A question for Scott or any other diehard MAV Veteran

Hi Scott & friends,

So I am trying to wrap my head around what to expect from this condition. I found your MAV Survival Guide to be spot on and it has been super helpful to have those close to me, read through it, as they have a better understanding of what MAV can do to a person.

I am posing this question to you as you seem to be vastly more knowledgeable than anyone else I have encountered in the medical world, esp since you suffer from it as well. I am assuming that this condition is not curable, only manageable with the right meds, correct? And if you find meds that help, does the condition go into remission? Or is it only controlled for the time being? And are you always vulnerable to the fact that it can rear its ugly head at any moment? I saw you mentioned some place that it is an ever changing condition, which I have had the pleasure (or displeasure) of experiencing for the past 16 months.

I have been trying Nortriptyline and found it to be helpful to an extent, but it is not a linear improvement…sometimes it is and sometimes I slip back.

It just seems like this condition is a moving target and I am trying to better understand if one can truly get it under control or not.

Thanks,
Kim

Hi Kim,

I’m not a MAV veteran by any stretch, but I do remember a few posts talking about the fact that most of the people that get well and stay well tend not to post much (or at all) - understandable! There are a few lovely souls that hang around to help out the newbies struggling with it all.

While waiting for others to jump in, have you read the success stories thread? I find that very encouraging when I’m having a bad patch for no reason that I can put my finger on.

Gabrielle

Hi Kim,

Calling this a “moving taregt” is very accurate in my opinion. The goal posts are constantly moving for some of us.

In a nutshell, the way this works, is that you MUST isolate and remove triggers if you can. I know some have great difficulty finding them and so Carolyn Bernstein recommends keeping a diary. The reason we must write things down is because our brains do not rememebr things accurately and we are all prone to what’s called confirnation bias. Worse, there could be a combination of things that sets you off and that is very hard to deduce without keeping records. If you succeed in managing triggers, a migraineur may never need meds. However, I think the tough cases like the people who tend to hang around forums like this do need a med on top of it all to increase their threshold. A med is generally a supplement to the lifestyle mod and not a substitute. However, in some cases a person on an effective med may be able to start doing things again that may have previously been a trigger (like drinking wine again).

You are right that there is no cure for migraine. We are born this way with a migraine brain. There’s some out there on other forums who will tell you that other diseases cause migraine but it’s complete nonsense and without evidence. Whether or not the migraine expresses itself is dependent on so many things: age, hormones, foods, other ailments that may have acted as a “Big Bang” setting this into motion etc. Some do gain control with the addition of a med and, after a year or so, can come off the med and stay in remission. This happened to Helen after 2 years on pizotifen. Others will need to remain on a med for years or for life. I have accepted the latter is the hand of cards I was dealt. Even on an effective med, it is still possible to set off an attack though it will likely be very brief and go away fast. A big stressful life event is just the the thing to cause a meltdown.

Nori seems to be a good med for many with MAV but you may have to have a chat with your GP about increasing the dose or moving on to something else if you continue to slip backwards too often.

Hope that helps and good luck … Scott 8)

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Thanks for your input Scott…and yours too Gabrielle.

Best,
Kim