MRI and Claustrophobia. :(

New diagnosis and before diagnosis
1

I was due to have my first MRI yesterday. I have never had one before and was a bit nervous but after speaking to a few people who have had them I was put much more at ease. Two people I spoke to had even fallen asleep during an MRI!

Well, I went yesterday and was taken to the little mobile outside the hospital. There I saw the scanner and the scanner operator ( I don’t know the correct term) explained what would happen. I was fine with it. I got on the bed and she put this head cage thing on me. It wasn’t touching me. I was fine with that. As I was moved into the tunnel I thought I was still fine. There was a lot of clanging but that didn’t bother me. She told me the tunnel was open at both ends and gave me ear plugs which I used. Well as soon as I was in the tunnel I began to panic. I tried to look up to see the end of the tunnel but couldn’t see up that far. I looked down at the little mirror and could see the lady outside and the doors. I tried closing my eyes and imagining I was just in my bed but I could feel the tunnel closing in and I struggled to breath. I heard her say that this was only a short 30 second scan to start with and a high pitched noise began. I just couldn’t cope with it. I couldn’t breath and felt trapped. I squeezed the little black bulb thing she had given me with a lead attached to it for help and said “Get me out!”. She got me out and I sat there wondering what happened. She said to take it easy, let my heartrate come down and get my breath back and that she wouldn’t try put me through that again but would make another apointment for Tuesady in their bigger scanner inside the hospital. She said that one was more open and I could have headphones with music in that one. She also said I should get some diazepam off my GP for Tuesday. I told her I wasn’t expecting to be like that and she said it is always worse when it’s a shock.

I am dreading Tuesday now. I have never had diazepam before and don’t know what effect it will have on me. I can’t believe I was such a baby. I am fine in lifts and travelling on tubes but that was something else. I felt so trapped and really struggled to keep calm :frowning:

I feel so annoyed with myself because I want this done so I can see my neuro again on the 30th May and we can discuss the results. I need this done.

How do you cope with MRI scans if you get claustrophobic? Is this ‘bigger’ scanner really going to be much bigger? Is the diazpeam really going to help? I am just worrying that I won’t be able to have it done at all and where will that leave me? :frowning:

2

Hi

I’m so sorry you had that awful experience - it must have been so scary for you.

I tend to be claustrophobic, but did manage an MRI a couple of years ago. I’ve not been in a mobile van one, but the ones in the hospital are actually quite big.

The way I have to deal with it is to close my eyes before they even begin wheeling me into the tunnel bit. That way, the last image I have seen is the open room all around me. I don’t under any circumstance open my eyes again until they wheel me out and say it’s finished.

Whilst I’m in the scanner with my eyes closed I spend the whole time concentrating on a song or two I have memorised and sing it in my head over and over, not allowing my thoughts time to wander and think where I am. I even try to ‘sing’ the words in tune with the scanner noise, lol!

I’m sure you will be fine next time, but I do hope those tips may help you as they do me.

Let us know how you get on - wishing you all the best with it.

Bren x

3

Thanks Bren. I am totally freaked out by it now and would seriously rather have my leg broke than go in one of those things again! I can do pain, I don’t mind the dentist or having teeth pulled out, I don’t care about injections or blood tests. I just don’t want to go through that again.

I wonder if an eye mask may help?

I feel like Mr T when he won’t get on a plane. “Ain’t getting in no MRI sucka!”

4

I don’t like them and the first one I had my heart was beating so fast. I have had two more since then and I took 10mg diazepam and it made it a lot easier. I like Bren don’t open my eyes till its all finished. Good luck on Tuesday Karen

5

Thanks Karen. I’m just dreading it. How do you force yourself to go back into a stressful situation? I know I am making it worse by worrying but it’s not something I can help. The physical symptoms were just horrendous. My mouth went so dry my tongue stuck to the roof of my mouth. I felt like the air had been sucked out of that tunnel and it was closing in on me. Oh, dreadful.

My ex husband took me and even in the car on the way home I had the window wound right down with my head hanging right out to get air because I still felt claustrophobic even in the car. It took me a good hour or so to feel normal again.

I’m just worried diazepam won’t help and I don’t know what else I can do. :confused:

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I also felt physically sick and sat there, when I got out, feeling like I was about to throw up.

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I just tried to breath slowly right from my stomach, try and do this while you are laid down at home. I just wanted answers too and this helped me get through it. Feel free to pm me anytime I will try and help Karen x

8

Hi, I’ve had five MRI’s over twelve years. First in a portable lorry, twice as an inpatient, others and one scan that did my brain, cervical, thoracic and lumbar cord which took a long while. Then I got an appointment for another one in a portable MRI.

My husband drove me to the appointment and we waited in the car. Someone came out and told us they were running late. We were sat in the car for an hour waiting. My turn came and I ended up pressing the buzzer and couldn’t go through with it.

My neuro referred me to a private clinic where they have an open scanner. Just seeing it made it a lot easier, it’s less claustrophobic and I could even see the paintings on the walls. The diazepam will just help relax you and stop the panicky symptoms. My husband also comes in with me. You can take someone in with you if you ask.

You’re not a baby. You would be surprised at how many people freak out over scans. I’ve seen men reduced to tears.

There are now new upright open MRI scanners which I think most people would find easier. Good luck for Tuesday and let us know how you get on.

Jacqui x

9

Hi moonie :wink: im not claustrophobic at all but the MRI I had in the van was awful and made me a bit panicky. I have also had one in the big one in the main hospital and it was a lot better, there is much more space and I didn’t feel like a sausage roll! Take your favourite cd with you. A word of warning though a friend of mine took a sounds of the rain forest in the hope it would relax her but she just ended up needing a wee lol. Good luck on Tuesday and remember we are all with you in spirit. Xx

10

hey hun i had a brain scan earlier this week and had another one back in october. i totally get why ud get claustraphobic. the bigger ones are way better. there is loads more space.

the best tip i can give u is breathe deeply and try and zone out of where u are like come out of ur body. not sure if u get what i mean? i didnt take anything cos i like u was scared how it would affect me. i just took loads of deep breaths. i was in there for over an hour and by the end i was like get me out lol

good luck x

11

Thanks a lot everyone. Sounds like the bigger one inside the hospital will be much easier. I hope. I am just disappointed with myself because I need this done. I just hope I can get in the bigger one and just ‘zone out’. (Yeah, I get what you mean beccygreeneyes). I am really good at doing that in bed when I have sleep problems but I know I am safe in bed and I was trying to imagine I was back there in the scanner but the irrational fear of being buried alive took over before I could get to grips with it. I think it just scared me as I had never been in one before and didn’t know what to expect. It felt so frightening and enclosed. Eww, it makes me shudder remembering it!

I may need a glass of wine with the meds before I go in, lol…and a few ciggies! I gave up over a year ago so don’t want to do that. Am still hooked on the NRT lozenges and e-cigs.

I couldn’t even get an appointment with my GP for diazepam. I was told ring Monday morning at 8am. Well, let’s hope I get through then before all the appointments are gone again, like usual!

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Hi, I will be thinking of you on Tuesday, hope all goes well Karen x

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It’s probably not a whole lot of help, but your reaction is not uncommon, even in people who have never had claustrophobia before. Some research centres even have dummy MRI scanners so participants can try them out first, to see if they are going to be OK in the bore (the tube) before they actually do the experiment because scanner time is reeeeeeally expensive and research budgets are not very big.

This probably isn’t a whole lot of help either, but assuming you don’t have a pacemaker or any loose metal in your body, MRI scanners are absolutely, completely safe. The bore is solid - it cannot fall on you. The noise is actually just (totally tuneless!) loud radio waves and cannot hurt you (assuming you’re not in there all the time and not wearing ear plugs or headphones to block it a bit that is). Any movement you feel while you’re lying there is the same sort of movement when you’re next to a really loud speaker or at a concert or something - the sound waves move the bed a wee bit because they are very loud. The thing around your head is the bit that collects the data - it has to be close to where the bit being scanned is. The bore is open at both ends and a lot of your body is actually outside it during scanning. You can wriggle out no problem if you had to. Plus, as you know already, if you press the bulb thing, the radiographer will stop everything and come and get you straightaway.

This is all well and good, but hearts tend to over-rule heads in these circumstances! So do ask your GP for some valium or something. Also try an eye mask. Try music. Try closing your eyes and imagining that you’re lying on a beach somewhere. Do your shopping lists in your head. Think about what you fancy for Christmas. Make up a tune to go with the stupid noise that the scanner makes (it’s usually pretty rhythmical!)… Ultimately, remember that this MRI might get you the thing you want more than anything: some answers.

I hope it goes OK.

Karen x

14

Hello, I soooo can identify with your experience! I was exactly the same when I had my first MRI. I had never had one before although the previous day I had a CT scan which I thought was similar. I’ve never been claustrophobic and generally i can talk myself into anything I need to do, especially if I am scared …that was until I had my first MRI and I couldn’t go through with it. I felt ashamed, Id wasted people’s time and money and my family members were not pleased with me as they were so desperate to find out what was wrong with me. The doctor suggested diazapan. I had try not to take medication but on this occasion I thought I would give it a try. I didn’t really believe it would do much good and the night before the scan I spent going through relaxing strategies to get my mind in a good place. I was still nervous…then the following morning I took 5 mg diazapan , about half an hour before the scan…It was great! A bit like the feeling you have after 2 glasses of wine! I knew what was happening but I didn’t care and it didn’t hurt and was over before I knew it. I also got a bigger machine and they played music into headphones so it was ok. It really doesn’t need to be stressful. Sometimes in life u just need a little help. I have used diazapan for lumber punctures as well. 5 weeks ago I was diagnosed with RRMS and I’m still getting my head around it. I’m glad I had a little help to get through various tests. Keep on at your doc. Will be thinking of you and you will do it ! Good luck

15

HI all.

I have been to my GP today to tell him about the MRI catastrophe and that the radiographer had rescheduled another in the bigger machine for tomorrow and had suggested diazepam. The GP said that I should not worry and that he was the same when he had an MRI and added that he didn’t know he was claustrophobic either.

He said to take 2mg diazepam at 8am tomorrow morning then another 2mg at 12. My MRI is at 1.30. He asked me about my symptoms and I told him I am about 95% recovered now so am really pleased. He said it was a god sign etc etc.

Today I have been sleeping ALL day though! I feel completley energlyless and I have a dreadful headache. I don’t know if it is stress. I also have numbness in my left thumb. I may be reading too much into it but this was how my episode started 9 weeks ago which then totally floored me two weeks in.

I’m not worried about any pain with the MRI, I know it’s painless. I don’t mind the noises. It is purely that ‘hemmed in’ feeling. It reminded me of the film Panic Room with Jodie Foster. It felt like the scanner walls were closing in on me. It was stifling!

I’ve never felt anything like that before and now it is terrifying me. I’m not sure, thinking about it, if an eyemask and headphones will help because I like to feel in control. I like to know what’s going on and be very aware. I think I would feel worse if I couldn’t see or hear what was going on around me. I feel anxious if I am ‘in the dark’ so-to-speak. I never wear headphones at home because I can’t stand any frights from someone trying to speak to me or suddenly appearing next to me etc. Not being able to hear my surroundings makes me feel very uneasy.

I’m a nightmare aren’t I!

Thank you all for the good luck wishes. I think I am nervous about letting myself down too, if I can’t go through with it tomorrow. Not to mention wasting people’s time and money etc …and not getting it done so I won’t get any further with this diagnosis.

So much is at stake!

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Let us now how you get on, I am sure will get through it, the diazepam will help. Keep stong Karen x

17

Your reaction does not sound like something you can overcome with a bit of willpower - if it was, you would have been able to master yourself today, but that was not possible for you. I’m with the radiographer - cut to the chase and get yourself some diazepam - there’s no use wasting time wishing you felt OK about MRI scanners when you don’t. This is not your fault - it’s just one of those things, so don’t beat yourself up about it, just concentrate on finding a solution. (You’ll have to make arrangements for someone else to drive you there and back, though, because you’ll be dozy - dozy but calm!) It will be OK. It is OK to accept a bit of help when you need it (and that’s all medicine is, really.)

Alison

x

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You’re right Alison - mind over matter was not gonna do it!

If I had known my reaction was going to be like that then I could maybe have been prepared and maybe already be doing breathing exercies and the whole mind-over-matter thing before I went in but it was way too late for that by the time I was inside and my body was reacting to my thoughts/feelings of benig stifled. I was trying to remain calm and think of something else but the physical stuff took me by surprise and took over my mind.

Yep, gonna try the diazpeam tomorrow and just hope it gets me through.

I have someone to drive me there but have to get bus back. Just hope I don’t fall asleep on the bus! ha!

All I want right now is for this terrible headache/migraine to go away. Distraction is not working and I feel sick - probably not helped by what lay ahead of me tomorrow…

19

Good luck for today Midnightmoon x you can do it! xxxxjenxxxx

20

I did it!! Went to the loo a good few times whilst waiting and was pacing up and down like a loon. This time I took loads of packets of sweets with me to try keep me occupied. I had the 2 diazepams as GP instructed, 2mg at 8am and 2mg at 12 but it didn’t feel like it was doing anything so I took a 3rd 15 mintues before I went in. Still didn’t have much effect but then drugs don’t usually have a major impact on me anyway. I don’t tend to have any of the side effects etc. I went through four packs of sweets!

Well the scanner was slightly bigger but the whole room was much bigger and more airy. My body was only half way in and I had an eyemask. I didn’t want the headphones because I wanted to be at least a bit aware of my surroundings. I could feel the breeze from the fan inside on my arms so that helped too. That headcage was the bit that started panicking me a little but I remember my friend’s advice about 7/11 breathing and I tried that. Last time I was in such a state that I couldn’t remember any calming techniques. I didn’t like it but focussed on the breathing. She did say she would do the ‘short ones’ this time - I didn’t know there were short ones??

It was over pretty quickly and before I knew it I was moving back out. So glad it was over.

But, now I am thinking, “This is it. No going back now”. Whatever is happening in my brain will be outed and there’s no denying what the MRI says. This is a bit of a hard crossroads for me now.

Sometimes I think ignorance is bliss, you know?

I know I need to know what’s going on, of course, and if it is MS then it is, but sometimes I think that I’ve coped so far with not knowing, maybe I would be better off carrying on as I have been?

Is this a normal way of thinking? I guess it is. Or really, there is no ‘normal’ or ‘abnormal’ way of thinking things through when you are faced with the possibility of having a life-long, degenerative, incurable disease!

Of course I want the MRI to be clear and for me to never have any symptoms every again, I know, wouldn’t we all!

I kind of feel like I am waiting on death row! I know that’s a bit extreme but it’s a bit like waiting for bad news and wanting to make the most of it before I hear anything bad. Does that make sense? Like living on borrowed time. I know that sounds awful but it’s how I feel right now. Not sad but just like I need to make the most of it while I can. I know life doesn’t end with an MS diagnosis but if it is MS and I am diagnosed then I feel like it will be the end of my previous life as I knew it and I will be someone else…?? Hard to explain really. There’s so much, yet so little, going on in my head all at the same time.

I have been daydreaming about sneaking back into the MRI suite and ripping up my scans lol