This is a very friendly forum, full of people who know just how tough this condition can be. We are more than happy to help others who are suffering or who have loved ones who are suffering. Don’t you worry!
I think VRT is very personal. Definitely worth trying and if it is effective, great! I was too ill and it just made things worse. Once the complexity of the exercises reached a certain level, I would have a reaction within 2 hours. Medication was the key to stabilising me. Others have found VRT more effective.
Yes, I’ve been off them since September last year. It was slightly hard at the start, but I was keen to get off them because of course they have an impact and I was fed up with feeling constipated. If they help you more than hinder you, that is when you stay on them. It’s a quality of life balance equation.
A significant number of patients are able to stop their medication. The timeline varies, but usually after 2-3 of years of having the condition. Admittedly, some are less lucky and have to remain on them for sometimes much longer. You tend to know when things are so much better you get chance to experiment with lowering your dose, if you are still feeling ok on lowering the dose you do it again until you are off the medication completely.
I still have to be careful and still have symptoms (mostly tinnitus and mild imbalance). My main cause of relapse now is straining. I have to be very careful that I don’t strain and I keep my head up on a wedge of 3 pillows in bed so I never lie flat.
Yes, this is a known issue for MAV sufferers. If you sleep too long or for too little time your symptoms may increase. They call the remedy ‘good sleep hygiene’. This is especially important if you take a drug which causes drowsiness. For example, Amitriptyline is an extremely effectively drug for MAV and helps you sleep. However, it can make you very drowsy even by morning. You have to work out the optimal amount and time to take it and then go to bed at the right to best make use of it. A rough guideline is take it 2 hours before going to bed, but the optimal time comes from experimentation. Taking meds at 9pm and going to sleep at 11pm is a good example. Getting up at 7am or before would then be advised. Obviously being a growing child he needs his sleep. This is something you should discuss with a suitably qualified specialist who focusses on child health.
In my case I get worse symptoms if I’m lying down too long. For a surprisingly majority of MAV sufferers they get issues lying flat or in some positions. This to me suggests the condition is not simply a migraine condition and is more complex.