Waking up 3.30 feeling awful ....with brain racin... - PMRGCAuk

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Waking up 3.30 feeling awful ....with brain racing away

Xanthe12345
Xanthe12345

Can anyone please suggest what I can do to sleep normally. I am on lorazapam for depression and anxiety but only take 1/4 of 1mm when absolutely necessay.My legs when I get up are like jelly. I upped my steroids from six to eight about three weeks ago. My doctor ordered bloods a fortnight ago and wants them done again this Tuesday

I wondered if I took a 1 m steroid before going to bed it might help. Does anyone else have this problem. Seeing my doctor on the 11 Aril but it seems ages away. Sorry to sat its me moaning again!

Patx

35 Replies
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PMRpro
PMRproAmbassador

When you say "upped from 6 to 8 steroids" I'm assuming you mean tablets and each is 5mg? So you are on 40mg/day of pred? I'm afraid it is unlikely you will manage to sleep "normally" on that dose - that's just the way it is unfortunately.

You can only reduce all the things you are trying to do and treat yourself as a poorly person - which, if you have GCA, you are. Try to rest, even if you can't sleep and try meditation and listening to relaxing music etc.

It is the steroids that are causing the problem so taking some before bed is unlikely to help. Some people have found using one of the Nytols works, different ones for different people, so maybe try that. Sometimes a sleeping tablet helps - but there is the risk of becoming dependent on them so only ccasional use is recommended, just to break the pattern. What dose of the porazepam does your doctor suggest? Maybe a bit more very occasionally might help.

Xanthe12345
Xanthe12345 in reply to PMRpro

Sorry I should have said 8 1mm tablets is what I am taking

PMRpro
PMRproAmbassador in reply to Xanthe12345

Then can you tell us a bit more - your diagnosis, how long, dose and so on?

Xanthe12345
Xanthe12345 in reply to PMRpro

Hi I am into my twentieth month of pmr and not had any real problems till Jan of this year when I had reduced to 6mgs and had bronchitis for a month and was prescribed 2courses of claryithmycin . It was starting the second course when I had my first panice attack. My doc prescribed me prozac twice and I wouldnt take them.....mainly reading the side effects and the fact they wouldnt work for 3-4weeks. Saw another Doctor who prescribed Lorazapam which took the edge of but caused bad dreams. I also seem to be running a temperature sometimes during the day.

Hoping Tuesdays bloods might show something ....creattine levels are a bit high.

Thanks so much for your kind help

Patx

PMRpro
PMRproAmbassador in reply to Xanthe12345

You might find this thread on another forum interesting:

patient.info/forums/discuss...

I don't think it is the pred doing it - the clarithromycin was probably the culprit.

I know they tell you that Prozac doesn't work for weeks - it isn't always the case. It helped me in a couple of days when I needed it many years ago. And as long as I was on brand Prozac I had no side effects at all. Different matter with the generic! But SheffieldJane's advice is absolutely spot-on.

Soraya_PMR
Soraya_PMR in reply to PMRpro

Wowee! Those are some side effects to clarithromycin! Interesting thread, thanks.

PMRpro
PMRproAmbassador in reply to Soraya_PMR

It is also not ideal given alongside pred - as it increases the effects of the pred. Had Xanthe been on a higher dose of pred the combo could have caused a lot of problems. I'd hope 6mg was low enough not to - but who knows?

Xanthe12345
Xanthe12345 in reply to PMRpro

Thanks so much for your advice.... my husband has always said it was the clarythimicin that started my attacks. Although it has been going on since feb 2nd 2018. Would have hoped it would have gone by now. Once again Thank you for being my lifeline

Patx

Hidden
Hidden

Hi

Sorry you are walking with a brain spin. It's not pleasant. I wouldn't have thought more pred would help as I slept worse on higher dose. The lorazepam may decrease the amount you sleep and the quality of sleep. Depression and anxiety can profoundly affect you in terms of night time attacks. You need to discuss the problem with your Dr and try relaxation techniques. There are plenty to be found online.

When I had night times attacks I found it better to get up. Have a warm milk and banana if sugar not an issue (or turkey) and watch daft tv for 30mins. The tryptophan in the milk etc usually helped me.most important of all is that you need to breathe slowly and deeply. I hope you feel better and sleep better soon.

PMRpro
PMRproAmbassador in reply to Hidden

Lorazepam is often USED for sleep problems.

Hidden
Hidden in reply to PMRpro

Yes. I know. It's a conundrum. I think it stops the deep cycle of sleep or at least shortens it for some people. Suppose it's like paracetamol giving some people headaches.

Hidden
Hidden in reply to PMRpro

The trick is probably to take more and hope that gets you into the next sleep cycle without waking.

PMRpro
PMRproAmbassador in reply to Hidden

Suppose...

Hidden
Hidden in reply to PMRpro

😂😂

Hi Xanthe12345, I am really sorry that you are suffering this way. The last time I had early hours waking with my mind racing and increasing anxiety because I wasn’t asleep, was long before PMR and Prednisalone. I was however, doing a very difficult job with one or two less than helpful individuals in my team. I decided to put myself into talking therapy ( a Gestalt Therapist). Apart from listening to me, she would do helpful role plays with me. This enabled me to deal with difficult people and situations in a much more constructive way. It may be that you have genuine reasons to be anxious and depressed and getting to the root cause really helps and the strategies for coping last forever.

My insomnia from taking Pred was different., a more chemical thing. I was prescribed 10 mgs of Amitriptylin that I take an hour or so before bedtime and much to my surprise it worked. It just seems to make my body feel more comfortable. I’ve also lost the habit of going to the loo in the early hours ( it was a habit). Having taken early retirement and paused voluntary work, I always think I can catch up on sleep in the afternoon. Anxiety can latch on to anything - I don’t want the postman to catch me in my pyjamas. How funny is that for a place that free floating anxiety can settle?

Have you checked Lorazepam side effects? Not all drugs suit everyone.

Good luck! Phases like this are horrible. It will pass.

Hidden
Hidden in reply to SheffieldJane

I agree that the things that set off anxiety and panic ..particularly between 2-5am are off the wall. I had a spell where conversations or events from 20plus years ago would send me into a weird place. The day after I could barely remember the event that seemed so clear in the night. I now tell myself that i wull deal witb it in the morning and count backwards from 300. Mostly that works. But I try not to worry about being sleepfree and that drops the anxiety. But I am lucky to be in a position to rest the day after.

Hi xanthe. Sleep—-less nights have been common for me..more nights than not.

I echo Poopadoop’s suggestion of a cup of warm milk (with vanilla,etc), and a small snack. Sometimes empty tummy signals wakeup.

After my cup of warm, I spend my awake time with a very dull little read that lets my brain focus on something other than being frustrated about being awake. My current genre of nitetime read includes “cozy” mysteries that usually include a shopkeeper and an off-screen murder, which shopkeeper and her trusted cohort set about solving. Soon I am nodding off, and time to turn out the light.

Good luck.

Thanks so much x

Hi Xanthe12345 - I cannot imagine that you are on your own with this problem. Many people on this site have mention poor sleep as a side effect of taking pred for PMR. I personally sleep very poorly and spend most nights reading beside a snoring husband. I can't suggest anything helpful - or I'd be doing it myself - but perhaps there is comfort in knowing you are not alone!

Hi Xanthe12345, I hope by now you have a solution to being unable to sleep. I wake at 2am to take my pred and once in a while cannot get back to sleep. I started taking a low dose of melatonin when I first go to bed and it helps me get into a great slumber. It doesn't knock me out so that I can still function when I get up at 2am for meds, but it is more like that nice nap one gets when laying in the sun. (Those were the days!)

I can only say the I had a severe reaction to lorazepam and didn't figure it out for a long time. Made me depressed. and anxious. perhaps you could just try a small dose of melatonin. (gummy form is yummy) I only take 1/2 or 1/4 of 1 to sleep and it works. And I only take it as little as possible. I think the reaction I had to the lorazepam was called paradoxil. but I am not certain. In any case. that was my problem! I would never take it again and had it put on my chart at the doctors because I know it is freely given especially to older patients for anxiety. I found this: Benzodiazepines can cause or worsen depression. ... Paradoxical effects: In some cases, paradoxical effects can occur with benzodiazepines, such as increased hostility, aggression, angry outbursts, and psychomotor agitation. These effects are seen more commonly with lorazepam than with other benzodiazepines.

Hi Xanthe,l really sympathise with you,l also have trouble sleeping,l never sleep all through the night and my brain just does not seem to switch off,last night l did not sleep at all. This makes me feel very tired during the day and does not help the brain fog, I have found that just one paracetamol can help me sleep but l only take that accasionaly as a last resort.l am only on 3mgs of preds so it should not be those causing a problem. I also do not eat chocolate or anything sweet after about seven pm as sugar seems to make my brain overactive.l hope things will improve for you .

Thanksgrants....it always helps to know you are not the only one

I am 70 years old and have had an anxiety problem on and off since menopause. I had it under control until prednisone came into my life. The first three weeks were great. I had a ton of energy and no anxiety. Then the anxiety hit again and I think some depression too. It got to where I would wake up in the night in total panic. My doctor prescribed lorazepam and nights were still awful. I got to where I dreaded going to sleep because I knew how I would be when I woke up. I finally was prescribed remeron at a 7.5 mg dose last week. That is 1/2 the usual dose. I started sleeping through the night right a way. I never take the lorazepam at night now and I’m sleeping better than I have in a long time.

Xanthe12345
Xanthe12345 in reply to Lanakay

Thats exactly how I am...will mention it to my doctor next week. Thank you

I use a Maryjane oil spray under the tongue before bed--allows me to get to sleep and gets me through the night. I am 70 and haven't done this in a half century but it works for me.

Never heard of Maryjane oil.....sounds good though

marijuana

Hi Pat, just a few ideas;

Maybe you might like to check out Dr Michael Mosley's postive (a chronic insomniac) experience with talking PREBIOTIC Powders before bed. They worked well for him...

Also check out the Importance of PROBIOTICS, such as fermented vegetables ie/ your own homemade sauerkraut etc... Plus with dairy or water based Kefir...all Probiotics. They all play an important role in good gut health.:80%of our Immune System is housed in the gut... Unbeknown to us, gut issues and gut inflammation play a big role in Depression...for this check out the excellent Dr Mark Hyman he had great deal of guidance to offer on this subject.

You can also look up Kefir and find a site that has somebody testify that six months after taking kefir their eczema, depression and IBS are all resolved- gone!!

Take care of the gut No1... and everything else will improve.

Best of Luck,

Poppy the 🐈

Thanks Poppy for advice...I have made a start by taking yakult and yoghurt with my preds and stopping taking losec for a while. Slept a lot better last night. Watch this space

Patx

That is great. It is such a relief to sleep.

However, you can 'pump it up' as Elvis Costello would say!

You could make your own probiotic kefir drink that would have billions and billions and billions of the positive wee microorganisms...

And to help feed these beneficial wee beasties and allow them to get well established in your gut in order to benefit from them even more... You could also support them with Prebiotics; which are considered to be the ' manure' that helps feed these wonderful Probiotics. Think of these PRObiotics as being Pro Us and on our side.... And think of the PREbiotics as coming first, PRE!

Good natural source of Prebiotic fibre is Red Chicory, you can eat it raw.... Or if you prefer the powders, you can search for Prebiotic Inulin powder as used by Dr Mosley on his programme on TV.

Hope I have explained it well enough!

Best Wishes,

Poppy the 🐈

PMRpro
PMRproAmbassador in reply to Poppy_the_cat

Is it all forms of radicchio (which is what they obviously call red chicory here, just that is one of the 3 very red variations available)? We have at least half a dozen sorts and I love the really red ones. Lovely grilled/roasted!

From what I have read, Radicchio Rosso seems to be the front runner for having the highest amount of inulin, yes our red chicory... bouncing about in the bus... trying not to make typo errors! Your grilled Radicchio sounds scrumptious!! I must try it!

Thanks.

Poppy 😉

PMRpro
PMRproAmbassador in reply to Poppy_the_cat

Grilled Little Gem lettuce hearts are ace too - just not red! Make a lovely low-carb base for a meat sauce for example...

Stop it! I'm on the bus and I'm drooling!!!

I shall try it tonight definitely!

Popps x

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