Hi Amy, I think you are probably not on this forum anymore, but if you do check your messages, I’d love to find out whether you were able to come of nort. after being on it at the dose you mentioned of 30mg. I have a friend who used 30mg to get control of her MAV, and she’s trying to get off of it - which sounds like the goal after you control your symptoms at whatever dose (to come off it slowly) but we don’t know whether that will work. I am also asking for myself because I am very curious (and hopeful!) that if I went back on nort. slowly and used it to control the MAV, I might be able to get off of it if it changed my brain enough out of the migraine state. Hope to hear from you! Liv
Did the nort give you fast heart rate or palpitations? Any bad side effects?
No palpitations thankfully (no irregularities) but a bit faster heart beat but it seems to be something does does go away for people once they are on the drug a little while and adjust…that’s what fussy fussy said about her experience with it. It’s not one of the most annoying side effects I’ve experienced overall w/ drugs…so I’d take that one over others.
Just to clarify, I would especially be out of breath when going up the stairs at home and my heart rate would hover around 90’s for a while while sitting down as I went up the Nort. But over time it settled. However, this seems to happen to me when I have a cold and my MAV is worse, etc as well, so I never worried about it when it happened with Nort. dose increases. Just wanted to clarify that in my case it was nothing alarming.
Having said that, pls do judge based on how you feel while on it, if you try it again. Also, I am telling you, if you worry that your heart rate will go up, it will. So try to be calm.
Hi…I took nortripyline and it didn’t work for me Was only takin 30 mg…now I am taking depaloe and 100mg of gabapentin…These meds are not good for you…although it helped me I am still getting dizzy…started depakoe late Sept and Gabapentin mid JUly 2015…I tapered down to 100 now…Will MAV ever go away??? You know Janet Jackson had this and they say shes fine now
I’m almost 100% recovered with 100mg gaba 3x a day, and 400mg magnesium glycinate, 400mg B2, and 400mg CoQ10 - I can’t drink coffee though. That is my main trigger along with MSG for head pressure. I drink wine without a problem again and can eat almost any foods.
Janet Jackson indeed is supposed to have had vestibular migraine - I really wish she’d publicized that more and about her way of recovering too for other people who have had experienced it. It is probably the most challenging thing I can imagine, but I feel like we’re somehow special for having to get stronger to get through it and learning about the importance of life priorities and our health because of it.
At least that’s what I tell myself!
Best wishes for your recovery. I’d recommend the supplements (I take the KAL brand of magnesium) the most of all. I can almost not take the gaba if I don’t want to and still be OK. I kind of take the gaba as an insurance policy!
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I think you have to give things long enough to see if they work for you. I’m on nortriptyline, have been since July last year, now at 35 mg. I have to increase 10 mg every 4-6 weeks until I stabilise or reach 75-80 mg. My doc won’t try anything else until this route has been exhausted. I think you need to give options the time they need to take effect. There don’t seem to be any quick fixes. My doctor said it has taken a long time for our brains to get into this mess and it will take a long time to calm it all down. It’s horrible but the mental battle is half the struggle for me. I try to just accept this is the way things are for now (easier said than done)but I know getting stressed out doesn’t help me. I know I’ve improved significantly if I cast my mind back a year, and have to keep telling myself I’ll get all the way there! Try to be positive.
I agree with what Scottl said 100%. You will improve on something - you just have to find the medicine you can tolerate and that helps you. I’ve found I can only tolerate low doses of drugs since I seem to metabolize them efficiently and therefore suffer more side effects but also benefit from a lower dose than most people… The supplements I mentioned also help. I try to avoid gluten and inflammatory foods and caffeine. A glass of wine or beer on gabapentin at the low dose I’m on doesn’t seem that problematic. Stay strong. xx
I have a question for you. You said the your doctor said it took a long time for our brains to get into this mess, so it’ll take a while to heal from it. I haven’t heard chronic migraine alone being characterized as a " big mess". Does your doctor refer to it as such because the dizziness/vertigo component shows that we are in a bigger mess? In other words does the fact that we developed dizziness with this mean that our brains are really messed up, more than they would have been if we just had the daily headache type migraines instead?
Yes I think so. He says my brain (or ours) is in a highly irritated state, so it has taken a long time to get so irritated and will take a long time to calm down. I’m pretty sure he’s simplifying things considerably! So I think our brains are in a constant irritated state and people who have classic migraines from time to time, have flare ups. That’s how I took it anyway, someone else may know better.
My doctor constantly refers to my irritated brain! So I’m imagining the blood vessels are inflamed? And does this cause the misfiring of electrical signals? If someone understands exactly what is going on it would be good to know!
Thank you, Scottl.
What you are saying makes sense. I’ve heard others say that’s what their Drs said, too. Dr. S. in England apparently says developing a vestibular problem is the body’s/brain’s way of saying slow down - it can’t take it anymore, type of stuff.
A migraine brain is referred to as an “angry brain” by some and surely very irritated. I think your explanation was spot on. I don’t know the scientific details either.
Thanks so much and I hope you continue to improve.
Yeah I’d definitely say this was my body’s way of reacting to a ridiculous amount of stress and strain. It’s forced me to take stock and change a lot of things. I’d had acute episodes in the past that came and went (I suppose like a ‘normal’ migraine) but I think this chronic thing was my kind of ‘burn out’. Some people have heart attacks, some people have break downs but this was my body’s reaction.
I just wish when I had those acute episodes in the past, which I was wrongly told were labyrinthitis, I wish a doctor had known enough to say, actually it could be a migraine variant. I could have reevaluated my life and maybe, just maybe prevented getting into this state. But hey ho, it’s happened and we’ve just got to get on with it. This site’s great, being able to connect with people in the same boat. I feel it’s hard for other people to understand.
I’m doing a lot better with the supplements (mag glycinate, CoQ10, B2 all at 400mg daily) and am trying to see if I can stay off gabapentin because it makes me very tired even at a low dose. I started taking claritin today as well so hopefully that does something good! Hope you all are having a good day,
Best wishes without the Gaba. I have been taking Zyrtec for almost two weeks now, too. It seems to help with the fatigue.
You make a very good point that some people have heart attacks, some nervous breakdowns, I now see it that I had a brain breakdown!
I went through a harder time than I could imagine going through right before this hit me, both physically and stress-wise. It was the perfect storm, really.
Same here. I was both chronically D vitamin deficient (hence my immune system was low) and probably B12 deficient as a vegan. I eat meat a lot now (not red meat as much but chicken) as well as pay attention to my health in other ways. I’m grateful for that but MAV is tough. I think we will all find a way to get well and be better off in the end. I am staying on my low dose of gaba because I need it for insurance even though the supplements help more than anything so far… the gaba just calms me down though it does make me tired. I felt even more tired on claritin today though… everything has some side effect. I am OK with 1 cup of coffee on gaba so I guess I can survive! Hope you guys feel better soon. I feel much better when I’m not eating gluten & dairy btw. Dairy is the worst in my experience for promoting inflammation. xx
I just want to say thats exactly how i feel–i was working in a very stressful job and had a lot of pressure and if i knew something was going to happen, i would have quit the job to preserve my health…i almost had a heart attach, rather my body did the same as yours and im in this new mode and trying to adjust but im on medical leave and unsure ill ever return to that job as it was ridiculous.
I know it’s a bit later in replying to this but also wanted to add that I think that’s a good description of having an almost “brain breakdown.” College was very stressful for me - I am now almost two years post grad, but I think family issues and stress have truly added up over time. I started having symptoms about 3 months ago and went through a myriad of testing (Balance Evaluation, MRI, CT Scan, Hearing Test, Eye Exam) before they diagnosed me with vestibular migraines.
I have been on Nortriptyline for 2 weeks now (25 mg) and it feels as though it is making things worse, as well as making me pretty sleepy and zombie like throughout the day. I have vivid dreams too and dry mouth. The vestibular migraine symptoms alone have caused me to have some significant anxiety and panic attacks which are new to me as I’ve been a pretty laid back person my whole life. Anyone have any advice on how long I should try it before giving it up and possibly trying ami or an SSRI?
It is comforting to know I am not alone and that there is hope for everyone out there who is struggling with this disorder. This forum has really been a positive light for me during this time.
I’ve been taking Nori as well. About 6-7 weeks in now. The first two weeks were difficult, increased dizziness and some terrible dry mouth. By the end of the first month those had all but gone away. Only side effect now is sometimes it’ll keep me awake at night, but that’s not so bad
Most doctors recommend at least 3 months on any given drug before trying a new one. If you hop on and off drugs you may never find one that works and run the risk of constant side effects from tapering off and on new drugs
I also took an SSRI for about 2 years when this all first started (Citalopram) it was great for dealing with the anxiety and depression about being dizzy all the time, but did absolutely nothing to actually help the dizziness
Thanks for sharing your experience with Nori as well as Citalopram - that’s really good to know. I messaged my doctor about the increased symptoms, but I’m definitely down to stick with this drug for at least another couple of months to give it a fair trial. Do you mind if I ask how many mg you are taking?
I’m glad to hear your dizziness has subsided. I’d take some insomnia over that any day. Do you find that you’re somewhat back to normal? I feel like I don’t remember what that even feels like. Thanks again for sharing.