I am feeling bad at the moment so thought I’d write a message to cheer people up who are feeling as dizzy as I am now.
I have a friend I met on the healthboards years ago. She was very, very ill with MAV. She is a nurse and was off work for a year, very disabled by the condition. She had a prior history of migraine but never with dizziness and then the MAV suddenly hit out the blue.
Anyway, she tried amitriptyline and propranolol and only experienced side effects and no improvement. Then she tried pizotifen. She very quickly started to get better but the pizotifen initially had a depression side effect. She felt well but for 6 weeks but was so depressed she didn’t even feel happy about it. After six weeks the depression side effect lifted and the dizziness was still gone. She stayed well and stuck with the pizotifen for about a year, then came off it.
She has been pretty much 99% ever since and that was about 4-5 yrs ago. Very occasionally if she is ill with something else or is very tired, she might get a bit of dizziness. She also sometimes gets regular migraine pain but for the majority of the time she lives a totally normal, dizzy free life. She eats what she likes, works full time and has a busy social life.
I know they say migraine isn’t curable and it’s true, she still gets some migraine activity, but the year of her life spent dizzy and vertiginous and miserable twenty four seven is over and has never returned. I think it’s also heartening to know that initially the drug that broke the cycle caused side effects but ultimately came good for her.
Obviously I’m not saying this so everyone runs out and tries pizotifen; we’re all different and one person’s cure is another persons poison. It did nothing for me apart from make me severely anxious. I just thought as a pick me up it would be nice for people to know some people do put this behind them.
Wow, Thank you so much for posting such a positive story!!! My wish is that each of us find an effective treatment just as your friend did. It is a nice thought to start the day. The power of hope cannot be underestimated. Kristen
It seems like it would be the opposite if Pizotifin is a serotonin antagonist (causes decrease in serotonin) while SSRIs cause increase in serotonin. There is an article specifically about MAV and many pts use Pizotifin with great success = mvertigo.org/articles/Chroni … ertigo.pdf
I do not think it is used in the US
Yup, it’s the opposite (not exactly the opposite, to get into the nitty-gritty details of neurobiology; it only blocks serotonin on some sites, but doesn’t actually reduce the amount). It’s very closely related to cyproheptadine which is FDA approved, by the way! (The latter is also used for migraine treatment, mostly in children, but it seems to work in adults as well.)
Hmm. Then this actually (to me) opens the door to a really interesting area: Why both SSRI’s / SNRI’s AND their partial- / near-opposites (serotonin antagonists) have been reported successful in treatment of MAV.
Anyone care to speculate on this?
I wonder if perhaps serotonin levels are actually not involved in MAV – or if they are, only in some patients.
Also quite interestingly, cyproheptadine is also a calcium-channel blocker. Sounds rather promising, actually.
George - you raise excellent points. I wish I could answer your questions. I, too, love answers to everything and not having definite answers makes this illness so very challenging. Perhaps you can ask Dr. Hain tomorrow. good luck w/ appt.
Particuarly as my case is almost identical - except you can trade depression for MASSIVE WEIGHT GAIN. I was a big boy but dizzy free!
I started Pizotifen back in Sep 06 - I was 90% in 2 months and a 100% in 4. I pretty much lived a normal life from Nov 06 - yep Parties , drinking etc etc. It was great! I had a few lapses here and there…but it was so good I’m came of all meds in Sep 07. I was symptom free - 100% - until April 25th 2008 where my MAV came back out of nowhere whilst being a passenger in a car. I have dizzy ever since as Pizotifen failed 2nd time round - dont ask me why - its extremly irritating & the daily nightmare is back.
So here and I am - 5 weeks into verapamil - with some better days - but not the immediate effects of Pizotifen.
I hope this gives you help that you CAN get better with the right med.
Hmm. Then this actually (to me) opens the door to a really interesting area: Why both SSRI’s / SNRI’s AND their partial- / near-opposites (serotonin antagonists) have been reported successful in treatment of MAV.
Anyone care to speculate on this?
— End quote
And to make things even murkier, pizotifen can have an “antidepressant” effect!