Hello everyone,
I have been taking Nortriptyline for 10 days now and feel like I am going backwards BIG TIME! First the increased headaches, and now I am so incredibly dizzy and have shocking blurred vision. I am taking the go slow approach and am only on a 5 mg dose ( I am frustratingly sensitive to meds). Is this the norm with this drug? Am on the verge of giving this med the flick…is making life sooo difficult. Will I hang in there? Love to hear from you…
Kylie
Sorry Kylie.
Im on 10mg and adjusted rather well. Even the one SE I did have, went away on its own after 2 weeks.
I did not go well when I bumped up to 15mg, extra dizzy and couldn’t sleep.
Have you tried 10 yet? I always think, hmm maybe its to small dose that’s messing with me. But then again,
on the other hand, if 5mg is doing that then, who knows. Ask your doc if its possible that 10mg may not be so bad.
Keep us posted,
Kristina
Kylie,
Can you take a low dose benzo while you are adjusting to the Nori? SOmetimes when we are so certain of our med sensitivity, we can exacerbate the side effects while first of all, looking for them…and secondly, our anxiety spikes…both things will make it worse. I’ve been there, so I get it.
WIth that being said, my doctor says when you hit the right med…it’s more quickly noticeable for the better…which has been my experience…the right meds have made me feel better somewhat quickly vs. the ones that were just crappy from the get go.
Also when Dr. Hain put me on Effexor, I felt worse. I asked him if I should be feeling worse before better and his response, “No, just better”…
So maybe decide if it’s worth it?
There are so many to try…
Kelley
I’m so sorry to hear this. I just wanted to add that when I took nortriptyline I had significant increase in dizziness for first 10 days or so, and then got back to my baseline. I always hold on to this story and wanted to share it again - I know a woman who was very sick with MAV. and, she also had exacerbations every time she increased nort for 10 days or so. her doctor thought it was normal and increased her very slowly. She had to go past 100mg but she got better and better, and now is pretty much 100%. So, I respectively have to disagree that if a med makes you worse at first that it will not work.
I started on 10mg of nort a couple of weeks ago. At first, I didn’t really notice a difference. After a week or so, I started having a hard time falling asleep. I was shaky and dizzier than normal and would toss and turn for at least an hour. Because of this, a few days before I was supposed to go on vacation, I went off (I didn’t taper because I was still on 10mg) in hopes of cleansing myself and getting back to baseline prior to vacation. However, after a few days, I started having really bad episodes, to the point where I had to cancel my trip because I felt so miserable the night prior to takeoff. After a few more days, I decided to give nort another chance. The first morning after restarting nort I noticed that I was not nearly as dizzy as I had been over the prior week. I wasn’t cured of my symptoms and still very much had MAV, but it was a “good” morning, and it gave me some spring to my step. I was even prepared to go up to 15mg that night (last night) except that I had trouble splitting a 10mg capsule in half. Unfortunately, I woke up this morning feeling dizzy as ever and very spacy - pretty much the opposite from yesterday. Nort seems to impact people so differently, even at these low doses. If you decide to stick with it, best of luck - truly!
I def think the Nort blew up in my face. Took me backward as far as dizziness is concerned, and also gave me a splitting headache. And I’m not one of the big headache sufferers. I’m more vertigo, spaced out, vision problems. Oh well I think it was worth a shot. It def helps others as you can see on this forum. Keep at it!
You guys are fantastic! Thank you so much for the advise. It is frightening to think where I would be without this forum and all of your support. I am in two minds about this med and I think you’re right Kelley in that I am pretty anxious at the moment. I am just so desperate for this drug to work I guess. Nervous about bumping up dose to 10mg as I needs my wits about me with a busy week ahead and three little ones. Been terrible the last week, and feel so guilty that I am not spending enough quality time with my kids. Have just been doing the bare minimum to get through the day. My biggest fear is the kids will have memories of a “sick mum”, forever at the doctors. This condition is robbing me of the best years of my children’s life… 
I really appreciate your responses. Brilliant advise. I think I’ll tough it out and give it longer. Thank you xxx
Hi Kylie,
I was on 10 mg of nori until last month when I upped to 15 mg capsules. I definitely saw an increase in dizziness, dry mouth, and heartburn during the first 7-10 days on the higher dose. The last 3 weeks have been better. I am not 100%, but most days I am about 80%, with moments of disequilibrium, especially after driving or lots of head motion. My doctor suggested that nori can take up to 2 or 3 months to really settle into your system, so hopefully your side effects will level off. As for your family concerns, I totally sympathize. I am a single mother of an 11 year old son, and he has been a real trooper as I have been going through my MAV craziness. Please don’t feel guilty about being ill! You did not make a choice for this to happen, so release the guilt. It has been difficult, but I have come to accept that MAV is part of my life, and I can do what I can to prevent symptoms but, the fact is, it is always with me. I continue to participate in as many of my regular activities as possible, but just know that some days I may have slow down and let my brain relax. On my off days, I have my son lie next to me and we watch movies. It is definitely quality time. 
The time you are spending at the doctor’s and adjusting to meds now will hopefully bring you many good days with your kids. As long as they know you love them, which I am sure they do, they will be fine. I hope the nori works out for you, Kylie, and that you have many good days ahead!
Peace,
Jen
Hi Jen,
I went up to 15 for 2 nights and then went back to 10 due to dizziness and insomnia.
Your at 80% now. What where you before going up to 15. Did the extra 5mg really make a difference in dizziness?
Thanks,
Kristina
Thank you Jen,
I am thrilled that Nori is helping you. That is such great news. I love nothing better than hearing some success stories. Was convinced I would never feel “normal” again. Thanks for your advise. Very true. I know I need to relax when I’m having an “off” day and not feel guilty about taking it slow. DVD’s with the kids sounds great. Being a very active person accepting this condition has been difficult for me. Going slow just isn’t in me and no longer participating in my usual activities or being able to keep up with the kids is so depressing.
Can’t imagine going through this as a single mother. I think you are the “trooper”.
Thanks for your kind words. Really appreciate it.
Kylie xx
Hi All,
Kristina-the 10mg seemed to be working, but I had a crash about one month ago. I called my doctor in a complete panic and he explained I was actually having a migraine- no headache, but I felt a total lack of focus and disconnected, along with my typical disequilibrium. He advised I go to 15 mg., and I had to get capsules made at a compounding pharmacy. Dizziness did increase for 7-10 days, as did dry mouth and heartburn. All seemed to subside within 2 weeks. Nortriptyline has never caused insomnia for me, I sleep like a baby. You may want to give 15 another chance sometime.
Kylie-thanks for your kind words. I totally understand the frustration with going from a totally active person to someone dealing with crippling MAV. I was on a camping trip with 10 of my school students when my initial attack hit. While I haven’t returned to traveling as much as I used to, I am back to most activities. I used to run 5+ times a week, stopped for a while, but I am back. I just have run on a treadmill most days because the running motion outside can increase symptoms. I am going on a road trip with my son in a few weeks, and taking another group of kids camping next month. Hoping all goes well. So thankful for this board! It has proven to be a wonderful source of support and information. Please keep me informed of how you progress on the nortriptyline. By the way, in addition to the med, I have been taking magnesium, vitamin D, and vitamin B complex. Could be a combo of the med, vitamins, and exercise that has been helping. I think my attitude change from "why me? "to “Ok, what I can do to get better?” has also helped me tremendously. Wishing you the best!
Peace,
Jen
Wow Jen…Can’t believe you’re running!! Can’t wait to run again or play a game of netball. You’ve given me something to work towards. How exciting! I will never take good health for granted again and the freedom of being able to do as you please. Enjoy the road trip and have a wonderful camping trip.
Take care.
Kylie xxx
Hi Jen.
I know you went from 10mg to 15mg due to having a crash. But Im wondering if you saw a change in dizziness.
Before you crashed, 10mg seemed to be working, you had a relapse and went to 15mg. Now that the SE from
the change are gone, do you see a difference in dizziness between 10mg and 15mg?
Thanks
K
Kristina,
I do see a difference in my dizziness. It’s not completely gone, but it has changed. I used to get a feeling almost like a brain shock, which made me feel as if I would pass out, followed by rocking disequilibrium and a weird heavy foot feeling. Those are totally gone. I do, however, still get occasional feelings on disequilibrium or a feeling like I am moving forward right after I get out of my truck after driving and when I have my head or eyes in a constant downward or upward position. things like ironing my clothes or standing over my stove while cooking a meal can kick in symptoms. the other thing I have noticed more is that I have more symptoms when the weather changes. It was @70 degrees here during the week, yesterday a cold front moved in and we had rain and snow. I felt a little lightheaded throughout the day, but was able to get everything done that I had planned. I don’t think this is from the med, but that I just didn’t notice it a much when my symptoms were more pronounced.
Are you still sticking with hw 10 mg?
Please let me know how you are doing.
Peace,
Jen
Nori sent me demented when I first started on it and crucified me for the first 6 weeks but then ever so slowly, things started to turn… But I do also have a friend with MAV who tried and tried for ages with this drug and it just sent her nuts. She did persever for a good 6 - 8 weeks before binning it though so as to really know for sure.
I was doing about 50-70% better after 3 weeks on 10mg of Nort. Then came along my cycle, and I had extra dizziness about 3 days before and then headache and dizzy for about a week total. Ha was only 3 days. That is when I bumped up the Nort to 15mg and couldn’t sleep and then got extra dizzy. Not real bad, but enough to annoy me along with my cycle. So I went back to 10 after ony 2 days and slept great again, until I got Mirena IUD now Im not sure whats going on with my sleep. I have always feel asleep with in min’s of laying down, now its like 2 hrs…later
I would say Im back to about 50-60% titrating was the wrong time. I will try again in a week or so… maybe longer I have to figure out if I will have SE from the Mirena first.
Well that is good that going from 10-15 helped even more with your dizziness!
Muppo you are on Nort to I believe, and its doing well for you. 
Kristina
Yes. It only got me to about 60% ish and I was still having daily symptoms but adding the Gabapentin is what really kicked my sh*t to the curb so now I’m like 85 - 90% most days with the odd bad fallout day here and there which I never know when is coming and it hacks me off because I cant predict a patter! :?
You had the IUD put in? My sister-in-law had that done and it sent her mental. She said to me NEVER DO IT!!!
I had the IUD done 5 days ago. Im not out of the woods yet. But so far, the first 5 days have been way better than most.
I have been having rapid hb and shortness of breath, but I think its anxiety related, as the IUD generally doesn’t have those SE.
I have done well with all of my birth control choices in the past, I even managed to take 4 shots of Depo 20yrs ago, and I tolerated it just fine.
So hoping this is a breeze as well.
Im going to try and go up on the NORT tonight again. I dont want to stop because 10mg has me about 50-60% better on most days, with no SE, unless
the rapid heart and shortness of breath is coming from that. I think its anxiety though. Because everytime I go to the school to get my son, its so noisy with all the kids running by, I start feeling it then to. so… ??
Muppo, I love your pic by the way.
K
— Begin quote from “Kristina”
Muppo, I love your pic by the way.
— End quote
THANK YOU!! Now I’m blushing :oops: You’re very sweet.
Good luck with the IUD, I’m sure you’ll rock it!
Don’t know what happened to my post, but I’ll post it again.
I am on 125mg of Nortriptalyne now. I just wanted to say that every time i bump my dosage up I spend serveral days feeling out of it and MORE dizzy than usual. But that always passes after a few days. So some extra dizziness at first is normal.