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Amy on Pitzotifen


Hi Amy

Sorry to hear that you are struggling at the moment - I think you are still doing really well and are probably expecting too much of yourself and your head is rebelling. When I started to feel better I also made the mistake of pushing myself too much - gardening, cleaning etc which always led to a relapse. dr S told me that most people try to do too much when they feel better. I think @Onandon03 is right when she says that you are missing your boyfriend too which will also contribute to how you are feeling. This time of year is quite miserable anyway - although the sun has appeared today for the first time in ages- without having a chronic illness added to the mix. I can also remember feeling as if my eyes and brain weren’t in time - Dr S says that my eyes, ears and head were out of synch which is why I was unbalanced and had vertigo. Luckily for me the Piz seemed to solve this so hopefully upping your dosage will work for you.
I know how you feel about work - I am glad that I have been able to go back to it, but it really exhausts me and my job isn’t physical like yours.
Keep on keeping on and be kind to yourself. Jan xx :pray:


Hi Amy

Glad things are still edging upwards. I’m behind you as I’m going up more slowly in dosage than you. I’m due to go up to 4 tablets in four days time, following Dr S instructions. I did too much last Thursday (twisted and turned on ladders to clean struts of sloping glass kitchen roof and have paid for it since then).

However, I got on a ladder!! which was incredible given that last year my head swam on one when trying to change a light bulb. Dr S is right that we shouldn’t overdo it or have stress, not take on a lot of work but you have to survive. I don’t think we are ill in the right way for the benefits sytem as even most doctor’s think we are just over anxious worry warts. I’ve found friends and relatives very unsympathetic even my partner only really “got it” when he came into the first Dr S appointment with me and had it all explained.

Stick to the plan. I don’t think there are any quick fixes, especially when the roots of it all can be traced back to childhood/adolesence. Be kind to yourself. I felt teary too this morning as my finances are just
so dire, I feel such a failure and frightened by it. My sister was angry with me too (like yout friends)as I wouldn’t commit to some family event that requires plane travel and a hotel stay at her location and told me that " it’s not like you have dementia or cancer!". Thanks.

I understand how tiring it is always having to pull up your pants and get on with things. Sometimes I think we should just allow ourselves to have a weep and wallow or rage for a bit as it acts as a vent.

Hope tomorrow is a better day


Honestly I almost cried when I read that , I felt like that so many times !i Remeber feeling dizzy just moving from my bed and I actually didn’t have any one to look after to me so it was jus horrific so I have to remeber how far I have come . I am so greatful for this community and I think ur doing amazing :slight_smile: one day this will be a memeory and hopefully our messages will help others on their journeys x


Ah I’m glad ur seeing him Lucy I may have missed it but how did ur app go? It’s a long road but I believe there’s an end :pray:t3:


Hi jan

Thanks so much for the kind words really sweet of you and I bloody needed after spending most of last week in tears. I’m working so much and I think ur right maybe I’m not realising just how much it’s affecting me however I have to earn a living and pay bills.

Dr s was right for some 1.5 clears it all up and for me lol well I guess I have a stubborn brain but this illness has made me so appreciative of life and I’ve decided I’m not pausing my move to the states so I am still moving the end of the year I was a lot happier there especially with my bf . Bless him he’s coming over for 6 weeks next month to help me I do have a keeper . He has been beyond understanding without this site and him I wouldn’t of got through last year at all.

I hope ur resting lots being a teacher is mentally draining so it must be testing for you .

Oh yes my eyes and brain are not in time yet it’s better than it was but I can feel it’s such a bizarre sensation things just don’t quite catch up ! Wierd !

Thanks so much for the support really means a lot jan :slight_smile: hope ur still doing well . I had tinnitus the other day and thought of you hadn’t had that for ages no idea why ! I give up trying to figure this illness out ! :woman_facepalming:t2: X


Hi @sputnik2

I literally feel for you as I have had the exact reaction from my friends not all of them some have been amazing they may not get it but they try !

People can be so cruel I lost my parents to cancer and I can tell you this crap is in some ways worse no one can see it and the symptoms are so wierd and bizarre . Don’t let ur sisters commente get to heart my older brother has said similar but I am pretty rude back now and just say NO!

You have a real condition and if people can’t understand that’s their problem ur main goal right now is health so be kind to yourself.

My whole job is over doing it so there’s not much I can do about that tbh I have to work! And it’s a strenuous mentally draining job :woman_facepalming:t2: Although i supoose working on a screen is worse ! But hey ho just gonna keep going there’s no quick fixes with this mav crap!

I did ask dr s about the spaced out feeling and it seems this should go once the symptoms do so here’s hoping pitz is the answer for both of us :slight_smile:

Sending lots of hugs :slight_smile: x


Dr S confirmed I have MAV and started me on nortriptyline. I came out of the appointment with new hope and reassurance. I’d been feeling pretty desperate stuck in this illness until then.
You’re so super brave doing everything you do and how you keep fighting to get better and earn a living :slight_smile:


I wonder how many of us left our Dr appt where we had a “real solid diagnosis” and broke down? I did :raising_hand_woman:t3:
Such a sense of relief and renewed hope! Hang onto that feeling Lucy, there will be better days ahead and we are fortunate to be moving in the right direction… not stuck in place any longer :hugs:


Hi Amy - that is fab news - good for you. It is so much better to be with your understanding bf as the support our family and friends can give really helps, plus the pending move will give you another goal to work towards.

You are obviously a very strong person as you have continued to work despite everything that the MAV beast throws at you - your stubborn brain is keeping you keeping on and I salute you for that.

I think I am doing alright thank you :grinning: I know that many Mavvers are much worse off than me and I am thankful that I can at least get on with things without feeling dizzy. If I could just get rid of the tinnitus/ ear /head pressure it would be even better, but that is my goal for this year!
Have a good week. Jan xx .