Another frightening thing is happening to me. - PMRGCAuk

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Another frightening thing is happening to me.

Lanakay profile image
32 Replies

For about the last week I have been waking up anywheee between 2 and 4 in the morning feeling really weird. It is so bad I can’t stay in bed. It feels like a panic attack. I’ve been having a flare so the last two days I’ve taken 5 mg is prednisone in the morning and 5 with dinner ( late afternoon.) about a week ago I started waking up feeling in a panic sometime between 2 and 4 am. When this happens I wake up and immediately feel as if I am having a panic attack. My heart rate appears to be normal. My stomach feels upset. I feel warm and sweaty. I know I should call my doctor but don’t exactly know what to say. I’m getting so I dread going to sleep because I know this is how I’ll wake up. After the first couple hours of being up I feel perfectly normal. Don’t know what to do. Later in the day I’m fine. This is interfering with my sleep. Any ideas? I only have one cup of coffee in the morning and no other caffeine. Again I’ll say that after the first couple hours I feel fine. Yesterday I worked at my part time job and came home and fixed dinner and had a visit with my daughter. I was very tired and went to sleep about 11 and then woke up yet again a little after 3:00 am like this. When I wake up like this it scares my and that makes it worse. Any ideas?

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Lanakay
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32 Replies

Waking up in a panic is something I used to get pre pred. A combination of meds and different physical illness left me having to repeat who I was out loud in the middle of the night in a panic. I would get up and walk around until it stopped... Have a fruit tea and put the TV or radio on. It was usually indicative of some aspect of my life being in chaos. It eased once I accepted or stopped the chaos.

My sister who has no health issues went through a 6 month to a year when work was stressful and we had lost my dad. Her husband was supportive and when she had these attacks he used to walk around the streets in the fresh air with her until she felt better.

Lanakay profile image
Lanakay in reply to

Thank you. I never thought all this was stressing me out but could be. My OH has just resorted to using a walker. His legs are bad and he is too heavy I know. But I can’t control what he eats, I don’t do a very good job controlling what I eat. Also having some work done on our house and it’s time to do income tax so I guess I could be stressing out but I really didn’t feel like that was it. But maybe. Dealing with the limitations of age isn’t easy.

in reply toLanakay

They sound like stress things! Sometime consciously we don't realise how it's impacting but our brains try and tell us. I hope you can do relaxing rests to stay nice and calm.

jinasc profile image
jinasc in reply toLanakay

To help control weight, without it being obvious, ditch the dinner plates, hide them if necessary. Then use 'Ham' size plates. When you put the food on the dish, it looks a lot and fools the eye. If you use dinner plates, for all you feel full, your eyes are telling you there is still food. Sort of a hangover from when food was not abundant and you ate the lot when you had it.

This tip came from a Lead Diabetic Dietician and it worked for people with both Type 1 and Type 2, in fact the Type 2, within a year no longer had diabetes and the Type 1's lost weight. The rest, who did not have diabetes, controlled their diet better and lost weight.

Try taking your pred as near to 2am as you can around this time is when your adrenal glands would be starting to work for what you need the next day. If that does not help, keep a pot of yoghurt and when you wake up early, use the yoghurt and take your pred and snuggle down to give it time to work.

If you want a copy of the whole article, send me a PM.

BTW putting a paper bag over you mouth and breathing in and out of it, can help the panic attacks to subside.

Blearyeyed profile image
Blearyeyed in reply toLanakay

Don't forget that Stress isn't just Negative or Pressure activities. Stress is any activity done by your body or brain that is more than it can cope with. This is Positive , Fun Activities that you enjoy too. So if you have a lot on it can all be creating Stress in your system .

The timing suggests it isn't a Panic Attack although the reason it is happening will be partially linked to an increase in Stress and some Anxiety. Your Waking and Palpitations could be related to your Cortisol levels and the recent change in your Medication and Flare , the Flare will also be made worse by doing too much , rather than Caffeine.

Sudden Waking and Palpitations and Flushing and Stomach Upset can happen to anyone with Medication which affects your Adrenal / Brain output as it affects the Autonomic Nervous System . This isn't just involved in ' Fight or Flight' jobs in the body but your ' Rest and Digest' jobs too. Sudden Waking can happen when you have an increase in Pain during sleep ( any Pain , not just PMR) or if your body is involved in dealing with an internal job that causes a disturbance in sleep and needs it to increase your heart rate , or , it causes an increase in body temperature which the body finds it hard to cope with at the same time as keeping you asleep.

By the time you wake and are alert all the symptoms are firing at once which makes you believe that it all happened with a start after you woke up rather than the fact that you body some you as it was trying to cope with something that it felt it needed you to wake up to help it control.

Your concern about it happening will add to your symptoms and keep you awake longer and make it more difficult for you to go back to sleep.

Taking your split dose at an earlier time might help. Reducing your Activities and trying Relaxation Techniques will definitely help. Sipping some cool water on waking reduces the Palpitations and using some deep calm breathing and just allowing yourself to cool off in bed can help you get back to sleep more quickly after a Waking Event.

If you can't get back to sleep quickly , get up have a little stretch but get back to bed quite quickly , settle and try again , don't be tempted to get up and start doing jobs or using your phone or computer, but just allow your body to eat in bed even if you can't go back to sleep.

You may find when your Flare decreases and you have added more rest or relaxation / breathing periods in the day that the symptoms will go . If not , and it continues despite these efforts then it will be worth seeking help from your GP.

in reply toLanakay

Hello Lanakay, I believe you're suffering from stress too. Amazing how our brains behave, then affects our bodies. I too get extremely stressed having been diagnosed with PMR Dec 2019. But trying hard to put everything into perspective. There is nothing we can do about about preventing this disease so I guess we just have to go with the flow and just try and relax....easy for me to say as I'm one of the worst people to advise anyone. I started Pred on the 20th Dec 2019 and as from tomorrow 1 Feb 2020 I'll be starting to taper by 1 mg per month. Hopefully, I will be fine, but not holding my breath !!

I do hope you soon feel better and get a decent nights sleep.

Regards

Anne

in reply to

Forgot to say I was started on 15 mg initially, but due to lack of sleep my rheumatologist reduced to 10 mg, which I've been taking since Dec 2019

Anne

Suet3942 profile image
Suet3942 in reply toLanakay

I’m the same Lanakay. My husband has got early dementia and I’m worrying myself silly about the future. It’s horrible isn’t it. ?

Lanakay profile image
Lanakay in reply toSuet3942

Yes. We live away from the city and I don’t know how I’ll manage if he can’t get around anymore. I hate to call on the kids unless I absolutely have to. It is a big concern for me. Old age can be a bit frightening!

Suet3942 profile image
Suet3942 in reply toLanakay

Definitely.

deadeye1966 profile image
deadeye1966 in reply toLanakay

Hi..I'm new..but I used to suffer terribly with these attacks as you do..as strange as this sounds..and after trying many things..I read an article that said..Chew Gum..I did..and it worked! The more panicky I felt..the faster I chewed..the interaction of chewing interrupts the brain from allowing the attack to happen..once I knew that I could control this..I carried Gum with me for a long time..even when I didn't have to chew it any longer..I was..and am free..you can do it too..🌷

Lanakay profile image
Lanakay in reply todeadeye1966

Than you. I will definitely give this a try!

SheffieldJane profile image
SheffieldJane

It does sound very like anxiety. The trouble can be, in my experience, once you say that to a doctor they tend not to look any further ( e.g. stress, anxiety, depression). I wonder if it is down to your late afternoon dose of Pred. ?A split dose has never suited me, taking 5 mgs late afternoon would make me feel pretty wired. I often wake up at about 3.30 am and I feel fine, in fact possibly better that I feel all day. I was putting it down to Adrenal function ( I am on 4 mgs), This has been going on for months. Are you planning to go straight back to your regular dose soon? Or will you taper?

Does this symptom coincide with taking an extra 5 mgs late afternoon ?

Did anything stressful happen about a week ago? My children/ grandchildren worry me more than anything else - is your daughter on your mind?

The trouble is this sort of symptom can be come self perpetuating. You worry that it is going to happen and that triggers it happening again. You could experiment with taking your Pred as a single dose, in the morning. You are likely to find the solution yourself or it will just fade, to be replaced with something else. You could try the doctor and resist giving him/ her your analysis and see what they say?

Good luck, panic attacks are the pits.

Lanakay profile image
Lanakay in reply toSheffieldJane

I’m thinking about what you said. I’ve always split my dose and it was ok but I think I’ll try it all at once and see if that helps. However this started before I went back up to 10mg. We have had to put on a new roof and now I have to have a new furnace. Also having some work done in the kitchen. My husband just started having trouble walking. And it’s tax time and I’m the one who does that. Maybe this is panic. Thank you. I didn’t know this happened to anyone else.

SheffieldJane profile image
SheffieldJane in reply toLanakay

That is quite a combination of stressors Lanakay. Perhaps you could explore ways of bringing the stress levels down. A mindful exercise to replace the ratcheting panic could be helpful. It replaces the catastrophising thoughts. I did a very useful course that has stayed with me. You are possibly having a very logical anxiety attack in response to all that you have on your shoulders right now. Experiment a bit.

Lanakay profile image
Lanakay in reply toSheffieldJane

Thank you. I’ll give it a go!

SnazzyD profile image
SnazzyD

Not surprised you don’t want to go to sleep. How long does it last? Does it suddenly stop or just fade gradually? Just a thought, could it be low blood sugar after a spike earlier on from the 5mg dose?

Lanakay profile image
Lanakay

This morning it didn’t last as long. I got up. Took off my flannel nightgown and wrote on here. Then I fed my cats, started the Roomba, and continued with my morning chores. Now I’m having a coffee and have turned on the tv. I feel fine now.

scats profile image
scats

Thanks for posting this, my husband has the same problem and it helped him. to hear someone else had it too. The replies have helped him too.

Since pred I have often woken at night but if I can't sleep I just get up and do something to keep my mind occupied, even if it's only TV.

Hope you get this sorted soon.

Lanakay profile image
Lanakay

I am so happy to see other people know what I’m talking about. That’s the thing about this wonderful group. I never have to feel alone. Guess I’ll quit fighting it and get up an on with my day. Later I can rest when I need to.

BonnyQuine profile image
BonnyQuine in reply toLanakay

I feel the same about the group, Lanakay.

Sleep always was a problem, but much worse on pred. Then the stressors . . . . In my case, my OH has just had a pacemaker inserted - yesterday. So he'll be fine now w any luck. But our Xmas Eve was v traumatic - A&E -> ward, and then there were no doctors around over the festive season, and he discharged himself until he could have the treatment. "Don't worry," he said. But I kept waking in a fright to check that he was still alive. This January has been even more difficult than usual! What next, I wonder.

As you say, 'fighting' doesn't help. As usual, acceptance is probably key. I also have a 'siesta' when I feel the need. Am planning to try mindfulness - will look for a course as suggested by SJ. And aim for things improving w the onset of Spring.

All the best.

tangocharlie profile image
tangocharlie

Sounds like sleep apnea - I have it and it's common with people who have autoimmune inflammation going on. I didn't believe it when my rheumatologist mentioned I might have it - but I did the tests run by the sleep clinic where you take a monitor to wear overnight and it showed I did have it quite badly without realising.

Lanakay profile image
Lanakay

Thank you. I will definitely mention it to my dr. My husband has it and has I mask and machine he uses at night. He used to snore something terrible. I don’t snore though.

Spanky2019 profile image
Spanky2019

I'm no expert, but have had gca among other illness for awhile now. I've been on high or moderate dose prednisone most of the last year. Anxiety and crying outbursts (which is something I've never done) went away when I started taking prednisone at night. I have never split dose whether its 80 mg or 25 mg. Hot bath helps some of my pain. I don't work, hubby does a lot. And I have learned to relax and not feel guilty. It's a difficult disease- you never know what's going to happen to your body next. Hope you feel better soon.

PMRCanada profile image
PMRCanada

Not sure what your previous dose was before you went up to 10mg. Depending on the size of the jump, this can certainly clause insomnia, night sweats, etc. I’m currently trying to get a handle on a flare and am trying a pred burst. Was on 9.5/9 and had to go up to 13mg, which cause a return of the symptoms above. I also know the higher dose I’m on, the more I am impacted mentally (a range of emotions from irritability, to worry and sometimes even a feeling of panic).

Not sure if you have a sleep aid of some sort that would help?? I vape an indica dominant cannabis and helps with sleep. Sativa stains help calm/stabilize moods and provide a feeling of euphoria, and my worries remain in check.

Hope you get some relief!

Lanakay profile image
Lanakay in reply toPMRCanada

Thank you for your suggestions. Unfortunately I don’t live in a state that has made marijuana legal. I have tried three different brands of CBD but they didn’t help me at all. I really wanted it to!

Ciar profile image
Ciar

I have had terrible anxiety and insomnia recently, and sometimes wake feeling similar to what you describe. I found several apps online to help insomnia and anxiety, mainly using guided meditations . My favorites are Glen Harold and Insight Timer. Not a cure, but do help a lot, for very little to no investment.

Lanakay profile image
Lanakay

Thank you. I will try that.

Xanthe12345 profile image
Xanthe12345

Hi Lanakay have you stopped taking Mirtazapine....I stopped for four days and started waking early hours with terrible panic attacks! Started back and after a few days they were gone. I am also on a ridiculous low dose 1.87 after slow slow taper. Really never thought that low dose would make that much difference ....it really did

Lanakay profile image
Lanakay

Thank you so much. I did try to cut my mirtazapine dose in half. Maybe you are right and that is what caused it. . I was also waking in the night really panicky. I see my doctor Friday.

Xanthe12345 profile image
Xanthe12345 in reply toLanakay

Do mention about halving your dose! I reduced from 15mg by slowly cutting a small piece of each daily tablet until I got to 7.5. Then cut dose in half and quarters. Not easy to do but it helped me get down the dosage. Stuck on low dose but happy with that. I stayed on each dose for at least 4 weeks.

Sorry bit long winded ......but know how frightening those panics in the night are🙈

All the best

Pat

AndrewT profile image
AndrewT

Dear Lanakay,

I haven't read anybody else's replies.... I'm going to be Blunt here, go to see your Doctor NOW. As regards 'What To Tell Him/ Her- how about what you have Said on here?'

I'm NOT 'normally' this Blunt but......

AndrewT

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