Question about partial effectiveness from Nortriptyline

Hi,

I have been taking 20mg of Nortriptyline for about 6 weeks now. I started out with 10mg and when I got to 20mg I found that it was helping relieve some of the intensity of the dizziness and off-balance sensations. I have tried mulitple times to go up to 30 mg and I am not having success. The symptoms get worse on 30mg, but 20mg is not enough. As I said, it helps relieve the intensity, but it’s about 70%. I am going to try 25mg to see if that helps at all. But I have three questions.

  1. Has anyone taken Nortriptyline in conjunction with another med and found 90-100% relief? My doctor is thinking of adding another drug.
  2. I used to have really bad anxiety due to this condition, but it doesn’t seem to be a problem anymore. I’ve noticed that a lot of people like to supplement with Klonopin. Does that help with the dizziness/equilibrium issues or moreso the anxiety. If just the anxiety, than it probably wouldn’t be a fit for me. But if the other, then maybe, I will try it. My doc is reluctant to prescribe it to me because of its suppressive affects on the vestibular system.
  3. Does the partial effectiveness on the Nort mean that I may have to start all over on another drug?

Thank you in advance for your input!

Best,
Kim

1 Like

HI Kim,
I think you should stick with the Nort for now and slowly try to titrate up. 25 is a good next step. It takes a while for the brain to make the changes. Klonapin works well for many of us, as do most of the benzos. Klonapin acts as an
anti-convulsant as well as an anxiolytic. I would think supressing the vestibular system would be a good thing for MAV, no?
Are you saying you are getting relief from your anxiety from the Nort? I was prescribed it at 10mg from my first neurologist, and unfortunately at that time, my psychiatrist told me it wouldn’t help anxiety, so I didn’t try it. I have tried the
Amitriptyline, which is basically the same before it metablises, and it didn’t do too much. Helped mood and sleep to a degree, but got more dizzy.
Please keep me posted on what your doc says, and also what you choose to do next.
What are your main complaints with MAV?
Thanks,
Kelley

Hi Kelley,

Thank you for your response. My anxiety is pretty much non-existent now, but it’s not the Nort that helped it. I would say from Jan-April of this year, the anxiety was so debilitating that I had to leave home for two months and try to get help in LA with my family. I have a husband and adorable 2-1/2 yr old boy that I couldn’t take care of anymore. I hadn’t yet been diagnosed with MAV, doctors agreed that I had problems with recurrent vertigo, and that I was suffering from constant dizziness and equilibrium issues, but they thought it was a compensation problem. Other doctors thought I was just anxious and needed psych meds. So they tried a mix of SSRIs, benzos, Anti-convulsants…but they thought they were treating anxiety and depression as opposed to MAV…I got ridiculed for being so sensitive to meds. Anything I tried made me feel worse. Then one arrogant doctor put me on Seroquel which knocked me over the head like a hammer…it turned me into a zombie and it was the first time I had relief from “early morning wakeup” anxiety. But, I hate being so doped up and it caused so many other problems. I ended up coming back home and taking charge of the situation as opposed to leaving my fate to doctors that seemed to know less than I. When it’s your life on the line, you are most apt and determined to find the problem and the cure. So, I guess what I am saying is that between the seroquel knocking me out and my change in attitude, the anxiety disappeared. I stopped the seroquel almost as soon as I got back, thank god.

I finally got into the “vertigo king” at UCSF (I live in San Francisco) and he immediately diagnosed me with MAV or as he also said, “Silent Migraine”. I tried the diet and had no luck in symptom alleviation. I then started the Nort at 10mg in the beginning of Sept and moved up to 20mg with no problem. I would say that I had slightly weird sleep patterns at first and a tad of jitteriness, but that passed within a day or so. I have tried, as I mentioned, going up to 30mg multiple times, but I think it’s too much for me. So, hopefully, 25 mg, which I started tonight, will be a happy medium.

My primary symptoms are off-balance, rocking sensation, lightheadedness, dizziness and a lack of mental clarity. I have endured other aspects of this condition which I will list below, but happily, they have not shown up in awhile:
Anxiety
BPPV (I say this because I had vertigo spins that were positional, from lying down, usually right-sided, lasted a few minutes at a time)
Loss of Memory
Cognitive impairment
Orthostatic BP issues
Base of skull/neck tingling/stiffness/pain
Bouncing eyes
Computer issues
Problems in large crowds, malls, stores (can still cause a problem, but not always)
Fatigue
Chills
Extreme depression (even the low dose of Nort I’m on has altered my mood greatly…prior to the onset of MAV, I was a really happy person)
Major GI problems
Extreme weight loss

My history from when I was younger…major problems with motion sickness and petit mal seizures.

I would say the majority of these issues have resolved, I did also start seeing someone who has helped with the food issue, she helps resolve food sensitivities and allergies…once again, before the MAV, I never had reactions to foods…maybe I would get a little headache after red wine and that was about it. Oh, and I sneezed from chocolate. But, at my worst, anything I would eat made me dizzy.

I am pleased that I have gotten relief from a lot of the aforementioned symptoms, but I am still dealing with the constant dizzy/off-balance sensation…yes, it is a lot less, but it still hampers my life too much. I feel unbelievably vulnerable, like it could get worse at any moment, and I would like to see it subside more.

As for the Klonapin, it helps with the dizziness and off-balance then? My doc likes to avoid Klonapin if he can…he said if he is able to help treat the MAV with other drugs like Nortriptyline, Verapimil, etc, he prefers to go that route…as you start to improve, your vestibular system gets stronger and your brain can compensate more quickly, I guess if you are suppressing the vest system it is harder for your brain to compensate and it takes longer to heal. I guess, in my case, esp since I don’t have anxiety anymore, he hopes to avoid it…but I wanted to see what people who had used it…

I will let you know how 25 mg goes, but I should say that I have had very minimal side effects from Nort which is great considering I could barely tolerate anything else. Although, I am only at 20mg…such a low dose, but it’s helping, so who cares???

What are you taking currently? And what are your primary symptoms.

Best,
Kim

HI Kim,
My main symptoms if the visual dizzies, where when I look at things, it seems “off” and patterns/stripes/motion makes it worse. For some reason that in turn makes me queasy and anxious. That was my first symtpom, and my last one
that won’t seem to resolve. I think all the other stuff got worse from the road of trying to figure out what was wrong with me. I suffered insomnia, weight loss, depression, aura, and also what you say about early morning wakening anxiety. I
still wake up trembling internally almost every morning. IT went away for a while, but started to come back recently. Evenmore so since I started back on the Remeron…only I don’t care as much…strange trade off!
My first doctor told me I was migraine equivalent, and I guess he must be pretty bright. Only I didn’t believe him because I never had headaches in my life. I did end up getting a daily headache that lasted about 4 months…it would come on around 3:00 every afternoon…behind the eyes…after about a week on amitriptyline, it went away and hasn’t been back since…that was a year ago.
Who is your doctor in San Fran?
That first doctor prescribed the Nort…I may end up trying that next…if it works, I wasted a lot of time!!
I’m on Cymbalta at 40mg (20 am/20pm) and a very small dose of
Remeron that I started about 5 days ago…2.5mg at bedtime. Klonapin as needed…it does help both dizzies and anxiety. I am sure that both my pdoc and internist think this is all stemming from anxiety alone…but I was never, ever an anxious
person. Always happy, outgoing, slept great…no problems with food…never a big drinker, but if I did, I would get drunk pretty fast…but it made me tired, so I was more into coffee or red bull…liked the “up” feeling better…
Keep us posted on the 25mg…hope it works!
Kelley

Hi Kelley,

What does migraine equivalent mean?

And I forgot about the headaches as a symptom…I don’t get them a lot, but when I do, they are brutal! Less so on the Nort…

How much Klonapin do you take? And does it make you sleepy or out of it?

I have two docs in SF…Dr. Lawrence Lustig (Director of Otology & Neurotology at UCSF)…he is the one that diagnosed the MAV…he also runs migraine research groups on a regular basis and says that he probably sees a couple of patients a day that suffer from the exact same constellation of symptoms. (He only see patients on Tues) The other one who runs the UCSF Migraine Clinic is Dr. Peter Goadsby.

Your previous state, outgoing, no anxiety, etc, sounds a lot like me prior to the onset of this.

Btw, feel a little weird today after taking 25mg last night…will take it for the next few days to see if my system levels off and tolerates it.

Chat soon,
Kim

Hi Kim
Hope this message finds you feeling better after your continuation on the 25mg Nort.
I take only 1/4 of my Klonapin tablets. I am prescribed .5mg pills. I believe it’s the equivalent of 5mg of Valium, or maybe even 2.5. The Klonapin has no side effects at all, I only feel it taking the edge off both anxiety and
dizziness. I have had many doctors tell me that small of a dose is fine to take daily. I limit myself as we are all our own advocates, and have to look out for ourselves. Education has taught me that benzos can be easily built into
tolerance and addiction…(that might not be the right word, but when you HAVE to have something, I call it addiction). I wish I could take it every day, twice a day, but there is the scary downside to them…so I tread carefully.

Migraine equivalent and all the other words, are just saying it’s Migraine. Only because I wasn’t educated as to what Migraine entailed, I didn’t trust that doctor. ANd he never took the time to teach me what it entails. A book referral
would have been nice…I kept saying “I don’t have headaches!”…and he would look at me like I was stupid and shake his head saying it didn’t matter…Now I get it…then, I didn’t! THis site has been awesome for teaching me all about
this crazy condition…I did end up getting headaches after all, and had 2 visual aura episodes, which made me feel like I was really going down the drain…but I realise now, it’s just part of the chemistry and I am like millions of others…
Strangely, I got those 2 during my worst anxiety/depression time, but never before in my life, and not since…which has been about one and half years.

Kelley

I’ve been doing pretty well, on
50 mG nortriptaline
30 mG nifedipine
200 mG carbamazepine
Diet and
Vigorous exercise.

On my own initiative (but with docs’ concurrence) I’m about to increase the nifedipine (pre-hypertension) AND
experiment with lowering the nortriptaline. Dr. Carey recommended dropping it by 10 mG/week till it’s where I have trouble if I lower it further.

Hi David,

You find that vigorous exercise helps and doesn’t make the dizziness worse? And what are the other two medications for? Besides the Nortriptyline?

Thanks,
Kim

Hey Kim
I already looked up those meds…one is a blood pressure med, andthe other is also called Tegretal…it’s for seizures, so it’s an anti-convulsant. It has some drug interactions and side effects that make it less likely to be
prescribed than say Topamax…I was curious as well. :slight_smile:
Kelley

Thanks Kelley!

I actually spoke with my neurologist from when I was a teenager. She treated me for my seizures with zarontin and depakane. She thinks that I might do well with an anti-convulsant as well…in addition to the Nort or instead of…since I have a history with that.

Btw, I have been taking 25mg of Nort for a few days now and my system is getting more used to it. I will see if I enjoy any improvement at this level or if I am at a plateau level, which, frankly would be very disappointing.

Kim

Hi Kelley,

Just thought I would give you an update!

I have been on the 25 mg of Nortriptyline for about a 10 days and each day I have been feeling a little better than the last. I did have a few setbacks…flew down to LA for Halloween weekend…flight was actually fine…but then went to visit my parents and they are repainting their entire house and using oil-based primer…as soon as I entered the house the fumes sent me right into a bout of dizziness. I could not tolerate it. The next day I was fine, though, and had minimal symptoms. I did just start my period, so unfortunately, the last few days have been a setback…it doesn’t matter how well I seem to be doing, my period always sets me back a lot…so the symptoms have been stronger in the last few days…dizziness, off-balance, neck pains, headaches…but I am hoping that once I’m through, it will go back to where it was. I was quite pleased with the improvement at 25mg.

I did notice you posted about this new Dr. Jensen. I am curious to hear more about the viral aspect especially because mine started off as a virus 16 months ago.

Thanks,
Kim

HI Kim
Lovely Avatar photo! Nice to put a face to the name…
glad things are going well on the Nort at 25. If you’re not satisfied with your results, You have a lot of room to move up. I think 50-100 is a usual migraine prophylaxis amount. SO glad to hear it’s workoing. ANother on the board, Lucille, is struggling at 10 right now with it, so hopefully she will read this and get inspired to stick it out.
Thanks for the update!
I will be posting what I learn from that doctor as I go foward with it…I just ordered his book on Brain Chemistry, so I should be prepared for our next visit!! :slight_smile:
Kelley
ps
what was your virus? Do you know?

Hi Kelley,

Thanks!

I hope I can move up further, I just found that I could never get to 30mg without feeling worse…we’ll see after a couple of weeks.

As for what started this, I thought it was a normal flu and then I found out that it was probably H1N1…got it from a friend who had it and told me a month later.

I did also test positive for lyme disease from Igenex and was put on heavy duty abx which totally screwed up my system and didn’t help at all. Don’t even get me started on that…I think there are a lot of docs out there making a lot of money off of telling people they have lyme…super controversial disease.

What were you sick with when this all set in?

And is that your dog? Rocky?

Kim

Hey,
No, that’s not really Rocky, but an amazing likeness. I have two Corgi’s, but Rocky was my first born. :slight_smile:

I agree, and there are some similarities with Bell’s Palsy, which was my virus, and Lyme…I was told to look into it…strangely, I did get kind of a strange looking bite on my foot about 2 weeks before this began, and after the bell’s…it could be so many things, or maybe nothing…
The doctor I just saw said I could have had H1N1 as well…I’m super curious a to how my labs come back. I am not sure what that will mean exactly, even if they say “THIS IS YOUR VIRUS AND IT CAUSES ALL THIS MESS”…after all, there’s no cure for a virus, and I’ll probably do the same thing I’m doing. I will say that his recommendation to do the Klonapin 2 times a day as my first line treatment, has been working very well. I have no dizziness right now…first time I"ve gotten complete relief for longer than 15 minutes in over 20 months…it must be calming down that crazy hyperactive brain of mine.
We’ll see how the trial continues…
kelley

How much Klonopin are you taking twice a day?

When do you get your test results back?
k

Kim, sorry for the delay, but yes, no probs from vigorous exercise. In fact, Tuesday I found I was able to wear a negative-pressure respirator (the kind of mask that you bring air through by inhaling) after years of having to rely on the type with a hood and a remote air pump; and I attribute this to swimming hard over the last year or so. The Carbamazapine/Tegretol was prescribed well over a decade ago for “seizures,” but didn’t seem to offer much benefit . . . until I was off caffeine, and so I now take 1/4 the dose that hadn’t worked, and no further dissociative episodes.

Hypertension, btw, appeared a few months before the first vertigo/nausea episode, after enjoying low-normal BP for ~58 years.

In other matters, I’ve had my nortriptaline lowered by 5 mG for over a week now with no ill effect, and will bring it down another 5 starting tomorrow. Slowly, slowly.

I’m not surprised that the heavy dose of VOCs was a big challenge to your system, and I’m glad that you got over the distress overnight.