Nortriptyline!

Hi been started on a new med Nori is the new one to try saw my ENT today who says I definitley have a migraine brain.

He said this is one of the top meds to treat this in his opinion and to trust the med and take it for 3 months upping the dose from 10 mg to 75 mg if needed.
He said I WILL get my life back it wont be cured but can be controlled with meds but amazingly I had a major flare up last week getting mini spins numbness and blinding headaches but these past three days Ive felt mostly normal. The thing is I know this wont last im still dizzy in bed and every morning but these past three days have felt minmal dizziness during the day if any!

Why do I get started on a new med when I feel better but then it puts me off taking it in case I feel worse. :roll:
Dont know why Im feeling a bit better again Ive eaten a KFC and chocolate these past few days :lol:
Oh well start the new med 2moro anyone have any good stories to share on it?

Hi Blondie,

I have been on this med since July. Started 10 mg, now on 30. Increased very slowly. Not 100 % but a lot lot better most of the time and no real side effects. Taking it at 6 pm I have had no drowsiness if I then get to bed by 11 pm.
I am also very strict with the diet all the time.
Am seeing my doc in 10 days and will ask him if to stay where I am or to up to 40 mg. I am scared that side effects will then start so am reluctant to increase unless he says so.
Have been in contact with other dizzies that have had good experiences on doses from 10 to 40 mg but I know some folk here have not had a good time.

Hope this helps. Let me know how you get on.

Penny

Thanks Penny
Im going to give this med a good shot of it and will keep everyone posted on how it goes xx

I just went from 10 to 20 mg of nori today. I started this drug 2/9. I have had mild lightheadedness as a side effect but not too bad. I like to think that it is helping. Usually horomones are a big trigger for me and this month things were OK. The diet made a big difference for me as well. Good luck to you, I hope it helps.

I’ve been taking this drug for a little over 7 weeks. I have noticed great improvement with it, I’m already up to 50 mg. Seems to work good, but I still notice some dizziness on the inside of eyes which is annoying. But I think I’m dealing with fatigue as a side effect. I am an active runner and everytime I run my arms and legs feel fatigued. I’m really hoping that this wears off. I’m signed up for a half-marathon on May 2nd and need to get ready for it!

Santana - can you please share what sxs improved for you. I started Nort last week. I am only on 10mg, and have terrible side effects. My doctor said this is expected (I am quite med sensitive), and I will be going up on the dose slowly. I’ve been pretty much bedridden for a long time now due to very severe MAV sxs. It is so encouraging to read a positive story as I am so down and hopeless right now. if you can share what has improved for you and on what dose I would greatly appreciate it. My doc said not to expect much improvement until 50 or 60 mg, so the fact that you see progress already is fantastic. I hope you get to run the race in May. all the best.

Yeah Lisa, I would be glad to tell you! My doctor was a little more aggressive than most stories I’ve heard from this board. He had me increase by 10 mg every week. I saw no change until I got to 40 mg, and it wasn’t a huge change but I have to say I felt a little better. Then once I got up to 50 mg the improvement was significant. I can honestly say that once I got up to 50mg I became about 85% normal, which feels good when you used to feel about 40-50%. It fluctuated for a while, but the good feeling in my head has been fairly constant! It took about 5-6 weeks to start seeing the significant improvement. For me, the magic number has been 50 mg. I haven’t tried 60, but I doubt I’ll feel any better than I do at 50. I would encourage you to maybe increase the dose as fast you can to see improvement.

You may have to tolerate some side effects in order to see some improvement. The only problem with my experience is a few side effects also. If I weren’t a runner, I wouldn’t mind that my arms and legs feel fatigued, but obviously it’s really important. So I’m hopeful that my limbs will feel like they used to. But just curious Lisa, have you or anyone else on this board known of nortriptyline to cause fatigue throughout the body (in my case, my legs)? Anyway, I also had drowsiness as a side effect, but that was fixed by taking the meds in the PM; I also take a B6 vitamin to give me a little more energy throughout the day, it seems to help. George from this board gave me that recommendation. Not sure if it’s a mental thing, but it seems to have worked! One thing I’ve noticed from this board is a difference in severity of MAV. I really feel for those who have it worse than I’ve had it. I can’t imagine how frustrating it must be. But Lisa, I believe you will see an end to this, or at least a significant improvement to where it won’t even bother you anymore. I will pray for that.

Seth

— Begin quote from “MAVLisa”

Santana - can you please share what sxs improved for you. I started Nort last week. I am only on 10mg, and have terrible side effects. My doctor said this is expected (I am quite med sensitive), and I will be going up on the dose slowly. I’ve been pretty much bedridden for a long time now due to very severe MAV sxs. It is so encouraging to read a positive story as I am so down and hopeless right now. if you can share what has improved for you and on what dose I would greatly appreciate it. My doc said not to expect much improvement until 50 or 60 mg, so the fact that you see progress already is fantastic. I hope you get to run the race in May. all the best.

— End quote

Lisa you will get better just keep thinking positive. Hope the little one is doing well and you still have help there with you to get you through the day.

Blondie and the others who have made improvements with Nortriptyline…can you tell me what annoying MAV symptoms have improved? I believe i took Amtriptyline a couple of years back and it did not help. Aren’t they cousins of one another?

Thanks,

Joe

Seth - thank you so much for your response. you give me great hope. My doctor did say I won’t experience changes until 50 or 60,. can you please tell me in what way you improved. what were you symptoms like before med versus now? thank you
Timeless - thanks. Eli is doing very well!

yes joe they are cousins but the nori has less s/e from what i can gather and seems to have better results. Dont ask me how they work as I havent got a clue lol!! lisa keep trying with it I know someone who didnt feel 100% on it till after 3 months and then noticed vast improvement so please dont give up yet.
Ive started on 10mg and can go up to 75 but dont think I will I have noticed a slight improvement in symptoms at the moment but it seems like Im going through some sort of remission at the moment where symptoms have really faded but this has happened before , dont know if its the meds or would of happened anyway but my mornings are definatley less dizzy.
I hate saying I feel better as I normally jinx myself lol But good luck guys xx

Yeah Lisa, my symptoms have always been really hard to describe. I’ve always described it as dizziness, which I think is accurate. When I was feeling my worst (which I felt for about 6 months) I was experiencing a really uncomfortable dizzy feeling. I had a heavy pressure feeling around my eyes and my eyes were also blurry. It was kind of a rotten feeling in my head; pretty much my head felt very unclear. Then at about week 4 of taking nortriptyline I noticed a slight change in how I felt. The heavy feeling around my eyes started to feel less and less, the uncomfortable heavy feeling was fading a bit. My eyes also started to feel a bit more clear. When I went running, I wouldn’t feel as dizzy, so I started to believe the medication was working. Of course I was paranoid that feeling better was in my head. Once I got up to 50 mg the heaviness around my eyes almost disappeared completely and I couldn’t believe how clear my head felt. It fluctuated for a few days where I would feel really good, then kind of go back to how I felt. I went back to 40 mg for a few days, but didn’t think I felt quite as good so I went back to 50 and felt good again. But as time has gone on, I’ve felt a constant 85-90% normal feeling. Which feels amazing! I’m still dealing with some of the fatigue from the drug, but it’s not so bad. I also have a little dizziness on the inside of my eyes, so if my talking to someone close to me I notice that I feel a little dizzy. So I guess my vision nearsighted wise is still a little dizzy. I’m really noticing that I’m enjoying the simple things of life again. Going through this really makes you appreciate feeling good; it is such a blessing from God. Hope that helps.

Hey Santana,

I just read your post and i can relate to what you said about inside your head feeling unclear and just an all around rotten feeling. Plus i also have this Motion feeling. My head has this heaveyness + a Strained inside feeling in the head. So the Nortriptyline has really helped you? I tried Amptriptyline a couple of years ago with no success. Aren’t they related medications?

Joe

Santana - thanks for that update. that is such wonderful news. Do you experience disequilibrium i.e., the ground appears to rock when you walk. that is my worst symptom by far, and I am so scared that this horrid symptom will never leave me. any experience with this before the meds? again, so glad about your success.

Joe, it’s been hard for me to describe exactly what my symptoms have been. From the sounds of it, it seems like everyone’s symptoms vary a little bit depending on how your brain reacts. It sounds like the heavyness I had around my eyes and heavyness you had in your head could be related, but just in different locations. I just have no clue as to what could have caused it. My best guess is either anxiety or dehydration. But the rotten feeling I would almost describe as waking up in the middle of the night from a deep sleep and just feeling like garbage. That’s how I always felt. Have you tried nortiptyline? The med you mentioned I believe is related. But I’ve heard a few doctors say they think nortripyline is the best for clearing up symptoms. So it may be worth a try.

Lisa, thankfully I have never experienced disequalibrium. Because I didn’t have anything like that I was able to continue with my daily life, but everything was twice as hard. I can totally see how you would have to stop with your daily routine dealing with something as difficult as that. But hang in there Lisa, I truly believe the disequilibrium and the MAV will go away for you, hopefully with this trial run of the nortriptyline. And thanks for being excited for me while you’re still dealing with all this discomfort. Hopefully you will experience the same joy and relief that I’ve experienced in recent weeks

Lisa I did have the dysequilibrium when I walked and as you say I think it’s the worst symptom. I think I was lucky in the fact that my brain seemed to compensate for this symptom. At first I only had it about 4 weeks.
I wasn’t taking any meds at the time but kept walking around and thankfully it went away. I really feel for you having that every day; it’s awful.
I think the nori will help you with this. Good luck. You’re in my thoughts. xx

Hi Joe,
What has got better for me on Norti is the feeling that I was walking on a boat all the time,I had no idea of where the ground was , how far away it was .The ground is now grounded and even when I do still get slight dizziness it is more gentle instability but slight and vague. Nausea has gotten better, and the weird feelings in my face and back of head have gone most of the time.Still get some tingling in my leg and hand but a lot lot less…although that is a side effect too of the norti so not sure if it is med tingling or MAV tingling !
My eye still sometimes feels like a wet hole or like rock is pushing down on it sometimes , but less than it did. I have also not experienced that huge overwhelming tiredness and need to cry since taking the meds. Overall I am 90 % better almost 90 % of the time. May have to up it to get to 100 % , but not sure if that is realistic even.
Really hope you get better.
There is no reason why anyone shouldn’t or couldn’t feel improvement even on lower doses…some lucky people do ,and can stay low.It is all individual , and all unknown and terrifying.

Penny

Penny, I have experienced the overwhelming tiredness in recent weeks. I’m always assumed it was a side effect from nort. Do you think the really tired feeling throughout my body is a side effect?

Sorry ! I have no idea.
I had that overwhelming tired feeling before taking meds , when I was at my worst , and a few times at the start on low dosage, but not since.
Last time I wrote to someone saying I had not had tingling since starting the meds, then a month later I got tingling, so I am now doomed to have the tiredness too I guess having written to you that I don’t !
I take my meds at 6pm and am out for the count by 11…when are you feeling the tiredness , all day ?
Penny

Yeah, I’m feeling fatigued all day. I’ve had it for a few weeks so I’ve assumed its the drug. I’m really hoping my body adapts to it so that I can have energy soon. But my head feels good, so that makes me smile.