Update

So…saw Dr S today. He said I have MAV and damage to my vestibular system on my right side. He’s given me Pizotifen, a vestibular exercise sheet and the MAV diet sheet. I’m nervous about taking the Pizotifen but I figure I’ve got to give it a go. The thing I’m really worried about though is food. I’m hopeless in the kitchen and it seems that nearly everything has MSG in it. Just wondered what you guys on the MAV diet actually eat? What do you eat for breakfast? Can’t think of a single thing. I’m thinking I’ll just have meat, potatoes and veg for main meals, but I’ll get fed up with it and I’m stuck on breakfast :?

Hi Sally

Glad you got a diagnosis today - at least you can start on the right meds now!

It’s interesting how Dr S prescribes different drugs for different people. He prescribed Nortriptyline for Muppo (although she was already on it), and Lyrica for me and Fiona. It’s good he’s not just dishing out the same for everyone, regardless.

Re. the food issue. It depends how strict you want to be. If being really strict causes you stress, then that’s gonna exacerbate MAV in itself, so there’s no point in that is there!?

It seems our diet sheets are slightly different too, in that Fiona’s allowed eggs and I’m not (!) and a bit of milk in her decaff tea.

Here’s what I have for breakfast:

Mini shredded wheats (they have no malted barley in them) with a bit of brown sugar and Oatly (an oat based milk) or Rice Dream (a Rice based milk) Soya milks probably ok too but I don’t like it.
Peppermint tea or decaff coffee (with Oatly or Rice Dream)

Porridge or (easier) Ready Brek is also malted barley free and is easy to make with Oatly (good for cholesterol levels too!)

Sometimes I have toast - I buy Cranks bread (no barley malt) and spread with Pure Soya spread and honey or jam. Check the jam has no citric acid in it (again this is being mega strict) - Duchy Originals has none in, nor does my mum’s home-made!

For meals, I make a huge batch of tomato sauce at the weekend - 800g tinned Sainsburys Organic tinned toms simmered in olive oil and a bit of garlic and basil for about 40 mins till reduced. This I have on pasta (mixed with oven roasted veg - e.g. squash, sweet potatoes, peppers, aubergine, courgette), or over a piece of grilled or pan-fried fish, with sauteed or baked spuds, couscous or rice. I also make risottos (no shop-bought stock)e.g. chicken, vegetable. Yesterday I had pan-fried chunks of chicken breast mixed with basmati rice and peppers with a few pan-fried cumin seeds, rather nice!

If you like soup, check out Covent Garden or Supermarket tubs of FRESH soup - CG Minestrone and Bengal Lancers have no Dr S-banned igredients, nor does Sainsbury’s tomato and Basil or Duchy Tomato and Rosemary or Waitrose Moroccan Vegetable Tagine Soup.

TBH though I’m feeling crap at the moment and have stuck to this diet pretty religiously, so I reckon I’m not a food trigger MAver - with possible exception of red wine and caffeine.

Buon appetito!

Dizzy Izzy

or

That’s a reassuringly precise diagnosis. The VRT may make you feel a bit crap but that means it’s working. Re the food…there are sites online that sell msg free gravy granules, stock cubes so you can make soup and stews. As to drink there is Red Bush tea, and Liptons fruit teas that don’t have citric acid. Bonne Marie jam is fab and without lemon juice and citric acid, Soya pure spread is good as is soya milk after a bit!. Mayonnaise is sod, but if eggs are not banned you can make your own or experiment with French using white vinegar, mustard , apple juice ,and olive oil.

Thank you both for the ideas :slight_smile: I won’t completely starve then lol.

Dizzy, he was going to put me on Nortriptyline, but he changed it to Piz because I’m already on Sertraline - which by the way, he wants me to wean off of over 6 months - dreading that as I tried it before and it was horrendous.

Anyway, the food thing. Dizzy, are we not allowed white sugar? Or do you have brown because it tastes nicer? I’m gutted that I can’t have bread. Got some oats so gonna try and get my head round porridge :roll:

Hi Sally

I didn’t mean only brown sugar - I just prefer it. Sorry for any confusion! I find shredded wheat pretty bland. I ring the changes with golden syrup, maple syrup or demerera sugar. Oh yes, and I like putting fresh blueberries on top - you can do that with porridge too.

If you’re not allowed milk, then a word of warning re. the substitutes and their respective heating properties and palatability in tea and coffee (deacaff of course!):

soya milk I don’t like but you can buy one made by Alpro which is organic and sweetened with apple juice and that’s ok in tea but curdles in coffee
Oatly is fine in tea - not sure about putting it cold in coffee but I’ve made quite a good latte by heating it in the microwave annd then adding the coffee
Rice Dream - this is quite sweet and makes quite a nice hot drink on its own. I’ve also tried it hot with coffee and it’s quite good. I’ve even frothed it up in my espresso/cappuccino machine and it’s made a decent cappuccino!

Like Fiona said, redbush tea is good, with or without milk. I also like Dragonfly Roobois (redbush) with natural vanilla. Herb teas (peppermint, camomile etc) are okay but check the ingredients for fruit teas as they can have ‘flavourings’ in them, which may be cousins of msg!

Fizzy drinks are usually out, except Appletise and Peartise which are pure fruit juice fizzed up. Check the labels on ready made smoothies as they often have banana in them which is a no no.

now I’m thirsty!

Dizzy Izzy x

Yes, I’ve switched to Redbush tea already, and I don’t like it with milk so that’s a bonus! I just have it black.

I will try the Shredded Wheat too - will make a change from the porridge I’m gonna be subjected to every morning lol. I can have rice cakes can’t I? And I found some kind of oat cake things in Tescos earlier which don’t seem to have msg in. I’m a bit of a grazer so I need to find things I can eat like that. Oh, and those crisps that don’t have msg in too - got some of those.

Just taken my first Piz and am now waiting for side effects like some kind of deranged paranoid freak lol. I hate starting new meds - terrifies me. Did the VRT exercises earlier too, and didn’t notice a thing. I only did 5 reps of each but they didn’t’ make me feel anything at all - is that normal :?

Hi Sally,

Just to try to reassure you a little, but I take pizotifen with no side effects at all apart from on my appetite - I seem to have lost my ability to feel full after a meal. However, this is a small price to pay for feeling much less dizzy! I also get a bit tired, but I don’t really know whether that’s the pizotifen or not, and to be honest I have had trouble getting to sleep (as I generally feel worse lying down), so in a way that’s a positive side effect!

Thank you Beechleaf. It seems that quite a few people have side effects from it, but not everyone so hopefully it will be ok for me :slight_smile:

— Begin quote from “sallysp”

Just taken my first Piz and am now waiting for side effects like some kind of deranged paranoid freak lol. I hate starting new meds - terrifies me. Did the VRT exercises earlier too, and didn’t notice a thing. I only did 5 reps of each but they didn’t’ make me feel anything at all - is that normal :?

— End quote

Dont think about the SIDE EFFECTS - think THIS IS THE DRUG THAT WILL MAKE ME WELL!!!

I didnt even read the SE’s of Nort coz I figured I had enough to worry about without ‘looking’ for things that might be wrong - people need a more positive approach to meds.

Hell, Id eat them like smarties and whistle while I was doing it!!

Good luck :smiley:

— Begin quote from “Muppo”

Dont think about the SIDE EFFECTS - think THIS IS THE DRUG THAT WILL MAKE ME WELL!!!

I didnt even read the SE’s of Nort coz I figured I had enough to worry about without ‘looking’ for things that might be wrong - people need a more positive approach to meds.

— End quote

Well said Muppo. I’m definitely with you on this one, and would rather not know or else I start imagining all kinds of stuff going on. I remember when I was doing my degree seeing a study where the placebo group were given a capsule that only contained olive oil and 97% of them reported so-called side effects! This made me realise that it’s perhaps best not to be anticipating stuff, and also the point that if you are taking some medication you might still have some other stuff going on simultaneously (e.g. having an upset stomach due to something you ate) which is nothing to do with the tablets. Coincidental timing doesn’t mean it’s the cause.

It’s so hard to not think about the side effects, but it’s so necessary to do!!! This is where our anxiety gets the best of us :slight_smile: Lean on a benzo if you need to for a bit while you ramp up on the new med.

Thanks guys, and yes, you’re right - I need to change my attitude! Positive thinking here I come :slight_smile:

Dr S told me not to go reading up about Lyrica (which he prescribed for me) and all the side effects.

SO WHAT DO I IMMEDIATELY DO? Trawl the internet in search of all the horror stories, of course.

This stupidity delayed me starting the Lyrica for nearly a whole week. I eventually took the plunge and didn’t drop down dead, but actually began feeling better. Could’ve started feeling better a week earlier if I’d not been so stupid…

So get taking the tablets girl!

D-I

You sound just like me lol - I took the first one last night and sort of sat there with baited breath waiting to die :roll: xx

EAT UP!!! :lol:

Hi Sally,

just wanted to post something positive about Pizotifen to hopefully allay any fears you may have. I loved Pizotifen! The only side effects I experienced were extreme tiredness for the first 2 weeks or so, and this then improved. When I look back, I think of it as a friendly, cuddly drug, not one of these nasty, to-be-feared, drugs!! :lol:

Plus, I started to massively improve after 3 weeks or so! So, adopt a positive outlook, and go for it!! :slight_smile:

TOny.

Thank you Tony - that sounds positive. Why didn’t you stay on it though? I’m starting on just one tablet at bedtime but I’ve got to work up to three a day within the next two weeks, but I’m ok so far as far as side effects go lol touch wood xx

— Begin quote from “sallysp”

Thank you Tony - that sounds positive. Why didn’t you stay on it though? I’m starting on just one tablet at bedtime but I’ve got to work up to three a day within the next two weeks, but I’m ok so far as far as side effects go lol touch wood xx

— End quote

Hi Sally,

umm, err…how to explain this…? My heart went out of sinus rhythm (atrial fibrilation) and this lasted almost a day or so, but first let me explain that the Pizotifen was NOT to blame! In fact, my heart often skips around, and had actually gone out of rhythm for a prolonged period of time (8 hours) once before in my life, about 15 years or so ago! But at this time, the hospital consultants weren’t sure whether the Pizotifen could have contributed so they advised me to come off it (this despite no interactions with with the heart being menioned in any of the accompanying literature). I really wished I hadn’t come off the Pizotifen, because it was definitely working for me - the dizziness was almost gone, as far as I remember, after just 3 weeks on the drug.

So, after another few months, I did in fact go back on the Pizotifen for a second time, and went to a higher dosage than I was before, and had no issues (like I said, the Pizotifen was not to blame, it was definitely just my heart being my heart). Unfortunately, however, the Pizotifen did not quite have the same effect the second time around - it still helped, definitely, but only got me something like 30 - 40% better. I was gutted! :frowning:

Good luck with the Pizotifen - keep us posted on how it goes!

Tony.

Thanks Tony - I will :slight_smile: I just wondered - can you remember what dose you were on of the Piz? And did you build up slowly? Dr S has put me on 0.5mg at night, then after a week I take one in the morning as well, and then after another week I add in a third - so a total of 1.5mg a day (in three doses).

Hi Sally,

I was on 0.5mg for just a few days, and then stepped upto 1mg per day for the next few weeks. The second time around I was on 0.5mg for a week, then 2 weeks at 1mg, then a few months at 1.5 mg. Looking at my notes, I spent the last few weeks at 3mg per day, but it still didn’t have the same result that even 1mg did the first time around!

Tony.