Hey y’all,
Forward motion went in reverse this week. Panic attacks! What is this fresh hell??? Never had them before but if it was a panic attack (several of them) it felt like my body was being turned literally inside out. I have not done anything different, so I am at a loss on this one. Any input appreciated 💕. fm
You have all my sympathy! I went through a phase of these when I was young and found it truly terrifying. I was eventually diagnosed with Graves’ disease and Thyrotoxicosis. I think the Panic Attacks were the forerunner of an over active thyroid gland. I know that when I have felt jittery and anxious with Pred that it reminds me of the feeling and if I didn’t rationalise it, a panic attack could be triggered. I also notice that there is a correlation with what is going on in my life as well. So have your thyroid levels checked, be mindful of stressors in your life and employ the usual relaxation techniques. If this becomes really problematic, see your doctor.
Great advice. My next rheumatology appointment is in a month so I am going to insist on some adrenal/thyroid tests. I have really been working on the stress thing but sometimes there is some hidden stuff our brains are having trouble with I guess. I will work on being more mindful.
Thanks
I was a weepy worrier until my adrenals started to kick in.
How do we know when our adrenals kick in.?
I'm on 8mg after reducing from 25mg
( which I started 10 months ago )
76 years young 😀
No easy answer. If you absorb most of your Pred, 8mg is still too high. When I got to 7mg it felt like I had not enough Pred to deal with the day but too much for the adrenals to get the message. By 5pm I was weepy, anxious and depressed, cooking the family dinner through tears. That eased once I got to about 5mg but I still couldn’t cope with anything extra and would just lose all my energy for no reason. Anyway, it got gradually better, the crying stopped and I had longer spells of energy. By 3mg I feel so much better and not worrying about going out and suddenly feeling I had an empty tank. My Endocrinologist thinks that below 5mg is when the adrenals start to be really challenged to wake up. As we all know, medical opinion differs from doc to doc.
Thank you so much Snazzy for a speedy reply.
I have my son and his family ( wife and three boys under 9 years) coming for the weekend...
I have been feeling a little under the weather today, And trying to gather strength to start cooking. Bit like a mini panic attack.
Just getting over my second bout of flu/ bronchitis so that's probably my lack of enthusiasm to go into the kitchen.
YuliK
Can’t they cook? Do they have flu and sluggish adrenals too? I know we have standards as hosts but sometimes they have to slip in the interests of getting better.
That was my thought exactly .
When you are already still recovering from being under the weather from other health issues or infections , and you have visits coinciding , much better to get the rest to cope with the energy you need just to socialise not add to your fatigue by running around the kitchen.
Get rest , have an early night and let them cook, or get a take away, and let them pamper you when they visit instead.
Or the fatigue will hit twice over and there Flare inducing Dragons lie!!
I'll add my tuppence-worth: they can help cook or they can eat bought cake - and takeaway pizza or whatever. When I have visitors we have very simple food or we go out for pizza at least one night (if anyone is really knackered we get takeaway and this is Italy). This xmas we got the restaurant in the village to do takeaway from the menu - Wienerschnitzel and chips which is the reason for going out to the place anyway.
If they don't like it - they can do the other thing...
What's your pred dose? I went through a stage of feeling oddly panicky (wouldn't call it a full on panic attack, more an overall feeling of serious unease but serious enough that I asked about it on the forums) at about 7 mg, no apparent cause. Lasted about three weeks and I now think it was caused by adrenal glands kicking in, or maybe being slow kicking in as my dose was tapered.
Hi, I was diagnosed GCA January, 2016. I have been under 7 for over a year now. Whenever I get close to 3 it all falls apart. Right now I’m at 4 and my body seems happy here. Frankly, I’m tired of trying to go any lower. No 0 club here, tired of the roller coaster.
I, too, have trouble getting to 0, and think it's just because the disease continues to simmer, and I have to accept that I'm lucky to be able to get to about 2.5 and need to accept it is what it is and maybe next year it will be better. I think you and I are both at a low enough dose we really don't need to worry. It seems like it would be a good idea for you to get thyroid, etc checked, though, as your feelings are emerging now after being at a low dose for some time.
I find I can feel anxious when I am reducing. I think cbd oil helped me but haven't needed it for awhile.
That's interesting as I had a real over reaction panicky response to several minor things last couple of weeks. Didn't like it at all! I had just started the first taper down by 2.5mg could explain it .
I wish I knew more about it but my understanding is cortisol is an important part of the body's response to stress.
Cortisol is called the “stress” hormone! It can help control blood sugar levels, regulate metabolism, help reduce inflammation, and assist with memory formulation. It has a controlling effect on salt and water balance and helps control blood pressure.
So if there isn't enough cortisol does adrenaline have more effect on us?
It is not that there is not enough cortisol it is just that the steroids create it rather than the adrenal glands. They may even create more than the body normally would. I have often wondered if it makes any difference.
So that's why my memory is so bad 🤨
I gather that it can happen in adrenal insufficiency but is unusual so not often talked about. I think getting a synacthen test would be a good idea- tells you the baseline cortisol as well.
I had a few panic attacks in the early years of PMR - not the pred then but maybe the inflammation?????
Sorry that you are having panic attacks,l cannot add to the previous good advice and l hope that you will feel,better soon.l find that the pred can cause agitation when things are worrying me ,especially when having to increase the dose,ATB.
Great advice above , definitely get it tested .
As has been said already ,get your thyriod checked . Its possibly a factor 'along with all the other problems we have with this illness ,We forget the things that also happen anyway . I got in the habit of blaming everything on the PMR .
Hi, since my Pred was down to 5mg I have had anxiety attacks (I wouldn't say as sever as panic, but not normal for me ) an anxious thought, such as forgetting something fairly important makes me go hot all over and start to sweat, just like a menopausal flush. Then I feel shaky and a bit confused. I think that my adrenals have not kicked in yet. I have devised a none scientific explanation which might give you a giggle if you think of it when you are having a panic attack.
Normally your adrenals bring on a normal 'fight or flight' response, when they are not working, they bring on a 'lie down and die' response.
But seriously, for some it can help to acknowledge your panic attack, tell it you know it is there and you are not going to talk to it. It is not you, just an unwanted gift from your meds.
let us know if you get tested, I hadn't thought it might be anything more than adrenals and I am getting those tested in June if I can below 4mg by then.
When I start to get that anxious , panicky feeling and palpitations , or I feel that sense of nervous doom , and I check and know it isn't related to my BP I have some steps I use to calm down my emotional response which might help.
First I ask myself is there an actual reason for my emotional or panic response.
If yes, I remove the trigger and count 10 and breathe so I don't react inappropriately and make myself feel worse, and count and breathe it out.
if no , I realise I must find a comfortable place to lie or sit and make sure the room is a comfortable temperature, and I have a big cool drink of water at hand.
Then I breath slowly and deeply in the nose , hold for three, and then slowly let the breathe out of my mouth a d nose , and repeat until I begin to feel calmer.
At the same time , I concentrate on thinking of something peaceful that has a slow pulsing movement , like a bubble gently bobbing away with the fear up into the sky , or a boat bobbing on the lapping and ripples of a lake.
This helps calm your heart rate.
I also distract my neuro receptors by holding gently on to the lobe of my right ear as I do this , slowly releasing it every 30 secs or so and repeating.
I also take off my shoes and socks place my feet on a fluffy rug , blanket or jumper and slowly clench my toes in and out allowing the fluff to gently move through the toes , bizarrely this is very effective.
The cool water is sipped slowly as you begin to calm down a little , another distraction for the neuro transmittions , reacting to the coolness going through your chest also helps reduce your heart rate. A Cardio health tip.
If you have any soothing aromatherapy oils putting them on your wrist and neck pulse points helps too , or light a candle. Calming smells do help relaxation.
No other outside stimuli , no music , TV , turn off the phones and computer , get rid of the family from the room. Turn the flights low or close the curtains.
When calm , don't just get up and start as norm again , give yourself half an hour still just sitting and relaxing , otherwise all your good work can be temporary and the panic pops out again.
If you can go and have a bath , shower or power nap after this to cement the deal.
No matter what the cause of the panic attack , Pred , PMR , or if it is related to other health issues like BP , insufficiencies , cardiac , neuro or kidney issues , Menopause or Mental Health these lifestyle tools will help both before and after a GP diagnosis.
And be prepared , sometimes , the relaxation after Panic or Palpitations can bring on a normal headache , or migraine , not PMR but to do with the swings in your system .
So you may want to take a couple of paracetamol and an extra glass of water before your nap to heal that.
Increasing you fluid intact with mineral water and flavoured green tea and taking a supplement that includes zinc, magnesium and vitamins in the middle of a meal will also boost your resistance to these issues if adrenal or other insufficiency is the cause.
Hope this helps and you get some answers on the cause soon . Take care , Bee xx
Fascinating read Bleary. Non PMR, because it's been a problem for years but has lessened but not stopped after menopause, your mention migraine after panic attack or palpitation. I became aware that migraines happened 'after' an event, good or bad. After years of trial and error, I found that pink Migraleve were great taken at the right time. Shocked to discover recently there is a supply problem with them. Thank God I haven't had many during my PMR journey because they are extreme. Wonder if pred should be thanked for that 🤔
Yes , I have noted the Migraleve issue because my husband has to use it for his migraines associated with diabetes.
None in the pharmacy and none to buy straight off the shelf for over six weeks here.
Our chemist is amazing , he is on the case is battling to get his order filled , he puts the ration on this and many other drugs like gastric coated Pred to the not to be mentioned 'B' word.
Don't know how my OH will cope when he runs out of the pinks !!
I can't take it now myself because of other drugs but it was a godsend to me for years , especially with those eye squinting , across sinus migraines.
Hope you have been enjoying the weather and getting a Vitamin D boost
Hugs , Bee xx
Have you seen this report?
theguardian.com/commentisfr...
“commercial confidentiality” my foot!
I haven't I will check it out later , just recovering from the aches and pains with a box set binge of Game of Thrones series 7 at the moment while my youngest is on a sleepover.
Hugs , Bee x
I tried to get some in November and was told it had not been available for a few months! Everything gets blamed on the B word eh. At least it gives pred a break, it gets blamed for all sorts ☺️ Pink M is my security blanket, that's why I tried to get some in November before a holiday as that's one of my triggers 🙄 imagine my delight to find a sleeve of them in an old handbag. 🤞🙏 praying they will be available again soon.
I know been there done that , the rifle through the handbags and toiletry bags to hopefully find a random pill when you prescription is delayed , it's like the middle age version of rummaging around in the sofa for spare change when we were young and foolish!😋😂😂😂😂
A few months ago, visiting my daughter and she tried to persuade us to stay overnight. I couldn't because I had no pred with me and couldn't possibly do without it and be able to move in the morning. Lesson learned from that,I now have some pred in a few bags. Not a fashion thing, using different bags, depends how sore my shoulders are on given day 🙄 different size/weight bags, sometimes no bags, or I put one in a carrier bag and give it to my OH to carry 😂🤣😂 He's not happy to carry a handbag.....
I don't even walk to the village without my daily dosette box with the rest of the day's tablets in my bag, next to my phone! If we go slightly further afield I fill it so I have a full 24 hours tablets with me. And if we go to Innsbruck I take the ziplock bag with everything...
You definitely sound like me , different bags for different aches.
Luckily I have one handbag , a white vintage looking one with round bamboo handles and a big red fabric apple on the front , that my OH seems unusually drawn to.
Even before GCA/ PMR if I gave it to him while I did something else he didn't quickly give it back and I often had to ask for it , it was a family joke , so now if I know I can't carry stuff I take , " Daddys Handbag"!
I completely understand that fear of staying anywhere spontaneously too , just in case you haven't got everything you need in case you start to go downhill. Getting ready to go out , even just a short trip to the shops these days , takes the organisation of a military exercise. It feels like the days when the girls were babies and you had pack half the house to be prepared for all their physical needs. Now it's for Mummy , sad really.
Big hug , Bee xx
Had my first "anxiety attacks" in this last year . Went through all the tests, thyroid, etc., all negative for cause of attacks. Finally accepted that my " fight or flight" response is just a bit wonky , and when I get jittery, I need to kick a few stressors off my table.
At this point in my recovery, I still have reduced tolerance for change and external pressure. (Call that by its name...Stress).
I've gotten pretty good at slapping my cards down on the table, and leaving the game, when I feel that jittery feeling starting.
I try to manage my environment as follows, I dont watch scarey movies, don't read spine tingling thrillers, don't listen to doomsday media coverage. I dont answer the phone on demand, but let voice mail get the call, and return it at my leisure. I may not answer the door, if I am not expecting guests.
A nice cup of non caffeinated beverage and a snack usually help.
It does get better !, there is an end, just not yet🤓
Kind regards, Jerri
Diagnosed PMR, 2013, currently 4 mg pred.
Thanks for that!! I understand you perfectly. I like the word wonky, explains it well. I only have a TV for streaming movies. I gave up news printed or on the internet a couple years ago. No stressful books or movies. If politics come up I walk away. Prednisone or GCA have made my brain feel fragile. Still, stuff seeps in, usually family related that is hard to walk away from. My 2019 goal is to work on my response to stress stimuli because I know it is not normal and just makes my inflammation worse.
All the best-fm
What now?
Now what?
What now?
Now what?
Flare has subsided--now what?
