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. Itās still going on?!!! Itās like the āAlice in wonderlandā 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. Itās horrible!!!
Can someone please talk some sense in to me as annoyingly my mind is running away with itself and Iām thinking itās not going to pass, going to be off workā¦ 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 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 havenāt felt like this for ages itās easy to forget how frightening it is.
Kathy
Thatās 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!!
Itās 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 āon handā when Iām travelling, etc also keeps a lid on the āwhat ifsā anxiety that can so quickly flare up in difficult situations.
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 āweirdā. You are so right when you mention the āwhat ifsā. I just go in to panic mode which I know is the worst thing I could do!
Iām just about to get up for work, I really donāt 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 donāt 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 itās as if Iām not really there! I panic then as I worry Iām going a bit āfunny!ā Does that make sense?! That doubt creeps in that I havenāt 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 whatās happening. Thank you. Iām still frightened but Iām trying my best. Anybody else get this āAlice in wonderlandā feeling? In my heart of hearts I know itās mav related but when youāve been well for so long itās like the first time all over again. Grrrrr!
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. Iām 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
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 Iām trying to keep positive and it really does help to hear from people who know what Iām talking about. It is a kind of depersonalisation, I also get the feeling that the images in front of me arenāt 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 canāt cope? Iām trying really hard to not go down that route. Itās such a frightening feeling the depersonalisation. I am not even experiencing my usual rocking, itās the āswimmyā 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 āloonā, would still like to hear from anybody else who experiences similar. Need to just accept itās mav I know, but need reassurance today. Does this still sound like it?!
Thanks Jem Iāve got to say itās not quite the same but I do get the feeling that Iām removed from everything. Was dreadful in work today. Felt really out of it and everything was swaying!!! Horrendous. The panic did pass but it wasnāt 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 Iām now back to questioning the symptoms. Iām sorry I am being a complete pain but this is how my anxiety manifests itself. Keep asking for reassurance that itās āonlyā mav. The feeling literally came out of nowhere. I had been feeling āoffā 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!!
I havenāt 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 donāt work and canāt 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. Iām so irritated with myself!! I think the reason Iāve 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 āfloatyā , panicky and like I was swaying. As I improved I experienced the rocking sensation and when Iāve had blips I rock a little. The fact that Iām experiencing the swaying again makes me think Iām back to square 1!! Iām 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 doesnāt mean that Iām back to the beginning, need reminding that itās all mav related.
Please feel free to drop me a message anybody need kicking in to touch.
Xxxxx
Ps. Am trying to arrange a get together for us north westerners in Jan and Iām now worrying what if I canāt make it because Iām dizzy! Aaarggghhhh, not even funny!!! I do hope that we get to meet at some point Jem. Youāve been wonderful to me on here 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 youāre right about the stress of work. Not only am I recovering from mav I had my op to get over. Even now Iām 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 isnāt it. Xxxx
Iām 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 itās a brain lesion or something else. In my case, I think getting new glasses kicked it off ā I had to return them three times and they also caused a swelling above my right ear (so of course Iām panicking about that being something worse!).
I know know know that meditation helps but I canāt make myself do it. Anyone interested in forming a meditation support group?
I found that Propranalol gave me that āIām not in my own bodyā feeling after taking it for just a couple of weeks even at about 40mg or so (Iām struggling to remember the dose now) and it went away as soon as I stopped it. I also got a similar feeling on SSRIās 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.
Iām glad that when you stopped taking the meds the feeling stopped I have been on propranalol for a long time now, they have helped massively (well, they were!) so I donāt think they have caused this.
Letās hope it improves soon because Iām not enjoying this!!!
Kathy I am sure it is a blip and you wonāt make the migraine brain any worse by working but itās 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 donāt 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 itās too much xx
Hi Jem, thanks for your wise words Iām still totally woozy but taking it as easy as I can. I am getting lots of early nights and drinking plenty of water.
Itās time to ādo oneā now Mav!! How are you getting on?
Well, I did a 20min meditation along with a youtube video yesterday, and Iām better today! Driving for a few minutes also made me feel better, and it lasted.
By the way, for me, itās more like a āGo Ask Aliceā syndrome, because it feels like a low-budget 70s movie about drugs!
hope you are all getting on OK.
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?!