Hi everyone. Well I spoke with my neurologist Friday, I was having a real hard time starting back up on the Topamax, I was pretty anxious even on 12.5mg so I called to see if he would be able to prescribe a different class of meds. I was nervous about the Depakote being an anti convulsant also and having the same side effects. He called in Nortriptyline (10mg) for me. I stopped the Topamax on Wednesday, took my first dose of Nortriptyline on Saturday night, I noticed my ear felt less full that night, but I kept thinking it must be in my head. The next morning though it still felt less full, I took my second dose last night and this morning I woke up pretty early to get my son ready for school(his first day back) and for the first time since this thing started 9 weeks ago my head wasn’t as heavy. Usually waking up early is a nightmare. I am not close to %100 ofcourse but I am noticing improvements, this can’t be too soon can it? I dont think I’m getting better on my own as it just happened to be after I started the Nort. The only side effects I have noticed so far is drowsiness about 2 hours after I take it, and I seem to feel the “rocking motion” a couple hours after I take it too. That has never my most bothersome symptom though, it’s always been an “off lightheaded” feelinng in my head and foggy, mush brain, along with the heavy head and blurry vision. Knocking on everything this continues.Anyone else have improvement this early on with a drug?
Oh and I noticed no improvement on Topamax but I’m sure it’s because of the tiny dose I was taking.
Rebecca
Hey Rebecca
first of all, great news on the Nori! I am hoping it wasn’t the Topomax AND nori, since you quit the Topa…some people feel better once they quit a med and then it gets worse and they hink the med might have been helping. But lets just say it’s the Nori…my doc in LA says when you hit the right transmitters that are default, you can know it right away. So other people have to take meds for 6+ weeks, and maybe the brain eventually evens out, but he says (and it’s been my experience) the right meds work rather quickly.
Kelley
Thanks Kelly, that’s very interesting. I hope I continue to see something happenIng but I know it’s still very early and I’m on a pretty low dose still. What is the typical dose for Nort? I see I’m on the lowest dose, but is there relief typically seen at a certain time? I really don’t think it was the Topa, but I will keep an eye for anything worsening, I was only on the Topa for one week, quit for a couple days then started back up again with my dose cut in half for a few more days. I’m glad you found the right drug for you fairly quick!
Rebecca
10mg is the usual starting dose for migraine prevention…I think 50mg is the max dose for migraine prevention’
glad that something is working!!
Kelley
I am glad to hear that you seem to be feeling improvement. I am rather amazed that you have only had chronic MAV for a short time and you are already showing some positive reaction with a medication. Im impressed that you saw the right doctors and got a speedy and correct diagnosis.
You are in good hands with Nori, I have heard great things about Nori.
Hi Rebecca,
sounds like positive news on the Nori - fingers crossed for you! Keep us posted,
Tony.
— Begin quote from “rockyksmom”
10mg is the usual starting dose for migraine prevention…I think 50mg is the max dose for migraine prevention’
glad that something is working!!
Kelley
— End quote
I’m at 50mg and doing well, but not well enough. My doc has told me to go to 75mg Nori before he decides whether to add a second drug or not. I’m taking the Periactin too 8mg per night.
For Nori, the doses for depression go up much higher than what they use for Migraine prevention…the dose really is dependent on how the body metabolises meds. Some are quick, some slow…and sometimes other drugs are using the enzymes needed, so they can really affect absorption.
As long as you are seeing improvement, and having tolerable side effects, most docs prefer you to go up on the one med vs. adding more.
This drug does seem to work well for a lot of people.
Muppo, are you sleeping like a log at night ?? 
You say you are doing well, but not well enough. What percentage are you at would you say?
Kelley
Update us on this, might have add to my list of " going to try meds". Must say your doing well. 2+yrs of this and i havent got through many meds and still got all symptoms. Its so much harder when youve got kids that rely on you doing stuff for them and cant take any days off that stuff, so you get reluctant to take meds incase they make you worse(has happened to me) but the end i think its only way, i have to get a bit tougher i think and bite the bullet
Hi Rebecca,
Sounds like good news with the nori. Good luck with it! I am still staying on the low dose topa. Will move up soon. Could not take nori because of the severe heart palpatations. Let us know how you continue to do. Take care,
Karen
ichbindarren-Thank you, I was horrible when this whole thing started, was barely able to get out of bed and care for my kids. Thank God it was summer vacation for my oldest because I could not drive for a couple weeks and my husband works a lot. I thank God for letting me find this forum and for all the stuff I learned from here. Its what made me pursue a MAV diagnosis as I was told I had labyrnthitus and would get better on my own. I hope Nori works out for me.
Tony-Thank you so much! I am rooting for you on Topamax.
Kelly-thanks for the dosing info. My doctor hasnt mentioned titrating me up or anything, he did prescribe me 30 days of 10mg so Im thinking I will call and make a follow up before then to see how Im doing.
Muppo- How long did it take you to notice improvement on the Nori and how many mg were you on at that time? Also what is Periactin?
becd- I completely understand. I have 3 kids, including a 3 year old and 4 month old. I have feared the side effects of meds too, I cant afford to be worse since I dont get a day off. The Topamax made me so anxious that it just wasn’t worth sticking it out for me. What meds have you tried so far? This is only my second med but I’m keeping my fingers crossed it keeps getting better for me. I have done more crying these past couple months then I have in a lifetime I’m sure. I’m ready to have my life back…as we all are.
Karen-Thank you! I’m hoping Topamax works out for you, if you are not having bad side effects I would stick with it too and see if you see improvement soon. I sometimes notice my heart beating a little faster, not too bad, but only right after I take the pill, maybe 30 minutes to an hour after, the it goes away. I also notice the drowsy feeling is fading, the first time I took it I could barely keep my eyes open, I took it about 3 hours ago, and I’m sleepy but nothing out of the ordinary.
I think I’m seeing a little difference, but I think I’m just so hyper sensitive to how I’m feeling that I notice the slightest change. My ear does definitely feel less full though, and actually earlier today didn’t feel full at all, so that tells me its doing something right? I’m still taking the ativan because I know going into stores etc. always sets me off. I’m hoping I will eventually not need it, but for now I’m so thankful for it. I went to Walmart today (the best place to go when you have MAV :rolls eyes:) and usually all the lighting causes me to see everything blurry, but it wasn’t too bad today. I did make the mistake of going back to sleep for a couple hours more after my oldest son went to school, I woke up so groggy and swirly, it took at least a couple hours to settle down. I really think I need to get on a more regular sleep schedule. I will keep you all updated, thanks for all the support.