to my bum I kid you not. The GP had a hissy fit. Public health were alerted. I told them my symptoms but they had insisted I attend. I have been asked to attend and wait when I had pleurisy in both lungs. I sat for two hours waiting to be seen. There seems to be no quick route to the GP these days. It is woefully inadequate and I do not blame the GP’s themselves it is the drastic underfunding and overwork. They actually turned me away twice when I wanted advice regarding the fluid on my maculars. I could not get past the receptionist who said we don’t deal with eyes. It is beyond frustrating.

Sekka profile image
Sekka

Oh dear! Please make the appt as this needs looking into even if you improve in the meantime! It could be the cold or flu you have but TIA could still be a possibility. Take care!

CecilyParsley profile image
CecilyParsley in reply to Sekka

Thank you so much Sekka ❤️

miccika1 profile image
miccika1

If you are still congested this might be due to inner ear issue. Where you blowing your nose a lot or with force? When congested we should not forscefully blow the nose as it can damage inner ear and cause fainting, nausea and vertigo. Make sure your sinuses are clear by using fluconasole and not blowing nose forcefully.

CecilyParsley profile image
CecilyParsley in reply to miccika1

No my nose is streaming all the time, it has been for over three weeks. I do not blow my nose forcibly because it triggers my tinnitus. I think it is entirely feasible that the cold has something to do with these episodes though thank you.

miccika1 profile image
miccika1 in reply to CecilyParsley

Maybe go to emergency. If it is something neurological it should be checked asap

Forgot2mention profile image
Forgot2mention

Omg, where do you live? The gp surgery i go to have a policy where between 8 am and 10.30 they see patients who have appointments, between 10.30 and 1 pm they see people who have rung that morning and then after 1 they see patients who have normal appointments,they also stay open until 8 pm for people to go after work. Seems a lot of people on here don’t have very good doctors. I suffer with gallstones at the moment, when they started i just turned up at the doc’s and was seen straight away. So sorry a lot of you are having to wait and suffer. Hope you get seen soon 😏😏

CecilyParsley profile image
CecilyParsley in reply to Forgot2mention

South Wales. In fairness my GP surgery used to be one of the best but now it is cut to the bone. I used to have a double appointment once every month with my GP to keep on top of things, initiated by her as she recognised that the usual ten minute slot in an emergency would not suffice. Now there are no double or routine appointments sadly.

Carole-J profile image
Carole-J

I have APS and I have similar episodes. I was told they were TIA's but now I have been diagnosed with hemaplegic migraines. You do need to get whatever it is diagnosed properly it's so important then you can get the correct treatment. Take care x

KayHimm profile image
KayHimm in reply to Carole-J

Carole-J - Very much agree with you. With APS this is critical. I do not have APS but am aPL positive. I have had strange neuro symptoms for years. It is interesting to hear our similarities in the difficulty knowing whether we are having TIAs or migraines. People don’t think of migraines as having such varied symptoms, right?

Hope you are doing well. Does the medication help your hemiplegiac migraines? Those sound very scary.

K

Carole-J profile image
Carole-J in reply to KayHimm

Hi I see a neurologist at St. Thomas' Hospital in London who is brilliant and I am very grateful to be one of his patients. I have several Autoimmune disorders and it has taken a long time to get where I am now. I have also got a good Rheumatologist and Renal doctor so I am being looked after pretty good now. Hope you are getting the help you need also. Regards and good health Carole

KayHimm profile image
KayHimm in reply to Carole-J

Terrific, Carole! Message me if you want to share neuro experiences.

Good health to you!

K

CecilyParsley profile image
CecilyParsley in reply to Carole-J

Thank you Carole, funnily enough my friend in Scotland said you are having migraines but I dismissed it as I equate migraine with severe headaches. I will definitely mention this to my GP and Google it now xx

KayHimm profile image
KayHimm in reply to CecilyParsley

Cecily - I really don’t think a GP will be comfortable diagnosing this. If you have any more of these symptoms, I bet he will send you to a neurologist. As a couple of us here have said, even for them it is hard to distinguish between migraine and TIA. But this is not something to be taken lightly.

XK

CecilyParsley profile image
CecilyParsley in reply to KayHimm

Yes I have not seen a neurologist for many years and I think I need to be looked at. At least my GP can do the referral for me

Carole-J profile image
Carole-J

My migraines leave me with a left side droop in my mouth and my speech slurred, just like having a stroke, headaches before this and feeling very tired afterwards. Feel well soon and good luck for the future x

CecilyParsley profile image
CecilyParsley in reply to Carole-J

I had nothing like that just a numbness down my left side of my forehead and cheek. Thank you so much Carole. I hope that your migraines are under control now. It is quite scary to not feel in control xx

Bake34 profile image
Bake34

I would definately go to your doctor to be checked out for your own peace of mind

CecilyParsley profile image
CecilyParsley in reply to Bake34

Thank you yes I will go on Monday

Carole-J profile image
Carole-J

I still have them regularly but now I know what they are it's fine. Hope you get good results when you see your GP x

CecilyParsley profile image
CecilyParsley in reply to Carole-J

Thank you Carole. I googled it and read it to my husband and he agreed that it sounded exactly how I was last week. I really appreciate you telling me about this and hopefully my GP will act promptly xx

GERY profile image
GERY

Hi there I don't know if this will help, I am a 77 year old lady & before Christmas I was very tired but put it down to Lupus fatigue but earlier this month I woke up & couldn't breathe, taken to hospital where they diagnosed mild heart attack so please go to A & E. Hope you feel better soon

CecilyParsley profile image
CecilyParsley in reply to GERY

Thank you ? I really hope that you are recovering now? It must have been very scary for you? I know we put so much down to our illness and a lack of interest and active investigation makes it more difficult to ask for help at times.

CecilyParsley, I know this is all very scary and it may seem easier to put it off till later.

But be realistic. What can the GP do here?At most a referral which is more wasted time.

Why don't you at least call 111 or the emergency line and take advice from there.

We are all rooting for you.

CecilyParsley profile image
CecilyParsley

Thank you so much

Olderkitten profile image
Olderkitten

Cecily, what happened sounds serious and you should have gone to the hospital immediately. It could be a TIA and the sooner you get help the better off you'll be. So be bothered and get help!

CecilyParsley profile image
CecilyParsley

I rang the surgery yesterday and explained what had happened on three occasions. They have given me an appointment to see one of the senior GP’s at 9 am tomorrow.

Krazykat26 profile image
Krazykat26 in reply to CecilyParsley

That's great news CP 🤗

I hope that all goes well at the appt..this definitely needs to be investigated 🤗

Let us know how it goes

😽😽Xx

CecilyParsley profile image
CecilyParsley in reply to Krazykat26

Thank you so much. I have my list of symptoms and dates of the turns etc. I almost feel sorry for the doctor lol xx

Krazykat26 profile image
Krazykat26 in reply to CecilyParsley

Why feel sorry for doc? It's his job!! Glad to hear you're prepped for the appt...9ams always a bit of a tricky time for me..so best of luck n hope u get somewhere!! 🤗🤗😽😽Xx

CecilyParsley profile image
CecilyParsley in reply to Krazykat26

I suppose because it is not just one thing. The funny turns, the genital ulceration, the cold that won’t go, I am in week four now, the UTI is back, night sweats, diarrheoa, the high calcium and low cholesterol, the fatigue is debilitating. 9 am is impossible for me. I am zombified in the mornings. This recent fatigue is so bad that I am not waking until 1 pm most days. How the hell can he deal with all that in just ten minutes? 😞I wish I could be positive and hopeful but I feel beaten before I start xx

Krazykat26 profile image
Krazykat26 in reply to CecilyParsley

Ok so you've got 10 mins..make those minutes count..you've had the funny turns ..try to focus on that tmra.. you're gonna have to get up early..but you're prepped..n u can do this 🤝🤝

Hope you've got someone to go with u

You're seeing a senior GP..presumably with some experience.

PMT =positive mental thinking..please don't let this overwhelm u..when u were learning to walk..it's the small steps that count..it doesn't matter how slowly u move forward..as long as u keep going!!

😽😽Xx

CecilyParsley profile image
CecilyParsley

Yes my hubby is going with me. The GP I am seeing was the one who 11 years ago said Julia you are not going mad or a hypochondriac I think you might have Lupus or Limes Disease. I have only seen him twice since. Last time he diagnosed TMJD. I am not a negative person by nature but I just cannot pick myself up. I do not bother doctors normally I get on with things but I need some help and I just hope I get it. Thank you Kat xx

Krazykat26 profile image
Krazykat26 in reply to CecilyParsley

Oh well that's a positive in itself I reckon..a GP who believed your symptoms at the start..n now you're seeing the same guy! Glad that hubby's going with u 🤝🤝

I'm the same..I stay away from docs..maybe it's your social work background? 🤔

Here's a spoon from me..to help u get to that appointment 🥄 🥄 😽😽xx

CecilyParsley profile image
CecilyParsley in reply to Krazykat26

Yes indeed. My own GP just was stumped as to what was wrong with me and asked if I minded seeing him. I usually avoid seeing him because he can be extremely curt and that makes me uncomfortable but there is no doubt that he is knowledgeable so I really hope that he can help. If one of my symptoms is made better it will help no end xx

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