My ENT just put me on Nortriptyline after the fistula repair surgery in my inner right ear didn't work (it worked 2 years ago however). Has anyone tried this drug for migraine associated vertigo (which I may or may not have)? Does it really take a month to work??? Also, for anyone else with MAV, do you get dizzy from sounds (loud and as soft as people talking to you)? I've just been dizzy for a month straight and I'm just a little in the dark here. I just need some clarity.
Re: Nortriptyline for Migraine Associated Vertigo?
Nortriptyline is a favorite by most practitioners. Some patients experience improvement of symptoms after a few days, but its not unnusual to take a few weeks for a positive change. Patience is key.
The Following User Says Thank You to bindar For This Useful Post: screaminseahawk (12-22-2011)
Re: Nortriptyline for Migraine Associated Vertigo?
With your first successful PLF surgery, how long did it take you to feel normal again? I have heard that it takes about 6-8 weeks. I just had PLF surgery, could you please share with me as much information on that as possible??
Re: Nortriptyline for Migraine Associated Vertigo?
Quote:
Originally Posted by bindar
With your first successful PLF surgery, how long did it take you to feel normal again? I have heard that it takes about 6-8 weeks. I just had PLF surgery, could you please share with me as much information on that as possible??
Thanks for the info on the Nortriptyline. I've taught myself to drive again. I have to sit in my car for about 15 min with ear plugs in both ears to get rid of the dizziness before I start driving (leaving the ear plugs in on the whole trip). I can't have anyone talk to me or listen to music, which is really annoying. But at least I'm not stuck at home and can get some hours in at work.
The first surgery worked pretty quickly but I wasn't back to normal for about 4 weeks. I did however go back to work only a week after surgery which was way to soon. So those first few weeks at work were not fun. I was running out of sick time since it took 2 months to even figure out what was wrong since it is so rare. Apparently I was one of 4 people in North Carolina to have a PLF in 2009. And now I feel like I have it in both ears. Lucky me .
How did you get your PLF? My first one was apparently from several activities with dramatic pressure changes over a 2 week vacation period (whitewater kayaking, non-stop cross country flights, rock climbing, and the big slides at Wet N' Wild). This last one was from getting my ears cleaned out at the doctor's office though. I should have told them to be more careful.
Are you dizzy whenever you hear sounds? If so, what kind of dizzy are you -- spinning vertigo or rocking back and forth like you are on a boat?
Re: Nortriptyline for Migraine Associated Vertigo?
The symptoms you describe are called Tulios Phenomenon. Ive never heard of an MAV patient with chronic Tullios like you describe, but some patients do say that sound and/or light can cause their symptoms to get worse during an acute attack. Have you been evaluated for Superior Canal Dehiscence? I really dont think your Tullios is caused by MAV.... But Im not a doctor.
For the first 6 days after surgery, I felt all the same symptoms as before surgery, but they were about 10 times worse. Then all of a sudden, I started feeling pretty good a few days ago. I no longer fall to the left during the Romberg test, and I feel like my balance is a lot better. But I still get dizzy when I move around a lot, and busy environments (stores) can make me feel a little imbalanced. But Ive heard it takes about 6-8 weeks to heal from a PLF, so I am actually progressing really well since its only been 10 days since surgery. Does my healing progression sound similar to yours after your first successful surgery?
My ENT had my try a few migraine meds, but my Otologist said to stop taking them because she was confident I didnt have MAV.
I am not dizzy from sounds, but I know of a woman who had PLF and she had a bad case of Tullios. She couldnt talk, or listen to anyone without getting bad dizziness and nausea (she never experienced vertigo).
Re: Nortriptyline for Migraine Associated Vertigo?
Man that Superior Canal Dehiscence sounds exactly what I'm going through. Then again I don't know how I would have eroded bone in my inner ear, but who knows. They did a CT before my surgery and that was clear, but they've never seen anything in a CT for me anyways. I'll check with my ENT during my post op in a couple of weeks. Thanks for the idea!
You sound like you are right on track with how I remember my first surgery going. And like you said earlier, patience is the key.
Now this woman you knew with PLF and a bad case of Tullios -- did she ever get cured? Or did they find out what was wrong? I appreciate all of this help. I hope you are having a nice holiday.
Re: Nortriptyline for Migraine Associated Vertigo?
I felt pretty good this morning, but I havent felt as good tonight. My balance is not as good, and I feel like Im rocking on a boat. I used to feel this rocking sensation occasionally before surgery, and quite a bit for the few days after surgery. Did your symptoms fluctuate during healing? How long did it take till you felt 100%?
Its a special CT scan specifically for SCDS. A normal CT scan will not show enough detail of the temporal bones. There are specific terms and measurements used to define this type of CT scan, Im sure you can find information about it somewhere. They did that special CT scan on me and it was normal.
The woman with the PLF had a PLF in the oval window of her left ear, this was visualized during surgery. Her symptoms resolved 100% after surgery, the Tullios went away immediately. Thanks for the kind words, I hope you have a great holiday too
Re: Nortriptyline for Migraine Associated Vertigo?
I hope that you had a nice Christmas. Sorry, I haven't been near a computer for the last couple of days.
Now I know all about that rocking boat feeling (I have it right now). But as I remember, it took about a month before I felt that the surgery actually worked. My issue is that I went back to work way too soon (after only 1 week), possibly causing me to heal slower. I was already out of work for 2 months up to that point, so I tried to go back to work as soon as possible. I don't remember if the symptoms fluctuated at home, but I was still affected by loud noises at work for that first month back. Then things slowly got better... I would give anything to feel that relief again.
Now I did have a special CT that was normal but I'm not sure what the doc was looking for. I will bring up the Superior Canal Dehiscence idea at my post op next week though.
I'm a week and a half into using this nortriptyline and I don't feel any better. I guess it's time to cross my fingers and my toes that something changes soon.
Re: Nortriptyline for Migraine Associated Vertigo?
I hope you had a good Christmas too!! I know it can be difficult when you dont feel good, but hopefully we will both get better soon!
Thanks for the info about the surgery. I have also felt like the surgery didnt work, but its been only 2 weeks. I thought the results would be more instant, but the majority of people Ive met say it takes a long time to feel better.
I also wonder about the possibility of me having MAV even though my Otologist insisted that I dont have MAV.
I am not surprised that you dont feel better yet, ask your doctor about titrating to a higher dose. I personally dont think you have MAV, but it needs to be ruled out, and there is no other way.
Re: Nortriptyline for Migraine Associated Vertigo?
It's always good to know that we're not alone when it comes to having something that is so rare. I'm at work and people see me walking around with a smile on my face but they have no idea how dizzy I really am. I'm just trying to stay positive and do research in my spare time. I called the nurse today and she's going to ask the doc if I can double my dosage. I just don't like wasting time and waiting a month to see something not work is pretty ridiculous to me. But I guess that's the way things work when it comes to dizziness disorders. I'll keep you updated if anything changes. Thanks for all of your help so far! I really really appreciate it.
Please let me know if there are any other questions you have. I really hope it clears up for you soon.
Re: Nortriptyline for Migraine Associated Vertigo?
When you had a PLF before, did you get dizzy during the fistula test or valsalva maneuver?
Do either of these make you dizzy now? Both of them made me dizzy before surgery, and these 2 symptoms are both highly suggestive of a PLF or SCDS. This is the reason my Otologist did surgery. Even though I have been feeling pretty bad, I just constantly remind myself of this.
Re: Nortriptyline for Migraine Associated Vertigo?
I've only done a fistula test when I had a fistula. Both times I was dizzy during the fistula. Then again, it's hard to find a time when I'm not dizzy, so it's not the best test. But I guess my eyes were moving back and forth when they blew the air in my right ear, so they said I was positive for the fistula. I don't think I've had a valsalva maneuver before.
I actually remind myself of the same thing. However 2 years ago, I wasn't positive for the fistula but he had no other ideas and the surgery fixed the problem. This time I was positive for the test and the surgery didn't fix the problem -- go figure! My left ear wasn't positive for the test, but I think I have a fistula in that ear too. Since that is apparently pretty rare, he's going to try everything else first. I would have rather had surgery in this ear before Dec. 31st since I've already hit my out of pocket max for the year, but I guess that's out of the question now. Ugh.
Re: Nortriptyline for Migraine Associated Vertigo?
2 years ago was worse than it was this go around... I had to use the walls to hold me up and walk. I remember we were house hunting at the time and my wife did most of the hunting while I sat at the bottom of the stairs, holding her purse, haha. But it was the same boat-like dizziness that I have now, just a little crazier. I actually figured out what was wrong with me after 2 months of online research and once I realized that I got so dizzy after each meal. Just like now, the sounds from just chewing my food make me super dizzy.
Two years ago, I was so dizzy that I became nauseous. Now I think I'm just used to the feeling, so it doesn't bother me as bad. Then I was stuck in bed for weeks, but now I can work to some degree and I can drive (with earplugs) but it still sucks and I'm not myself.
I never remember having headaches or any other weird side effects. I just couldn't keep my balance and I had no idea what in the world was going on.
I'm a young adult cancer survivor and people kept trying to blame it on that. I knew it had nothing to do with that and I just did everything I could while I was at home to figure it out. I became my own "House, M.D."
Re: Nortriptyline for Migraine Associated Vertigo?
Im sorry to hear that you have been suffering! I really do know what its like... Good for you that you are a young cancer survivor!
I saw my Neurotologist today and she took out the packing. It made me really dizzy part of the time when she was cleaning, but I actually feel a little less dizzy now. She said that I should be able to tell if the surgery worked within the next 2 weeks (that would be 4 weeks after surgery).
I have been noticing a new symptom, I feel like I am rocking a little bit, and spinning very slowly. If I stand with my eyes closed, my body actually sways slightly in counterclockwise circles. This could be from endolymphatic hydrops. I hear that its quite common to get that.
Re: Nortriptyline for Migraine Associated Vertigo?
Ahh, the packing, I forget that makes you feel better afterwards. I get mine out on Jan. 3rd. I doubt it will make me feel totally better but it would be great if it actually helps.
I got the approval from my ENT yesterday to up the dosage of the nortiptyline to 20 mg (from 10 mg). Only time will tell to see if that works...
Re: Nortriptyline for Migraine Associated Vertigo?
So I'm glad that I finally had my post op and got my ear cleaned out. I actually felt okay for about half a day, thinking that I might actually be okay? Then I went to work and had to make some copies and then BAM I'm dizzy for the next 6 hours -- oh well. The doc put me on Topomax in addition to the Nortiptyline that I'm already on. I'm supposed to slowly increase the dosage over the next 3 weeks in hopes that it cures me. If not, there's talk of sending me to Johns Hopkins for further testing. That's a long ways away, but I hear they are the best. It just better be covered by my insurance.
I checked on the SCDS thing you mentioned and he said that's actually what he did the specialized CT for a while ago. Even though I was negative for the test then, I was thinking that when you do a test, sometimes in math or science you should do it a few times and take the average... So maybe we should do it again down the road if we are out of ideas? He said if it is ever positive and they do that surgery that it will be like doing brain surgery -- very dangerous and could cause damage. So they will only do it if they are certain that that's what it is.
How did we get this??? Nobody can tell me that? I want to know how to prevent it in the future, but nobody can tell me. I've now had it twice in 2 years and if it is so rare, what gives?
Nortriptyline for Migraine Associated Vertigo? 
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