After seeing Dr. S I have now been on an increased dose of nortriptyline for 3 weeks at 35mg. I haven’t seen any improvements at all, if anything I’m worse than I was before. How long do you all feel (with all your experience) that you need to trial a drug for before asking for an alternative? I’m nervous of upping the dose further as I have been so much worse since the jump from 25-35mg. The feeling of walking on a boat is so bad. A week after increasing the dose I had a horrendous turn at Waterloo station and sat in floods of tears on the phone to my husband before mustering the courage to even walk across the platform to catch my train!!!
Also, out of interest does anyone live in the South East area of the UK? It might be good for a few of us to meet and discuss symtoms/tactis for coping etc.? Not sure if this has been done before? I am in Surrey.
P.S. On the nortrip leaflet it says not to drink alcohol…has anyone had a drink on it??? Ive not had any wine since this all started 5 months ago and I’m beginning to crave it!!
I do am a patient of Dr S & have been on nori since July this year. I have just upped my dosage to 60mg to be honest the higher I got the less med sensitive I got. I upped by 10mg every 2 weeks as Dr S instructed. I think that I began to find relief around the 40mg mark. I am by no means cured but ‘the fog is lifting’, the last time I saw Dr S he said that I may need another drug added which is perfectly normal in our situation. Regarding the booze, I asked Dr S if I could have a few wines for a VERY special occasion he said I could have half a glass! I really think its best to avoid it if you can. I know it’s boring but we must keep reminding ourselves its nit forever!
Regarding the meet up - I would be very up for that , I’m in North London- Anyone else?
Ha ha thought as much about the wine! Yes you’re right, looking forward to a massive glass of wine on a dizzy-free day in the future!!! Maybe if more people are keen we could arrange a place in London somewhere central? It’d be good to chat to others going through the same thing. How long have you been ill Anna? What are your symptoms like? I have had strange periods of visual disturbances for years on and off which I’ve always been told are complicated chronic migraine. Had sudden dizzy spell and massive pressure headcahe in July this year and have been dizzy 24/7 ever since with jumpy vision, unsteadiness, feeling like I’m walking on a ship in rough seas…it’s a nightmare and all the tougher as no-one can see anything wrong! Shall we keep an eye here who else is keen to meet and try to fix something before Christmas! XCan toast our dizzy festive season with a decaff soya latte!! x
hi - i also see Dr S and i am on notrip - at 20mg felt good but then relapsed, so am now currently on 40mg and been told i can up to 75mg if need be, going up 10mg each 4-6 weeks. I have had a bit of alcohol but hardly any. Would rather not the dizzies but its my birthday in Jan2013 so will have a bit of a drink then.
Think my triggers are hormones/PCs and lighting but still trying to determine them.
Lizzie, I’ve been unwell for a year and a half - got diagnosed in July this year, I’m currently on 60mg of nori (I have just upped my drugs as had a bad spell recently ) i next see DR S in January so I’m trying to be super good on the diet so I can try & enjoy christmas day with my 2 small children.
Ok great so that’s Anna, Brian and Robert! Fab. It’d be really good to get to know other people who are going thorugh the same thing. Does central London seem like the best place to meet? Anna, it must be extra tough as you have 2 small children, and horrible it’s gone on so long! I have only had this 5 months and I’m already so fed up! So in the 1.5 years you’ve been ill… have you had any times where you were free of symptoms or much better? I have definitely imrpoved since the very beginning of all this but I still have such ups and downs. I can find getting around the house hard one day and be able to do a bit of jogging another…anyway hopefully if we can sort somewhere good to meet and a suitable date we can all chat about all our symptoms and coping tactics!! Weekends are best for me and my train line comes in to Waterloo, any suggestions from other people of places/dates??
Hi all,
I too am a patient of Dr. S and I’m in Herts. MAV support groups where people can physically meet and discuss issues face to face would be great. Typing is hard (and tiring!) and it’s often difficult to get a point across!
Tony.
How does everyone feel about Saturday 15th Dec? At Waterloo station? Could find a coffee bar there? Anyone else keen? Be great to have some face to face support as tony says.
I will be flying into London City airport on 12th December. I would be interested in meeting up with you all also… if not in London, do any of you live near to Folkestone?
) i next see DR S in January so I’m trying to be super good on the diet so I can try & enjoy christmas day with my 2 small children.