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New here ... looking for reassurance


#81

@gidlabu Within reason you can push yourself and exercise. Listen to your body. @flutters has been my inspiration to drag my a$$ to the gym when i feel around 80% I have actually found exercising has helped MAV and my overall well being in general. Forgot to mention you sleep like a log too.


#82

I do crank out lots of miles and hills on my bike. The trick is dancing along the edge of your threshold. Don’t go flying over. Slow down when MAV finds you. Don’t let yourself get more than marginally more dizzy. When I get dizzy and nauseous, I change gears, slow down and take my time. When I’ve recovered, I hit it again. Exercise has been a saving grace for me. Always at first, it sucks. No matter what, those first 20 minutes just suck. But, if I gut it out, it’s always better for me at the end.


#83

Hi

Great to hear another MAVer improving however slowly. That will be give others on here increased hope.

You are very lucky he does ‘manage’ his MAV patients. Most UK neurologisfs I’ve found only give one off diagnosis appts then show you the door. NHS or private makes no difference in that respect. I’m DIY all through. Still the internet is a godsend.

Very interesting that. Also read on this forum where Dr S condemned alot of VRT exercises one MAVer was given to do as well.

From exp I think it’s the timing of when you return to exercise that’s crucial. Haven’t worked out a formula for it though. No idea. Obviously there’s also habituation to take into account. What you have always done counts a lot. Guess that’s why walking is recomended and, sometimes, comes easier, we all do that all the time - well, as long as we have balance to stand that is!


#84

Firstly thank you so much for replying and taking the time to hear others go through this and get better honestly makes me have hope and also like I’m not losing my absolute mind !!!

I am soooo happy to hear ur at 80% :slight_smile: could I ask what symptoms still remain? It’s so hard to describe these symptoms to someone that unless you’ve been through it you jsut probably wouldn’t get it .

Hope it’s ok to ask a few questions :grimacing:
How long did it take to see a change on meds ? Did you have to get to a high enough dose ? Currently at 40mg of nort and only noticed slight improvement if that. Also did you ever get the spaced out feeling and almost like ur eyes couldn’t take everything in? When I’m outside or when I walk around it’s like my eyes don’t keep up or take anything in ? If that makes sense ? I saw you said you had the heat rippling affect ? Please tell me this goes :pray:t3::blush:

As for exercise dr s said I could still do it as I’m a trainer so I have trained most days I consider it my vrt but I can’t push like I used to . Also if I’ve done a lot in the day I make sure to rest I know when I’ve had enough only thing I can’t do is run or jump. Weight training is ok assuming because it’s not too much moving around . As for your bike that’s prob a lot for your brain to catch up with ! Did you ever find driving hard ? For me it feels like I’m in a computer game so I don’t drive far atm :grimacing:

Sorry for the overload of questions but thank you so much for writing to me it gives me hope this last 9 months has dragged me to the darkest of places and that’s so unlike me I wasn’t meant to move to America end of the year and can’t even imagine getting on a plane right now !:cry:

Thanks again amy


#85

what symptoms still remain? mostly these, and they fluctuate:
fuzzy head
heavy head
inability to concentrate
tinnitus
weird ringing kind of headache :face_with_raised_eyebrow: like half way between a headache and tinnitus
minor imbalance (rare now)
visual/spatial coordination issues e.g. like on the motorway, driving over the crest of a hill while overtaking a truck on a bend in the road, suddenly i might feel like “where the hell am i?” and i have to re-establish my spatial relationship for a moment or two*
times of unexplained fatigue
minor photophobia - light bright sunlight glinting of car windows etc
occasional visual aura, mostly flashes or spots of colour
some days the world just looks a bit weird, like it’s not quite in the right place* :unamused:
get dizzy/disorientated much more easily, eg when bending down, or looking up and moving, eg doing sports

overall, these things make life difficult at times, but they don’t make it impossible. i can do most things most days, but not everything whenever i want. and i wouldn’t be able to pilot a plane right now, although i’m ok with sailing.

hope this helps!

*interestingly next to the balance cortex in the brainstem is a cortex that deals with mapping out the world - i.e understanding where you are and where everything else is, and where it’s moving to etc. my theory is these two cortexes are both affected by MAV


#86

on pizotifen i saw a change within a few days, although the first few days were hyper-weird and sleepy. within a few weeks i was back to driving. Dr S says the first 50% of recovery can be relatively quick, but the next 50% is harder and takes longer. i’m now on gabapentin + pizotifen.


#87

yes, i had all that kind of weird stuff :exploding_head:. it does go when the migraine episodes go. although when i was at my worst, i felt like the horribleness would never end. but now it’s all mostly gone most of the time, except for the bad days :crazy_face:

good luck!

if nort doesn’t give you the right results, go back and see Dr S and ask to change. don’t be afraid to push for another appointment - you don’t have to wait 6 months to see if a med works, you should know in 2-3 months max.


#88

This is amazing to hear thanks so much @gidlabu ! I saw dr s two months ago he said he didn’t want me to come off nort untill I got to 50/60mg only at 40mg at the moment . It’s helped maybe 20-30% but that’s it . It kinda worries me tnat I haven’t responded to this med as much as I had hoped but dr s said this could be because I’m not at a high enough dose :grimacing: I’m hoping that’s the case . However all your symptoms sound so similar to mine so this is reassuring so thank you for the help and advice means a lot I know nort has worked to a degree because I can look at my phone for longer my vision isn’t blurry and I can go out more but it’s only got me 30% so it’s so hard wether to know if I should swap or go higher . I guess il leave that up to dr s :slight_smile: so great to hear ur doing well


#89

I tried amatryptyline (similar to nort) but it was awful for me - horrible side effects. I stopped after 2 days.
But if the side effects are ok for you, dr S is right: make sure it really doesn’t work before trying the next thing. I was lucky - second drug I tried (pizotifen) worked well for me. For some it takes longer…


#90

Thank @gidlabu really needed to hear that as I guess I freaked out when nort didn’t work how I thought it would , I guess in my head I thought everyone responded well to any med but think your right it’s so individual . Out of interest did you get any weight gain on pitz it’s my second med choice too :slight_smile:


#91

yes, i gained a lot of weight on pizot (and gabapentin, it’s a double weight-gain whammy) but i had lost 14kgs in the 3 months prior to the meds due to constant nausea, etc, putting me off eating, and i put back about 18kgs since i started the meds a year ago. sounds a lot but i’m 6’3" and used to play rugby so i was about 100kg before i started. so i went from “normal” to super-thin, back to normal, then to a bit bigger than normal. but - i wasn’t careful at all about it and i was glad to be re-gaining the weight. pizot definitely gives you hunger pangs, especially at first. but if you eat the right stuff and not the wrong stuff, you can control it. and the hunger pangs go once your body gets used to the meds. anyway, for me, i’d rather go up a size and get my normal head back than stay super thin and be spinning round every day :crazy_face:
interestingly, i’ve been swimming a lot, and i do think the meds have also made it easy for me to bulk up a bit on upper body muscle, just from swimming. i guess they cause not just fat retention but also muscle gain. in some countries they prescribe pizotifen to people who have nutrition/eating disorders to encourage weight gain…


#92

Oh wow that’s a lot ! However awesome if your bulking :slight_smile: I’m in pretty decent shape at the moment trying my hardest to stay on top of it . Bloody hard with all the symptoms tho :grimacing::joy: ok so basically it makes you hungry so in theory if you watch ur food I should be ok? Nort made me hungry and I controlled hunger and I’m fine now :slight_smile: but I’ve heard pitz really works for people so willing to give it a try . Sounds like ur really fit too so awesome to hear ur getting back to it all :slight_smile:


#93

Hi
I am really sorry to hear how this horrible complaint is affecting you - it is good to be part of this community as there is so much good advice and support from everyone. This MVBD struck me out of the blue and I didn’t know what on earth was happening to me so I totally relate to how you must be feeling. Hang on in there.
I have also seen Dr Surenthiran in June this year at his London practice and have a follow up appointment next Tuesday at the Medway Hospital in Gillingham. I have been put on Pizotifen , which seems to be helping although I still have neck ache, tinnitus, and head/ear pressure and have good days and bad days. Also I often feel as if I am leaving my head behind me when I walk. I am also on an elimination diet to see if that helps - I am currently wondering if I should also cut out gluten. Have you been put on an elimination diet too?
When this first started all I could do was sit in a chair and watch the tv - nothing too taxing - or sleep, and I couldn’t eat anything as the medication I was given Betahistine (for labyrinthitis ) didn’t agree with me. Seeing Dr S was the best thing I did so I think you are in good hands!
It is hard to stay positive with this disease and it has taken nearly 6 weeks on Pizotifen for me to start to feel like I am improving - I had thought I would improve must faster than that! As I said earlier, hang on in there and be guided by Dr S and all the good people on this forum.


#94

PS - pizotifen makes me hungry but I am trying to eat sensibly. I had lost weight on the Betahistine, but have put it back on again now :slightly_frowning_face:. I hope I don’t carry on gaining weight - but I would rather get my head back and can putnupmwith a few extra pounds!


#95

Hi @janb thank. You so so much for your reply :slight_smile: I was actually just reading your posts and could really relate I am also so happy to hear your doing better . I’m on nort and proprananol but tbh although they’ve helped some they aren’t working much anymore so I think my next choice will be pitzoten . This community has been so helpful and @Onandon03 and @gidlabu have been amazing for reassuring me . I’m only 30 and 8 months ago I truly felt my life was over but finding this site has made me feel far less alone and comforted knowing I will gradually improve but like you say it’s painfully slow I’m a personal trainer so can offer some advice about meds :slight_smile: nort and prop also cause weight gain but I have found watching what I eat has kept me j. Shape so it’s totally possible for you too :slight_smile: I have a call with dr a next month so will keep you updated with what he says :slight_smile:


#96

Hi @Amylouise - it is definitely a helpful community. I don’t think I would have been were I am now without having stumbled across the post from Jem. I also felt that my life was over - I am 64, but think that I am still 21 :laughing: - and I thought that I was never going to get better. The pizotifen seems to be working although Dr. S has said that if I am still getting bad days I can increase the dose, in 4-6 weeks time, so I will see what happens, I have recently started to go swimming again - nothing too strenuous though - and that has made me feel good too. I was doing Pilates but stopped it as I didn’t know if it would aggravate things - I would be interested in your thoughts on this. My eldest daughter is a PE/Science teacher and also a yoga instructor and I probably should ask her to design me a programme. Her classes are too far away for me unfortunately!
Interestingly it was a power hoop class that tipped me over the edge! I had never done it before and that is the last time too!
Dr S reassured me yesterday that I just need to give it time and to not do too much on good days - easier said than done though!
Do let me know how you get on with the Drs phone call :smile:


#97

Hi

It’s me, again.

See you still on nort and Prop. I don’t expect you’ve hit the right dose for the right amount of time yet. You are just bit too impatient I fear. And, also:

I don’t know about Nort. But Propranolol will give a 50% better performance if taken with protein. I read that. Really have got square eyes now, it’s all that reading but what’s more I’ve tried it out and, as near as you can, proved it, so don’t watch what you eat too much. It needs food particularly protein to work. It really annoys me that all these tips are so hard to find. Would be sensible to include it on the Propranolol packet instructions. I know it says ‘take with food’ but it doesn’t give a very sensible reason for doing it. Might encourage compliance that.


#98

Hi @Janb :slight_smile: your only as old as you feel I train a lot of people all different ages so that’s 100% true :slight_smile: wow amazing your daughter is so fit she’s def going to help you out !! However being so fit I’m amazed even with all my fitness this thing can still knock me off my feet ! I am so happy ur doing better I guess I feel so deflated nort hasn’t worked as much however it could be the dose I’m on tbh. As it has def helped so will see what dr s says :slight_smile: really appreciate the support


#99

Hey @Onandon03 thanks for the help I’ve been on it over 3 months and am at 100g and haven’t noticed much change tbh. I am a trainer so my protien intake is very high :confused: just starting to wonder why I don’t bloody respond to meds as well as others :frowning:


#100

Hi @Amylouise - that is very true :laughing: ! I think the thing about MVBD/MAV is that it seems to hit you out of the blue whatever your fitness levels - just a something to tip you over the edge and overload your brain. For me it was definitely the power hoop session (never again) but looking back I think that things were not right as my head had been feeling odd weeks before the vertigo started.
I am sure that Dr S will be able to sort you out - as you have said it could be that the dose needs adjusting. I had hoped that once I started taking the pills I would feel better after a week , LOL, :joy: but have now realised that it is going to take a bit longer for my overloaded brain to calm down! :smile:.