After 2 and a half years, Iām 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 Iāve done very well and I have an 80% chance of it not returning. Just praying Iām 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 wasnāt that great at sticking to the diet. I think itās 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!
Now I donāt want to stir up controversy and argument, but donāt you think that stat is interesting when you look at this article, which talks about the chance of recovery from Hydrops?:
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 itās working ā¦ 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 didnāt feel so spacey. But it took a while to work with relapses along the way. Now Iām slowly still coming off it after nearly 3 years.
Dr S has gotten me better, heāll 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 , Iām relieved to hear you say it took a while as sometimes I have no idea how long to wait before giving up. Iām so happy it worked for you thanks so much Lorri and so happy to hear ur doing well X
Great you came back with your success story. Shows great empathy.
Could I just ask if the vitamins/supplements were your own, or the consultants idea. And it was B2, not B12. And did you get blood tests in advanceor was it just assumed the deficiency.
Its certainly a long haul. @turnitaround wrote somewhere a consultant told him 2-4 years.
Even after so long. Another point I found so very informative.
I had researched the vitamins/supplements and then asked Dr S for his opinion and he thought it ok to take them. I didnāt 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. Iām able to plan and live my life and even enjoy a good coffee again, bliss!
Youāll get there too,
All the best x
So pleased you have recovered. Within quite a quick timescale for MAV too it seems. Iāve 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 āprobableā MAV diagnosis and started meds, It wasnāt 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 Iām 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. Iāve 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. Iām 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 āthe migraine dietā and was worried about nutrition but I canāt 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 youāre 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 didnāt have a clue!
Dr S keenly advocates the 6cs diet and I wasnāt totally convinced either, but at the time Iād 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.
and so happy to hear ur doing well 
X