Dr Rauch's comments - cheers Scott

Hi All

Logging into this from SE Asia is a perpetual nightmare!

Anyhow, first of all I would like to say a massive thanks to Scott for the time and effort he put it to getting a response from Dr Rauch. It’s great that this forum is developing to a point where we are getting top quality informative medical opinions. If it wasn’t for sources like this, my 5 year MAV journey would be a lot less informed.

Interesting that Rauch says that MAV is not curable, but not intractable. I fall into the category who was symptom free for 18 months (1 year on Pizotifen and 10 mg of Citalopram & 6 months of no medication). While on meds I did party very hard and had a great time after so many years of misery - I loved life and have no regrets. Ironically, it was while I was on a strict dietary & lifestyle regime for another disorder that my MAV returned one day, while travelling in a car I felt really damn weird. Boom - exactly 1 year later I’m still symptomatic.

My question to Rauch would be - Do you find that somebody who is 100% cured, yet tries the same cocktail of medication is unable to shift symptoms again, once they become symptomatic for a second time? I was GUTTED that they didn’t work again. I have always wondered if I had stayed on the meds the whole time, would I have had a relapse or is this just how MAV works - a cycle of remissions and illness throughout life?

The only positive hope I have is that I can manage my symptoms to a point of being 90% all the time - instead of being symtom free - ill - symptom free. The lasting impact it has on your life, career and relationships should not be understated!

Anyhow, thanks again Scott

Luke

Hi Luke,

No probs my friend. There’s a few other things cooking too for the forum. Jenny came up with a really good idea to follow up on yesterday that we’re working on. More on it later!

I think what Dr Rauch would say is that, at the end of the day, you are a migraineur – you’ve got the genetic predispositon for this and thus have the potential to develop a “migraine brain” just like someone else might end up developing chronic eczema or a kidney stone problem (a guy I know has to drink tons of water and do other things to avoid stones from forming all the time). While you were on pizotifen, you “grew taller” in the pool and none of the waves put you under water. Once off pizotifen, you probably shrank again – but it took time. My guess is that had you stayed on piz you likely wouldn’t have relapsed but I sure don’t blame you for trying to go without a med again – I would have tried the same thing. But why pizotifen didn’t sort you out the second time I don’t know. I suspect even neurologists wouldn’t know the answer to that one. I cannot think of any logical explanation to that unless the body or the brain develops some sort of tolerance. Who knows? Strange that the MAV returned when you were looking after your diet and lifestyle although I suspect that won’t be enough to keep your head well above water and may have been a coincidence that it started again at that time.

Are you still hanging in there with Verapamil?

Later … Scott :slight_smile:

— Begin quote from “Dizzyrascal”

Hi All

Logging into this from SE Asia is a perpetual nightmare!

Anyhow, first of all I would like to say a massive thanks to Scott for the time and effort he put it to getting a response from Dr Rauch. It’s great that this forum is developing to a point where we are getting top quality informative medical opinions. If it wasn’t for sources like this, my 5 year MAV journey would be a lot less informed.

Interesting that Rauch says that MAV is not curable, but not intractable. I fall into the category who was symptom free for 18 months (1 year on Pizotifen and 10 mg of Citalopram & 6 months of no medication). While on meds I did party very hard and had a great time after so many years of misery - I loved life and have no regrets. Ironically, it was while I was on a strict dietary & lifestyle regime for another disorder that my MAV returned one day, while travelling in a car I felt really damn weird. Boom - exactly 1 year later I’m still symptomatic.

My question to Rauch would be - Do you find that somebody who is 100% cured, yet tries the same cocktail of medication is unable to shift symptoms again, once they become symptomatic for a second time? I was GUTTED that they didn’t work again. I have always wondered if I had stayed on the meds the whole time, would I have had a relapse or is this just how MAV works - a cycle of remissions and illness throughout life?

The only positive hope I have is that I can manage my symptoms to a point of being 90% all the time - instead of being symtom free - ill - symptom free. The lasting impact it has on your life, career and relationships should not be understated!

Anyhow, thanks again Scott

Luke

— End quote

I am curious what made you decided to come off the meds? Were you having side effects or just thought you might no longer need them?