I experienced a very severe pain at the back of my skull, accompanied by extreme dizziness that made me sink to my knees. My husband took my blood pressure and it was very high systolic and moderately high diastolic. My pulse was 53. My diagnosis is currently GCA/LVV. We contacted my GP for advice and he strongly urged me to go to A& E as he believed that my symptoms could indicate a brain bleed. He felt that Vasculitis was a risk factor for this a fact later disputed by the hospital consultant. We waited in A&E for over 3 hours before entering the first stage of the process. After checks I was sent for a head CCT scan. This was thankfully normal. I was subsequently checked for a GCA flare with bloods and questioning and physical examination as well as neurological tests.. A lot of repetition and being left in corridors with no explanation. All test results had to be waited for. It was a very small A&E and very busy. Elderly people in wheelchairs waiting forlornly for taxis that never seemed to come ( my self appointed job in the end). People with substance abuse problems for whom A& E seemed to be a regular part of their existence. Boys handcuffed to police officers. People frankly coughing into the general atmosphere - unmasked. Weary overwhelmed staff doing their very best under impossible circumstances. I eventually got away at 9.30 having arrived at 2.30pm. Nothing conclusive having been found. I felt lucky we had the NHS and appalled that it was Unser Siege in this way with a relentless stream of people - many who couldn’t access their GPS face to face. Be prepared if you have to go - food, drink, something to read, mask etc patience and compassion.
7 hours in A&E.: I experienced a very severe pain... - PMRGCAuk
7 hours in A&E.
Glad your CCT scan was normal. I have been to the ER a couple of times this year due to high BP. I am usually in the high 90’s to around 115. I was having spells of high BP which would bring on a headache and I just felt bad. When my thyroid meds were adjusted I stopped having these spells. They usually keep me in the hospital for 24 hrs. Due to my heart issues. I also have GCA and LLV and my rheumatologist has me on Actemra and my cardiologist added Praluent to help my arteries. I also take heart meds for AFib. I hope you feel better.
Thank you. I think my BP was 189/90 at one point. I had my Actemra injection yesterday. I also take 125 mms of Levothyroxine and 8 mgs of Pred. The Graves’ disease was diagnosed in the 80’s maybe it needs some scrutiny.
My thyroid has been off for almost two years. I get blood about every month. We kept playing with the doses and we finally got it right. The thyroid is a tricky thing.
It is. I tend to forget about it because it’s been there for almost 40 years but these diseases may well impact on it.
Hi there. So sorry to hear of your truly awful experience. What an absolute nightmare and very scary for you too I imagine. It's quite daunting when these unexpected situations hit us out of the blue and without warning! Thank goodness your scan was clear though and hopefully whatever brought about the onset of your symptoms is now improving.
The description of your experience at A&E is really quite worrying and a timely reminder of just how serious the whole situation in the NHS still is. It's a service clearly struggling and 'exhausted' in every way.
Rest up Jane......no more marathons, bungee jumping or sumo wrestling for a while!!
😂 Take it easy and fingers crossed for a speedy recovery.
It comes to something when that for me was a day out. I met some really remarkable people.
What a horrid experience Jane.😒
You have been through it lately, haven't you? I hate waiting 1/2 hour in hospital corridors.
Hope things settle down very quickly and you get the help you need.
💐🍀🍀
So sorry about your frightening ordeal but very glad that you are home safe now.
I'm so glad you're ok but what an ordeal.
A&E sounds utterly broken across the country. Too busy and tired staff. It's not a good place to be.
And it was absolutely empty last year during lockdown.
It was clear that a group of people used it as a recreational place to meet their mates. They were all in such a mess they couldn’t really be challenged. No homes to go to etc.
It sounds like A&E before Covid!! I don’t understand people going there rather than seeing their GPs. I think you are right people go there for a social get together as well.
And it is a warm place with seating you can lie on ...
Not enough seating. Half the chairs had a big Red Cross. People were standing with injured feet. The streetwise found wheelchairs, to sleep off the crack. It was really chaotic.
I think I'd rather be in prison! There, at least, you get a warm bed and food.
I can't believe what I am reading! "Social get together"!?! Whatever has happened to the once famous NHS?
Strangled by appalling funding and management decisions - but that isn't all recent.
Such a pity isn't it (for want of different words)? Whatever can be done (if ever)? There never will be enough funding to bring back a really good, working, system I fear.
It will have to be different -but everywhere has similar problems, not least due to an aging population and increased demand with an aging workforce and retirement ...
Should never have gone beyond the "three score years and ten". Still, even if it hadn't there would be no answer because of all the poor people who have to migrate for safety.
I hope I haven’t depressed everybody. I just wanted to remind you to take a flask and a book if you ever have to go there.
What do you recommend putting in the flask? ( asking for a friend)
😄 tea of course!
There is a machine in our A&E for when the cafe is closed - luckily the coffee it dispenses is drinkable. Espresso is particularly popular - I assume to keep people awake ... Not that the waits here are that bad except in skiing season 
I only meant, what kind of tea, Jane…
In the UK it was probably builders tea - that's what I'd have had
Yorkshire tea of course!
😊… as long as it helps you get well and stay well Miss Jane of Sheffield…
You know, you can take a leaf from the Las Vegas book … and say what happens in Sheffield stays in Sheffield. Our secret. At least that’s what some of the poor souls there the other night are saying by the sound of it… very sad.
I do really like your great attitude though. You do meet amazing people wherever you go- tells me a lot about what kind of person you are- a life long learner. Compassionate. Patient. And very interesting I think!
I’m very interested in and grateful to learn about occipital neuralgia. This will come in useful on our ( my) primary forum for APS. This happens from time to time in our world. ( and can get mistaken for a brain bleed due to our anticoagulants.)
Thanks for sharing.
There are so many things we haven’t heard of until we get them. I love your attitude too. I looked up APS. Quite a challenge, for you! 🌼
But it WAS depressing Jane , but unbelievably true. It had to be said! The medics/nurses/other staff all work so hard and so well, and yet have to deal with this as well. What is the world coming to??
Oh Jane what a truly awful day for you….must have been very worrying initially, followed by frustration, resignation and realisation at how overwhelmed the NHS is at the moment.
Glad that it didn't turn out to be what GP thought, but as you say maybe need to re-evaluate other health issues.
Hope you can have a restful day today, take care 🌸
What a horror story! I'm so glad your scan was clear: such a big relief for you. I'm sure you will be taking things easy for a few days after that scary experience.As for the NHS, nobody can justifiably say that it isn't under great pressure and I could go on about that having my own strong opinion. Sure, some people abuse it which makes things extremely difficult for people who need to be seen quickly but the staff are worth their weight in gold.
I'm horrified that mask-wearing wasn't adhered to by some attendees!
Take care, Jane. Allow yourself to be waited on for a couple of days. 💕
Hi, Wow poor you, it sounds horrendous. I hope you feel better soon and glad that scan was ok, I’ve had a couple of those and they are not very nice.
It’s terrible that gp’s are not seeing patients now as this is causing them to go to A/E, it’s really out of order, I don’t blame the patients I blame the gp’s, they really should go back to some sort of normality now, my doctors used to have a full working day at the surgery mostly Monday to Friday, now I’ve noticed they only come in twice a week and not only see the odd patient (if you are lucky) and then the rest of the time is taken up with phone consultations.
Still very odd regarding your head pain, maybe your doctor could follow this up ? Ha ha ha (as if )
Take care and keep an eye on things.
Sending you a big hug
😍💐
Oh dear. I had more or less the same experience a few years back. Drunks, druggies and loud mouthed scum insulting the staff. It was quite sad and annoying. We had taxi cabs back then though
I was diagnosed with viral meningitis which I thought was just a headache. I ended up in a single room (yippee) and everyone wore masks when they came to my room! A sign of things to come?
I honestly wish people would respect and behave when in A and E it's quite disgraceful. I know all about "rights" and such but hope that these "troubled" people could be moved to another place in the hospital where they could be treated a bit more unkindly.
The staff side: my daughter is now a fully qualified Advanced Care Practitioner as of yesterday - first day flying solo. There was her plus one consultant and one doctor for the whole of the EAU (emergency assessment unit) so she was on her own in the bit that gives i.v. antibiotics and reviews things like DVTs and other ongoing problems that need monitoring. The EAU was chocca with patients from ED - basically an area with chairs to carry on investigating patients threatening to breach the 4 hour deadline when there are no beds available ....
And at the weekend my grandson (her son) was working in A&E and assaulted - enough for police to be involved.
My last visit to A&E was a lovely Friday afternoon in August 2019 after I fell and gashed my leg open. The staff and treatment were exemplary, but I was disgusted by a couple of toerags brought in by the police, who insulted the staff repeatedly, frightened some small children and loudly accused the police of assaulting them. Apparently they'd been fighting to the death earlier, but they became allies once arrested.
Give them both a big hug from me. My respect is boundless. I am scared that people will cease to see this as an aspirational job, then where will we be? PMRPro not Marijo 1951 obvs. X
There are people who'd want it for Marijo's pair too.
Eeps! Horrible experience for you. Glad you’re out the other side without a new diagnosis to add to the collection. Honestly it’s like we all need a trophy shelf or something doesn’t it? Some sort of transient vascular spasm in the occipital region??
My father-in-law was blue lighted to hospital in the early hours recently and he had to wait hours in the ambulance and didn’t get onto a permanent ward for nearly two days. I accepted him him home in a far from stable state a week later because I knew they were desperate and certainly the Physio and OT criteria for “ok to go home” were a bit flimsy! In the olden days they would go to rehab with a kitchen and stairs to properly get home fit. Seems like that’s an extravagance but I wonder how much it’s just a revolving door with some patients, but as with all preventative care, it’s not instantly measurable.
I hope it all stays as a one off.
It's a battle I have waged here too - no OT and PT assessment for discharge and OH was returned as faulty twice after a fall last year. Then came Covid and no physio after a fractured vertebra so got even wobblier. More recently the medical ward did nothing about the Hb of 7.8 nor lack of appetite (weight down to 40kg). Getting him into the palliative care unit in the regional capital achieved a miracle in 24 hours - a moderate dose of steroids and a pint of blood made him feel like a person again (I quote) and able to start some rehab physio , now eating 3 meals a day and strong enough to walk into the village at the weekend. The appetite is the dexamethasone, no question, but without it he wouldn't be mobilising this well. The last year has been "interesting" - far more so than it need have been had a bit of preventative care been indulged in. Think we have the right team now though. But all the medical team were interested in , repeatedly, was sending him home to me without seeking the reason he was falling. "He was dehydrated - we gave him fluids" isn't enough.
He is so fortunate to have such a capable wife. Your stress levels must be through the roof at times.
It was certainly frustrating and when he wasn't sleeping it was truly awful. Biggest problem now is that, for the first time in 50 years together, he wants 3 meals a day!!!!!! And you can imagine what would happen to me if I ate that much!!!!!
I would be vicariously enjoying his wholesome meals.
I do taste the odd bit
Just to encourage him, I quite understand. 😉
I’m glad that you were thoroughly assessed and nothing nasty was found, but, like you, I never like to have a mysterious event, I feel the need to get to the bottom of it. I hope you can find some clarity at some point. Meanwhile, get some rest!
I'm so sorry to read of all this Jane, but glad to hear that there doesn't seem anything too sinister going on. I presume that when you can, you will talk to your GP about the episode of high blood pressure?
When I broke my arm last year, a young male came into the X-Ray department accompanied by two female police officers. All three stood around chatting as if at a nightclub.....!
Take it easy for a while (as if we ever do anything else!) 💐
Bring back Dixon of Dock Green 😂.
with his truncheon
met him when a child and still have his autograph somewhere.
I always found him very reassuring.
On screen seemed so, avuncular and dependable. But I recall distinctly that I felt he was rather full of his own importance, a childs impression and I have a good memory for such. He was at the height of his popularity then. Nothing like the no-body 15minute "celebrities" we see these days though. All so in love with themselves and nothing between the ears.
Children have an instinct for these things, everybody I was wary of turned out to be rotten from Saville upwards. As for the feminism we fought for - what happened?
So sorry that you had to go through this, sending you very best wishes and hope you have a more peaceful and relaxing day today. Just glad for you that tests proved all was well. Please take care and be kind to yourself.
It must have been a relief to know it wasn't a bleed on the brain, but did the hospital docs say what could have caused the high BP and dizziness? Side effects of meds, for example? Did they recommend any further tests, or is that down to your GP? I can see that a visit to A&E is still not for the faint hearted.
Nope. Just to look out for a return of symptoms or seizures that sort of thing.
agree with pinks33. Would be reassuring to know why. hope all stays stable. I had a brain scan and they told me I had had a small bleed but it was ok. nothing to worry about. You do though don't you, whatever they say. I was slightly taken aback by the comment on white areas, small which they said were dead but minimal and normal for my age!!! nothing to be concerned about. What is normal? We are all very distinctly different and our expectations differ vastly. What may seem normal for one is truly awful for another. There is no such thing as normal...average YES but normal NO. I hope you do resolve this at some stage.
My mum had frontal lobe dementia, visible on a scan. I hope this means I haven’t inherited it. She was my age thereabouts.
Try not to worry and always be positive. i really think that this and staying as physically active as possible is a good defense. There are no guarantees in life save that something unexpected will pop up when least wanted. I am not afraid of dying per se but I do dread the thought that I could lose everything lodged between my ears. I think that may be a common fear we all share. A lifetimes knowledge and experience with numerous interests and activities . To lose this and be occasionally sufficiently lucid enough to appreciate the loss would break me. I try to stay engaged with life and events and keep active mentally and physically. The rest is up to luck, circumstance, healthy living and good genes, the same for all of us. Fingers crossed I didn't draw the short straw.
What a dreadful and worrying time for you Jane. Hope you’re feeling better now. Poor NHS … having to cope with so much with little investment or resources. It is quite frightening. I had a nerve decompression operation over a week ago and the anaesthetist told me they were so exhausted and drained, not sure they could carry on much longer. I felt for them and could see how tired they all were.
Apparently the Royal Derby hospital have now stopped all surgical procedures because of the high increase in Covid cases …. So was lucky to have had my operation. Not sure when I will have the decompression on right arm now.
Best wishes to you. xx
I have just heard JVT telling us that the vaccine programme is the most successful in the world - so why does Italy have new cases at a fifth of the level in the UK and while our hospitals are working hard it isn't just on Covid and ICUs are at low levels of occupancy? It could well get worse but at the moment it is OK. I hear different stories - and I thought JVT was better than that.
I really don’t know why this is happening… Many people have been on holiday during the summer, on beaches here and even went abroad. I find this disturbing although I understand people are fed up of being stopped from “living their normal lives”. I have also noticed most people don’t wear masks in supermarkets, shops, etc. I don’t go out that much but have too at times. Always wearing my mask and washing my hands thoroughly on return. Perhaps people behave more responsibly in Italy? My daughter is a teacher and told me yesterday that she was given directives to read, stating that from now on if there is a Covid outbreak in a pupil’s family it won’t be necessary for anyone to isolate! Therefore the children can come to school (if a parent/guardian has Covid) as normal. This is totally irresponsible from the so-called government! Perhaps the Italian government is more sensible? Meanwhile the virus will carry on spreading… We’re not safe.
Masks are still de rigeur, especially in shops. Not technically required outdoors unless in a crowd but lots of our locals are still wearing them - and most are using FFP2 masks still. You have to have a EU Green Pass to eat inside at a restaurant and for most other activities - until recently you could get a temporary pass for 48 hours with a negative lateral flow test. I saw a woman getting a PCR test outside our pharmacy yesterday with the pharmacist all dogged up in mask, visor, gloves - she then walked off along the road so I hope she was going to be isolating until she got the result! We are getting single cases every few weeks in the village - most cases here are down in the regional capital and surrounding large villages/small towns. I'd like to think it will calm down here again as most tourists will go home next week - will be later further south but their figures are lower than ours, presumably because the vaccination rate here is lagging behind, and we are borderline for becoming a "yellow" region instead of "white". And school went back here last week, this week everywhere else.
It’s obvious they are taking the situation more responsibly where you live and in Italy generally. My daughter returned to teaching two weeks ago and she and her colleagues are most worried and stressed by this lack of care.
Ireland was stricter than the U.K. and perfectly sensible about it.
If you are sensible it isn't much of an imposition is it?
Not at all.
I am not allowed to say what I think here. $$$$headlines####***
I’m in your club😉. Hope you’re recovering from your horrible experience.
So sorry to hear of your ordeal, Jane. I’m pleased nothing awful was found and hope you are resting up today. Sending gentle hugs x
Thank goodness for the clear results but wonder what caused that to happen? So scary it is at the time. Hope your feeling better now.
I too had a 7 hour unplanned visit to A&E recently but didn’t have to experience the long wait with local entertainment you had!
With hindsight I can say I was ‘lucky’ to be having chest pain so was fast tracked. I wasn’t having a heart attack but didn’t know until all results were back. I was diagnosed with severe acid reflux that I didn’t know I had - all caused by Omeprazole the wonderful stomach protector that’s left me with gastritis.
Take it easy . 🌺
Having googled my symptoms Occipital Neuralgia seems to fit perfectly, even the nausea room spinning, ear pain and tooth pain. It can be associated with the cervical Spondylosis I have and possibly the hours of driving we did to and from Holyhead and in Ireland, even though I slept with an aircraft neck support. The University lecturer whom I befriended was frightened all day that he’d had a heart attack but his turned out to be a chest infection. I am glad yours was the lesser thing. Bizarre that it is caused by the preventive medicine we are all automatically prescribed.That would be the same A&E, isn’t it a dump? Also it is far too small.
Very often people say the treatment is worse than the disease.....but without the treatment we might die!....When a nurse ask me before PET scan what meds I was on, I replied only steroids......she said all meds are poison!....to which I replied, poison can ease things and keep us alive.....I hope she doesn't worry patients with that statement....
A strange profession to choose. Continual conflict.
My hubby had very similar symptoms to you over 20 years ago and they couldn’t diagnose the problem at the time either. He does have cervical spondylosis but that wasn’t blamed.
Don’t think it was linked but much later on he got pain in his jaw and diagnosis was trigeminal neuralgia. He’s still on treatment for that. To this day he says it was the worst pain ever - worse than his heart attack.
I was astounded to be told what the cause of my problem was. So now on another tablet plus a change of PPI and Gaviscon advance with every meal and before bed. I’ve had a swallowing problem too where I nearly choked to death, and that’s not exaggerating and all linked apparently.
The neck support might have held you in a position that your neck didn’t like, I know they give me a headache. You can only be vigilant but perhaps a discussion with your GP is needed.
I was warned off going to Leeds St James for all the reasons you experienced.
Went to one of the smaller hospitals as we’re pretty central to them all here. Seem to be the only outings we get these days.
I don't agree and truly believe troublesome patients (yes even people like me with a mental health problem) should be taken to a separate location where they don't upset decent people with sick children and people at the end of life who need to go in peace. People with mental health problems get seperated from other patients on wards so why not in the emergency rooms?
I don’t think you can generalise really. Mental health problems don’t equal trouble mostly. Then the subdivisions would be endless.
Glad to hear your test results were clear…but still begs the question of what is was and what caused it. Hope it doesn’t reoccur and that those symptoms have resolved.
I too recently spent the whole day in emergency dept and noted the state of things. With my daughter going into nursing, and the protests in and around hospitals here, I am feeling disheartened and frustrated that health care workers are on their “last legs”, and having to deal with shouting, angry mobs (as does the families coming to visit loved ones, not to mention I’ll people trying to access service).
I asked a nurse and a registrar and they both said they loved it and that it felt worthwhile. There can be a deep satisfaction in this kind of work but please can governments fund and equip it properly.
Having now googled my symptoms, I think it was Occipital Neuralgia.
I have to say Jane. When I read your symptoms again, they definitely mirrored mine and as you know, I have occipital neuralgia too. The shocks of pain that shoot up the back of your scalp can sometimes make you catch your breath. Not pleasant at all.
See my reply to Dad2Cue. Not like shooting, electric shocks. My mother in law had blackouts with cervical Spondylosis I think and I have that.
That doesn't sound completely quite like mine. I did sometimes feel like I'd been hit on the back of my head with a frying pan though. Never had blackouts, nausea or dizziness. The main thing is you're improving and recovering. Fingers crossed 🤞
I had Thyrotoxicosis and would have been confined to an asylum in the 19 th century.
I worked in the Law Courts and saw the same group over represented with no appropriate alternative to prison.
Mental health is one thing. But there is also just general entitlement and badness that turns up in A&E on a regular basis. "I know my rights" - but forget that with "rights" come "responsibilities"
Possibly the issue right now is people coughing freely without mask on. Those would be the real troublemakers in the middle of a pandemic and if indoor masking is not currently mandated then the hospitals should be able to issue their own mandate and make everyone who enters the hospital be masked. That would have nothing to do with mental illness as such, although some of us might consider this bad behaviour crazy in the circumstances.
And that is the people I am typing about. I knew one of the people in Plymouth's main hospital A & E once and there was nothing mentally wrong with that person the only thing wrong with that person was he/she is scum and wanted a "fag" and it two police officers, 3 security guards and two nurses to calm that person down.
That person also has a huge swastika on the chest and was racially abusing anyone who didn't live in his/her flats and were not from this country.
and to think we are all about PMR and GCA. It's more than that isn't it. We have to get through the ups and downs of dealing with the consequences. Then there is our upset at the way society is falling apart and the woeful lack of good behavior and consideration for others. Don't get me on rights...PMR pro is correct that with them come responsibilities. Dad2Cue had a difficult time clearly and took a humane and empathetic route to making it possible to deal with many diversely troubled people and remove impediments to selecting the groupings and how to deal appropriately. That takes empathy and grit. There are scumbags and toe-rags we have to deal with daily. Whether drug induced, mentally compromised or other they disturb disproportionately those simply seeking a resolution of their troubles. There has to be a way to segment in order to permit our medics to function effectively and more importantly, safely. I have to deal with groups of lampers and hare coursers poaching and trespassing our farm at 1-2am sometimes. 2-4 young men to middle aged with dogs and aggression. I have seen any number off on my own over 9 years . I've been told many times by friends not to tackle them on my own. Who else is around at 2am when they choose to call? Every situation presents a challenge and how we set our minds to that challenge determines how good or bad we feel afterwards. We do what we must and we sometimes have to choose whether to ignore, pass by, turn a blind eye or confront. It's never easy but for our own good especially now, we need to make these choices and if we choose the path of least resistance and disturbance that is understandable. Be at peace with your choice. It will be the right one for you.
That is feisty and brave but foolhardy. You just don’t know what you’re dealing with. I had an Alsatian dog growing up. She’d have seen them off, wonderful dog.
True SJ but necessary. It all depends on how they are approached. If they turn nasty which some do then confrontation is not the response. I just let them vent their bile and then patiently explain why they shouldn't be there. Threatening them wouldn't work. So far all ok. The trick is knowing how to present oneself in a way that they think you aren't concerned with their aggression and it doesn't pose a threat to you. It's a way of dismissing them as irrelevant.
My goodness....what an experience, and yet you still managed to feel compassion for others. I truly hope that was a 'one-of' experience that took you there. I hope you are feeling better, Jane, and stay that way.
At first, I thought you were describing my Emergency Room in the states!😛 I sounded quite familiar, only I've not seen junkies sleeping it off. There are times I won't go...I'll take my chances because the ER docs have a protocol (I get it) but don't know me at all...and most don't know ANYTHING about autoimmune issues for sure💖.
Thanks Grammy! Well one junkie, who had been knocked over by a car. He was a completely different chap when his drugs wore off and in so much pain. One shin twice as big as the other and breathing difficulties. I felt sorry for him even though he had been a loud, in your face, nuisance previously. All life was there.Thanks to everyone for letting me talk out the trauma of it all. 💖 Better return to the job in hand PMR and GCA. I found quite a bit of knowledge about GCA to my relief.
Good morning Sheffieldjane,So pleased to hear it wasn’t a bleed.
I m just sending you love and best wishes.
Ruth
X
Well what an experience , that must have been quite frightening for you. Glad you’ve read up on this and maybe that’s put your mind at ease . Hopefully too that was a one off occurrence. I think we bumble along coping with GCA and PMR. Start adding other things on top of that and often that’s just too much. Awful experience at A&E, unfortunately so often it is and the waiting. Feel very sorry for the staff there that are often exhausted.
I know I went in Jane, oh about 5 years ago now with what was called a “ thunderclap “ headache. It was just like someone had hit me at the back of my head and the pain was horrendous. I had recently been diagnosed with GCA and PMR. They suspected a brain bleed but like you thankfully it wasn’t. I have never had any more problems since.
All the very best. Well done for reaching 8 mg. It’s funny isn’t it how we congratulate someone for getting to a certain level when it’s not really up to us but the condition and how it is behaving! 💐x
So sorry you are suffering but glad the scan was clear. Awful that staff have to work like that every day, as I guess your experience is the ‘norm’ there. Hope you feel really better really soon! Hugs, S x
What an awful experience- and when you are feeling unwell and fragile to start with. I do hope you are feeling better today - did they give you anything to help with the pain and dizziness?🌷
No nothing except distractions - pretty effective.
Hello Jane, I just came on here to write something and then became completely immersed in your thread. Firstly, I’m so relieved to hear that it wasn’t a bleed. Phew, cross that one off!! The whole experience sounds horrendous, but it’s the same at A & E here. We have ambulance ramping, where they park in hospital driveways waiting to get into A & E. It seems that our health systems are in need of huge injections of funds, well that is what ours needs anyway. You might have heard all the bad news about it. On another note, I have a bit of an update for all our Actemra people, but I think I might leave that for another post. Just pleased that you survived (and took control) of the situation in A & E. xx
Thank you LemonZest11. I kind of assumed that your health system would be in better shape. It’s beginning to sound like a global crisis in varying degrees. We certainly have patients waiting outside hospitals in ambulances. My husband took me in the car, he wasn’t allowed in, understandably, it was standing room only. He sat on a concrete block outside trying to work on his laptop, surrounded by folk with various social problems, giving directions etc. I am still not feeling great and the headache began to build again last night. I am sleeping a lot. It is reassuring that the really bad things have been (hopefully) ruled out.I am interested to hear your Actemra news. Are you doing a separate post? 🍋🍋🍋
I didn’t get around to it … got side-tracked as usual. Probably not worth a separate post, I just wanted to reassure some of the Actemra injectors that a quick increase in pred from .5mgs to 4mgs for a week, did the trick. I think it had nothing to do with spacing the jabs out to 4 weeks, but rather just too low a dose of pred. I’m back down to 2mgs and I think that might be the limit for me. It’s a matter of fine-tuning now … to jab or not to jab, to taper or not to taper. I hope you are feeling better Jane. xx
I am feeling better not 100% though. Yes, only Pred makes the big difference. I would settle for 2 mgs any day. I feel in the same boat about Actemra. Working in the dark. I am glad the 0.5 did the trick. Xx
Well actually Jane, I had got down to .5mgs, went up to 4 so increase of 3.5mgs. But back on the horse at 2mgs pred. We'll see 🤔. Thinking of you down here Jane. 🌹💐
My daughter is tantalising me with the prospect of a Christmas visit. NSW is champing at the bit. I am feeling very Christmassy but we’ve been here before. 🧑🏻🎄 Thinking of you too, winning your epic struggle.
I thought the link I posted for the sarilumab question was quite interesting about tocilizumab - they didn't fall over themselves in praising it I felt (being used to medical scientists and their style)
The pain I had was sudden and severe as if I had been hit on the back of my head with a baseball bat. I wouldn’t characterise it as being like an electric shock. Prior to the sudden attack I had been bent over my ipad. Then the room tilted. If was frightening. I also felt nauseous. I have had electric shock sensations in my teeth with hot and cold food or drinks. I am left with dull pain in the occipital region and intermittent dizziness, with nausea.
I think I might need to remain on a small dose forever. Maybe 2mgs? It was at 1 and below that I started to flare, but a quick increase to 4 then 3 now 2, got it back under control. Will cease the taper to see if I can stretch the TCZ out. I can't take it weekly/fortnightly for very long anyway due to neutropenia. I'm in a fine juggling act at the moment, but feeling strong.
I am late to this post! Glad scan was Normal. did you ever find out anything new? how are you now? xxo
Thanks for asking Bonnie. My social life consists entirely of medical tests and medical telephone interviews. Just had an MRI Cardiac Scan which alarmed me more than I expected - mask, chest weighed down by a very heavy rubber block, earphones and put in a tube, contrast dye. None of which I expected and the grim faced staff hardly spoke to me. Big shout out to Leeds Infirmary! 😉
Thinking of you SheffieldJane 😊
Hope Christmas works out well 🎄🧑🎄xx
Thank you and for you too! 🎅🏼🧑🏻🎄
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