Urgent advice for MRI Scan - the Update - I did i... - PMRGCAuk

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Urgent advice for MRI Scan - the Update - I did it! THANK YOU one and all!

Fieldofdreams profile image
33 Replies

Hello my dear GCA friends, thank you so much for all your advice and possitivity!

For the first time I didn't press the panic button and have to have 3 attempts! Following everyone's ideas I created a little recipe. I had had a couple of diazepan last night (need them for flying). Didnt have much affect on calming my head and then someone mentioned amatryptalne... (have those for nerve pain). So i took one an hour before.

I had a CT scan at 10.20 and then went home and did some yoga relaxation! I actually built a cushion wall around my head with something over the top -ie: blocked myself in put an eye mask on and played my soothing 'sea crashing on the shore' sound on loop for 20 mins - the time I would be in the machine. 2 mins in my lovely white cat must have sensed I needed him so he sat on my legs purring as if to say 'we can do this'.

After 20 mins I was half asleep!!! So back to the hospital with my ear plugs into my phone after downloading waves crashing and back I go to X Ray dept - Amatryptalene and diazepan working a treat - but the yoga breathing is too. I got there to be met by Paul a very nice (cute too) :) MRI scanner nurse and told him how I was doing. His voice was very calming. He said I couldn't have my phone for the waves with me - might interfere with the signal - but if I wanted he could sit in the room with me. I said if he kept talking to me I should be okay and he asked if holding a hand might help! Oh yes!

As it was my head i didnt need to go all the way into the machine which helps to know your knees and feet are out of it. I put my eye mask on - took a few deep yoga breaths and got on with it.

Near the end when they said this is the last one and its 6 mins I felt the panic rising but managed to breath it away - Yeah! First time I've stopped a panic attack going full out!

I got off the bed, nearly hugged Paul but decorum prevailed! I went out and celebrated with a soya latte and buying a new pill holder from Boots!

Everyone, thank you thank you thank you so much!!!! Since getting GCA I have had courage to reach out to people and the support I have had here is amazing. I couldn't have done it without you all!

I conquered a fear today - with a lot of love, a little chemical help and a CanDo attitude from all you.

Life is good! Now wait for the results and all will be well. The only way is up.

Tons of love and sanner hugs!

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Fieldofdreams profile image
Fieldofdreams
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33 Replies
SheffieldJane profile image
SheffieldJane

PERFECT! 🦋

pmrkitty profile image
pmrkitty

So happy for you!

MhairiP profile image
MhairiP

I'm so pleased you got through it - well done! It must be a real boost to have overcome that fear. Onwards and upwards! x

scats profile image
scats

Love a story with a happy ending. Good on you. Sorry I had no suggestions to help you, but these I will remember.

Together we are a force to be reckoned with!

jennifer15 profile image
jennifer15

Well done. I love your posts, they really make me laugh although it is a serious subject a little laughter is a great help.

PMRpro profile image
PMRproAmbassador

See - can do, will do ...

Oh Well Done 🌺

Joaclp profile image
Joaclp

Well done! Well done! Maybe your tricks will have some application to other panic-inducing situations like flying.

Fieldofdreams profile image
Fieldofdreams in reply toJoaclp

Yes indeedy. I did a short flight last week (Manchester to Glasgow) and managed without a diazepan - first time in 10 yrs. My change of life style since GCA has changed a lot of things! Grabbing life by the throat now - but yoga and breathing is a big help.

Joaclp profile image
Joaclp

I'm impressed. My only and alas! negative experience of yoga was far too advanced and I have shied away ever since. Maybe time to try again. I had fear of public speaking/panic attacks in a job where speaking was required, tried every trick in the book to no avail. I admire you for overcoming your fears.

Fieldofdreams profile image
Fieldofdreams in reply toJoaclp

HI Joaclp, It can really work, but it takes time. I have done yoga on and off for 30 years. You need to start with a good old fashioned Iyengar beginner course. Learn the basic postures and breathing - Iyengar said its meditation in action . I cant meditate - my brain wont slow down - but moving and breathing wakes up the body, grounds you for speaking from the diaphragm not high in the chest (leading to panic) and the relaxation at the end allows all the body and mind to slow. Only since being diagnosed, when I couldn't even put my head down let alone do a downward facing dog did I have time to sit, and breath (in a class where people where doing postures). I suddenly got it! I have been on a few yoga retreats (some better than others, some a bit too much for ladies who lunch... where you don't get the authentic thing). Its definitely worth a go! I actually teach Platform Presentation and incorporate breath work into it.

Avoid Hot Yoga/cold yoga/yoga goat yoga (I kid you not).... Ashtanga series (for now), dynamic yoga, flow yoga (usually fast) Go for Hatha, Restorative and Iyengar as first choice if you can find it. Never go to a class where they don't show you the posture first and teach you the breathing with it.

Good luck. Yoga is like fine wine. The more you do/drink the more you realise you like it!

GOOD_GRIEF profile image
GOOD_GRIEF

We amaze ourselves sometimes, don't we?

It would be very nice if you dropped "Paul" a line to tell him how much you appreciated his help.

I'm sure he finds his work very rewarding, but nothing beats getting a note of gratitude from someone who has been helped.

Fieldofdreams profile image
Fieldofdreams in reply toGOOD_GRIEF

I filled in a comment form a I left and gave it to the lady on reception :) The NHS gets such a battering and they only hear from people who complain. A thank you takes only a second doesn't it - a grumble is a waste of a smile upside down.

All the way through this GCA journey Manchester Royal Infirmary has been INCREDIBLE. I have been so so lucky.

patriciawhite profile image
patriciawhite

YEAY WELL DONE

,I saw this too late to comment .

Longtimer profile image
Longtimer

Well done, all helps when the operator is cute too!!

Fieldofdreams profile image
Fieldofdreams in reply toLongtimer

Oh yes! both the operator and the nurse holding my hand! They must keep the cuties for Sunday morning lol.

Fieldofdreams profile image
Fieldofdreams in reply toFieldofdreams

ah, no, not the operator... I meant they were both nice. :) ahg.

suzy1959 profile image
suzy1959

👏👏👏 great news! It is amazing what these illnesses can teach us! Something positive out of adversity!

Fieldofdreams profile image
Fieldofdreams in reply tosuzy1959

You are so right suzy1959. I am finding strengths in so many ways now and really cracking on with life. I feel very blessed.

prunus profile image
prunus

So glad you managed it. Great - felt for you.

Omanain profile image
Omanain

Well done. You certainly 'nailed your courage to the sticking place'

Kate x

OHHHH WOW! Good for you!!!! That is BRILLIANT!!!! I am so happy for you! I have two MRI's schedule for this Saturday; head and neck/spine. Not looking forward to it but think I'll be okay with it. Loved hearing how you conquered it!!!! WOOOOOOO HOOOOOOO!

Sandy1947 profile image
Sandy1947

Feeling empowered builds confidence muscle! Thanks for sharing and keep forging ahead!

Jackoh profile image
Jackoh

So pleased for you - well done! Onwards and upwards !!

bunnymom profile image
bunnymom

❤️

Robert09 profile image
Robert09

Is it usual to have MRI scans? I have GCA since June 2017 put on 60 mg pred but never had a head scan!

I also have not had a synacthen test, which I have read about here, I’m currently on 7.5 mg pred.

I found out today that I have however developed a ‘fatty liver’

I’m not overweight & have been on low carbs diet

plus having a mole thing removed from my face has turned out to be a skin cancer.

I know things could be worse, but today it is just all areal pain.

Sorry for the moan.

Fieldofdreams profile image
Fieldofdreams in reply toRobert09

Hey Robert09,

I am so sorry to hear about the cancer, that is bloody bad luck when you have GCA to cope with too and so low on steroids now and a 'fatty liver'... you are very entitled to moan and on this forum you will get loads of support from everyone and lots of great advice. I dont know what I would have done without it. I was diagnosed on Aug 13 but I have a problem with right lateral gaze (ie: i go dizzy and fall over) which they dont think is related to the GCA so thats what the MRI scan and CT 'orbits' are for. I'd say its the booze but I dont drink! Some days its very hard to stay positive because we all have to live in our own reality don't we. Moan away we all have our coping mechanisms on days when you just wish you had stayed under the duvet. All we are expected to do is just take a day at a time. A friend used to say when he kissed his kids goodnight - thank you for today, another good day tomorrow. He said it sent his children to be knowing that what ever had happened tomorrow was another good day. Nice saying i thought. Knowing one or two other peoples predicaments on the forum makes me feel very blessed.

Be kind to yourself Robert and let us all know how you are getting on. We will be there for you.

Robert09 profile image
Robert09 in reply toFieldofdreams

Thank you, the GP said not to worry about either, and I know several friend have skin cancer that is well maintained.

Onwards and upwards.

EdithWales profile image
EdithWales

Well done 🥂x

nickm001 profile image
nickm001

I am glad that it is over for you , but curious what was that you were afraid from? MRI puts me to sleep with repetitive tapping noise and I have to fight not to fall asleep , move and screw up the scan.

Rugger profile image
Rugger in reply tonickm001

You are lucky not to suffer with claustrophobia! If I have to have another MRI scan, I'll try to concentrate on the "repetitive tapping noise" rather than my internal panic!

Fieldofdreams profile image
Fieldofdreams in reply tonickm001

I am claustraphobic and as I have got older this has become worse. But with happy pills and support from here I did it this time. I used to live in London and use tubes - but now thats a no no. Not sure any amount of happy pills could get me back on there. :)

nickm001 profile image
nickm001 in reply toFieldofdreams

I figured that out too late after I noticed your previous post. Narrow space in some MRI can be intimidating, especially if your hands/elbows are pushed in by the side walls. But you did it and that is important.

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