In Hastings, listening to the seagulls, after being admitted yesterday with a blinding headache which I feared was GCA.
The headache was so severe it caused vomiting and diarrhoea and did not respond to my usual migraine meds so a call to NHS 111 brought kind lady paramedics who brought me to this hospital.
I have tried so hard not to be a drain on NHS resources in the past year of the pandemic and my health has definitely suffered, especially my mental health. But now I am here and being so well looked after by such caring professional folk, I feel overwhelmed with gratitude.
So far temporal arthritis seems not to be the problem, but as yet there has been no finite diagnosis of my phenomenal headaches which recurred today after the pain relief of yesterday wore off. But the consultant is making a referral to Neurology and maybe something will be found.
Meanwhile I will enjoy my jacket potato and the care of these very special people. God bless the NHS
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Zebedee44
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Thank you DL. It was thoughts of your experience that made me contact NHS111 so promptly Sadly the response although excellent was not rapid response and the lovely paramedics had never come across PMR and were diverted to a DIY accident en route to me.
Shame I’m not in Yorkshire. The NHS 111 doctor recognised that it was a condition requiring attention within the hour but the ambulance service had other calls to attend. And I was not fit to travel much sooner as it happens.
Sorry to hear you are so poorly but you are in the right place & at least they are referring you to Neurology which hopefully means you’ll be seen while on the ward.
I'm so sorry to read this, but glad that you are in good hands and feeling so well cared for. Let us know what the Neurologist has to say and in the meantime try to relax, knowing that you are in a safe place. 🌷 🍫
Really feel for you with your headache and resulting side effects. I get exactly the same thing and it can take a fair few days to get over. Do you have Diorylte or something similar.. That is quite useful when you have been vomiting and on the loo at the same time. Sipping that throughout the day can really help. Let us know your outcome. Good luck
Thank you for that suggestion Sophiestree. I was so dehydrated when I came in, I finally begged a cup of tea which I sipped at. After a syringe of oromorph and a drip paracetamol I had a litre of saline which perked me up but tied me to the bed all night. I’m pleased to be back to normal eating and drinking and mobile again now.
Yes, the saline drip has always worked for me. I am also given Ondansetron melts from the GP as if I start to vomit I don't stop for 24hrs, and by then I will end up on a drip. I have them everywhere, in the car, handbag, by the bed, purse..... if I feel even slightly nauseous from a migraine I will take two. Let's hope they find a reason for what happened to you. You will feel pretty wiped out for a couple of days, so be kind to yourself when you get home and watch rubbish on the telly with a blanket!
Still here and not yet had the result of a lumbar puncture looking for a bleed on the brain or indication of high pressure in the brain.
The doctors here think It’s more than likely a tension headache and I find it shocking that the stresses I have been dealing with recently have brought me to this point, where I needed to be hospitalised during a pandemic.
And I guess the whole COVID situation is just another one of those stresses. The daily dose of pred (8mg and not managing any taper) keeps the physical pains in my body manageable but my emotional pain has boiled over like a pressure cooker.
In my last post on this forum on the 4 th anniversary of my diagnosis of PMR I reported that I did not feel that my GP surgery had engaged with me over my diagnosed conditions in the time I had been registered. I knew I needed help so I contacted the practice via its own website contact page last Tuesday and finally got through by phone just last Friday after nobody called me back.
I am so disappointed in the practice and I don’t know what to do, whether to write to the Practice Manager raising my concerns or simply transfer to another practice.
This hospitalisation has put me in direct contact with the professionals I need and a bit of understanding and support. I am still hugely impressed by the people at the Conquest Hospital and wonder why I was so frightened of needing the support of the NHS at this time. A year of trying not to make any demands on the NHS has not been good for me.
So my message to all of you is to to not do as I have done; if you need help from our wonderful medics then ask for it and don’t be too put off by lengthy telephone answering machine messages telling you how much in demand they are and don’t be too afraid of entering inside a hospital where business is more or less as usual with masks!
You often do have to accept that 8mg (or whatever) is the dose of pred you set out to look for - you never were reducing relentlessly to zero but to find your sweet point, the dose that gave the same relief as the starting dose did, possibly with a few niggles but not too many and certainly not increasing.
Once you gain that acceptance, it takes away a lot of the tension - above all, you stop worrying that you can't reduce the same as your neighbour across the road with PMR. We are all different, we all need different doses to function and just because other people can do something doesn't mean we can. How are your quantum mechanics skills?
If I had any quantum mechanic skills before I don’t have them now! Brain fog has removed many of my abilities and stress has dampened my creativity. When I get through reading a book or do a bit of art I will know I am better. Even a jigsaw puzzle defies me most days
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Letter from the hospital
In praise of Specsavers and the NHS!
New with Questions
Can you have PMR if you are under 50?
