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Considering MAV after Perilymph Fistula surgery

#1

Some of you know my story, but I have had chronic disequilibrium and motion intolerance after a short vertigo spell for 19 months ago. I have no family or personal history of migraine.

My Neurotologist (Amazing doctor) was confident that I dont have MAV. We suspected that I might have PLF because I did a lot of severe straining when my symptoms started. And my symptoms were more like PLF than MAV. Additionally, the fistula pressure test gave me severe vertigo in the left ear, the valsalva manuever gave me vertigo, and I always fell to the left on the Quix test. I had PLF surgery to patch the oval and round windows 4 weeks ago and it initially made all my symptoms 10 times worse for the first week, then I had a few good days, then things got bad again. I now have a constant slow spinning sensation and tinnitus in the surgery ear (I never experienced either symptom before surgery). Ive seen cases of PLF that followed my exact trajectory, and it took them about 3 months to recover because of endolymphatic hydrops (which actually sounds a lot like my current slow vertigo with tinnitus). But Im starting to lose hope for the PLF diagnosis. Im going to email my neurotologist and ask if I can start Nortriptyline just to make sure that I am doing everything I can do.

If I have MAV, I will be crushed mentally. I have a hard time accepting that my brain cant sustain itself in a manner that makes life livable. Accepting the MAV diagnosis is kind of like when a cancer patient accepts their diagnosis, there is definitely a period of anger because your body has betrayed you.

I am also really afraid that I wont be able to make a full enough recovery with medications if I have MAV. It looks like most people are able to live a normal life when they get MAV under control, I just hope that I could get it in remission. I guess Im just looking to hear some good news so that if I end up being diagnosed with MAV, that I wont feel like my life is ruined. I really appreciate this board, and everyone here. I just wish we all knew each other on more pleasurable circumstances. :wink:

#2

I’m so sorry you are feeling so disheartened and worried. I’ve read your posts & know you are going tho a lot of trauma and hope the surgery will be successful. I don’t have any knowledge of PLF but I do have MAV and understand your anger & fear about it - I think most of us on this forum have all gone through that. It takes a long time to accept that we just have to deal with it by finding out as much about the condition as we can and making informed choices as to what drug, if necessary, can help us get our life back. After 15 months of trial & error, seeing doctors who either told me there was nothing wrong, or that I was phobic, my biggest help has been this forum and reading all the info about this condition. Finding a good specialist who gave me a management plan and alternatives to try if the drug he recommended didn’t work has also been crucial.
I do hope you can find the strength & courage to deal with it all - I’m sure you will get a lot of support here - we all need it to give us courage to deal with this.
Regards
Barb

#3

Hang in there, buddy -

As Tom Petty would say,

“The waiting is the hardest part.” If you know that a 3 month recovery period might be what you have to endure before you really know if the PLF surgery did work, then you can’t let yourself give in to negative thoughts just yet. Even though we on this board all get it - WE know where those thoughts come from, because dizzy people can’t help but go to the negative at times. It’s very disheartening. But try to stick with fact based thoughts, make post-it note reminders for yourself if you have to: you can’t know the outcome just yet, so don’t “decide” that it’s a bad one weeks before you really know. Maybe it’ll be a good outcome! Then you will have gone through all this “it probably didn’t work” stuff for nothing. If you’re going to err for now, err on the side of beliveing in a successful outcome. It’s better than suffering for the next few weeks assuming it didn’t work - because if the surgery did work, you will really hate having wasted all this time feeling rotten. At the very least, tell yourself “I can’t know, so maybe it’ll be good.”

You can burn that MAV bridge when and if you come to it. :wink:

#4

Wow thanks for the kind words everyone!

I just talked to my doctor, she feels that I should have recovered by now. She prescribed me Verapamil, so we’ll see how it goes!

#5

— Begin quote from “ichbindarren”

If I have MAV, I will be crushed mentally. I have a hard time accepting that my brain cant sustain itself in a manner that makes life livable. Accepting the MAV diagnosis is kind of like when a cancer patient accepts their diagnosis, there is definitely a period of anger because your body has betrayed.

— End quote

Hey – sorry to hear you’re still not feeling as well as you would have hoped after surgery. I think the way you feel about this could be framed differently if in fact you are just dealing with migraine. While we can think of this as the body “betraying” us, we can also choose to think of it as just “shit happens”. I know that sounds very dry but the reality is there are no guarantees in this life and the human body is not the perfect working, self healing miracle machine that it is usually portrayed to be. This is the way I view it: I inherited some less than perfect genes and happened to get some lousy virus that brought this condition on. Others get many, many other health issues in this life to deal with. A few lucky ones will never get anything much worse than the flu. And while some cancers are curable, most are not and usually result in death, eventually. Migraine, on the other hand is not curable, does not cause death, but is manageable to the point where it no longer impacts your life once you find your own winning formula.

My point is that the way we frame this in our minds can mean the difference between feeling damaged and abnormal or a “sick person” and therefore psychologically crushed every day about the whole thing or that it’s just something that unfortunately landed in our laps and has to be managed like it or not. For me this kind of acceptance allowed me to move on in many ways. I try to think not that my body has let me down but that I have to work harder and not let my body down (which ultimately means I will feel a whole lot better) given it was not supplied with a golden set of genes.

If you’re not presently being treated for migraine, I would definitely start trying something to target that. As you know MAV is ultimately a diagnosis of exclusion. Hoping the dizziness and crappy symptoms go and you feel much better soon.

Scott :slight_smile:

1 Like
#6

Thanks a bunch Scott! Great advice there. :smiley:

My doc suggested I do 80mg Verapamil 2x daily. After looking around on this forum a little, that dose sounds a bit high… I took an 80mg tablet a few hours ago. Should I cut my tablets in half for 40mg 2x daily?

#7

im sorry to hear your still not well. ive still got the daily spinning, ear hissing etc and know the frustration. i dont know what gets me more the lack of precise medical testing/knowledge or the condition. FINGERS CROSSED you get a breakthrough either through meds or the surgery. i feel like im getting 1% better every 6 months so its a long crappy road. Have you seen the subjective dizziness post by longjohn? no migraine and is better on ssri? maybe good one to keep in back of your mind? keep going tiny steps will get you there if leaps and bounds dont :wink: bec

#8

Thanks for telling me about that! I will look that up right now. I have heard that SSRI’s are good for chronic subjective dizziness. An SSRI is certainly on my list of things to try if this doesnt work! I actually just posted a story about a guy who was basically cured for 7 years by Xanax, and he only had a relapse because he started recreational drug use again.

#9

I have been on Verapamil for only 3 days, but I actually feel pretty good. I rode in the back of a smokin fast Camaro V8 for a few hours tonight and felt normal, whereas I usually would get motion sick. I took 120mg daily of Verapamil for the first 2 days, and Im stepping it up to 160mg a day now.

#10

Ive been on Verapamil for 1 week now. Ive had more good moments than usual this week, but I still felt pretty bad today when I went shopping. How long till Verapamil works? Im at a pretty high dose (160), so I would think that I should start feeling better soon…

#11

Darren, I can’t answer your question about Verapamil, but just wanted to say I’m glad to hear you have had at least a little improvement; I hope it continues!

My (possibly wrong or flawed) understanding is that once you get the migraine activity lessened, your brain has a chance to adapt and then the dizziness can improve.

#12

Hi Darren, Verapamil is one the drugs Im on, and Im currently on the highest dose (480mg) I started on much less but eventually went up to this and felt a lot more relief. Im only 5’4 and weigh about 160 and handle this dosage pretty well. I take 240mg am and pm. I would say I noticed a difference about a week after starting it, then it continued to get better until I increased from 120mg a day to 120mg twice a day. I stayed there for a while then had some symptoms return so my doctor said I could go all the way up to 480mg. I was already on Depakote which helped calm my brain a lot, but not enough. I recently started Celexa( about a month ago) and it has helped me even more. I am anxious person though, so for me I atleast wanted it to calm my anxiety, and I ended up less dizzy as well. I hope you continue to feel better. I know this condition really sucks. I am only 27 and have 3 young children and in college full time. I still have my moments but Im thankful to be doing much better. Keep us updated.

#13

Hey Darren,

I too have had MAV for almost 2 years now, and all I can tell you is that basically what Scott said is right on target. In November, I decided to change my way of thinking when it comes to MAV. I used search the net for hours on end, get overly frustrated about my condition and I kept thinking of being dizzy soo much that I was putting my real life on hold and was so wrapped up in dizzy thinking all the time.

So in November, I made a self commitment to begin living as a normal person again. I accepted my dizziness and told myself that the searching and thinking about being dizzy for extended periods of time has got to stop or I’m going miss out on life. I’ve already missed a year and a half at that time. But I’ve learned a lot about MAV during that time, I just figured, there’s no more info to learn cause I’ve researched it all and I’d just be wasting my time with it now. I know what I need to do to help symptoms whether it’s lifestyle change, meds or both. There’s no sense looking for new answers when I’ve already read up and researched this stuff. The search is over, I have the info I need and now it’s time to stop searching and keeping my brain locked into dizzy thinking all the time. Although I have had a few vulnerable moments since this change, but only during setbacks. I started to consider trying meds again or chiropractor, but I’d try hard not to dwell on a possible cures or the dizziness itself and then my setbacks would start to lift and I no longer thought about those things. The last 3 weeks I’ve barely thought about my dizziness. So I feel I’m on the right track.

When I say I’ve accepted my dizziness, I have it in my mind that this is what I have and this is how I’ll always be whether I like it or not, and I’m gonna live a happy life with it. If it goes away one day, then that’ll be cool, and if it doesn’t go away one day, that’ll be cool too. Either way, I’m still going to live my life just as happy. No exceptions. No longer will this illness stop me from going out or doing the things I once enjoyed. I’m gonna do the things I enjoyed before, even if I’m dizzy.

Sounds depressing, but I’ve stuck to my plan. It wasn’t easy, whenever I saw myself dwelling on my dizziness, I’d stop and go do something that would get my mind off it. To my surprise, I’ve noticed that when I’m busy doing something, I’m not as dizzy. So fast forward a couple months of thinking this way, and I’m now having many days a week where the dizziness is so minimal that I can’t believe it’s going away. December and January have been the best 2 months I’ve had so far since this all started. I still have my setbacks, but they only last a day or two now and I won’t have another setback sometimes for almost 2 weeks. The setbacks are also less violent. When the setbacks calm down, I feel as if this thing is truly going away. Slowly but it might be. Maybe all I needed to do was stop thinking about it so much.

Another thing that has helped me a lot is also thinking that, I know I’m gonna have a setback sometime here coming up, and I got no problem with it. Bring it on, I’ve been dizzy before and I’m ready to be dizzy again. I DON’T CARE! Being dizzy is no longer new to me. But what’s different now than before is, you won’t catch jumping on the computer or scheduling a doctor’s appt. anymore when I have a bad bout of dizziness. And that kind of thinking alone is what I believe has gotten me closer to remission than anything else has before.

Although a part of me also still believes that the multivitamin Intramax is contributing to my success thus far too. I started taking that in August and I had some nice breakout dizzy relieving moments in late Aug and early Sept. I’m still taking it. I truly believe that it has been a combination of the Intramax and train of thought. When I changed my train of thought on my MAV is really when my success started to take off though.

So just hang in there and try not to think about dizziness so much. I was a victim of that way of thinking for a long time and I believe that caused things to be worse and feeling like I was on a dead end road. Good luck to you!!! Sorry for the long post.

Greg

#14

Rebecca, thanks for the advice! I am glad that this is working for you. I am feeling no better after 1 week. Ive had a few times where I thought I felt better, but that would happen before I started meds, so I dont think it was a positive effect of meds. I started with 120mg for the first 2 days, then did 160mg for the following 5 days. Do you think that I should be feeling better? If I dont feel better after 1 more week, im upping my dose to 240mg.

beatles, thanks for the positive attitude and thought provoking response. :smiley: Your attitude is an inspiration.

Before this chronic SH*T started, I was completely normal. But about 4 years ago, I was super dizzy for 3 days, then it went away. I didnt know what it was at the time, but I didnt care because it went away. So I know that my brain can achieve remission, I just need some help getting it there. I dont know why im stuck in chronic mode now. I feel that I need an antidepressant, Ive felt that way all along. Not because im depressed or have crazy anxiety right now, but I had tons of anxiety right before this chronic MAV started. So I think that this is a serotonin issue. I also believe that low serotonin runs in my family. Nortriptyline is next on the list of things to try of Verapamil doesnt pan out within a few more weeks.

#15

Update: 2 weeks on Verapamil 160mg and I feel absolutely no better. Im increasing my dose to 240mg today. Im loosing my patience because I still feel like sh*t. It seems that most people feel better on Verapamil pretty quickly, so Im going to give this med just a little longer before quitting.

Ive had a big problem with anger lately. I dont know if this can be caused by verpamil. I tried working on my truck today (which I normally enjoy) but I was overrun by an incredible amount of anger and anxiety when I couldnt figure out how to do something. I usually get irritated easily, but this was like an anxiety attack. Im still feeling angry from this experience.

#16

Now almost 3 weeks and Im no better. My doctor wants me to go from 240mg to 360mg. Im not crazy about this idea because of the constipation side effect. I feel that this med would have worked by now if it were going to work.

#17

Sorry to hear that you’re not feeling better! This is a longshot, but do you think you could have bilateral PLF and still have a tear in the other ear?
Just a thought

#18

Thanks! Ive wondered this too, but Im confident that these symptoms are neurological, I have pretty bad visual vertigo. I get really dizzy when I look down and try to read a magizine, or anything like that. The one thing that made me originally suspect PLF is the weird fluid sounds in my left ear, but my surgeon said she didnt see fluid in there. I now remember hearing a few MAV patients talk about this, and Dr. Surenthiran told one of them that this is damage caused by MAV.

#19

The wide spectrum of MAV symptoms is so annoying! But I definitely believe it. Do you think it could be BPPV? I only ask because when I get an attack looking down to read or do anything else really, sets me off into vertigo so bad.

edit: I need to edit this to add, that I’ve had BPPV several times before, and I didn’t have the traditional spinning vertigo when rolling over in bed etc. each time. I was fine in bed. Some attacks just consisted of being super lightheaded to the point where I felt like I was going to fall when I looked up/down. I didn’t even know I had BPPV til I went to VRT and the PT performed an Epley Maneuver on me.

#20

I have done the hallpike-dix maneuver with no nystagmus, and I tried an Epley on both ears since surgery just to be safe.