Just a quick question - I began DL's slow taper from 9mg to 8.5mg on Saturday 18/3/23 and suffered a migraine aura so took a sumatriptans tablet. Gradually recovered over the next couple of days. The second reduction to 8.5mg is today (22/3/23) and, again, I have had a migraine aura and taken sumatriptans. These began in abut 2008 and I originally had a cluster of about 4 or 5 of these - they were mild and about 2-4 weeks apart. They have got worse over time with an aura of about 3/4 hour and then a headache on one side, taking a couple of days to recover. This is the first time they have only been days apart and it's strange both days coincide with a reduction in pred. Anyone else any experience of this? I hate the auras as I can't talk properly and can't read and last time my hand went numb - bit frightening.
Migraine on tapering: Just a quick question - I... - PMRGCAuk
Migraine on tapering
Hi Miserere,
I don't experience migraine when tapering but I do experience some head ache/pain. Usually disappears after 10 to 14dys.
How long have you had migraines for?
Since about 2007 - initially they were just mile symptoms of an aura and no headache. Now the aura is full-blown and the headache comes afterwards - last year I also had numbness in one hand. So then started when I was in my 50s
Have you mentioned this worsening it to whoever diagnosed migraine or your GP? So it has happened twice with a reduction now and not in between? Twice could still be a coincidence regards the reduction so time will tell. How long long after reducing did it come on? How are you feeling in between?
I did send an email to the surgery some time ago - especially after the progression to numbness in one hand but after looking at Mayo Clinic's description of migraine aura etc. it seemed normal. Anyway, the dr did not repsond which is about normal for our surgery. If I continue to follow the reduction then I shall be on 9mg today and tomorrow and then down to 8.5 again on Saturday. If it comes back again then I shall start to believe there is a correlation. Thanks for responding, SnazzyD
OK, SnazzyD - appointment made to see 'someone' tomorrow. The sumatriptans do stop the aura developing but leave you worse off afterwards, I think. If I have another I'll just let it run through. BP bound to be high at the moment as I'm a little concerned about it and frustrated by our GPs
At my last rheumatology appointment I asked about more frequent migraine auras while tapering from 5mg to 4.5mg and then down to 4mg. Although I have had migraines since my teens recently I have just had the aura and no headache. Rheumatologist said she thought they were unconnected to PMR or reducing my dose of prednisolone.
10 days ago I had what i thought was a migraine aura followed by a feeling of a curtain coming down over one eye totally obliterating vision which gradually came back. This turned out to be a mini stroke. I asked what symptoms to be aware of in case I have another, and some of them are what you describe of blurred speech and numbness on one side. I think you should discuss your symptoms with your gp
I had exactly that 4 years ago, Janstr. Six auras in three weeks, where previously I only had one every year or two. GP unconcerned, didn't even take my BP. Then after a few more days I got the curtain over my eye and they said it was a mini stroke due to BP. I've been on BP meds, stating and blood thinners ever since. Frightening isn't it? All the best.
Yes it Is frightening. It’s interesting that they want me to wear a medic alert bracelet (not sure if you have them in the uk) for the blood thinners, but weren’t worried about the adrenal risk if pred stopped. I’ve read all the side effects of the statins & some resemble PMR, so they have told me to stop reducing for a while.
Thank you Janstr and AshPen9 - I will send another email and see what they say. I checked my BP at the end of Feb - 127/75 etc. although it was higher earlier in the month - usually as I have to steel myself to do it every time, so it takes a few days for me to settle with the machine. Last reading 24/2/23 was 127/66.
I assume you have your own BP cuff? Make it a routine, do it daily and it soon fades into insignificance. That is half the problem in white coat syndrom - the environment is different and that engenders anxiety which raised BP and it becomes a vicious circle.
I quite agree - once I start to take it I have to do it daily for a week before it settles. So far, always settles in the 120something over 60-80 something, which I am quite happy with - so I am hoping it is not TIA related and just an escalation in frequency of the aura. Feel so washed out afterwards and just frustrated with life in general 😀 I will give it a day before I take it although maybe the GP will be at it before then.
Just checked it - knew I shouldn't have but they will tomorrow. It is very high, so wondering whether to call 111
How high?
Just spoken to 111 - recommend seeing GP tomorrow and now have an appointment. It will be high because any time I even look at the surgery my BP goes up, but there we are. It's just that having 2 auras in a row is very unusual and makes you feel like you've been through the hot wash then the mangle so add high BP and it does begin to worry. 180/110. Come tomorrow I'll see what happens and if I can get out of there without statins or calcium channel blockers. They tried to put me on CCBs a few years ago and I was waiting for my next heart-beat and my digestion came to a complete full stop. Since then I've taken things into my own hands and ensured good diet, good cholesterol and, usually, good BP. Sorry, will stop rambling. They did admit it was a mistake, by the way.
CCBs are only one option for hypertension. Here they wanted to use an ACE inhibitor but I am allergic to them - the itchiest rash ever! The ward staff obviously didn't believe me - I mentioned it to the weekend duty consultant and I was off them pdq and they are highlighted on my notes! Instead, the second option was low dose bisoprolol and low dose Losartan - worked brilliantly and no noticeable adverse effects. Calcium channel blockers were never mentioned for me - OH was on diltiazem though.
Oh, wow. I think and am hoping this is just a blip due to the auras but suppose I have to get it checked. Doubtless they will want to put me on something but as it is normally good I don't want a heavy-handed approach. Just hve to wait and see. Glad ours are working for you, though. Thanks for responding - it's been a great help.
Hi, Miserere. I have had migraine auras, usually gone within half an hour but leaving a dull long-lasting headache, since my late 30s, a time of acute stresses (peak job stress, young children etc.). They are infrequent but I would say they often presage a common cold or when I am generally fighting something off.
I am currently reducing my dose of pred from 6.5 to 6mg and have had a couple of aura episodes lately. On the other hand, I have had a pretty awful cold that has affected my head and chest recently so do not consider PMR to be involved.
Incidentally, my wife has had regular debilitating migraines for years but has not had a single one for several months since doing the Zoe health study that identifies which foods cause the most inflammation in your body. She may be eating egg and veg for breakfast but something seems to be working!
Just a view from my world. All the best OP
I am on 3mg and trying to taper and am finding exactly the same problem. I have had migraine with aura since I was nine. I have GCA. Originally I did not have the problem but now I do.
I also suffer with headaches and fatigue when tapering, I haven't tried to taper for 3 months as my husband's health deteriorated after his last brain tumour operation on 7th December ( metastatic melanoma ) then passed away on 1st February , consequently I had a flare and Dr put me up to 20mg pred for a week, then 15 for 2 weeks then 10mg for 4 weeks, due to start DLs slow taper again next week. 🤞I take migrane meds for the headaches, they last around 5 days then I come right.
You have such a lot to deal with Kiwisufferer2019 and I'm so sorry for your loss. It sounds as though you have it under control - well done. Gosh, 5 days seems a long time for a headache/migraine to me.
The migraine medication eases the pain but it comes back the following day, I'm sure I have withdrawal symptoms, as three years ago when I started tapering I didn't suffer with headaches. They start about a week in to the taper but come right about week 3 or 4. I seem to be able to work through it, but not so great if I have anything on the social calander or am baby sitting the grand children. I also suffer with sore thighs which I never had in the beginning. I moved house in the middle of everything to make matters worse. Thank goodness for great kids and very supportive friends. All the best with your Drs appointment.
My flare after my husband's death lasted a LOT longer than that. I was really back where I started.
My thoughts are with both of you - losing your life partner has to be one of the hardest things in life. You're amazing to do so well and you give so much help, PMRpro, for which I and many others are grateful.
One good thing - I have crept in and taken my BP this morning - 125/75 - I can hardly believe it. The only strange thing is that the pulse is going like a train. I'm glad this has happened because I was trying not to look but it is a relief and I will take these readings with me today as I just know it will shoot up in surgery. Pulse 105 - weird or what?
Is it regular or irregular? Have you ever had a 24 hour Holter ECG? Arrythmias are more common alongside PMR and can be caused by the autoimmune part of PMR damaging the sinus node.
Oh, I didn't know that. I can't tell - I just know it's fast as I can feel it is and it shows up on the BP monitor. I'll rest for a while and see if it goes down before I see the GP. I didn't know this was a side effect of Pred - gosh, it is a double-edged sword, isn't it? At least the BP is back to normal and hopefully that proves that my low carb/keto diet is doing its work. If it's not one thing ... Thank you.
Pred gets blamed a lot but PMR can be the cause too - I had the arrythmia long before pred but it started about the same time as the first PMR symptoms. And of course - can cause breathlessness
Thanks, PMRpro - I'll ask about this. Not noticed it before so I am hoping it will subside.
So BP sky high in the GP surgery again. I have to take it morning and night and report the results. It was down to normal this morning. However, he says he can hear a murmer so now ECG and bloods and a scan of the heart. Never rains, does it? Thinks some of it could have been down to the triptans I had for the migraine so won't take any more of those but also feels there could be a problem with a valve.
I felt fighting fit in 2020 - along comes covid and the jab ... told if BP and fast heart rate go straight to hospital.
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