Alice in Wonderland?!

Hi everyone :slight_smile: hope you are all getting on OK.

Just a quickie. Currently on 240mg of propranalol, on the whole have been doing pretty well on it. I do have blips but I can generally cope. Anyway, cut a long story short I have recently returned to work full time ( had a big op in July) I am a teacher and I was just sitting downstairs marking when I started to feel really odd. It’s still going on?!!! It’s like the ‘Alice in wonderland’ syndrome. I kind of feel removed from everything and pretty anxious. I think the anxiety is being caused by this odd feeling. I remember having this feeling right at the beginning. Usually my blips are just a kind of unsteady feeling this is more like a swirly/swim my feeling in my head. It’s horrible!!!

Can someone please talk some sense in to me as annoyingly my mind is running away with itself and I’m thinking it’s not going to pass, going to be off work… blah, blah, blah!! I realise i have been very lucky so far. Panicking my meds have suddenly decided to stop working!!

I should mention that for the first time in 8 months I have smoked :frowning: I have been back on them for a week. Today I have only had 1, which was this morning. I wonder if this could be something to do with it?!

Any tips on how to relax?!! Also, is it normal?!!! When you haven’t felt like this for ages it’s easy to forget how frightening it is.

Kathy xxx

Kathy
That’s not good news after your op recovery & getting on so well with the propanalol. Anxiety does tend to ramp things up so wondered whether the reason you have gone back to smoking was perhaps you have been feeling stressed working full time again - and teaching is a very stressful occupation for even the fittest mortals!!

It’s absolutely normal to have the anxiety and panic attacks when those unsteady/swirly/swimmy feelings come back - it sends our brains right back to those awful, horrible days when it just went on & on relentlessly!! Sitting quietly, slow breathing and some meditation can help pull our brains back to some rational thinking but for me a small dose of Ativan (.5mg) also helps to calm everything down quite quickly. I rarely need to use it now but having it ‘on hand’ when I’m travelling, etc also keeps a lid on the ‘what ifs’ anxiety that can so quickly flare up in difficult situations.

Barb

Thank you so much for responding Barb. I really appreciate it. I went to bed early last night hoping i could sleep it off. I still feel ‘weird’. You are so right when you mention the ‘what ifs’. I just go in to panic mode which I know is the worst thing I could do!

I’m just about to get up for work, I really don’t fancy it but I must. My worry is what if I pass out/have a funny turn in class!!! I think I just have to get on with it and see what happens. I have been pretty well for a good while, as I said I do still have some symptoms but because I know what they are I don’t panic. For some reason, last night was different. It was that horrible swirly feeling like everything is slowly happening around you. The only way I can describe it is it’s as if I’m not really there! I panic then as I worry I’m going a bit ‘funny!’ Does that make sense?! That doubt creeps in that I haven’t got Mav but some other strange condition!

The joys!! Going to try my best to ignore this feeling today as I know I will be a complete mess if I start to pay attention to it, analysing each feeling.

You have helped me normalise what’s happening. Thank you. I’m still frightened but I’m trying my best. Anybody else get this ‘Alice in wonderland’ feeling? In my heart of hearts I know it’s mav related but when you’ve been well for so long it’s like the first time all over again. Grrrrr!

Hope you are ok Barb xxxxxx

Hi there. Yes, you hit the nail on the head for me. I am currently adjusting to a new medication called Keppra (it is an anticonvulsant like Topa). I have been feeling this way ALOT in the last 24 hours and like you, I constantly worry I am about to have a funny turn. I did break down and take 2.5mg of Valium earlier today and this seemed to help. Also going to try meditating right now and see if this makes a difference. I told my neurologist about my depersonalisation feelings and he thinks it is definitely a combination of MAV and anxiety (i have had anxiety many years before mav started), and not indicative of fainting/seizures, etc.

Hi alternaace, thank you for your response. I’m sorry to hear that you are feeling the same way. I am guessing it is the new meds. I am sure it will settle soon :slight_smile:

I too have suffered with anxiety for years before I was diagnosed with mav. However, my neurologist said it was mav all the time!! I think they go hand in hand :frowning: I’m trying to keep positive and it really does help to hear from people who know what I’m talking about. It is a kind of depersonalisation, I also get the feeling that the images in front of me aren’t quite sharp if that makes sense?!!

Meditation is a great idea. I have seen a therapist over the years (CBT) she is very in to mindfulness. Think I need to learn to calm my mind! When I get anxious I get in to a cycle of asking for reassurance as all these worries start circling around my brain! What if it never stops? What if I have to give up my job? What if I can’t cope? I’m trying really hard to not go down that route. It’s such a frightening feeling the depersonalisation. I am not even experiencing my usual rocking, it’s the ‘swimmy’ feeling that I hate. Of course my next worry is, is this a new symptom? Is is still mav?!! Driving myself round the bend! Grrrrr!!!

Sorry for sounding like a ‘loon’, would still like to hear from anybody else who experiences similar. Need to just accept it’s mav I know, but need reassurance today. Does this still sound like it?!

Thanks for reading xxxxx

Kathy, you may be interested to read this article in the Daily Mail today about AIWS:

dailymail.co.uk/health/artic … g-her.html

Thanks Jem :slight_smile: I’ve got to say it’s not quite the same but I do get the feeling that I’m removed from everything. Was dreadful in work today. Felt really out of it and everything was swaying!!! Horrendous. The panic did pass but it wasn’t great having to take a yr 6 class!!!

My latest worry is that ive got some other problem. I have forgotten how horrid it is and I’m now back to questioning the symptoms. I’m sorry I am being a complete pain but this is how my anxiety manifests itself. Keep asking for reassurance that it’s ‘only’ mav. The feeling literally came out of nowhere. I had been feeling ‘off’ but not like the hr of hell I experienced earlier today. Everything looked odd and I felt like I was swaying. Yuk!

Do you get this Jem? Anybody else? Any responses telling me to stop being a doughnut are fine!! Just need to be reminded that this is the norm with this stupid disease!!

Xxx

I haven’t had AIWS as yet Kathy but I know what you mean about the anxiety and increased symptoms. In my opinion and in my experience it is caused by the stress and physical and mental exertion of work or even doing a bit more than normal. I am the same and get hit with worse symptoms and feel bad if I try to live a normal life. That is why I don’t work and can’t do all the things I would ideally like to do without paying a price. Sorry if this sounds negative. I believe it is all part of MAV and affects some of us more than others. It has certainly made me a lot more reclusive! x

Thanks for getting back to me Jem. I’m so irritated with myself!! I think the reason I’ve freaked out is because I have been well for ages then this?!! The fact that the symptoms are the same as when this started also ramps up the anxiety. For example, when it first kicked off it was just like this, felt ‘floaty’ , panicky and like I was swaying. As I improved I experienced the rocking sensation and when I’ve had blips I rock a little. The fact that I’m experiencing the swaying again makes me think I’m back to square 1!! I’m desperately trying to tell myself that it is just a blip and that I will feel better again soon. Part of me is aware that the fact that it is swaying rather than rocking doesn’t mean that I’m back to the beginning, need reminding that it’s all mav related.

Please feel free to drop me a message anybody :slight_smile: need kicking in to touch.

Xxxxx

Ps. Am trying to arrange a get together for us north westerners in Jan and I’m now worrying what if I can’t make it because I’m dizzy! Aaarggghhhh, not even funny!!! I do hope that we get to meet at some point Jem. You’ve been wonderful to me on here :slight_smile: xx

@jem I do hope that you will manage to do the things you want to in time. There is hope, you know how well I have been doing. Even after having open surgery I still remained well. I was, until recently, feeling relatively normal. It is achievable, we just have to find our way back there! I would still probably give 3d films/becoming a trapeze artist a miss!

I think you’re right about the stress of work. Not only am I recovering from mav I had my op to get over. Even now I’m still sore. So yes, being back full time is a bit of a killer. If I continues like this I would think about going part time. Our health is the most important thing isn’t it. Xxxx

I’m going through it right now, too. For me it seems to hit in Dec-January. I also get a salty taste in my mouth. Hopefully it will lift by the end of Jan like it did the past two years.

I understand what you mean about thinking it’s a brain lesion or something else. In my case, I think getting new glasses kicked it off – I had to return them three times and they also caused a swelling above my right ear (so of course I’m panicking about that being something worse!).

I know know know that meditation helps but I can’t make myself do it. Anyone interested in forming a meditation support group?

Yes! I’m all for meditation :slight_smile: xx

I found that Propranalol gave me that “I’m not in my own body” feeling after taking it for just a couple of weeks even at about 40mg or so (I’m struggling to remember the dose now) and it went away as soon as I stopped it. I also got a similar feeling on SSRI’s and gave up on those too. In both cases the feeling was very scary and felt like something horrible was going to happen.
I know the dizziness can also cause anxiety but not quite the same feeling as when I was on those meds.

I’m glad that when you stopped taking the meds the feeling stopped :slight_smile: I have been on propranalol for a long time now, they have helped massively (well, they were!) so I don’t think they have caused this.

Let’s hope it improves soon because I’m not enjoying this!!!

Kathy I am sure it is a blip and you won’t make the migraine brain any worse by working but it’s just whether you can cope day to day. If you find you can then you will be fine. The main reason I had to stop was fatigue. It builds up with me so I stop being able to function but for many people with MAV they don’t get that so they can keep going a lot better. You sound like you are doing really well especially teaching so just see how things go and reduce your hours if your body is telling you it’s too much xx

Hi Jem, thanks for your wise words :slight_smile: I’m still totally woozy but taking it as easy as I can. I am getting lots of early nights and drinking plenty of water.

It’s time to ‘do one’ now Mav!! How are you getting on?

Xxx

Well, I did a 20min meditation along with a youtube video yesterday, and I’m better today! Driving for a few minutes also made me feel better, and it lasted.

By the way, for me, it’s more like a “Go Ask Alice” syndrome, because it feels like a low-budget 70s movie about drugs!