I have been back on Pizotifen for 5 weeks now. Only side effects were drowsiness at first and I have a few stomach issues on it (bloating). Also a bit of weight gain, but not as bad as when I first took back in 06.
I would say January has been my best period in the past 2 years, so things are defo looking up. I still don’t feel that great all the time though, and I haven’t been 100% symptom free. This week for example hasnt been as good as last week, so I hope I’m not going backwards.
That said I am keeping very active. Going to the gym, sports climbing and socialising quite a bit. I even survived a date with a girl I have been seeing, been to job interviews (even though I feel pretty weird) but I’m holding things together.
I will have to stay on this drug for a few more months to see if I can extra benefit. I was on 1.5mg, but as of yesterday decided to bump it up to 2mg.
Anyhow, I’ll keep you posted. Its bizarre how no other drug but this has had any benefit, but everyone is different.
I was sorry to hear about Nance. I’ve been where you have been 98% to 0% overnight. Its really tough and I hope you get better.
Good to hear. I have a new nugget of info courtesy of Emma via Dr Robert Baloh (UCLA) for you. Guess what med they use that is highly effective for migraine? Citalopram. This is the first time I’ve ever heard this about Cipramil/Celexa. He has clinical data to support this, probably not published yet because I’ve not seen anything on this. What I like about Baloh is he is hard-care science-based and does not rely on anecdote. He prescribes based on the evidence and does not like multi-pharmacy either. He prefers ONE drug only and promotes lifestyle changes heavily. Sleep, he says, is paramount for someone with a migraine brain; it must be consistent and always the same pattern of going to bed and waking at the same time.
You previously used Citalopram with Piz and got results. It may have been C that did the job for you and not so much the Piz. You could try adding in C again if Piz alone is not enough. It worked before, it should work again. Alternatively you could add Lexapro (same molecule but cleaner mix) or Paxil or Zoloft, both of which share some similar chemistry to Citalopram. One of the ADs alone might do the job without the need for Piz. Baloh states, like most, that it’s a crap shoot. We simply cannot choose a drug based on someone else’s experience. There is no rule for this. We gotta try all of them.
So you still seeing the new girl? Were you feeling dizzy on the date or all good?
Interesting that Baloh likes the SSRI’s. My doc, Dr. Newman, is a big fan of zoloft and swears by it for treating MAV. He says he has had very good results and usually prescribes it first-line, depending on patient preference of course.
Thanks for the info! Interesting research to say the least!
I’m going to stick with just Pizotifen until I see my neuro in a few months. I want to trial it on its own for a good period and then we can throw in Citalopram if I’m not getting back to where I was a few years ago. Thats kind of what we agreed at my last appointment - we really need to work out what is working and what isn’t. I really appreciate the advice though.
Things are going quite well with the new lady. She doesn’t really know about the full force of the MAV monster. To be honest I dont really want to discuss it until I have to as its boring and I would rather keep my mind off feeling dizzy and enjoy life.
I have had a worse week this past week, but I think its because Ive been having late night and been very active & on the go. As you know MAV hates inconsistency, but I have to admit its been nice living close to a ‘normal’ life, even if I’m not 100%. I would say Im knocking on an 80-85%. Still can shake the vibrating visual issues either.
I was diagnosed with migraine associated vertigo a couple of weeks back by Dr Surenthiran. I have actually had this condition for 6 years but was misdiagnosed with labs/VN.
My symptoms are chronic imbalance, giddiness and unsteadiness, especially when standing still.
I was initially started on nortriptyline and gave up after 6 days because of side effects- the sedation part was flaring up my dizzy symptoms. I came off that and have started Pizotifen.
The prescription I have been given is 1.5 mg 3 times a day. I took my first pill last night (0.5mg) and I have woken up today with heavy unsteadiness and am very tired and my symptoms are flared up.
I am too scared to take it again!
Can I just ask- did anyone get side effects with this med the day after you took it? If so long did they last for? Is it normal for the dizziness to feel worse initially.
I’m pretty desperate right now and in need of some hope.