VN and migraines - Scott, please respond

Specific Illnesses & Conditions VM/MAV
1

March 2010 I started to have strange dizzy spells. I was suffering from imbalance issues. It took me forever to find out what was wrong. In about 6 months I saw maybe 9 doctors. A few of them were convincing me that I had migraine problems, even after I had testing done 3 separate times showing that I had a large vestibular (inner ear) loss. The doctors felt that Vestibular Neuritis (which I had) would not have lasted that long. They started pushing drugs on me for migraines. These are the drugs I was on, all described by different doctors and specialists. Looking back, this is crazy to see what I tried, but for anyone who has never experienced a vestibular problem as bad as mine, you have no idea how scary it is:

Nortriptyline (tryciclic AD) - About 9 mos, starting at 25mg building to 100mg a day. 100mg for at least 5 mos. This was done with very little Dr. supervision.

Topamax - Only about 2 weeks. I didn’t like the drug and did not trust the Dr.

Neurontin - 300mgs for about 3 months

Klonopin - 2.5 or 5mg depending on situation. Used this as needed.

Valium- 5mg? Used as needed.

In the end, I ended up finding a Physio Therapist in Jan of 2011 who specializes in vestibular and balance problems. She was a godsend. I saw her once a week and she gave me exercises to do at home that would help my head, eye and body coordination. All I can say is that I never thought I would get better, and now in the last 12 months or so, cannot believe how much better I am! I have had this problem for almost 2 years, and am glad that the worst of it is over.

So, once I started feeling a little better, I figured I would get off this last drug I was on, the Nortrip. I called the doctor in Feb and he told me to go from 100mg to 75 for two weeks, then 50 for two, then 25 for two, then take 25 every other day. Honestly, I think he might have just told me one week per drop
can’t recall. Anyway, I recall driving one day and started seeing little bubble shaped FLOATERS against the skyline and bright colored cars. I don’t remember when it was that I started noticing the horrible spiderweb / fiber FLOATERS, but those are still very constant. I have been officially off the drugs for 11 months now, which seems still early by judging what I have read online from people who suffer withdrawal from antidepressants.

I saw an Opthamalogist in October 2010, before I had any of the floaters or light sensitivity. We both felt that my eyes were perfect. I have never had any vision problems or complaints. As soon as the floaters started I saw him in March again in October 2011 and a Neuroopthomologist last month. Neither can find anything wrong. Both said I have perfect eyes. Can see nothing wrong. I explained to him my theory about the drugs doing something to my nerves or eyes. He , like all the other doctors, said that that drug should or wouldn’t do this to me, but he understood I was suffering so told me my theory could be somewhat possible.

I am obviously fixated on this now. I feel like if I knew the drugs were 100% my problem and this would somehow, someday go away, I would be ok with it. I mean, I have lived through 2 years of what I thought was the worst thing I have experienced in my life, that being the VN. I now know I can face anything, but the uncertainty is scary.

Now to make matters worse, over the last year, including about 3 days ago, I got what can only be migraine aura. It was a blind spot that formed and rainbow zig zags. It lasted about 20 minutes, but no other symptoms besides the the usual daily ones I have from the VN. Now about the VN


I know, without a doubt I have VN. All of the eye symptoms and VOR problems show that. I had testing done three times, all three times it showed a loss of 73% in my right ear. My highly trained VRT PT agrees with this and feels I do not have migraines. I also do not believe I have migraines. Everything I have, minus those few times I had the aura, is constant and all can be related to VN. The only symptoms I still have VN related are brain fog and problems with head turns. My neck is sore once in awhile now, nowhere near as much as the beginning, but this seems to be related to VN. The ONLY thing that seems migraine related is this aura which seems to happen at random. Now for my questions


I tried migraine preventative drugs and diet before, and it did nothing for my VN symptoms. I feel that 100% tapering off the migraine drug caused my current floaters and light sensitivity as I didn’t have them until I got off the drug. I have also read of hundreds of people who suffer these problems when coming off an AD. Just look on Paxilprogress website.

I really do not want to go on the migraine diet again as it seems that just about every food “could” be a migraine trigger. Most of the foods I eat on a daily basis are on multiple lists.

Is it possible that the VN has triggered a migraine variant, and if so, does diet play into that at all?

I am starting to see an acupuncturist next week and really hoping she can help with some of the symptoms. This is all just so confusing because I know for sure I have VN. I also know that the drugs I was on affected my CNS and I am getting symptoms from that. I will not take drugs again and I do not want to waste any more time with doctors ( I saw about 15 over the last two years and pretty much none of them were helpful).

Scott, what can I do at this point? I am freaked out and trying to remain calm


2

Hello,

Obviously I’m not Scott, although I know that he and I followed a similar trajectory, in that we both started off with VN and a vestibular deficit which awoke an underlying migraine problem. I now have MAV for which I take a migraine preventative.

It sounds like you did have VN and have responded well to vestibular rehab therapy. I did VRT too, and it did make some difference but then, unlike you, I simply didn’t get well enough, which is when I realised something else was going on, namely that the VN had triggered MAV.

I don’t know how helpful this will be but I was not withdrawing from any anti depressant when it happened, and did develop visual issues which came on later on in the whole ordeal. I can’t remember exactly when but I’d hazard a guess at two years ish in to the illness. I suddenly started to experience migraine auras - once flashes of lightning in my vision, another time a scintillating scotoma that covered half my vision. I also get strange blurred vision intermittently and most intrusively I developed quite severe problems with photophobia, I have to be very careful in the sun. So I guess what I’m saying is that VN can trigger migraine problems, or stir up an already existing migraine problem and for me it caused both ongoing issues with dizziness and issues with my vision.

On the up side it sounds like your dizziness issues are mostly dealt with and that’s fantastic. I can’t comment on whether the anti depressant played in to this at all as I just don’t know. All I can tell you is what happened to me re migraine and my vision and that it didn’t have anything to do with drug withdrawal.

If you are concerned about diet and migraine I’d start by simply avoiding caffeine and seeing if this helps with the ocular migraine. Caffeine is the thing most quoted by neurologists as the number one migraine trigger.

H

3

Hi,

It’s quite clear from your post that you are frustrated and anxious about what you have been through which is understandable. From what I understand you have managed to get the VN symptoms under control thanks to the physiotherapist. Your remaining symptoms are scintillating scotoma. You don’t want to see any more doctors, take any meds or do the migraine diet. So I’m not really sure what you are looking for?

Scintillating scotoma IS MIGRAINE. This means you ARE a migraineur. Nothing (not the drugs, not the VN) ‘caused’ you to be a migraineur but certain things can definitely trigger migraine. In your case quite likely it was the VN.

I also experience scintillating scotoma (it was my first migraine symptom 25 years ago when I was a teenager). There’s not a lot you can do for it, just ride it out. Go and lie down somewhere quiet and dark. The scintillating scotoma last for about 20 minutes. For a few hours afterward you will probably feel pretty crap - like a bad hangover.

As Hannah suggested try cutting out caffeine, I would also suggest cutting out alcohol. Try and keep to a regular routine - go to bed and get up at the same time every day, do regular and moderate exercise, don’t skip meals.

I think you are wasting your money on acupuncture.

Vic

4

Its possible that migraine has been the cause of your symptoms all along. The vestibular deficit is suspicious of VN, but I would be doubtful of this unless you experienced one acute vertigo attack that lasted a few days.

Since you experienced a migraine aura, this proves that you have migraine activity in your brain. This does not proove MAV, but makes it extremely probable. Migraine can definitely kick in after VN and hinder vestibular compensation from VN, this is very common as I have been told by a balance expert. The nortriptyline must have raised your migraine trigger threshold and allowed the migraine activity to retreat. Since the migraine was no longer either causing all balance problems(MAV) OR preventing compensation from VN (VN+MAV), that is the reason why VRT was helpful. VRT is only helpful when the migraine is calmed down with its own effective treatment.

Starting or coming off migraine meds can cause migraine to destabilize, and I believe that is what happened to you. This is why you had migraine aura show up after migraine meds, and not before. Has your dizziness been any worse? Can you still tolerate doing VRT?

It is absolutely possible that VN can trigger a migraine, any type of trauma can trigger migraine activity.

Since you experience Aura, you KNOW that you have migraine activity. I would recommend continuing migraine treatment, and see what happens. I would try a Beta Blocker or Calcium Chanel Blocker since you havent tried one.

5

I guess I just wanted to know if the VN damage is causing the migraines and not other outside factors. I also truly believe (I have researched both migraines and VN extensively) that the VN came from a virus and not migraines. Before the VN hit I had absolutely no migraines problems whatsoever at the age of 27. Then attacks of quick spins started about once a week for a few weeks, then once every two week for a few months. I also know that I have every sign of VN, messed up VOR and gaze. The head thrust test still shows I have this. I have experienced no other migrainous symptoms. the only reason I was put on a migraine preventative was because one of the many doctors I saw thought me being bothered by fuorescent lighting was a migraine symptom, even though I now know that is a major symptom of VN and labs. Everything I felt before the drugs, on them and now after has been constant and all symptoms of VN. The ONLY migraine symptom is the random aura I have experienced a few times in the last year. No other symptoms come with it. If I was truly suffering from migraines, wouldn’t I be having more symptoms a lot more often? I never “have” a migraine
everything is constant and not debilitating.

How else could you explain such a large loss on three separate tests? There is no way I had migraines all along
 the VN came first. I have had absolutely no dizziness in almost a year and a half, I just feel “off” like how many people with labs and VN feel. I never felt any better while on the Nortrip which is why I got off of it, and things only got worse once I got off. The VRT is still helpful. I believe the first aura I saw was while on the Nortrip, while still on 100mg in my 8th month or so. Dizziness has only improved, never gotten any worse.

I do not want to take any more drugs that can change chemistry in my brain. I truly think the Nortrip damaged my CNS and I am still recovering from it. I don’t want to bother with the diet again since it didn’t seem to help any of my symptoms when I did it for 6 months at the beginning of my VN trip, granted this was before I first experienced my scotoma. It seems that just about anything or everything CAN be a trigger, so instead of stressing out about what I eat, I just wonder if the VN damage and that alone could cause this random aura I get once in awhile. It is freaky, but over all, since I get no other symptoms, it doesn’t seem to be much of a bother.

I have not drank caffeine in over 18 months. I didn’t drink alcohol for a year, but now just enjoy a vodka or two on the weekends. Otherwise my routine is pretty regular and I eat very healthy and exercise regularly. Nothing ever seems to make me feel worse, just more of the same every day


When you say photophobia, what do you mean exactly? The last year I have found it very difficult to be in the bright sun without my shades on, but it’s not like it gives me headaches or makes me sick. I don’t need to lay in a dark room and am not afraid of it, it’s just very uncomfortable. Again, this is something very common with AD withdrawal. It is also constant, never really better or worse.

I also really don’t “get” ocular migraines. I just had three separate occasions where it popped up at random, yet that was the only symptom. Since these things are not debilitating, is it something to even worry about?

6

Hi again awalkerphoenix,

I’m not sure what you’re asking of us. You seem to be convinced that your problem is VN, not migraine or that if you do have migraine it was ‘caused’ by VN.

Migraine is genetic. When and why it becomes expressed can be any number of things. I started getting migraines around the age of 14. Don’t know why then and not age 5, 12 or 25. Possibly hormones - who knows and does it really matter? For other people it is a ‘big bang’ event such as pregnancy, childbirth or following an episode of VN. Other times there is no rhyme nor reason to when or why. If you DO have migraine (which you seem convinced you don’t) then the VN was your trigger, not a ‘cause’.

Photophobia means fear/discomfort (phobia) of light (photo). It doesn’t have to make you ‘sick’ it can just be that it makes you very uncomfortable. Personally I find flickering lights the worst - strobe lights, fluoro lights or even candle light. I also dislike bright light or glare such as on a very sunny day. None of these things will necessarily cause me to feel sick, I may simply find them very uncomfortable. This is very common for migraineurs. It may also be common for people who’ve had VN, I don’t know.

Many people have ‘stand alone’ migraine attacks but many people (in fact the majority on this forum) have suffered long periods (weeks, months or even longer) of constant symptoms. That has certainly been my experience. In amongst chronic phases of migraine I can still get scintillating scotoma now and then. Migraine is a very tricky disease - it does not always follow the ‘rules’ of what people think migraine is. Traditionally people think of migraine as occuring in discrete attacks, ending in a headache. That is simply not the case. Trying to analyse symptoms and jam them into a ‘migraine box’ is not easy. The symptoms overlap with a number of other conditions, VN included. And they aren’t mutually exclusive - you can have both (or even more).

When I was younger my migraines were always simply scintillating scotoma - that was my only symptom - no headache. They popped up at random, no obvious triggers.

I am not aware of **any **other cause for scintillating scotoma other than migraine. Maybe I am wrong, perhaps you can find something that says otherwise. Does it matter to you what causes them?

If you are finding the scintillating scotoma not too troublesome then don’t worry about it. Truly. No point being on meds or disrupting your diet or lifestyle for something that has minimal impact on your life. You may never experience another one again! :slight_smile:

7

Hi,

Here’s a description of ocular migraines from a medical site:

Ocular migraines are painless, temporary visual disturbances that can affect one or both eyes. Though they can be frightening, ocular migraines typically are harmless and self-resolve without medication within 20 to 30 minutes.

So I guess there’s your answer, As Victoria says you don’t need to bother with meds.

On the subject of VN or MAV. I hope I am getting this right, but you were taking nortiptyline the whole time you were doing physical therapy? And yet you say the drugs never made you feel any better? How do you know? Obviously you are happy with the progress you have made dizziness wise, so mostly it is irrelevant whether it was the VN or the migraine , which you do suffer from as evidenced by the ocular migraine, which made you dizzy, or both. However, I’d say Darren is right and there’s every chance that migraine probably prolonged your VN symptoms or caused the problem in the first place - although the vestibular deficit would suggest you did have VN initially. People with either problem can be advised to do physical therapy (VRT) once the migraine activity is stabilised through drugs, they then sometimes find it very helpful. The only reason it is worth pointing this out to you is in case you get dizzy again. It would be a shame to be so fixated on the notion that it HAD to have been VN and only VN and not realise that the nortripytline could have been instrumental in your recovery.

Your assertions about why it must be only VN don’t ring true - You say - If I was truly suffering from migraines, wouldn’t I be having more symptoms a lot more often? - Not necessarily, especially not now it has stabilised. The symptoms of VN and MAV or VN which is prolonged by MAV, can be pretty much identical, especially when the symptoms are constant. Migraine changes and morphs all the time, migraine could have been messing with your damaged vestibular system and now could simply be causing the ocular migraines.

Re the photophobia, this simply mean sensitivity to light and is a very indicative of migraine.

H

8

Hi awalkerphoenix,

All of the responses to you have been really spot on. Here’s my perspective:

  1. I think you probably did have VN. The deficit in your ear (I take it this was a reading from the caloric) is pretty good evidence that a virus hosed that ear. However, migraine can also cause this to happen though I don’t think it’s that common for a huge deficit to suddenly occur from migraine. I tend to think you probably had VN because of the way you describe this and the trajectory and I relate very clearly to it reading between the lines. It’s obvious your life was turned into a real hell on earth and really, I can’t think of anything worse then a dose of VN with migraine as a complicating cofactor.

— Begin quote from ____

From the Survival Guide:
Finally, it can often be found that the first attack is the most severe and of greater intensity and duration than those that follow. Sometimes the initial attack is consistent with vestibular neuritis (VN) followed by a long compensation period. Under normal circumstances an acute attack of VN will last anywhere from 2 days to 6 weeks followed by a period of chronic compensation. Vestibular rehabilitation therapy (VRT) may be necessary and the patient will usually recover completely. In a susceptible migraineur, however, an attack of VN or other viral illnesses such as Bell’s Palsy can be the “Big Bang” that initiates the chronic migrainous vertigo state with no end in sight. The patient may think they are still suffering from VN long after it has resolved, but it is migraine that perpetuates their dizziness and keeps them feeling ill. MAV patients are also highly susceptible to BPPV (loose ear crystals moving around in the inner ear canals) occurring at a rate three times greater than any other idiopathic (unknown) cause. A BPPV attack may either provoke the onset of chronic migrainous vertigo or occur sometime after the first migraine episode.

— End quote

  1. You ARE a migraineur. This is something you need to come to grips with right now, today. You get the auras, you get the sore neck, fluoro lights do your head in, etc. It couldn’t be any more clear unless someone wrote it on your forehead. And yes, it’s very plausible and probable that VN (if that’s what you did get) was the “Big Bang” that was the precipitating factor to really seriously awaken your migraine brain and trigger this. Note: not the “cause”. Even without VN, this may have still been fired off later in your life.

  2. VN or labyrinthitis does not hang around indefinitely like some will bang on about on other forums. It just doesn’t happen. No one gets labyrinthitis for 7 years. Viruses strike, do the damage and then they go. The left over damage and migraine is what you’re dealing with. I cannot comment on the eye stuff as the others know that better than I (I do not experience scotoma or visual aura apart from visual vertigo) but it seems very unlikely that coming off a tricyclic AD would trigger some weird visual thing that would linger as you describe. I’ve just never heard of that and it seems more likely that it’s migraine related.

You say that when you came off the Nori that things got worse. Have you considered that Nori was keeping the lid on this for you? In reading your analysis I see a lot of your trying to connect the dots looking for correlations. This is good and it’s usually how people find answers but you need to think outside the box and not presume causation. You’ve been trying to convince yourself of stuff that is just not true – as in the migraine bit. The physio who agreed that you were not a migraineur didn’t know what she was talking about. The other doctors you saw, did.

You know what my gut feeling is with your case? That you would do VERY well on an SSRI – either Zoloft, Celexa or Paxil. You might only need a low dose too. Very good that VRT worked for you 
 sounds like you went through a long and very tough chronic compensation phase and still are. sounds too like a benzo helps just as it does for about 90% of the people here.

Start getting a migraine lifestyle happening. That’s numero uno. For some of us, food makes a MASSIVE impact on whether you will feel totally shit or not. All I need to do is drink a cappuccino, glass of wine and eat a pizza and more shit hits the fan then the fan can handle. It’s ugly. Your anxiety over this is probably doing you in as well. Stress and anxiety is the top trigger.

Once you get your head straight about what’s most likely going on, you can focus on getting well. There’s no guarantee that you will ever feel as you once did. VN is a bit like having a tornado go through your brain. It takes down all of the neurological power poles. It’s like the city has to rebuild itself and there may be a few lingering burnt out street lights that you may just have to accept (I can’t listen to music on headphones and use a computer at the same time for example = dizzy, nor can I lie down on my left or right side to sleep which is good as far as I’m concerned 
 I won’t end up with permanent sleep bags etched under my eyes like my father :lol: ).

Keep an open mind about what’s going on and read through this forum for the facts and people’s experiences. The people on this forum are like having the Smithsonian Institute of migraine at your doorstep.

Lastly, unless you feel relaxed and good having acupuncture as a means to chill out, don’t waste your money thinking it will end this. It won’t fix your head but it might calm you down and may even throw a nice placebo your way for a few days. Nothing wrong with that for 30 bucks.

Good luck 
 Scott 8)

1 Like
9

My “story” is exactly how Scott describes
 I got vestibular neuritis and I never fully compensated for it. Got a few bouts of BPPV too. I already had classic migraines for 4 months prior to the VN, and I believe that kicked off the vestibular component to them. Like many, my dizziness and headaches seem to occur separately. Just have a constant imbalanced feeling that increases with activity, as well as some tinnitus.

Best of luck to you on this super sh*tty journey! Hope you find some relief soon.

10

I was not doing VRT while on Nort. I started VRT after I started weening off of it. I got off Nort because it wasn’t helping at all and me and the Neurooto agreed that with being on it for 9 months and 5 months of it was 100mg, that it wasn’t working or migraines were not my issue. Then I started the VRT and my imbalance and VOR problems started to get much better, but then the sensitivity to sunlight really started up. The only reason the Neurooto ever suspected migraines was because I was uncomfortable under bright lights and fluorescent lights. Not that they caused any kind of pain or anything, just wasn’t comfortable. You can read here vestibular.org/images/pdf/Vision 
 pubF31.pdf

You can see why this has been confusing to me.

I just wanted to make it clear that as far as photophobia in the sun, this was never a problem before or during the Nort, and it only started once I came off of it. I used to feel the same way that withdrawal from an AD could never last this long, but I have talked to so many people who had this same thing happen. Therefore, even more confusion. If I look at both possibilities, when my VN was at it’s worst, both before and during the Nort, I did not have this problem, then within days of weening of the Nort I had in influx of Vitreous Floaters (never had these before either, didn’t even know what they were) literally pop up over night and then the sun light problem started. This could just be coincidental, but I think the withdrawal theory makes more sense.

I am reading and taking in everything you guys are writing and I totally appreciate it. I don’t think any of you are blowing smoke or full of it. The problem I have with accepting that migraine is causing ALL of these problems is because in all of the writings and with each of your responses, it seems like there are episodes or occurrences. I have no dizziness at all. There are no positions that make me feel worse. No matter what I eat or drink I don’t ever feel worse or different. A night of pizza and beers won’t have me feeling any worse, which brings me to the confusion of a “trigger”.

I completely agree that VN doesn’t last for two years, but I do disagree that it doesn’t take this long to recover. Anything over 20% is considered to be a large amount, and at 73% loss for me, my doctors and PT say they have never had anyone with that large of a loss. Since I know that my Vestibular Occular Reflex is still off, based on my VRT, I know that I still have room for improvement. WIth the amount of damage I have, I know that it will still take time for me to compensate, such as seen here: labyrinthitis.org.uk/emma.htm

While I agree that the stuff like sore neck and fluorescent lights are a part of migraine, they are also 100% a part of someone dealing with vestibular damage. I have studied this extensively and theories to why make sense. I already posted about the fluorescent lights up above, and regarding the neck, those muscles are literally holding my head up straight all day since my head does not know where it is in space. This is something that went away for a good 7 or 8 months with VRT, but has just started again this last week. This last week I just happened to start playing tennis and basketball for my first time since this all started, using it as a type VRT, helping with unprovoked head movements. You are probably right that my VRT doesn’t know as much as me or any of you guys about migraine, I won’t argue that. But I will argue that she does know more about vestibular problems, VRT and compensation than any doctor. She knows I still have room for improvement as far as compensation, but you are right, she has no idea about the aura I have experienced. When you say that the doctors I saw did know what they were talking about, I still think it was just an educated guess. The one wouldn’t even look at my test results from my ears and wouldn’t listen to anything about ears. He simply just wanted to throw me pills without even listening to what caused the problem in the first place. The Neuoroto who prescribed the Nort completely agreed on the ear damage and VN, and only tried the Nort because of my complaints about fluorescent lights (at the time I had no photophobia or problems with the sun, and the Nort and diet never helped with that symptom). Many people with labs and VN complain about Fluorescent light, so a Google search.

A year ago I would totally have jumped on the benzo train, but after what (I feel) the mix of AD’s and brain altering drugs did to me and how much I have learned about them (check out paxilprogree.org to see how much damage they can do) I won’t try another one again. Believe me, I never felt this way before, as you can see I was on about 10 different drugs the first year dealing with VN. At this point I feel like it can only do more harm than good, even though I wish I could use one to help with my anxiety over all of this =)

I agree that my anxiety over the “diet” had been bad the last few days. A week ago I didn’t think twice about it, until the rare Scotomo hit me at work. That is cool how you know that cappacino or wine trigger you. For me, there is nothing that makes me feel worse. I have abstained from caffeine for over a year just because I feel like it can’t help any of my symptoms, but the few times I have had coffee or chocolate, it doesn’t seem to make anything worse.

I like your description of my town being laid to waste. No doubt I got some screws loose up in my head right now. A lot has improved, but I do fear that some of these problems will just linger on forever, mostly the vision problems and cognitive problems. Otherwise, there is really nothing I cannot do anymore or anything that that is a “problem” for me.

I am keeping an open mind about all of this, which is why I am on here talking to you guys. I am not trying to argue at all, just trying to have an open discussion here. I do get a little defensive when people (especially people with migraines) point and say that migraines are causing ALL of my problems. I have read books, forums and countless websites and yet can find anything or anyone that is close to me as far as migraines go (minus the aura a few times), mostly because everything or everyone talk about episodes which I have never had. I also do not want to drive myself crazy with migraine diets and drugs as I am still having my hands full dealing with the vestibular loss.

I am starting back up on a limited migraine diet and will refrain from alcohol use (another thing that never makes me feel noticeably worse the next day or week). I will also try to keep my stress and anxiety low and take into account everything that has been said here. I guess through all of this I have just been trying to get an idea of how much I should freak out, or not freak out, about this occasional aura which I had pretty much forgot about until the other day. I wish I had other symptoms or signs that more definitely pointed to migraines, but I just don’t.

Again thank you all for the responses and information. I will let you know how things progress from now on.

11

I didnt accept MAV at first either because I had a similar history to yours. I have absolutely no personal or family history of migraine headache OR aura. I was pretty much never dizzy a day in my life till MAV hit me, and I have been in chronic 24/7 hell ever since. I have no episodes and no diet triggers, etc
 I have STILL never even exhibited migraine characteristics like you have (your aura).

I still believe that quitting nort destabilized your migraine, that is why you started getting photophobia and migraine aura. I can say this confidently because a similar thing happened to me. I trialed propranolol for 5 weeks and it made no improvement, but when I quit it, new migraine symptoms started to appear. Quitting propranolol caused my MAV to destabilize, and I am still experiencing these new symptoms.

I would not recommend reading forums about other peoples experiences with VN or withdrawal effects from medications. This information is useless because they have no prooven diagnosis, and most of those people are probably misdiagnosed to begin with. I used to read general forums about dizziness and it was extremely misleading because their doctors would just throw out a random diagnoses from the textook, and it was usually uncompensated labyrinthitis, when I now realize that almost all of those people had MAV. Forums can be dangerous because one misdiagnosed patient can cause a string of followers who misdiagnose themselves.

A 73% loss is massive, and that damage will always be there, and you probably wont be able to make a complete recovery from that. But the brain will compensate by using the rest of the functioning system, the brain is a master at this type of adaptation.

12

If what you say is true about dizzy and medication sites, than isn’t it the same about this site? Isn’t migraine just an educated guess to?

13

When a person begins treatment for migraine, it is an educated guess because there is no test than can prove migraine. So the only method of proving migraine is diagnostic/therapeutic success. The nature of this forum is a little different because most of the people on this site have already been successfully treated for MAV, thus proving their diagnosis. There are a few other specialty websites out there like this one that I would consider to be trustworthy, but remember no forum is a substitute for medical treatment.

14

Hey Aaron, I don’t think posting on an mav site for reassurance that u don’t have a migraine component was probably not the best idea :wink:
I just want to say one more thing. The vn is and was your main issue but u may also have a migraine component. The migraine cud just be normal migraine or vestibular migraine, both wud effect your ability to compensate for the vn. Notrityline may not have been the right drug for u. It doesn’t help all migraneurs.

15

I was not doing VRT while on Nort. I started VRT after I started weening off of it. I got off Nort because it wasn’t helping at all and me and the Neurooto agreed that with being on it for 9 months and 5 months of it was 100mg, that it wasn’t working or migraines were not my issue.

This seems like a reasonable choice to me if you weren’t seeing at least a 50% plus increase in symptom relief. However, when you came off the drug the light sensitivity kicked in. We KNOW you are a migraineur already. To me it is textbook stuff with your history. I think while the Nori wasn’t the best migraine drug for you, it did remove some symptoms – namely photophobia. All you have to do is move on and find a med that fits better such as an SSRI. Keep in mind, too, that it’s possible that Nori was a good med for you but if you kept exposing yourself to migraine triggers, it could have rendered it near useless. Meds are supplement to and not a substitute for lifestyle modification (see comments by Prof Steve Rauch on this under FAQs).

Then I started the VRT and my imbalance and VOR problems started to get much better.

Excellent. There’s no question that there is a necessary period of chronic compensation after a bout of VN. Note I said AFTER. You don’t have VN, the virus is gone if that is in fact what happened to you. Having migraine as a complicating cofactor means that compensating for ANY deficit takes a very long time or may not occur at all. I know two people (one a prof) from the University of Sydney who were both floored by VN or labyrinthitis. Both were bed ridden for 3-4 weeks (one in hospital for 5 days) and by 6 weeks they were back at work still feeling off but well enough to work again. By 2-3 months there was total resolution of symptoms. Neither has migraine. Two years into this and I was still getting what I thought was “decompensation”. I couldn’t figure out why I kept feeling crappy, thought the idea that I was a migraineur was absurd and wasted a lot of time feeding the triggers and not feeling well because my head was in the sand.

The only reason the Neurooto ever suspected migraines was because I was uncomfortable under bright lights and fluorescent lights.

And he disregarded your neck pain and auras?

You can see why this has been confusing to me.

Only because you do not accept that you are a migraineur. There is actually a paper in the literature about people’s resistance to this. I was one of them too. Migraine to me had to come with pounding head pain and vomiting and only affected old women. Otherwise forget it. Wrong. Migraine affects a HUGE proportion of the population. Do the maths, and reexamine your history.

I just wanted to make it clear that as far as photophobia in the sun, this was never a problem before or during the Nort, and it only started once I came off of it.

This is because Nori was likely controlling it and at some stage your migraine changed and this new symptom arrived. You are incorrectly assuming Nori caused your photophobia. All of us here have had new migrainous symptoms emerge over time. Hannah’s light sensitivity was not there initially for example but worsened with time (correct me if I’m wrong Hannah).

If I look at both possibilities, when my VN was at it’s worst, both before and during the Nort, I did not have this problem, then within days of weening of the Nort I had in influx of Vitreous Floaters (never had these before either, didn’t even know what they were) literally pop up over night and then the sun light problem started. This could just be coincidental, but I think the withdrawal theory makes more sense.

I think migraine is what makes sense. The fact that the light sensitivity and the perception of floaters occurred simultaneously.

The problem I have with accepting that migraine is causing ALL of these problems is because in all of the writings and with each of your responses, it seems like there are episodes or occurrences. I have no dizziness at all. There are no positions that make me feel worse. No matter what I eat or drink I don’t ever feel worse or different. A night of pizza and beers won’t have me feeling any worse, which brings me to the confusion of a “trigger”.

No two migraineurs are alike in terms of symptoms and triggers. It’s like your own personal fingerprint apart from the fact that migraine changes over time, fingerprints don’t. You’re very lucky that this hasn’t been worse to be honest. I am not convinced that you have zeroed in on possible triggers yet, whether food-realted or not because you haven’t accepted being a migraineur. There may be no food triggers as you say but unless you experiment and keep a diary you’re observations will forever be clouded by your own potentially flawed deduction and reasoning – both of which are usually off the mark for people unless they take notes and keep solid records when they haven’t yet figured out what’s what.

I completely agree that VN doesn’t last for two years, but I do disagree that it doesn’t take this long to recover. Anything over 20% is considered to be a large amount, and at 73% loss for me, my doctors and PT say they have never had anyone with that large of a loss.

Recovery and having VN are two different things. VN came and went and now you are stuck with what’s left behind: the need to compensate and having migraine in the picture screwing things up all the time. My PhD supervisor had a cochlear implant in one of her ears when I started working with her in 2000. She had 100% loss in the left ear and guess what. No dizziness. In the dark she struggled slightly but otherwise nil. Three years ago, she had a second implant in the other ear. She now has NO balance input from the inner ears but she is not dizzy nor does she feel off apart from difficulty in the dark. The brain can compensate for any level of loss. Things that can inhibit the process are things like your eye sight could be off requiring glasses or migraine is in the picture. You clearly fit the latter.

Since I know that my Vestibular Occular Reflex is still off, based on my VRT, I know that I still have room for improvement. WIth the amount of damage I have, I know that it will still take time for me to compensate, such as seen here: labyrinthitis.org.uk/emma.htm

This individual does not have labyrinthitis any longer (it was gone in 2003) and is not still compensating after nearly 10 years. It does NOT happen that way. This person is a migraineur and was prescribed propranolol from a leading neurologist in London. I have never seen any evidence that suggests that the level of loss in an affected ear has any bearing on the length of time necessary for compensation. As above, see the case of 100% loss.

While I agree that the stuff like sore neck and fluorescent lights are a part of migraine, they are also 100% a part of someone dealing with vestibular damage.

Not light sensitivity and not aura. Find me a physiological explanation for light sensitivity being created by VN. What is the mechanism and where is it discussed in the science literature? What you’ll find in the science literature is that photophobia is one of the hallmarks of a migraine brain for those affected.

But I will argue that she does know more about vestibular problems, VRT and compensation than any doctor.

While a physiotherapist who deals with VRT would be more in the know about how to execute these exercises what makes you think she would know more than a neurologist who has studied the vestibular system and migraine at university level? They have to go on to study for years after receiving their MD. Your position here in not logical nor rational.

She knows I still have room for improvement as far as compensation, but you are right, she has no idea about the aura I have experienced.

There you go.

He simply just wanted to throw me pills without even listening to what caused the problem in the first place. The Neuoroto who prescribed the Nort completely agreed on the ear damage and VN, and only tried the Nort because of my complaints about fluorescent lights (at the time I had no photophobia or problems with the sun, and the Nort and diet never helped with that symptom).

He wasn’t throwing pills at you. He wanted you to get well again, heard your clue about light sensitivity and knew you were also dealing with migraine. Perhaps he could have explained his rationale to you much better. Seriously, I’m not trying to be condescending here but it’s not rocket science when you view your case from outside the box. I had Adam and Hannah saying the same things to me because I just couldn’t see it clearly inside my own misguided reasoning.

A year ago I would totally have jumped on the benzo train, but after what (I feel) the mix of AD’s and brain altering drugs did to me and how much I have learned about them (check out paxilprogree.org to see how much damage they can do) I won’t try another one again. Believe me, I never felt this way before, as you can see I was on about 10 different drugs the first year dealing with VN. At this point I feel like it can only do more harm than good, even though I wish I could use one to help with my anxiety over all of this =)

Seriously dude, if you keep thinking along these lines you will be in the shit for a long time. Can you not see how you have a hypothesis locked in your head about this and then have gone out to sites like Paxilprogress, read horror stories, and used that to check the boxes for yourself? Dangerous stuff because you risk running around in circles for years thinking if you just keep doing VRT for another few years, take the natural route because migraine meds are deadly etc, that you’ll one day be OK again. You only need to jump on a few other forums out there and you will find tons of people who continue to struggle for years because of this thinking. I’m not pushing drugs down your throat but the evidence is clear. If lifestyle (and in your case some VRT) doesn’t clean up the mess, then a migraine med is essential.

I agree that my anxiety over the “diet” had been bad the last few days. A week ago I didn’t think twice about it, until the rare Scotomo hit me at work. That is cool how you know that cappacino or wine trigger you. For me, there is nothing that makes me feel worse. I have abstained from caffeine for over a year just because I feel like it can’t help any of my symptoms, but the few times I have had coffee or chocolate, it doesn’t seem to make anything worse.

How do you know that in your case it is not a combination of triggers that is needed to set you off. In other words, chocolate and a coffee alone may not do anything but couple that with low level anxiety or bad sleep and BANG, it might be your trigger. Again, you have to do some detective work to see if this is the case.

I like your description of my town being laid to waste. No doubt I got some screws loose up in my head right now. A lot has improved, but I do fear that some of these problems will just linger on forever, mostly the vision problems and cognitive problems.

Yup, this is a possibility. You will likely never quite feel like you did before it happened. Rather you will feel like a different 100% when you reach it. Or you may have to settle for 90% and put up with days that will just be bad for no particular reason as migraine smoulders away in the background. OR you may see this out the door completely with the right treatment. Many here have achieved this and haven’t had to return here.

I am keeping an open mind about all of this, which is why I am on here talking to you guys. I am not trying to argue at all, just trying to have an open discussion here. I do get a little defensive when people (especially people with migraines) point and say that migraines are causing ALL of my problems. I have read books, forums and countless websites and yet can find anything or anyone that is close to me as far as migraines go (minus the aura a few times), mostly because everything or everyone talk about episodes which I have never had. I also do not want to drive myself crazy with migraine diets and drugs as I am still having my hands full dealing with the vestibular loss.

You need to consider that the vestibular loss is not the main issue which is where you are focussed. Consider that it is migraine that is your major road block. Yes, you may require more VRT but with migraine in the way, you are probably at the end of the road with VRT for now. Good that you are asking questions and debating this. I did the same as you.

Keep thinking this through and examining your logic. I think you’ve simply been locked into this idea that it’s all VN (as I once did) with some migraine weirdness lingering around but not to be taken too seriously when in fact any VN was gone a long time ago and it’s migraine that should be your focus and possibly more VRT when you have migraine reined in. In fact, when you get migraine reined in you probably won’t need any VRT.

Cheers 
 Scott 8)

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— Begin quote from ____

I am reading and taking in everything you guys are writing and I totally appreciate it. I don’t think any of you are blowing smoke or full of it. The problem I have with accepting that migraine is causing ALL of these problems is because in all of the writings and with each of your responses, it seems like there are episodes or occurrences.

— End quote

Actually, I don’t think you are taking it all in.

No-one has suggested that migraine is causing all your problems. What has been suggested to you is that you have migraine as well as/complicating your VN. There is NO other known explanation for the scintillating scotoma aura other than migraine. If you can find something that says otherwise please let us know.

No-one is talking exclusively about episodes or occurrences. The majority of us on this forum experience chronic phases of migraine with constant symptoms.

Many of us have struggled to accept the migraine diagnosis, mostly because our symptoms don’t fit with what most people (even most GPs) think of as ‘migraine’. I think you have come to a migraine forum expecting/hoping that we will all say what you want to hear which is “Of course you don’t have migraine!”. But based on your symtpoms, we all know you do. You might be able to explain away the majority of your symptoms by attributing them to VN but the scintillating scotoma is the absolutely undeniable evidence that you DO have migraine. You need to get your head around that.

If you are feeling tolerably well and the scotoma isn’t bothering you then happy days, don’t worry about it. They may calm down even more and you may never have another migraine again. For many people that is the way it goes. My brother had terrible migraines (the tradtional, crushing headache variety) for a few months in his early teens. Then, all on their own, they went away, never to appear again. He’s 43 now.

17

Not light sensitivity and not aura. Find me a physiological explanation for light sensitivity being created by VN. What is the mechanism and where is it discussed in the science literature? What you’ll find in the science literature is that photophobia is one of the hallmarks of a migraine brain for those affected.<<<

I did provide the physiological explanation. Here it is again:

vestibular.org/images/pdf/Vision 
 pubF31.pdf

I am starting back up on a limited migraine diet and will refrain from alcohol use (another thing that never makes me feel noticeably worse the next day or week).

Alcohol is a MAJOR migraine trigger. Feeling worse after eating or drinking something is the definition of a trigger. You’ve already identified one! Why do you think you feel worse from alcohol? If I drink too much booze I too will feel like road kill for a good week. More fogged, more anxious, just overall bad. And it could be a whole range of symptoms.<<<

This was a typo! I meant I DO NOT feel noticeably worse on days after drinking. I always feel the same.

And I DO hear what you guys are saying. I will make it in to see a Neurotologist or Neurologist as soon as I can. I am scared that they won’t “get” migraines like you guys with experience do. I also want to be sure they give a proper drug for my condition. The one Neurologist I saw only used Topamax. The Neuroto only used Nortrip. I still want a doctor that will take into account my VN damage. Doctors like this are hard to find on an HMO!

How will I know what drug to take? How will I know if the doctor is competent?

And I know you guys keep wondering why I came on here? It wasn’t so you guys would say “You do not have migraines!”, it was to see if it is possible that the VN alone was causing migraine type symptoms.I don’t want to limit my life to eating nothing but brown rice again since I cannot find a food trigger. And since I feel the same everyday, regardless of what I do, what’s to say that anything else is causing it besides the VN, which obviously set this all off? My life is already very joyless, I don’t want to go back to worrying that everything I do will make me worse.

I am listening. What do I do next?

18

Would you guys equate after images, something I have had since day one, with migraine too?

19

And what are really the chances that something like nuts, milk or certain vegetables could be adding to a constant migraine symptom? Things like cheese, wine and alcohol I understand, but these lists seem to never end as if anything could cause migraines


20

Heya,

My mistake re the alcohol 
 it was 7 AM. :shock:

Thanks for the link:

— Begin quote from ____

A person with a vestibular disorder may also experience photosensitivity (discomfort with bright light) and other vision problems such as: intense discomfort with flickering lights, particularly fluorescent, sodium, or mercury vapor lights; moving objects; rows of similar objects, such as in grocery store aisles or lines of text on a page; or busy, high contrast patterns, such as polka dots or sunlight filtering through mini-blinds. Environments with a combination of fluorescent lighting and busy patterns or moving objects are especially problematic which is why shopping in large stores may be very difficult. Even environments with subdued décor can be fatiguing if frequent head movements are required, such as when a person converses with others at work or at a social gathering.

— End quote

I checked the references in the article and do not see it in the literature. While busy patterns and scenes can be a definite problem for people with any vestibular disorder, light sensitivity created by a hosed VOR does not make sense nor have I seen it in a scientific publication or have I had it relayed to me through any expert opinion. It is photo and phonophobia which are the key indicators for a migrainous illness especially when dizziness is involved. You’ll see this in any paper which deals with differential diagnosis and is one of the key methods of pulling it apart from Meniere’s disease for example.

There is simply no mechanism that would cause light sensitivity because of a VOR mismatch; rather, it is a migraine trait – a neurological central brain problem that produces this in a migraine brain. I would argue that any physician who has a dizzy patient complaining of dizziness and photophobia has a migraineur sitting in front of them. To tell someone that years out from a VN attack that they have photophobia because of VN is not supported by the evidence.

Have a read through this paper and take it to your doctor. Note the indicators shown on page 37:

There is no “right” drug for migraine in general. You have to go through them one by one until you find one that works. Doctors usually have their favourites because it is what they know best but they should be willing to try other off-label meds. There’s usually one from one of the migraine med families that does the job. What city do you live near? Someone here will know a doc in the vicinity that is worth seeing. I don’t think you need to focus on the vestibular loss in this a whole lot. That is something that will right itself through reining in migraine and your brain compensating. And if you feel you are continuing to improve via VRT then keep at it.

Keep asking questions! That’s what the forum is for. :slight_smile:

Cheers S