Has anyone ever felt normal since MAV first hit?

Just curious to see if anyone here has ever gotten a glimpse of what 100% normal feels like since MAV first came into your life. Whether you were normal for 5 minutes only or longer like a month or 2. I’ve been slowly improving but, I know this might sound stupid, but how will I know if I’m normal again? I’ve been this way for so long now and I’m afraid I won’t even be able to tell. I don’t remember normal anymore. My brain is used to this condition now it seems.

Has anyone ever feared that they forgot what it feels like to be normal again and won’t be sure if it actually happens?

Sometimes when I’m in a great and energetic mood, I feel normal, but it may be my good mood taking power over anything else. Almost like masking the dizziness for a little bit.

If anyone does get normal feelings here and there, what do you do about it in terms of gearing your brain to get back to that feeling? Can you do it?

I’ve been doing a lot of jogging and elliptical lately and I am now starting to feel real good afterwards opposed to feeling really off balance and dizzy after the exercise. But it is short lived and I’m still dizzy upon waking in the morning, although my overall daily symptoms are definately improved. The off balance isn’t as bad and when I get a mini spin now it’s less violent and shorter lived. The rocking is also very short lived now and less intense when it comes on. But now I’m just worried that when I get back to normal, will I know? Am I getting to a position where the dizziness is more psychological than the actual migraine? Maybe psychological because my brain is so used to being dizzy that it’s being stubborn and not wanting to change again? Maybe the migraine is still there but calming down some.

Greg

Hi Greg
LOL - With a chronic condition you have to define normal. I have had MAV for 4 years now and am just now experiencing more frequent periods that remind me of my previous normalcy. However, I am quick to remember and understand that in reality I am basically experiencing longer, more constant periods of my new normalcy which consist of medication/vigilance in diet/vigilance in sleep/vigilance in stress level/acceptance of the condition. Hard to admit, but I have no doubt that without my meds, I’d be a relapsed zombie again. But I keep reading, consulting, hoping, and praying that somehow science will find some magic bullets out there so we can feel “normal” again.
Gail

“Fake it until you make it” has become my life motto. I keep myself busy the best I can- on the go, go, go…That is what brings my normalcy back. When I sit down and take a break, that is when I remember I have this terrible condition. I feel best in the car and standing and moving so I try to do that the most I can!

That is wonderful you are going to the gym, just like watching out triggers, pay attention to the triggers that make you feel good!

I’ve had three weeks now of very near normal. But, I fear this is only because I’m in Abu Dhabi with my family so I have constant company and distractions. I’m dreading going back to the UK in a week where I will be all alone again with nothing to focus on except MAV…

I am due for my period in a couple of days and tonight feel like an attack is imminent - my last attack was on the first day of my period last month. I will have to wait and see what happens over the next few days.

I realised that I had slipped back into ‘normal’ without even noticing it. I will agree to go out to dinner, shopping, cafes, the pool, all without stressing how I’d feel. Prior to this I haven’t been ‘out’ in 4 months!

I have been to the pub and can handle groups of people/conversations and more importantly constantly play with my 1 yr old neice throughout the day.

It’s only when I’m still or sitting around in the evening that I remember I’ve got this BS and my symptoms ramp up. Evenings have always slaughtered me.

I just dont want this feeling to end (or my period to crucify me) and I’m praying it lasts when I get home. I really, really hope and pray that it is the Nortriptyline that is working for me (30mg p/n).

The false positives are so hard to bear.

Yes, I have lots of days feeling normal :slight_smile:
Although I don’t seem able to get rid of it completely and I still have days, or more usually part-days where my balance feels very ‘off’, and I have the odd mild spin or feeling of falling back.
I really appreciate it when I have days of feeling good, but it’s still hard to accept that I might not make what I would call a full recovery (i.e. one where I never got any symptoms ever again).

Yes. I was very unwell with something - assumed MAV (diagnosed at Neurology hospital in London) - in 2007. Off work for two months. Hideous foggy brain, juddering vision, novacaine face, marshmallow footsteps, short spins and reverse zoom dolly rushes, nausea, night dizziness, tinnitus…My life simply stopped being my life. Anyway, had to get back to work for financial reasons, and although it was certainly no walk in the park and there were days when I felt bloody awful, there was no point staying at home coz it made no difference!
Gradually began to feel sane again. Started exercising again, jogging 3 x a week and have done the Race for Life 5K each year since then, go to the gym, walk a LOT, gardening, housework, travelling on buses although car journeys still not brilliant. I would say that I feel 98% recovered. The only thing that does happen with irritating regularlity is feeling viral for a couple of weeks…and then that sort of fades off too.
I only took topiramate and lamotrigine back in 2007/08. They did nothing, Not wishing to take anything else due to compromises with energy levels, weight gain etc.
Good luck with your journey. I suspect that it is not the same road for everybody, but for many the road does get smoother. Keep up the normal routines is all I cna recommend. :smiley:

ali1360,

Sounds like you could be in the success stories at 98%. Are you 98% all the time? If so, how long did it take to get there and how did you get there? Was it the jogging that got you there you think?

Muppo,

I was once on Nort back in October, November and part of December. In mid december when I was was weaning off nort, I felt normal for about 4 days. Then it all came back and I was pissed that I had gotten completely off it. I decided not to go back on it cause I wanted to try and beat this through diet and exercise. So my advise to you is to stay on the nort. It’s probably doing the trick for ya.

Gail,

a magic bullet would be sweeeeeeeeeeet!!! Of course, I know there are many people out there that have gotten rid of it with the meds we all know about here. If you’d ask them, they’d say they found their magic bullet. We can all beat this. I’m sure of it. My sister’s friend just got diagnosed with MAV last month, and she’s been dizzy for a year with the headaches and all. I told her about this site and thought she’d come join us all, but her doc put her on a med and she’s already back to normal and is pissed that she didn’t go see her doc a year ago. Imagine that!!! One month and she’s already back to normal living. Needless to say, she won’t be joining the forum as far as I know. Hopefully she don’t ever have to think about dizziness again and won’t ever need to join.

Ilovesalem,

Believing can do a lot. Keeping busy is a good way to forget about it for a while. There will come a day when we won’t have to do anything and won’t be bothered by dizziness.

Beechleaf,

I do appreciate the good feelings I’ve been getting lately and I really want to channel those feelings to an all day every day thing if it’s possible. There’s gotta be a way to do it somehow.

You guys are all wonderful and extremely helpful. Thanks for replying to this thread. I think every response here was pretty positive and it’s nice to hear positivity once in a while. Sometimes I just stroll through the success stories just to shed some light on my condition and after I read them, I always feel better. The dizziness calms down a bit cause of them. It’s pretty amazing how the mind can be so powerful.

Greg

A late reply, if I may.

Have I ever felt normal since my dizziness started?

NO.

With one very strange exception: once when I was VERY sleep-deprived, having had several nights of short sleep and then a night of almost no sleep (was desperately finishing up a very late freelance project), late that afternoon somehow my head became very clear and I could turn around in the kitchen with NO dizziness whatsoever. I laughed and laughed because it seemed so wonderful and incredible!

I don’t know why it occurred; perhaps a whole bunch of cortisol was kicking in to keep me awake and the stimulation helped me (as stimulants do).

Otherwise, my head feels better and clearer when I go for most of the day after breakfast eating very, very, very little. The achiness also gets better when I haven’t eaten for a long period, or just tiny amounts.

But otherwise no… every time I have what feels like a moment of real clarity and stability in my head, it quickly turns out to be an illusion. But I just keep going on through it all. “Onward through the fog!” :slight_smile:

Nancy

  • apologies for late reply…computer on the blink.
    I would say that it took a good 3 years before I had any long periods of feeling 98% well. But…and it’s a big but…at the same time as the original episode happened in 2007 I was well into peri-menopause, confirmed by hormone tests etc. I am convinced that many of my symptoms were - and still are on occasion - a result of the hormone turbulence that accompanies the menopause transition. I am now post menopause having had my final period in November 2009. I am sort of young ish for this to have happened (50 now) and feel that the whole menopause journey was pretty hideous taking about 10 years in total. I have suffered from regular migraines since a teenager - maybe 2 or 3 a year - and had a spate of particularly hideous ones at the same time as the 2007 episode kicked off the dizziness. One lasted 2 days which was unusual for me. Usually they would be hideous for a few hours and then gradually disappear.
    Anyway, I do think that we should consider that there may be other things going on with health and hormones that cause similar symptoms to MAV. When I first had the episode and was desperately seeking answers online, these various forums all told me DEFINITELY that I was suffering from:
  • stress
  • panic attacks
  • chronic fatigue syndrome
    and, migraine.

and if you look at threads on any of these websites forums, you will find ones dedicated to funny heads, dizziness etc. Either everybody has MAV or not all MAV sufferers are…MAV sufferers. Complicated!

  • oh yes, and with regard to the jogging and exercise…yes, most definitely, returning to regular 30 minute jogs and gym visits significantly helped. I have never been a speedy runner, just a plodder, but the ability to get out in the fresh air and feel exercised was great. I never felt dizzy running. Sometimes felt a bit dizzy on the treadmill and exercise bike, but never awful enough to stop. I would highly recommend it. I kept telling myself what was the worst that could happen? Given that I had never actually fainted…even if the dizzy symptoms made me feel on the verge of it sometimes…was I likely to faint? Nothing.
    The other thing that helped was just getting back to work. In the end I reckoned that sitting at home wasn’t actually making me feel any better, so I may as well go back to work.
    Good luck!

Nancy,

what a strange thing you just explained to me about the overtiredness… I’ll try and make this as short as possible so here it goes…

I got diagnosed with MAV in October and I was put on Nortryptaline. In December I didn’t notice any improvement so I started to taper off it. During the tapering period my son was scheduled to get his tonsils out. I got about a total of 3 hours of sleep the night before he got them out and all day at the hospital with him, I felt 100% normal, NO balance issues or dizziness at all!!! Just a tired feeling all day, but that wasn’t even that bad. For the next few days I was still not dizzy and then after the third or fourth day, BAM, it all came back…

I thought that it was the Nort actually starting to work, and I thought I should’ve just went back on it, but I decided not to. Now that you explained the overtiredness to me, that actually sounds like that was what was actually going on instead. It makes more sense but I suppose it could’ve been Nort too maybe.
Interesting???

Greg

Ali1360,

I’ve been jogging daily for the last 8 weeks and I’ve gotten a bit better, but it seems that I’m at a standstill right now with it. But I’m not gonna quit, as there are just too many people that I’ve heard of getting better with just staying with it. They say just keep doing it but it takes a lot of time apparently.

Did you find yourself at a standstill for a while at points here and there where you weren’t noticing much improvement if any at all, but not getting worse either?

Greg

I use to have remissions, but dont anymore, In fact if I did have one, I wouldnt know what it was… I dont remember what it feels like to be truly normal anymore!
Cranky jen today!!! :twisted:

I will months of endless migraine symptoms, always fluctuating, often low key, and I have also had months of feeling mostly normal, to where I don’t even think about my migraine disorder. I have to jump through my hoops constantly to maintain it, with what I can control, and when what I can’t control is at a minimum or not even a factor, yeah, I’ve had months in a row of feeling pretty good. It took about 3-4 years of hell and experimentation and trial and error to get to this point though.

Thanks Jenny and Burdy!!! :smiley:

Over the last week I’ve felt mostly normal. I’m taking Migrelief and inderal for MAV but I suspect the real key has been exercise. It’s finally warm enough in the frozen North for cycling and I’ve been taking advantage. I’m nowhere near in shape like I was last summer, but I’m coming along, and have noticed that even if I don’t feel so great during a ride, I have a surge of well-being over the next couple of days. Some of it is likely stress relief from putting the brutal winter semester behind me… and yeah, some of it might, might be the Migrelief. Very hard to say at this point.

In answer to the question about feeling normal - yes, definitely. MAV is not forever or always.

For me, no. I came close on Cipramil but it was a different sort of 100% and not the old me. That one is gone for good but that’s cool. I think VN hosed something in my brain. Not been quite the same since.

Greg - I had weeks where I felt viral…weird, it would come out of nowhere and linger and I would think the worst ie back to the bad times. And then it would slowly lift again. I exercised throughout…not manically, but 3 to 4 times a week. Jogging, gym treadmill/bike, lots and lots of walking, zumba classes, pilates, stretching…anything to keep my body moving. I couldn’t bear the idea of being stuck on that bloody sofa again, too worried to move.

It is interesting that there are so many people on here who have found that exercising has really helped with their recovery. Got to be something in it.

I do still have days when I feel pretty rubbish…but I don’t feel any better if I lie down so what’s the point. :?

ali1360,

Yea, I do feel better at times but right now it feels like the ground is moving beneath me and it’s pretty annoying at the moment. Very discouraging actually. But I don’t have no brain fog right now which is nice, just swaying and the floor moving right now. It has been shitty the past few days on the balance side of things.

Greg