Feeling wierd

[Poppylop]

Hi, sorry it's me again, I had a really funny turn last night, I decided to take my pred a bit later before I go to bed because I've been taking it after my tea and I've been waking up three or four times a night for a wee, so thought I would try it later. I had a niggly headache all day and indigestion, I was just about to have a yogurt so I could take my tablets when I started feeling really odd, I had a burning headache in the left side of my forehead, tingling down the left side of my face, left arm and going into my chest, my indigestion got much worse, really burning, palpitations in my chest and oddly in my stomach, at 11.45 I rang 111 for advice, they said a Dr would ring me in the next two hours but if it got worse i was to either ring them back of ring 999, after about 45 mins i felt a bit better, I was going to ring back and say not to get the Dr to ring me as I was going to take the pred and go to bed, but before I had chance to it all came back again, I felt really shaky and scared so I rang them back and they Sent an ambulance just to check me over, they did all the tests, ECG, blood pressure, blood sugar, oxygen levels, temerature, lots of other tests, everything came back fine, she said I was a mystery but because everything came back fine no further investigation was needed, they told me to take the steroids, go to bed and if I feel worse to ring 999. So I took them and went to bed, then got woken up at 3.45 with the phone ringing, I didn't get to it in time but it was a message from the on call dr (considering he was going to ring back in the next two hours from 11.45) the message said he would ring back but he never did. Still feel a bit shaky this morning and still have indigestion and a headache. Has anyone else had these feelings x

[SnazzyD]

Ooer, that must have been frightening. Very bad stomach acid can feel horrendous and apparently affecting more of you than it ought. In my early weeks, until I got my stomach and Pred timing sorted out, I had very weird episodes and my stomach felt like it was issuing lava to the rest of my digestive tract and chest cavity. For me, three things were implicated. 1) Omperpazole makes me feel peculiar and made my acid worse (also on other past non Pred occasions). 2) I have to have any plain Pred with a lot of food. How people can do it on just yoghurt is a complete mystery to me. 3) non coated Pred was never going to work with me, even with Ranitidine instead of a PPI, so I changed to coated Pred plus a bit of Gaviscon Advance later if needed.

[Poppylop in reply to SnazzyD]

Hi it was very scary, I now have an appointment to see a Dr at 9.45 this morning

[alvertta in reply to Poppylop]

Good plan.

[jinasc]

Was it over 24 hours after the last does of pred you took?

If so, sounds to me that you ran out of it................

Best time to take it is after 2am............so when you wake up to go to the loo..............cuppa, slice of bread or something to eat..............swallow and go back to sleep. This timing mimics the normal time that your adrenal glands get to work for the supply to be ready for when you wake up and start the day. Also remember we have no way of getting that extra in a 'fight or flight' situation so that is why we try to avoid stress.

Hope you are feeling better and take it very easy today............just loll around like a Precious Princess and let your body and your brain get over the shock.

[Poppylop in reply to jinasc]

Hi, I've just had a phone call from the dr, I've got to go to the out of hours at 9.45, she said she's not happy about the left sided numbness

[Manchesterlady in reply to Poppylop]

Always best to get it checked out to put your mind at rest

[jinasc in reply to Poppylop]

Sounds like a good GP stick to her like glue.

Do let us know how you get one, when you can..........

[Poppylop in reply to jinasc]

Sorry I took a while to reply ,I've been sleeping most of the day, didn't get much last night, the Dr did lots of checks, he didn't think the symptoms where anything to do with GCA, infact he said he would be surprised if I even had it because I have no sight problems, no tenderness on my scalp when he examined it and no jaw claudication but he's not a rheumatologist so I'm not taking too much notice of that. He assured me i wasn't having a stroke as I was worried because of the symptoms. He thinks it is just reactions to the steroids, he told me to get some gaviscon advance to help the indigestion, I just wish the headaches would go

[jinasc in reply to Poppylop]

Thank you, I have wondering on and off all day.

Like PMRpro, I would not have been happy either with that GP.

[Hidden in reply to Poppylop]

It does sound nasty. Let us know.

[PMRpro Ambassador in reply to Poppylop]

I wouldn't have been happy either.

[Jessileigh in reply to jinasc]

Jinasc,

What do you mean that we dont get extra in a fight or flight? Just curious what this means. I avoid stress because once I get worked up, it's difficult to calm my racing heart. I thought that was anxiety. Is this ANOTHER pred symptom? Adrenal related? I've gone from 80 mg to 15 three times in three years. I'm there again and generally feeling better. But freaked because this is when I flare again.

[PMRpro Ambassador in reply to Jessileigh]

When we are in a stressful situation our body normally produces a shot of adrenaline to help it cope - the "fight or flight response" most of us will have heard about at school. While we are on corticosteroids this response is suppressed - the spike of emergency cortisol isn't there and our bodies may not cope as well.

If you repeatedly flare at 15mg then you should rest at or just before that and only taper in tiny steps from there - more than 1mg per month is going to be too much and even that might be pushing it. And for most people, there is no need to go all the way back to 80mg where you started for a flare like that. If you hit it quickly and were fine previously adding just 5mg is enough for most patients and 10mg will certainly be enough. And be VERY gentle tapering further.

[Jessileigh in reply to PMRpro]

Thank you! Great explanation. My doctor and I are going at 2.5 down every 2 months. I'll talk to her about a slower taper or 1 mg a month, which actually makes more sense. But she is going by how I am feeling, and we are dedicated to slow and steady. At 15 mg, I am losing many of the prednisone side effects. So I am good with taking another year to get to 5 or 7 or wherever she says to stop. Thanks. Really great answer and explains a lot very simply. You must be some sort of teacher, or parent!

Jess

[PMRpro Ambassador in reply to Jessileigh]

I'm told I teach well - I always swore I wouldn't be a teacher But my aim has always been to make medical-speak understandable to everyone. If I have done that - job done!!

[Hidden in reply to PMRpro]

You have done that often for many of us. Thank you.

[Rose54]

Hope GP appointment went ok

If it ever happens again please make sure the Ambulance Crew take you in for blood test

I dont want to frighten you but my Heart Attack only was palpitations and nothing showed on the ECG when thay done it at home.

But thay explained the only way to know for sure was to have blood test done in hospital

.During a Heart Attack the body gives off a chemical that only shows in a blood test so I am so grateful thay never left me at home .