I have had VM for about 6 months now. Although the dizziness is mostly when i am in a car for the past 2 months (with occasional quick bouts at home). I have the worst time with nausea and fatigue. Definitely some head pressure and tingling, and weirdly enough sometimes sinus drainage and pressure. But I’m basically stuck at home (for 6 months!!). And sometimes a headache (the bad migraine kind). If I can ride in a car, I can’t go more than 5-10 miles total before I really bring on a migraine episode.
It took forever for doctors to figure it out. And I worked with several doctors before getting officially diagnosed with VM. I was working with a neurologist, but he put me on topomax and the side effects sent me to the ER. After that he said he wouldn’t prescribe me anything else. (Which was depressing…and concerning)
I did my own reading and found heal your headaches book. I’m eating a ketogenic diet + the avoiding HYH triggers. I am also taking the recommended supplements (mag, feverfew, B2, etc). I’ve been doing these two things for a month.
So I went to my family doc again. He’s so nice and works so well with me, but this is definitely not his specialty. And he put me on the Nort. 10 mg. The first 3-4 days I felt about 10-20% better. Then my period hit and had a week long migraine + headache. The next few days after I felt ok, but then day 14-20ish I was so nauseous, dizzy, head pressure and tingling, all came back crazy strong. Worse than it had been in forever.
Then the last couple days I have been back at the point I can be in a car for about an hour with some breaks (like running errands or something). I do take Zofran before getting in a car which helps with the nausea.
My doctor said I can up the Nort to 20mg when I’m ready , but I’m trying to decide when to do that. I have been on the Nort 3 weeks tomorrow.
Should I give it a month or so and see if my body continues to improve? Or should I go at it with the 20? I’m just wanting to try to conquer this on the least amount of Nort and I’m also scared of having another terrible 1-2 weeks as my body adjusts again. But I also want this to end! I want to get out of the house and drive myself places and go see a movie in the theaters!!! I’m 30 yrs old! I want to go live! And do Normal things again!!
Any advice or thoughts?
Also- once I get this settled down, can you give me hope for a normal life? My eating is so limited and I just miss being out and doing life…and traveling… will I always be this restricted in diet or have to stay on Nort forever?
Hey Myst, very sorry you are going through this, sounds not unlike our journeys!
I am on Amitriptyline which is a very similar drug to Nort. They are apparently dose equivalent. I too felt quite a bit better on 10mg, but things REALLY improved for me at 20mg. 3 weeks is enough time I think to up it if you can’t wait the extra week.
You should feel a lot better on 20mg and that should help you get back to a much more normal existence.
You may decide to stick at 20mg. I agree that you should take the minimum that gets you relief of the worst symptoms. You will need to see how this plays out. I also found that there is a maximum dose that is helpful. Ami increased dizziness for me @30mg.
You will still get ups and downs and break through symptoms but don’t panic about those, the meds aren’t a cure nor silver bullet but they do make things tonnes easier!
Note there are side effects but the benefits definitely outway those. Initially I got dry mouth but that wears off. Perhaps the most annoying one is it slows the action of your gut so you may feel slightly bloated. Eat lots of fruit and veg.
I’m sure other Nori users can chime in
Myst13 I am probably not the best person to answer your question but I am taking nortriptyline and at 10mg taken at night it stopped me feeling nauseous and dizzy 24/7 but above that dose I experienced the worst stomach cramps I have ever had in my life so have stayed on 10mg with the addition of 25mg topiramate at the moment. We are all different and there are some people who can tolerate 100mg of nortriptyline so it is just trial and error. You will know very quickly what is right for you and if you have taken more than your optimal dose don’t panic just go back a step. Like me you may need more than one med, both in small doses, or you may be just fine with a higher dose of just one but until you try you won’t know for sure. Try not to worry too much because the effects wear off pretty quickly if you have gone up too high, especially if you go up 5mg a time by cutting the tablet in half.
100mg wow. Yeah I’ve seen some on that. The mind boggles (but probably feels no vertigo whatsoever! ).
hi sorry to hear your dealing with this crap but its nice to say hello! I take 50mg of nortriptyline and im working and looking after my son not easy but at least im not bedridden,it does get easier, I got back to 100% at one point and I was on no medication so im hoping to get back to that! stay calm,relax and do what you can when you can!
You will mellybob! Just keep on truckin!!!
Thank you all so much for the help. Its really encouraging to just have people who understand what you are going through. I had the best day yet, yesterday. I rode around in a car for about 40 minutes without any anti-nausea meds and felt pretty good! I may ride out this 10mg a couple more days to see if it keeps improving, but if not, up it again. I’m extremely glad there are people who have reached a point where they can go with no meds. It seems once you break the cycle and get triggers down, you can start going back down to no meds. Would you guys say thats true?
Work in progress for me. My advice is keep as low as possible whilst still being able to function. Keep up a very regular exercise regime that should include a lot of walking. Do not avoid activities due to discomfort. The advice is challenge yourself. Only then can you compensate.
Thats helpful. Thank you!
Do you guys challenge yourself later in the day, so that if you relapse hard, it doesn’t steal the whole day? I find if I go too hard early in the day, I can ruin the rest of the day.
If its a big relapse I tend not to fight it and take it slow. If its a small relapse, time to hit the road!
Like today, was on verge of nausea all day, felt a bit off and slightly imbalanced (but I’ve felt MUCH MUCH WORSE). I just got on with it and by late afternoon the nausea edge had gone.
But I will add, no matter HOW BIG THE RELAPSE, ive so far ALWAYS COME BACK TO FORM (not that i’ll be competing in any world gymnastic tournaments any time soon though! :D) (but who knows that might be great vestibular training!)
e.g. in December I had a BIG relapse but 3 weeks later I was back to trend. 3 weeks after that I almost (but not … quite!) felt my old self again before any of the MAV crap.
Sorry - what do you mean by form?
As in back to where i was before the relapse, or better.
My doctor told me to increase 10mg every 4-6 weeks until I felt ok, however, I know he takes a quicker and more aggressive approach with others so I think it depends on the individual. I couldn’t tolerate going at the level he recommended to me and it took me a year to get to 40mg as I had to take it so slowly. That’s the point I felt good though. Listen to your own body. I too was always keen not to get to too high a dose, as what goes up must come down!
Yes there is a chance of normal life. It takes a while but it’s possible. Increase the nort until you feel ok, stick to the diet and lifestyle changes and you will start to feel better. I’m coming off the nort and will be able to start reintroducing foods once I’m off it. Stay positive, you can get better.