For the past year I’ve been suffering from a variety of symptoms that spontaneously occurred:
Constant dizziness and rocking sensation while moving. General imbalance
Neck pain
Head pressure radiating from lower base of skull
I’ve run through the gamut of doctors who ultimately found nothing. Finally went to see a good ENT Doctor who referred me to a neurotologist that specializes in balance disorders who diagnosed me with MAV. We started conservatively with neck therapy and migraine diet but did not see any meaningful improvement so he decided to start me on nortriptyline medication.
Week 1 - 5mg dosage
Week 2 - 10mg dosage
Week 1 went mostly ok. My mood was really good and I was starting to feel better with all the dizziness. As it progressed and I upped the dosage it’s been a mixed bag. My anxiety is way up now, I get random cuts on my tongue all the time, and my dizziness and imbalance is really bad when I try to workout. It’s odd because things like driving have gotten much better for me. Even sitting or standing in the same position which used to make me really dizzy is mostly gone. Movement though, is too much to handle and I end up getting really tired and exhausted and overall sick to my stomach.
Are these normal side effects of the medication? Will they pass in time? Should I keep moving up on the dosage next week (my doc says I should), or hang here at 10mg until things stabilize?
But well done for taking the plunge on meds, they can really help.
I’m on Amitriptyline, a cousin of Nori. I actually found the opposite, I got less dizzy with increasing dose until I got to 30mg, and the dizziness got worse, so I’ve backed off and take 20mg. I used to get migraine attacks, but those have all but gone. I’m just left with varying levels of imbalance and tinnitus.
Your doses are very low at the moment, stick with it and I would head up to at least 20mg and see how you go. But discuss with your neuro.
Anxiety comes with the territory. The condition can make you very anxious. My tinnitus alone can put me on edge, then add the imbalance and at times it can be a real downer.
However, my existence now is so much better than before meds. Some times my balance is almost normal and I’m free of those awful attacks and the visual vertigo that can come with the condition.
I’ve been on nortriptyline for a year now and doing really well on it. I had to increase at a slower rate, I went up 10 mgs every 4-6 weeks. Each time it made me feel so much worse for a couple of weeks, it wiped me out and made the head oressure/dizziness/visuals worse but this all eased after a couple of weeks. I’m on 35 mg now and I’m ticking over at about 95% for the most part. Some days I’m completely fine. I’m also following the 6 Cs diet.
I’m currently going to 40 mg to try to get on top of the residual symptoms. I’m doing this by alternating 35 and 40 each night and so I’m coping with the increase a lot better.
Stick with it and give it time, it really can help.
I feel a bit like I’m on a roller coaster here with this drug.
After a horrible couple of days I’m feeling much better now. In fact I had one of my best days in recent memory yesterday. Overall I think the drug is working, my neck pain is going down, my headaches are going down, and slowly that dizziness and rockiness is starting to go away. I will probably need to titrate up from 10 to 20mg though.
One thing I am uneasy about is my elevated heart rate. I can feel my heart beating faste than normal and it scares me. Is this a normal side effect that goes away over one or should I call my doc ASAP?
Yeah that’s one of the side effects. My heart rate increased quite a bit to start with too. It settled down after a while, although it’s not back to my pre-nort resting rate. I don’t really notice it anymore. Good luck with it, I hope it keeps getting better for you.
I spoke to my doctor and he said the same thing. He said it’s a common side effect that usually disappears after a few weeks/months. I’m gonna keep marching on until my next appointment with him before thinking about getting off.
One thing I’ve noticed the nortirptyline is not fully resolving is my rockiness/swaying that is more or less 24/7. It’s varies in intensity throughout the day, I typically start out fine and then get progressively worse throughout the work day and then seemingly resolve again towards the end of the day.
This is something that has gotten worse since this all started and I’m starting to wonder if it’s all anxiety related. I wonder if anyone has tried supplementing nortriptyline with something to knock down the anxiety?
You may get more relief with higher doses. 20mg of Ami makes me feel better than 10mg (but not 30mg so far in my experience). You may get similar experience with Nori.
In addition I saw a psychotherapist for a while to help me with my health anxiety. It was very helpful. Try to get a referral.
I have had great success with Nortriptyline. My doctor starts me at 25 mg and it takes about 5 days for it to fully kick in. After three weeks, I move to 50 mgs for three weeks. Then I move back to 25 mgs for about two weeks and then 10 mgs for about a week. While on Nortriptyline, I try to fully follow the “Heal Your Headache” Diet. Especially, no caffeine, chocolate, citrus, alcohol, MSG or other chemicals. And I avoid avocado, bananas and other tyramine foods. Even brewed decaf is a trigger for me. I drink a naturally processed instant decaf and plain Rooibus tea. Later, you can add a few things back. Small amounts that you you can rotate. Don’t forget, in the summer months heat is a big trigger so it is important to add more water and avoid prolonged exposure and over exercising. Just taking the medication and not avoiding triggers reduces and delays success. I am off the Nortriptyline now (been off for 7.5 months). It is summer here and very hot. I take Allegra every four days or so to reduce ear pressure/fullness. It really helps, as does Nasonex. Reducing ear pressure reduces balance issues and sinus problems. I also use Nasonex on occasion to do the same thing. The heat of summer always increases these problems and makes me more sensitive to other triggers like light and motion sensitivity. Good luck and I think you will feel better at 25 or 50 mgs. It does raise my blood pressure. By the way, brewed decaf can really be a trigger for me as there are varying amounts of caffeine, especially at restaurants. I only drink a naturally processed instant decaf called Mount Hagen which I get on Amazon or at Whole Foods. (Vertigotalesandtastes.blogspot.com).
spinninggirl, you mean to say you titrated up to 50mg, then back and stopped taking it completely? So you only took it for a few weeks but it had longer lasting effects?
I take it for about 12 weeks (3 at 25mg, 3 at 50 mg, 3 at 25 and then 2-3 at 10mg). I am strictly on the diet for those weeks. It always has lasting effects for me. I have now been off this course for 7.5 months. The summers are hard for me as heat is now a known trigger. I have upped my water consumption, only walk after 4:30 pm, increase my salt and stay away from brewed decaf. I only drink an instant one naturally decaffeinated by Mount Hagen (Amazon or Whole Foods). I have added small amounts of restricted foods to my diet without any major issues. 8 chocolate chips, small piece of banana or avocado, 2 tsp PB, 1/2 orange, etc, but I rotate these . I never have coffee, alcohol or MSG items. Although, a little “Natural Flavoring” in an otherwise okay product does not bother me (i.e, Breyers Natural Ice Cream). I mostly eat at home so eating out once a week is not an issue. I have to avoid Balsamic vinegar in restaurant dressings. If my ear fullness increases and I begin to get sinus pressure and balance issues and reduced hearing, I take Nasonex or Allegra which my oto-neurologist has okayed. They help and hopefully forestall any more significant problems. We’ll see!?!? You can take a look at my shopping list if you want. (vertigotalesandtastes.blogspot.com
Does anyone else find this drug to be too activating? I’m taking it at night around 7-8pm but find I can’t sleep well because my body is too wired. I am wondering if it would be better to take in the morning?
that’s really interesting, so the drug phase is used to kind of reset the brain? i’m fascinated that the drug doesn’t have to be taken longer term and such a short burst can have lasting effect!
As spinninggirl said, it takes time to have an effect. My doctor said it takes 4-6 weeks to do anything so persevere. I think I started to feel a big difference at 20mg. Once I’m fine, which I pretty much am now (at 35 mg going to 40mg), I’ll do 9-12 months on a maintenance dose then taper off the meds and introduce foods. I guess this time gives the brain a chance to calm down properly before trying to come off the drugs or reintroduce food. Stick with it to give it a decent chance.
Some updates. Just completed week 3. I bumped up to 20mg this week.
I started taking the medication in the AM as I found it too activating at night. The faster pulse and heart rate has subsided and is no longer a concern. Overall the migraines, neck pain, and dizziness have subsided quite a bit.
The last remaining symptom is that rocking on a boat feeing of constant imbalance. This has gone down a little bit, but is still quite annoying. I find that my levels of anxiety can be quite high sometimes, which I think contributes to a lot of this.
When I see my ENT doc again I will ask to see if there is anything else I can take in combination to drive the combat the last of the imbalance.
Nortriptyline was successful in eliminating my headaches and reducing neck pain, but was not doing much to help with constant dizziness and imbalance. My doctor, Dr. Cho from House Clinic in LA, wanted me to try Effexor as he has had success with this drug in many patients.
What a difference a drug makes. Effexor has completely shoved the imbalance into the background and completely lifted my mood. My anxiety levels are way down and I can finally live my life without constant fear. It took awhile for things to kick in as I was upping the dosage to a full 37.5mg capsule. I’m about 5-6 weeks in and so far so good. There is probably a remaining 5-10% imbalance but I’m gonna hang tight at this dosage and see if it resolves over next few months.
My advice to you all. Find a good doctor. Be patient. Try the medications, they really work.
Initially I was on both nortriptyline and Effexor. That made me really tired and out of sorts so I slowly weaned off the nortriptyline and am now 100% on Effexor.
