Dear fellow sufferers
I have found this forum trying to find some help for my 11yr old daughter. She has had constant dizzyness and headache for over 4 weeks now (been off school all this time). I ended up paying to see a specialist this week as there is an 8 week wait for an appointment to see him at our nearest balance centre. He has diagnosed her with vestibular migraine. We have to do a radical diet change and she has started on pizotifan 0.5mg (can increase to 1mg after 2 weeks if no sign of improvement).
She has seen no improvement so far and is becomeing even more grouchy and fed up with herself. It is so hard seeing her crying and not being able to make her feel better.
Can any of you give me an idea of how long it will be before we can expect to see any changes?
Also I am finding the new diet very hard (especially for a child). It is the MSG part that is the hardest as she loves gravy and all breaded chicken products seem to have msg. Does anyone have any stock cube, gravy recommendations? Also is non smoked bacon and tinned tomatoes ok?
All her favourite foods seem to be on the NO list.
Thanks in advance, I am so relieved she has a diagnosis but concerned for her future as it seems from many of your posts that this will be a demon she will have to control all her life. She starts secondary school in September so I really want to get her sorted ASAP.
Hello Vicky, I’m sorry to hear about your daughter, however on the plus side at least you now have a diagnosis which you can work with. At first it is common to get worse after starting the diet, for me I got worse for a few weeks and then I noticed a remarkable improvement after about a month. I had to stay on the diet strictly for 2 years to steady my symptoms before introducing foods back in one at a time to work out which were actually the triggers. (I’ve never cut out tinned tomatoes or bacon…they weren’t on the list that I was given and I’ve been fine with them).
Unfortunately getting to 100% better will not happen overnight, persistence is the key and she will get there.
I cut out all gravy at first but have worked out that MSG is not a trigger for me at all so there is hope for your daughter to get some of her favourites back one day. For sweet treats Morrisons rich tea fingers and marshmallows are fine. Be careful with crisps as most have milk powder in, ready salted are usually fine. Soya is a good alternative to cows milk, be careful that she gets enough calcium though as over the years I definitely have not.
Whilst diet is very important it’s only a small part, regular sleep patterns, keeping up and active, remaining calm and stress free are also equally important, together with the medication.
She will get there in the end, many people with vestibular migraine live a completely normal life, I work full time, drive a car, go out with friends etc it just takes perseverance sometimes!
If you need any advice along the way this forum is great and full of people who are happy to help and reassure xx
Not much to add as the previous post was so spot-on and supportive but just wanted to say I really hope and pray your daughter has a speedy recovery. It can’t be much fun for either of you. Pitziofen is supposed to be one of the more well-tolerated drugs so hopefully it will help her. I’ve been on it for about 4 months now and it has certainly helped me a lot.
Also, there are different diets to try I believe and as the previous poster said it’s trying to identify what her individual triggers are. Is your daughter under any other stress at the moment and is she sleeping well? I think these can be 2 major issues related to VM.
prior to the attack she was sleeping fine, but now, due to the dizziness and headache she is finding it hard to get to sleep and waking several times a night.
She is changing schools this year, so I am not sure if that is on her mind, I know she is dreading the school leaving production they do in July.
I just want her to be able to enjoy life again, she is so grouchy and miserable. Including half term she will have had nearly 6 weeks off school. She has been on the new diet and tablets for 6 days no but no sign of improvement yet. She seems ok with the tablets so far, but she is definately more hungry especially in the evening after first taking it.