When I was feeling low, one of the things that helped the most was reading success stories on here, and it often worried and frustrated me when I looked through the profiles of people who had stopped posting and found no follow-up describing whether their symptoms were still affecting them. For that reason, I thought I’d post my own.
Things are so much better. When I was first diagnosed with MAV, I was experiencing symptoms nearly 24/7. After several months I’d convinced myself that my life would never be the same again. I wish I could go back in time and tell myself that things were going to improve tremendously.
What helped? For me, the two biggest things that have helped me recover are 70mg nortiptyline every night and being extremely careful with my sleep. I only realised how much my MAV was connected to my sleep patterns after I started using an online migraine tracker (MigrainePal). It turns out if I get half an hour less (or more) sleep than I do usually, or if I sleep the same amount but shift it back or forward by half an hour, it can be sufficient to give me low-level symptoms. This might not sound like recovery to you all, and it does lead to a slightly more restricted life, but for me having to have a consistent sleep schedule is a small price to pay for going from 24/7 MAV to being symptom-free most of the time.
I would strongly recommend Dr Surenthiran as a doctor. After months of waiting for NHS treatment, I eventually decided that putting your life on hold (and feeling severely depressed and anxious, as I did) for the sake of saving a few hundred pounds is simply not worth it, and I paid to see him privately. Of course not everyone is able to do this, but I’d recommend it if you have the means.
I hope this provides some hope for anyone who has been newly diagnosed or is struggling. Despite having to manage this condition, I left university last year with a first-class degree, and I’m returning to university next year to study medicine and (hopefully!) specialise in neurology. Please don’t let this condition take away your sense of hope - most people with MAV can and do get better. xx
It’s really good that you came back with your sucess story because MAV can so easily take away all sense of hope. You’ve left such a nice comprehensive summary to inspire others. Your action shows your great empathy which will surely stand you in good stead for the future.
It’s amazing so little (meds and a regular sleep pattern) has given you so much. I’m sure I’m not the only one currently on this forum who is overjoyed you are working towards using your MAV experience so positively.
At least we know that at some point in the future there should be ONE more neurologist out there who, on MAV, actually does know what he’s talking about. That’s reassuring in itself.
So happy to hear you found a path to wellness and way to go in studying neurology! We need MANY more neurologists who have suffered from this condition first hand. Not that I’m wishing it upon anyone, it would just help so much to have a doctor that truly understands the daily struggles.
Sorry for taking a little while to get back to you. I’ve been on nortriptyline for a year and 3 months. I started on amitriptyline 10mg but switched to nortiptyline after finding out it’s less sedating. It’s never stopped working for me, it’s just that the lower doses only had incremental benefits. I worked my way up to around 30/40mg convinced that it wasn’t doing anything for me, and it’s taken 70mg to stop the symptoms entirely (provided I’m on top of my sleep).
Dr Surenthiran says that people respond to it in different ways: some get incremental benefits whilst for others, reaching a certain dose can be like flicking an ‘off’ switch on the condition. For me, I’d say it’s been the former. I can continue to increase the dose all the way up to the maximum dose of 150mg if needs be, and Dr Surenthiran’s next step would be to add an additional medication (gabapentin). The most important thing is to stick with a medication until you’re sure it’s not working for you. When I was on 10mg nortriptyline and it was doing nothing for me, I felt extremely frustrated and wanted to move on to something else. Waiting several months to titrate up was the last thing I wanted to do. But if I hadn’t, I would never have discovered how beneficial it can be. Obviously side effects can be a barrier to this, but in my experience side effects are worse at the beginning and it’s worth seeing if you can ride them out.
I should emphasise that I think lifestyle changes played as a big a role as medication in my recovery. For me, this is particularly true of sleep, but also avoiding alcohol and caffeine, limiting my stress as much as possible and exercising regularly.
Dr Surenthiran uses a simplified analogy of the brain being ‘wounded’ by MAV, and medication and lifestyle improvements being the factors that will help that wound to heal.The ultimate goal for me is to come off my medication and be free of MAV. Dr Surenthiran believes this is entirely possible. In fact, he says he’s never had a patient who, long-term, he hasn’t taken off their medication. How amazing is that? It just goes to show that (as much as this forum was an absolute lifeline for me at my lowest points and also a goldmine of useful information) the stories that you see on here are only a small part of the bigger picture, and many represent the stories of people (like my own story) who are at the beginning of their awful MAV journey or have (unjustly) been denied rapid and/or appropriate treatment.
Well as you may know I’ve been off mine 100% for 9 months now so agree with Dr. S. Been tempting to go back on at times but I’ve realised I can now ‘manage’ without and have improved a lot even during those 9 months. For me atm it’s about keeping physical activity within some broad boundaries (interestingly another Dr. S. guideline I note!) - for me no heavy lifting (which can be annoying with luggage or household chores), no lying flat in bed, minimise bending down. Progress to get better seems to have slowed a bit but things are much more normal now. No migraines at moment, no head fog, and my balance is at least 85% all day (touch wood) Oh and I’m drinking cawfee (probably two much: two cups a day). Night and day from even just a year ago.
The first one I picked out to record for posterity as it were was
Having found my meds took alot longer to really work, this resonated with me. However it was such a good post I felt I wouldn’t know when to stop picking out quotes so saving the whole is maybe the best option,
Thanks so much for sharing this , like you I have had mav for 8 months 247 and I’m on 30mg nort . Dr S is also my doctor . I was freaking out that I’m not better yet so there must be something wrong with me . Why isn’t the drug working yet but reading your story has given me so much hope . I feel exactly how you did so thank you so much for sharing . Out of interest at what dose did nort start to help?
What a wonderful story! Thank you for coming back to share your success, Daniel! This in itself shows your compassion - a wonderful trait in a doctor!! Wishing you every success with your studies - as everyone says, we need more Doctors like you who actually understand!!!
What a wonderful story and well done you for being “sensible” at 23 and structuring your sleep… and you are right, what a small price to pay for a better quality of life. I just joined recently as my son who is now 11 had constant dizziness as well as all the other symptoms of VM for 9 months. It appears that I have intuitively been doing all the correct things. I noticed that if he went on a “sleep over” it tipped him over the edge and put him back into 1-2 weeks of bad health, so mon-sunday he is in bed at 8.30-9pm and this works brilliantly. He is young like you but when recently invited to a camp out, he just asked me if he could go and if I could collect him about 10.30pm. He absolutely hates it when his sleep is thrown out, as it was on a school trip, and 1 day after he came back from his trip the dizziness came flooding in and he had to hold on to the walls in school to keep his balance until I got to him. This just lasted a week and he is great again but his recovery is all down to lots of sleep and chill and nothing too physical.
A massive congratulations on your degree, everyone including yourself must be so proud of you, and what an amazing neurologist you would make with such understanding for any future sufferer’s that come to you.
Lovely for you to share your story