after two recent new episodes of crawling around the house on my hands and knees being unable to stand upright I decided to ring the surgery. No telephone appointment or f2f available so called 111 in desperation. They called back within 4 hours, took lots of detail and said they would report to my surgery that I needed to be seen that day and I should ring for appointment. Surgery says no appointments so I go back to 111 who can’t find any other options and make ‘appointment’ at urgent treatment centre At hospital at 6.30 that evening. By 9pm I wished I’d eaten before going but by 10 ish I was talking to a clinician and by 1030 bloods and ECG done. All I had to do now was wait to see a dr so I messaged hubby to get ready to collect me. By 12 midnight I sent him home again and said go to bed but he decided to clear out the garage ( yes I know a bit bonkers). At 5 am a senior dr started talking to me doing exam and tests as ECG and bloods clear ( please take out this cannula then as it hurts) 6 am they give diagnosis of Orthostatic hypertension and script with instructions to call GP. I go home to bed and inspect tidy garage and sleep until lunch time. I ring the surgery who say no appointments. EVER DECREASING CIRCLES.
12 hours urgent treatment centre = Orthostatic hy... - PMRGCAuk
12 hours urgent treatment centre = Orthostatic hypotension,
Your surgery needs a kick - there should be emergency appointments because the ED isn't there to manage this sort of thing, they have done the diagnosis, now you need the rest, The ED can't say "we're full, no room at the inn" - time your GP stepped up.
Your surgery is very poor.at ours we tend to get a telephone call back fairly quickly and then an appointment that morning
I’ve checked the surgery and it’s listed as in need of improvement but then again so is the hospital and it’s only about 10 years old
It’s not the building it’s the management within it… so sorry to hear about your recent experiences.
Agree, and thank you for your support
Some GP surgeries are really not fit for purpose - it terrible in [allegedly] a first world country in the 21st century..
hope you soon feel better,.🌸
DorsetLady and PMRpro, this morning I have painful stabbing on one side of my neck that is short lived but quite intense. Plus an on off net curtain like partial blurring of the eye on the same side. Last night random sharp pain in jaw bone on the same side too. I’ve had a blanket headache for about two weeks. Is this an Emergency, hypochondria, nothing to worry about, just part of everything else, or just mention to new GP at face to face appointment today at noon 🎉
Don’t like the sound of that…. Nor the headache for 2 weeks - was that mentioned or taken account of when you were at A&E?
As you have appointment at noon you could wait until then, but obviously if it gets any worse, another trip to A&E must be considered….
Maybe a call to nhs111 this morning before appointment explaining situation
Please keep us informed and fingers crossed…
I told them about the headache, they did shine lights and ask me to read and then gave me two paracetamol 🤣As if they help!! ‘ Pharmacy only’ migraine med not worked as usual and I’ve had several days without to counteract build up and rebound type headache. Thanks for your reply, I’ll waiting for appointment unless worsens and report back later 😀
I'm not an expert, but it sounds just like the symptoms I had when I was diagnosed with GCA; except I had jaw claudication too, you haven't mentioned that. But it might be worth flagging it up at your GP appointment. Do you have your blood test results from A&E? Take those with you too, as it's unlikely they will have been passed from there to the surgery (all my records were lost when I went last year). I would also recommend you get an emergency opthalmology appointment. Good luck!
Thanks for your reply, I have seen nothing from the hospital on any of my tests, how on earth do I get those ?
That may be a bit difficult- most blood test results go back to doctor requesting them -so if requested by A&E or other departments they will be on your hospital record. Those requested by GP go back to GP… but may be accessible by hospital staff -doesn’t seem to work the other way though….🤦🏻♀️
Completely farcical when each party then claims they need to see the other results or have to repeat the tests, what a waste of resources . I don’t know what they tested but they were all clear. I imagine they repeated what locums had already done three times with negative results each time, I don’t have the medical terms but know they tested for a cancer, celiac, hyperlori bacterium (?), iron, ESR. I guess they’ll do more bloods then. This really is a hopeless circle of misdirection and waste, like a maze, it’s depressing. I may just become a recluse and live in a tower like Rapunzel except my hair is thinning 😖
Once upon a time, I completed reams of questions etc when the intention was to integrate all medical records on to one system...but of course the it was all too difficult and the money ran out - sound familiar... another fairy tale.
As long as hair is still growing you may be able to "do" a Rapunzel.. just so long as a prince doesn't need to climb up your plait...🤦♀️
In answer to your question, in my case, I rang the hospital. They were very helpful, but couldn't find anything. I insisted they put me through to the lab where the tests were done - they're not supposed to speak to patients - so I just asked if they had any results in my name/ NHS number. They said no, they had no record of me. If they had, I would've asked for the results to be sent to the GP. In future, I will ask for a print out of the results from the A&E doctor, or take a notebook and write them all down!
It's H pylori by the way.
I'm wondering if they tested your potassium? Low potassium can cause muscle pain and lack of mobility like you have had. But I think CRP and ESR would be useful in eliminating GCA. Even on 15mg pred, mine were still over 50, leading to the diagnosis of GCA.
Having lived in so-called Third World countries for forty years, I find that I'm frequently disappointed in this "First World" country's standards.
Sure you are …
Shocking! I assume it is the receptionist who is telling you there are no appointments??? I would ring again and ask to speak to the practice manager. If there’s a problem there you really need to take things further as the GP has a duty of care and should follow up on the hospital diagnosis. As a start, you might ask for a copy of the practice complaints procedure because you feel your needs are not being met.
Just suggestions.
Do you have e-consult at your surgery, as that by passes the receptionist? It works quite well with my surgery.
Me too - find it works very well, but then don't actually need to see a GP!
There are now two p/t drs in place of the locums I’ve spoken too since February when I started these new symptoms. They just need a surgery manager and then hopefully things will improve.
They still use quills and pigeon carriers
From October 2021 the NHS in England had the following requirements for GP surgeries.
New functionality for patients
Practices are now required to “offer and promote” to their patients (and those acting on their behalf) the following:
an online consultation tool
a video consultation tool
a secure electronic communication method
an online facility to provide and update personal or contact information.
england.nhs.uk/gp/investmen...
Thanks piglette, will you tell them or shall I 🤣 they don’t accept comment or suggestion very well and I would be asked to leave but I will use this info in letter of complaint AFTER today’s appointment 😉
Hi Stills. I can't see how not being able to stand up is equated to low blood pressure which is the diagnosis they came up with after your hours in the experts care. You seem to have been coping with multiple disorders since 17 yrs of age. TBH I don't know how you've kept going and the response from your surgery is unhelpful. Why were you crawling on all fours please, and how did you get to the A&E. Sorry if I have misunderstood
Hello, perhaps in my effort to keep my post brief I have said enough so I’ll expand. Two recent episodes of severe vertigo leaving me only able to move except all fours led me to my GP who refused help and 111 directed me to urgent care to check for stoke which I was adamant I had not had. Upshot is a GP is actually going to see me tomorrow and had a long chat with me on the phone today talking about Addison’s Disease, adrenal insufficiency issues and she even said she’d read up on Stills as organs, even the ear organs can be damaged and contribute to vertigo . The episodes are random and last 4/5 days with improvement each day. It’s new for me but dr also referred the cancer flag in my bloods in February saying some slow growing tumours may manifest with adrenal insufficiency. A lot of information for me to assimilate and I’ll know more tomorrow. If it turns out Stills has damaged organs resulting in these episodes I imagine it’s easily resolved with pred or other med.
Thank you for your interest Cycli xx
ok. thanks. Understand. Vertigo due to low blood pressure. Makes sense. Fancy name for low BP. I've noticed with some GP's that if they think you are a constant "trouble" you get short shrift. When they can be bothered they dole out time in inadequate duration. Luckily my surgery is nothing like yours. It's not as if you want to go there. You were worried and needed attention and an answer. I hope you are a tad improved.
Orthostatic hypotension is BP falling dramatically when you stand up from seated. It is purely positional, lying down means it doesn't fall.
I understood that from reading about it. That's why I said I understood. Still a fancy name for low BP. I was querying how stills got to hospital when she couldn't stand up . Presumably husband drove while she was lying prone in car.
Yes that’s it exactly and when we got there he commander's a wheel chair, they were less helpful once I reached the various test rooms but thankfully it’s over now and won’t be repeated.
It isn't JUST low BP. We are talking 80/50 and lower. And it CAN be life-threatening.
Life threatening…, they didn’t tell me that but did say it was a 25% drop which doesn’t seem too bad?
If it were a bit more, and you were in the wrong place, you can fall down stairs and break your neck - happened to a friend, He is a live but quadriplegic. But
"longitudinal studies in the general population have shown that orthostatic hypotension increases the risk of stroke (2), myocardial ischaemia (3), heart failure (4), and mortality, both in middle-aged and elderly individuals "
So yes, indirectly, life threatening,
If you have the energy ask to speak to the Practice Manager, or go in person (they won’t like a patient crawling on the floor towards them). This is a very serious matter and your surgery has a responsibility towards you. Most surgeries now have a locum or GP to deal with on day emergency appointments. They should also have various assistants such as care provider, clinical assistant, social prescriber and so on to spare the GPS. Good luck! ❤️
I wouldn't want to crawl on the average GP surgery floor ...
There is definitely no cleaner at the surgery, the place is like city tube on a Saturday night…..
Yuk! I wasn’t being entirely serious 😉
they do have a nurse practitioner and nurse who takes blood etc but that’s it and they seem to the GPs job mostly
Sounds as if you need PPI to be a patients - disgusting! I'll stay here - direct access to the GP by phone or in person. Bloods taken at the hospital-run clinics. Short waits at the ED unless it is ski season and then you aim to be there early in the morning, even skiers don't usually get there with broken things before 9.30am ...
This surgery treatment requires an urgent complaint because they have failed to safe guard your care in an Emergency situation despite a request for them to see you by 111.In those situations they cannot simply reject the request for Emergency Care . If they are open they must allow you to come to the surgery immediately and fit you in whether they have any Emergency Appointments or not.
Most specifically because symptomatic blood pressure issues can cause a risk of worse events occurring if not treated swiftly, but also because tests need to be done at the time the event is happening for certain conditions to show up in an ECG reading.
This is not the time to report or complain to the surgery itself. Which , in truth , I find even less productive than reports to PALS. In house decisions seldom change the situation and are more of a backside covering exercise.
This is the time to get the contact details of your local Integrated Care Board ( ICB) , this took the place of the old CCG in 2022. You can get the information on your local ICB from doing a search on the NHS website.
In the meantime , if they have not offered you a follow up appointment you can tell the receptionist that you are already in the process of putting a complaint in to the ICB about the surgery refusing to give you emergency assistance and to safeguard you about the previous incident and do they really want to increase the issues in the complaint by refusing to give you the urgent appointment the hospital told you to get a second time.
If it puts their noses out of joint , so be it, you need to complain and follow through , sometimes it's stepping up that gets you the care you deserve rather than a friendly attitude.
Use the words " put at risk " and "did not safeguard care " "ignored your needs for emergency care" are important to include in any complaint because they are the red flag phrases which mean the complaints board must follow through with their investigation.
Hope things improve. Just try to take moving from one position to another slowly and drink some water quick quickly and raise your arms up and down a few times in your seat before you stand up as these tips help to prepare your body for the orthostatic change and reduce the drop into hypotension. Take care , Bee
thank you for your very useful advice which I appreciate. I will do the arm movement too, you’d think the hospital would have suggested it wouldn’t you. I’ll post an update after todays momentous in person appointment.
Unfortunately, I've discovered that they are all at a complete loss when it comes to advising people about reducing the symptoms of orthostatic and dysautonomia conditions.Hardly any proper research is available and hardly any is being funded which seems ludicrous considering the amount of people that suffer from the symptoms of autonomic nerve and cardiovascular dysfunction.
What is available hardly any doctor bothers to read which is why they never give anybody much self care advice or they just brush if off as inevitable.
Bit like PMR then ...
I do feel brushed off and cast adrift as Sheffield Jane put it. I also feel I’ve had my fair share of investigations and tests and that I should just eat well take pain killers and the new Prochlorperazine script and stop moaning when there’s others in need.
I've felt like that a lot.But making do never works if you aren't being treated in the right way for your condition it all ends catching up with you and getting worse again.
It's tiring but worth continuing to push for an accurate diagnosis of these things and finding out the root cause.
If you treat the cause it far better than treating the effects.
Did they give you procholrperazine for orthostatic hypotension?I know it's used for motion sickness and vertigo , among other things but I thought one of the side effects of that drug could be orthostatic hypotension?
Might be worth asking your GP about it or at least be careful if you start taking it .
Was it orthostatic hypotension or orthostatic hypertension you were diagnosed with?
You mention both in the post.
Blimey, I don’t think I actually know Bleary as nothing in writing from them; to me anyway, maybe GP. I’d best check I think. The script is Prochlorperazine to stop the nausea from the vertigo although I have not vomited at all. I don’t want to exacerbate any thing so I really appreciate you pointing this out. After 12 hours over night on a hard chair in cold ER with only water to drink I wasn’t at my best so probably wasn’t listening properly. I will try and speak to GP for clarification. Thank again for your input.
Hypotension !
well you have created quite an interest in BP and it's effect on ones physiology Stills. Well done and very interesting thread. Great advice from Bee and others. What the diagnosis doesn't cover is WHY you are having this.This is the frustrating thing with so many conditions. Without knowing why we aren't able to properly address the problem. Good luck going forward.
Good morning Stills,
I live in the U.S. and am very familiar with this condition as my mom has dealt with it for years. After much researching, have found that drinking a 16 oz. of water before moving to get out of bed in the morning is very effective in countering this condition. Mom's BP is normally 60/40 or sometimes less. I've included a very helpful medical article that explains the mechanism of Orthostatic Hypotension. I hope this may help symptoms while you sort through the cause. All my best to you.
medicalnewstoday.com/articl...
Thank you very much indeed I appreciate that and will increase my water consumption again, you know it’s not free here 🤣😉
Do you mean Bottled water?
English sense of humour sorry…. I jest, meaning tap water, which I don’t drink.
I love humor! Still worth the cost, lol. 😘
Tap water ain't free either in many places!!!!
Gotcha not free at my house either.
When my brother had a low blood pressure problem, occurring when he stood up, sometimes causing him to pass out, it turned out to be a thyroid problem. Now on thyroxine and under control.
Thank you for your reply and I do consider thyroid issues as weight loss, nails snd hair suffering , fatigue, change in bowl habits etc all linked but difficult to differentiate with so much going on. Over in the thyroid pages I’ve read Drs are even less interested and correct treatment even harder to get snd most suffers self fund tests and treatment so I’m fearful if that. At least with RD type symptoms I’m in the know so much as I can be , thanks again
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