I was diagnosed with PMR in Feb 2020 and started on 20mg of Prenisolone. I have been reducing every 2 months and am now on 3mg. I have in the past few weeks had a fainting episode where I go really how and start sweating and pass out. I also lose control of my bladder. I feel unwell for a few days and I am having bad headaches which last for 24 hrs. They are not like the head pains I had when I started with PMR. My blood pressure is under control with medication but the doctor mentioned that I have a slightly enlarged heart but nothing investigated. I have not spoken to rheumatology since Feb this year and they are due to ring in December. I am worried about the fainting episodes and don't know if they are due to PMR or something not connected. I'm like the other people who have no energy and am only doing basic jobs around the house. Can anyone help.
Headaches and fainting: I was diagnosed with PMR in... - PMRGCAuk
Headaches and fainting
Has no-one considered that you may be suffering from adrenal insufficiency as you reduce the dose of pred?Is there a common link with something when you have these episodes - I'm assuming from what you say it wasn't a single one? Have you been doing something immediately before? Have you been under stress?
On one occasion I was knelt down cleaning a cupboard when I went hot and started sweating and went faint. Yesterday I had done a small amount of ironing but wasn't over warm. I made a sandwich but as I sat down to eat I again went hot, started sweating and sat with my head down and my husband said I passed out for a few seconds. I'm now feeling frightened to doing anything and losing confidence in going out alone.
You HAVE reported them to the doctor? If not, please do so. If it happens again don't hesitate to call 999 - when they get there quickly they may manage to catch some evidence on their ECG device.
I had similar episodes some years ago that turned out to be due to an arrythmia, probably caused by the autoimmune part of PMR having damaged the sinus node in the heart that governs heart rate. The fainting part was because tachycardia (fast heart rate) were being followed by bradycardia (slow) and long pauses between heart beats,
I intend phoning the doctor this week to see if I can get a call back but it isn't the same as seeing them. I'm expecting him to say it isn't anything to worry about but it isn't usual and not something I have experienced in the past. There I was thinking I would be fine and off steroids at the beginning of next year. !!
And if a GP suggested to me that random fainting episodes like that were nothing to worry about I would be putting in an official complaint!!! I would be expecting an emergency f2f appointment. And it is why I suggest next time it happens you dial 999. As you are obviously aware since you are reluctant to do things, something like that can turn into something devastating - a close friend is now quadraplegic after falling down their spiral stairs after a dizzy spell. I just fell and hit my head, ending up in hospital - it took that to diagnose my episodes. I don't remember even feeling dizzy that day, I had had moments before when it was like a wave passing over me but never as severe as what you are describing.
Hi PMR Pro: I am curious as to the outcome of your arrythmia, tachycardia, bradycardia and sinus node. Do you still suffer from this? How was it addressed? I ask because I had a stroke a week and a half ago and they are concerned about my heart arrhythmias and will put me on a monitor to see what is going on. Thank you for your reply.
I was given a pacemaker to address the brady problems - no problems there for the last 6 years. I do still have episodes of tachy and brady heart rates, probably with a/f included, but I very rarely go to the hospital - by the time I get there it has usually stopped! I was blue-lighted in a month or so ago when I woke with a HR of 180-190 and spent the day there until it settled down after a plough throught the options for slowing it down! Although one doctor (in whom I have no confidence at all) informed me she was stopping my usual anti-arrythmia drug as it "obviously wasn't working", after a day without it while in hospital it took a few days to settle down despite restarting it. My GP looked horrified. I, she and my daughters (a nurse and an ED practitioner) all put it down to stress and exhaustion (we were caring for my husband at home and died 5 days later).
As for the arrythmia - it is one of the primary causes of stroke and the first line approach is anticoagulant therapy to reduce that risk. Clots form in the base of the ventricles (the lower chambers of the heart) and can be dislodged during an attack and that can lead to stroke/MI/PE. Long term anticoagulant therapy reduces existing clots and prevents new ones forming. Then they need to identify what type of arrythmia it is and the underlying cause if possible - and that informs their decision how to manage the arrythmia. Some arrythmias are just accepted if they don't affect the patient's lifestyle - my husband had almost permanent atrial fibrillation but not severe and it didn't make much difference to him. Mine is what is called paroxysmal and I notice when it starts and sometimes feel quite rubbish. Some arrythmias can be treated with medication which slows the heart down so it doesn't get too fast, some can be treated in the cath lab by identifying the electrical cells responsible and ablating them. It all depends - the monitor is the start. It is important that you have an episode while the monitor is on - I didn't with just ordinary 24 hour monitors and not even a 4 day retrospecitive monitor - you press a button when you feel it happening and it starts recording. But there are also newer, what are called external loop, monitors which store the last 4 minutes of recording on a continuous basis and send that to the hospital computer when you press the button. It isn't a speedy process always but not usually too unpleasant.
Thank you so much for your comprehensive reply, Pro! First of all I am so very sorry for the loss of your husband. Having not been married for a long time, I cannot imagine Such a loss. God bless you.
May I ask what anticoagulant drug you are on, and if you still have your pacemaker? I believe you mentioned that the sinus node problem was caused by your GCA or PMR , is That’s correct?
I have been placed on a daily aspirin and Statin drug. My regular GP had my thyroid tested and I am taking too much thyroid so that could be involved.
Thank God I knew pretty much right away what was happening with my stroke and called 911. They got to me immediately and took me to the stroke center at the hospital. After an initial assessment I received a TPA drug infused to my brain to break up the clot. I’m doing fine now with no obvious residuals. I need to make a change in my life to become more active as I know inactivity can produce a blood clot.
It seems that I am seeing the end of the tunnel with his GCA. Down now to 7 mg, and seeing my fat face shrink a little bit as well as my fat gut. And I have more energy and I’m not so much out of breath as I had been before. I am taking it very slowly, not wanting to have a relapse.
Thank you for sharing your story with me.
They are pretty sure the autoimmune part of PMR damaged the sinus node which is part of the cardiac electrical system. I'm on Pradaxa/dibigatran, one of the new generation direct acting anticoagulants and I think it is one of preferred ones for a/fib. I chose it because it is 2x daily - so the effect is out of the system fairly quickly if you need surgery or have an accident. It also has an antidote - at the time few did.
You do have to be careful with them - taking a NOAC at the same time as certain cardiac drugs can lead to a very high level in the blood and severe bleeding episodes. One could wish that doctors were more aware - my husband ended up with a level 10x what it should be! He was lucky that our local head of the hospital lab is an anticoag nerd - and has all the testing stuff! The USP of these drugs is not having to subject the patient to monitoring - we decided we quite appreciated monitoring and he went back to warfarin!
Yes - pacemaker still there - it allows us to use more medication for the tachy stuff without the brady episodes going back to being silly again. I was having 7 second pauses, that's a long time without a heart beat!
Well done you to recognise what was going on and do something about it - so many people dismiss the signs until it is too late to reverse the effects.
As PMRpro has suggested sounds very “adrenal related”…have a look at this post for a bit more info, and please contact doctor to get them tested. In the meantime just take things as easy as possible and without stressing (not easy I know) because that is likely to make things worse.
I fainted three times last year while I was in hospital having a hip replacement. The hospital panicked but did not know why I was fainting. It was quite exciting with their emergency cart that came clattering down the corridor surrounded by doctors and nurses with a sound rather like an American police car. I have had a lot of heart tests since. They think it is caused by low blood pressure. Feeling dizzy and sometimes fainting is a symptom of the adrenal glands fighting having to wake up. I find If I am cooking and suddenly feel dizzy I have to sit down to stop myself fainting. If I check my blood pressure immediately it is always frighteningly low.
Thank you for that. I remember my mother going faint whilst cooking the Sunday dinner as she got older. Perhaps this is a family trait.
Quite possible.
You are funny piglette! 😉
Funny peculiar or funny ha ha??!!
Funny ha ha and strong!
You need to contact the doctor NOW if you are passing out....don't wait. Anytime you lose consciousness, it could be serious....don't procrastinate calling your doctor or go to your emergency room.
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