After 2 and a half years, I’m finally feeling like my old self. I saw Dr Surenthiran a couple of weeks ago and he has told me I can start coming off Pizotifen in April. Yay!!
He said I’ve done very well and I have an 80% chance of it not returning. Just praying I’m not in the 20%. He advised me still not to overdo the activity. But I have been able to do so much more without getting ill or any symptoms.
Dr Surenthiran also said I can start reintroducing foods, but tbh I wasn’t that great at sticking to the diet. I think it’s the meds that have got me here and I am still on magnesium, B2 and CoQ10.
I am so much better and never thought it would happen, so hope this helps people out there suffering with this monster, there is light at the end of the tunnel and you do recover!
Loved reading your success with pitz @Lorri I also read your posts we had similar symptoms I massively get the spaced out disorientated feelings especially when outside . Could I ask how long it took for the pitz to help this ? Dr s is also my doctor and this is his next choice for me but I never know when to continue a med or when / if it’s working … thanks so much a
Pizotifen worked for me. I noticed a small difference after a few weeks, attempting to walk along the street got a little less disorientating and I didn’t feel so spacey. But it took a while to work with relapses along the way. Now I’m slowly still coming off it after nearly 3 years.
Dr S has gotten me better, he’ll get you there too, but be prepared for the long haul.
Best wishes x
Thanks so much for coming back and replying really means a lot , I’m relieved to hear you say it took a while as sometimes I have no idea how long to wait before giving up. I’m so happy it worked for you thanks so much Lorri and so happy to hear ur doing well X
I had researched the vitamins/supplements and then asked Dr S for his opinion and he thought it ok to take them. I didn’t get a blood test to check levels. I asked my GP recently if it was ok to stop them, but she advised to come off the Pizotifen first.
I have been so well for about a whole year now, but I do pay heed to not overdoing stuff. I’m able to plan and live my life and even enjoy a good coffee again, bliss!
You’ll get there too,
All the best x
So pleased you have recovered. Within quite a quick timescale for MAV too it seems. I’ve had what turned out to be MAV almost 15 yrs now, it was episodic for more than a decade then went chronic in December 2014. Even then it wasnt until October 2015 I got a ‘probable’ MAV diagnosis and started meds, It wasn’t until April 2017 after a further migraine neurologist appointment I got onto a dose of meds high enough to really help. Now 18 months on I’m very much improved and can almost imagine, if things go on as they are gradually improving, come the 3 year mark - in another 18 months - I might be lucky. Hope so.
An interesting comment. I’ve been told no need to both quitting caffeine or restricting any form of food. Just eat balanced diet, From your comments it would seem you were really expected to comply with the diet for over 2 years. I’m not a medic but I really find it hard to believe - particularly with no dairy - the Migraine Diet is not lacking in nutrients, particularly calcium for women of child bearing and/or menopausal ages. Here is where I think medicine as currently practised shows a need for a more holistic approach. Helen
Each doctor seems to have a different version of this diet. Most of the diets I have seen here in the U.S. allow milk, american cheese, and cottage cheese. Just no yogurt or aged cheeses. I am on “the migraine diet” and was worried about nutrition but I can’t find any deficiency.
Doing an elimination diet for migraines is much different - you go on a super restrictive diet like lamb and rice for all meals and then slowly add things in.
So glad you finally got the right help Helen it sounds like you’re doing do much better. I too had bouts of MAV in my 30s, 40s and 50s, each time it ramped up and all the neurologists I saw didn’t have a clue!
Dr S keenly advocates the 6cs diet and I wasn’t totally convinced either, but at the time I’d have done anything to get better!
In fact when I saw Professor MacGregor she thought it restricted essential nutrients too. I think it was definitely the Pizotifen that has gotten me better.