Thatās really interesting to hear. Iāve just had a silly crying fit and then read this. Now Iām now telling myself that I just have to get used to the hot bath water!
Fingers crossed that you feel a little better later this month 
1 Like
Good for you 
I too am lucky because I have my own business so like you can nip in and out. Mind you it takes a lot to write āI am luckyā when you feel your life has been taken away from you. I canāt stop feeling like Iām rotting away week in week out on the sofa. Days are blurring into each other and weirdly, considering Iām doing nothing, go by very quickly.
1 Like
Yes I know that feeling well itās like ground hog day sometimes. Try to push yourself to go outdoors Natalie too much time on the sofa is a slippery slope so easy to get depressed. I always find distraction helps not a cure obviously but helps you forget for a while. I find socialising difficult now really have to force myself sometimes.
2 Likes
Hi alex,
Im with you on that! Even the thought of going out with friends for dinner makes me squirm! Holding my broken brain up for so long 
too much to handle sometimes!
Hi, yeh its so tiring pretending you feel normal for couple hours. Restaurants, bars are my worse prefer outdoors.
2 Likes
Hello,
I found the first weeks on nortriptyline very difficult (10mg): I think my symptoms worsened during that period. After two months at that dose, I saw a neurologist who increased the dose to 25mg and then 50mg. Things improved (particularly headaches) at the higher dose. 10mg is a very low doseāfor me it seemed to produce side effects but minimal effects on my migraine symptoms. I hope that you are able to find a dose/medication that brings you relief. It is not an easy process to trial and error all the options but I try to keep believing that relief is possible if I can be patient enough to give the different options a fair chance. Wishing you luck and the very best.
I should add that I can see that you have tried a number of other medication and other options and I commend you on your patience and resilience. I will be interested to see what Dr S says: I am currently taking venlafaxine as well but have stopped nortriptyline.
Hi Natalie
We all feel your frustration as weāve all had the same - having to give it time which feels like forever when your suffering daily. Having to give up work is horrible but, hopefully youāll find what works for you to allow you not to put your life on hold.
Ive been on Nor for about 1 1/2yrs now. Dr S advised me to increase it over time until i noticed the difference. Im now on 125mgās and also on Gabapentin 30mgās. Since then it seems to be under control, but i still have minor struggles.
After my diagnosis, I went and had a colourimatory test which was something I found during research. Because I wear tinted lenses all the time and then on the bad days, i wear wrap over sunglasses to help with the sensitivity to light when working in a bright office.
Yes, everyone is different but, it is comforting when you read other peoples stories and to know youāre not on your own.
All the best for your next appointment
why did Dr S have you stop the nort and start effexor?
I sympathise with you both xx
1 Like
Thanks so much for your message, most appreciated.
Iāve just come out with my appointment with dr s and he has told me to immediately up the nortriptyline from 10mg to 20mg and see how I go for 2 weeks and keep upping until I see some benefit.
He thinks that Iām feeling so terrible right now as I donāt have any medication helping me (since I came off sodium valproate and because 10mg nor is so very low). Donāt like discovering that my natural base is so very poor! I am also on venlafaxine 150mg but dr s indicated this was more for anxiety as someone else earlier agreed with.
I have mixed feelings, glad that I have been given clear direction but frightened that I will probably be suffering in the exteme way I have been lately for quite a few more weeks/months.
How are you feeling right now?
So very, very pleased to hear things have improved a bit for you, thatās great. 
Interesting to hear that you had to go up to 125mg nort before noticing an improvement - I need to remember this on my journey of 10mg increments every few weeks!
Iām just psyching myself up for the drive home to London from Kent hospital - for some reason being a passenger in a car (I had to stop driving 5 years ago) has been recently problematic after a long stretch of it being fine. This condition is so strange isnāt it?!
How ārecentlyā. Does it coincide with a change/increase in drugs? Or a change of vehicle? Something must account for it. Although it can sometimes be difficult to find it. Helen
Oh, Dr. S is not my doctor!
I wasnāt seeing great results on nortriptyline after 5 months (helped with headaches but not with dizziness/drunk/floating feeling/visual disturbances). So I asked my doctor (GP, since I was between neuro apppointments) if I could try Effexor XR instead, since I was aware it was Dr. Hainās first-choice drug and thought it was worth a try.
Iām on 56.25mg/day of Effexor XR now and have some progress, but not enough. Iām nowhere near living a normal life and so Iām debating what to try next. My latest neurologist doesnāt even work with Effexor XR much, she told me. She favors topiramate so I suppose Iāll soon need to think about if I want to try that.
Hi Natty,
Can absolutely sympathise with you about being a passenger! Its terrible isnt it? Its all the jerking and not knowing when the person driving is going to break suddenly. Give me masses of head pressure. Im much better driving myself but of course not always possible! X
Hi @Natty
I am so sorry to read your suffering Iām sure me and everyone here can relate to your story as itās so similar so a lot of ours BUT I wanted to tell you donāt give up on nort yet it made me feel worse every increase and when starting I also read dr silver says this is a good sign ! I sadly couldnāt stay on it but donāt give up until you have reached the highest dose and be kind to yourself as it can flare things up before making them better 
Thanks so much for your positivity guys! Dr S said something similar but he also said that a few people are unfortunate and end up having more headaches when on Nortriptyline. Of course impossible to know which is going on! I have definitely been more headachy/migrainey these past couple of weeks since starting Nort (or could be because itās not yet kicked in). Pretty miserable today not made it out my pyjamas. TV and computer just too bright /noisy.
What I really would like your thoughts on is how should I best manage the dose increases. Dr S has said to me that I need to wait 2-3 weeks before increasing Nort by 10mg however so many of you have mentioned it can takes 4-6 weeks for each increase to take effect??
Hi Natty, looks like weāre on similar journey with Nort; Dr S is also my doctor. Iāve started taking Nort recently and Im on 10mg now, have been for a week. Havenāt any positive or side effect. When I started taking propranolol that was the same. I really hope Iāll feel some effect at some point from something!
Hope you start to feel a positive change soon.
1 Like