Oh bless him, it’s tough having this at any age but I do really feel for him dealing with this when so young.
It’s a real minefield trying to work out what to do for the best with this thing, and I think you hit the nail on the head when you talked about food diaries and triggers. This is great and can be very effective if you are having intermittent symptoms, but when it’s continuous 24/7 dizziness it’s virtually impossible to work out what your triggers are. A lot of the advice you will read will be very good advice but more suited to those that have acheived some level of control over their symptoms and are trying to avoid bad spells.
Having said that, there are certain foods which are known to be common triggers and so although you probably don’t have any hope of identifying whether these are true triggers for your son at this point, it may be sensible to consider avoiding, or at least readucing these when making meals for him. Conversely some specialists don’t put much emphasis on avoiding dietary triggers and many people will recover from this condition without altering their diet at all. Caffeine just falls into this camp, and to be honest, I think a lot of it at the end of the day comes down to how desperate we get. We make small lifestyle changes (usually the ones we can make the most easily) and if we see no improvement in our condition then we change bigger and bigger things until we find a balance that works for us. You could put him on a strict exclusion diet and be sure you are eliminating all food triggers, but on the other hand this will make him miserable as sin on top of feeling ill and so would not feel to me to be an appropriate thing to do at this stage. May be worth getting hold of a copy of David Buchholz “Heal your Headache”. Have a read and make your own mind up about whether this is something you want to pursue at this stage - there really is no right and wrong.
I think the same rule goes for the sleep advice - when you have some sort of symptom control/only intermittent dizzy episodes then trying to have regular sleep/wake times is ideal in trying to keep this condition in check, however when you’re struggling to sleep because you feel so ill continuously then I think you just have to be pragmatic about this - his symptoms are likely to be worse if he’s exhausted, so sleep at whatever time that may be, is better than being sleep deprived. And yes, I think getting him out and about in the day if he feels up to it is a good way of trying to re-establish some kind of day/night sleep pattern.
As for the futon etc, sounds like you’re doing exactly the right thing to me. If there’s anything he finds that gives him a bit of comfort then go with it.
With the web surfing I think you probably need to follow his lead. If it made him feel worse then I’m sure he’d be avoiding the computer but if he’s not complaining of it making him worse then it probably isn’t. It’s also something to keep him distracted from how he feels which is definitely a good thing. It may help him to turn down the screen brightness a little if he’s stuggling with light.
In terms of VR, yes, I did this myself for a period when I first got ill and was (mis)diagnosed with an inner ear cause for the dizziness. It’s main indication is for inner ear disorders - if there is some “fault” in the way the ear is sensing your position in space/movement, then the idea is to train your brain to compensate for this “fault” by repeating movements (at first simple, eventually more complex) over and over again until your brain gets the hang of the new way the inner ear is functioning and learns to compensate for any deficit.
It’'s controversial whether VR is indicated for a pure migraine picture which does make me wonder whether your specialists have totally ruled out any inner ear involvement?. It generally is not as effective for migraneurs, at least not until the migraine is under some semblance of control, as even if there is an accompanying inner ear problem that definitely would benefit from VR, you are expecting a “malfunctioning” migraine brain to be able to learn to compensate for a “faulty” inner ear. Again, you maybe need to be pragmatic about this - by all means go along and get the excercises if this has been recommended, but if you find that these are making him lots worse, or he is not progressing through the excercises as he should be then don’t hold back from rediscussing it with your neurologist. What works for one may not work for another, or may work for another but at a later stage.
Finally just to echo what Maryalice said, a lot of the posts you will read on here from people who have real insight into their condition, triggers etc are people who have been managing this condition for a very long time. It took me over six months of symptoms before I was even tried on any drugs for migraine, and some people go on for years before getting diagnosed correctly. Although it must feel like your son’s been ill for ages you really are miles ahead of the game with this already, he’s being tried on a drug that is often very effective for this condition, he’s under a neurologist who seems to have some insight into this condition and he’s being well loved and cared for. Just try to see all of this other stuff as the cherry on the cake rather than the be all and end all, it’s good to look into and some small changes may be beneficial but these are all just guidelines that some people have found useful, and definitely not rules that you should feel duty bound to adhere to.
I’m sorry I can’t be more specific, it takes time to really get a feel for this disorder and what is helping or hindering it for any specific person, but it really does sound like you’re totally on the right tracks with what you’re doing, just carry on being there and giving plenty of love, support and reassurance and hopefully he’ll start seeing some improvement really soon.
Oh, one last thing I meant to ask was whether he’d tried any medications for short term relief of his symptoms - I used cinnarizine (a vestibular depressant) initially when I got this, some people find valium or xanax is their rescue remedy - might be worth discussing with your neurologist whether there’s anything he can take that might offer him some short term relief whilst you’re waiting for the propranolol to be effective.
You take care of yourself now,
Helen