Trigeminal and Restless legs

[Predderman2020]

As I posted before some months ago, I had some electric shock-like, sharp pains in my left temple. With a similar sensation if I touched that area.

I feared the worst (GCA), and upped my dose and within 24 hours had had a biopsy, as you know, which revealed nothing. I was reassured. Since then I have looked up Trigeminal and seen that this pain is not entirely confined to GCA, but that should, of course, be the very first concern.

And thank you to everyone for helping with that worry.

6 weeks ago (16th July) I had sudden terrible headaches again, and extremely restless legs - fatigue and nausea. I suspected COVID because I had been travelling but tested negative, twice. I didn't take those tests as gospel, and assumed this would pass or become obvious as Covid. The sensation has gone up and down. Along with a general feeling of being very unwell. The restless legs at night are phenomenal, especially after some small amount of exercise. But worse, commensurately, with more exercise.

I am currently on 7 mgs. Tapered from 10mgs on 25 June, to 9.5 till 4th July, 9.00 till 10th July, 8.5 till 19th July, 7.5 till 16 aug,and now at 7.00mgs . Probably too fast.

My question is - are these restless legs common? They are horrible.

And Trigeminal is Inflammation ... so that would fit?

I may have over-tapered, of course?

I always think I have learned enough to answer the questions myself, but ... No, as it turns out.

Thanks, once again.

[PMRpro Ambassador]

Did you have those headaches checked out at the hospital? They may have been symptoms of a stroke or cerebral bleed. And that could cause neurological symptoms.

How is the Mrs doing?

[Predderman2020 in reply to PMRpro]

She is better every day - thanks!

No I didn't. I was just grateful after a day in hospital that GCA was not forefront.

In Greece I can get an MRI for very little. That would be a plan for next week.

How about those restless legs. Has that come up before - excruciating!

[DorsetLady PMRGCAuk volunteer in reply to Predderman2020]

Often discussed on here -there are some related posts - this one from a few months ago will bring up more -

healthunlocked.com/pmrgcauk...

[Predderman2020 in reply to DorsetLady]

Thanks, DL - most useful for the RLS. T

[PMRpro Ambassador in reply to Predderman2020]

That is why I asked about the possibility of stroke - if you hadn't had RLS before the headache, it is a distinct possibility.

Good to hear she is improving!!!

[Predderman2020 in reply to PMRpro]

Yes, very nearly normal. Such a relief.

Is a checkout for a stroke an MRI. What should they look for. In Greece I can get an MRI for very little (privately) with a report, if I tell them what the investigation should look for. Pain is v v bad without regular migraine pills. Thank you.

[Holidaytime89]

Restless Legs is horrible. I’ve found magnesium citrate taken before bedtime works really well. I did try magnesium supplement tablets - but this didn’t help…. not sure why - but I think magnesium citrate is more easily absorbed.

Also to add that since I was prescribed Omeprazole (with pred) the RLS got progressively worse - I now realise that Omeprazole can cause magnesium deficiency so GP said I could reduce the dose from 20mg to 10mg daily.

It’s the last thing you need when you are ill to not be able to sleep because of RLS.

[Predderman2020 in reply to Holidaytime89]

That is true. Thanks for the advice

[RachelJDH]

I so sympathise. I too suffer from RLS which, when bad is almost unbearable - it seems worse if i eat late or eat something sweet ( tho that could just be guilt) also alcohol doesn't help. I have tried magnesium which may work a bit but not a magic bullet, I wonder how much is absorbed by the body and doesn't go straight through. I did read that lack of iron is also linked to RLS so I took a low dose of a multi vitamin with iron and that did seem to help a bit. My best cure is to get up, drink a diuralyte and do the ironing and usually by the time I have finished it has largely gone and I go back to bed. There is also some thought that Seratonin might have something to do with it. I rarely get RLS during the day. My latest attack started when I increased my Pred by 5mg to cope with a flare. I raised it with my doctor last year and he prescribed quinine but when I read the leaflet it said it takes 6 months to work. Gin and tonic (without the gin, of course) ... My daughter suffers from TMG which is horrible pain and Amyltriptalene does work. Good luck with the RLS - please let us know if you find a solution as we are all desperate or join the night-time ironing club.

[Predderman2020 in reply to RachelJDH]

Will do! Thank you

[Pippah45]

I agree about restless legs and Magnesium - you can buy a spray to put directly on the legs but I take a supplement. The other thing that sets my legs off is anything with Aspartame in it. A few years ago a friend and I cycled to a pub one Sunday and sat down to enjoy G & Ts - within minutes I couldn't sit still - legs all over the place. Went to the barman and asked if he had given us slimline tonic. He had! Cheeky so and so as we hand't asked for it! Even the Schhh you know who - put aspartame in their "original" tonic which I find shocking.