I told you was having trouble reducing from 10 to 9mg and a week last Sunday went on 10mg.
This Sunday 14th I was at church and passed out completely.
Lots of help at church fortunately and was eventually taken to hospital, Spent 9 hours on trolley bed. Lots of monitoring, ECG, bloods and chest x-ray.
They were all ok except when they rechecked my blood pressure - lying down fine then went slowly to standing and BP fell rapidly. Other concern was that my bloods for cortosoids? was inconclusive.
They allowed me home but had to return Monday a.m. for further CORT blood test and they said to see a rheumy ASAP.
Well that was okay but my problem is that on Monday afternoon I noticed some pain in my head. Rested and took Paracetamol. Pain stayed. Tuesday few hours after taking Pred pain was worse than day before and more expansive around head. I phoned Rheumatolgy Nurse helpline around 1pm. Rested and took pain killers. Head has remained sore and aching.
I have phones helpline again still waiting for a call.
My big dilemma is that I initially presented with atypical GCA symptoms and don't know if I'm having major flare. Do I take some more pred???
Please help
Cath xx
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Hello. Since your head pain is new, persisting and largely unaffected by pain killers I think you should be seen urgently like A&E, not waiting for a phone call that may or may not come. If it does, don’t be fobbed off. There may have been some other cerebral event that needs looking at and what was this CORT test? Were they checking to see if there is any cortisol in the blood but couldn’t find much?? Something’s causing this postural hypotension. I don’t think you should be taking this into your own hands.
Do what Snazzy said..................off to A&E now and take some one with you...........never ever do nothing about GCA..........if you suspect it................
Er, well, of course your blood test for cortisol was strange - you are on artificial corticosteroids so your body won't be producing any cortisol.
BP falling on changing position is called postural hypotension and there are various causes.
But being told to see your rheumy asap means an emergency appointment, via your GP is probably what they were thinking about. If you have symptoms of GCA that are similar to the start then probably some pred would be a good idea. But a better idea would be to go to A&E at the hospital where your rheumy is and demand to be seen. You have already waited 2 days - the helpline is NOT for emergencies.
Have spoken to helpline nurse she has spoken to rheumy. Both said same thing, see your GP about the Postral hypotension. Keep Pred same. Nurse says pain possibly due to fall - bruising coming out. Called GP surgery and no appointments today, ring tomorrow.
But why? Unless sodium/potassium were crackers - but even then, that would be a specialist test wouldn't it? Fainting would suggest hypotension - checking aldosterone hypertension. I think ...
I know it does seem extreme for ‘fainting’ but they were investigating blood pressure. Why would they check cortisol levels knowing the patient is on pred?
It is a bit but to me now I have calmed down after reading replies and talking to nurse - I have had a bath and some food, I am annoyed that I wasn't told to contact my GP. I think that even if I got a bump when I fell it's likely that the fall itself rattled my head. I'm monitoring myself closely and will see GP tomorrow. Thank you for being there. Cath xxx
One word of warning re baths: be careful as a hot bath will cause vasodilation, this will cause your BP to drop which you really need to avoid currently. Don’t want you passing out in the bath or falling as you try to get out 😮
Remember emergency services are there for you 24/7. Always better safe than sorry.
One more thought: are you on amitryptylline 1602 ? I was prescribed a decent dollop years ago as a pain adjunctive and had terrible postural hypotension. Did nowt for the pain either.
Hi only have warm bath and waited until hubby around. No extra meds now. Rheumy did want me to try something last year could have been what you wrote but I turned it down. Promise to be careful. Never had BP problems. Thank you xxx
Sorry to hear of your troubles so far , I hope the headaches has reduced , if not the Aand E option is still a good thing to be prepared to do , especially as you have not been able to get a GP appointment.
You could be suffering from , orthostatic hypotension , as previously suggested , or a condition called POTS ( postural tachycardia syndrome ) , each of these show similar results in BP / Heart rate and are caused by your autonomous nervous system reacting inappropriately.
Sometimes this can be a temporary condition , brought on by dehydration or a lack of the right salt levels in the blood , things that can happen as a side effect of medications or after a flare , an infection or even being low in some vitamins . It is quite shocking because it can cause dizziness and fainting and pain in the lower extremities because of blood pooling as your BP corrects itself to your new needs in a different position.
These conditions can be more long term , but in milder forms can be managed by changes in how you move and with special techniques like these below.
Drinking cold water quickly before sitting up , standing or lying down after you have been in a position for a long time ( especially in the morning or bedtime) is part of the recommended management of this.
Keeping a bottle of water to drink from to at all times is required , and before you even get diagnosed for either condition, this, and the other tips, are recommended.
Not moving your head and neck to quickly and using slower movements with the upper body also stops the dizziness .
Keeping your head in a more upright position , and moving your whole body not just your head to do or look at things.
Regularly moving around with a little pace around in between activities that are stationary.
Do not lie flat in bed , but keep your head elevated on pillows and often raising your feet on a pillow too , it reduces the effect that blood pressure dips have on you , and reduces fainting risk.
Most importantly , you need that GP appointment , they will do the positional BP test again to see if what happened was just a temporary thing or it is continuing. If it is still happening you will need a referral to a Cardiologist to assess you for Orthostatic hypotension , POTS or something related to your drugs or GCA/ PMR.
They will decide if you need a tilt table test which will finally confirm or rule out these types of blood pressure issues , and then make choices on managing the condition.
Most levels of these postural blood pressure / heart rate conditions are managed by lifestyle , or you are given medication to help regulate your system to stop it happening.
But definitely get that GP appointment as soon as you can to get the ball rolling , and if you cannot get one , or feel worse , arrange to go to the Out of Hours Surgery to have yourself assessed or ask to see the GP as an emergency.
It can take a while to get a full answer on Blood Pressure related issues so getting the process going as soon as you can will be the most help to giving you peace of mind and making you feel better.
In the meantime , try the above tips and keep as relaxed as you can , take care , Bee xx
Hi BEE thanks it's a lot to take in, I am taking care with movements and resting often. Always sleep as you say and am prepared for out of hours or A and E if necessary - not being silly thanks for your response. Love Cath xxx
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