VN and migraines - Scott, please respond

Specific Illnesses & Conditions VM/MAV
21

Anything can TRIGGER migraine. The cause is genetic.

You will have to discover what your own personal triggers are. I knew one lady who suffered for two decades and one day worked out it was tomatoes. She removed tomatoes from her diet and no more migraine. That was a simple case and lucky. Most have multiple triggers. If you are in a really bad way, just getting up in the morning might be a trigger.

Given you probably had VN, anxiety and a shattered nervous system from all of this, I have a hunch that an SSRI is your first point of call. That’s what I’d do. Celexa seems to be a winner for a lot of people here as it was for me years ago.

S

22

I live in south Los Angeles. I have HMO, so not sure how easily I can see just any doctor. I have spent so much money the last two years, I’d hate to spend more out of pocket.

Busy patterns still do bother me and I think VRT is still helping with that as well as my “off” head movements.

How would I know if a drug was working exactly? The only symptoms I have are the brain fog (which I still attribute to vestibular loss, not migraine) and the problem with lights. Light does not make me dizzy whatsoever, is just uncomfortable. If a drug worked, would I just feel better in sun light?

Regarding my problems in sunlight, besides it being hard to keep eyes open, I have the vitreous floaters. The thing about the floaters, the Opth and Neuropth could find no sign of any floaters whatsoever. Said my eyes were perfect. The other problem is Scheerer’s Phenomenon

http://www.migraine-aura.org/content/e27891/e27265/e42285/e42442/e54887/index_en.html

They say that this in normal and natural, but not at the rate I see it. It’s all over the sky any time I look. It is all over bright surfaces in the sun as well. I can even see it on the TV now when a bright white screen shows. Luckily I do not see this on the computer screen. I have yet to find any link to this and migraine though, as everything says it is natural.

23

God, I could sure use a drink tonight…

24

How does an SSRI like Celexa help with migraines though?

25

One other thing I have had since coming off the Nort is extreme dehydration.

If I have mentioned this vision problems and dehydration to the Opth and Neuropth, how come they do not bring up migraines? I specificlly asked the Neuropth about migraines and she said these symptoms were not really a part of it…

26

I still want a doctor that will take into account my VN damage. Doctors like this are hard to find on an HMO!

I wouldnt worry whether the Neuro takes into account your VN. Focus on treating the migraine, and you will feel significantly better after finding the right med. If symptoms linger after migraine control, then revisit your VRT therapist, as this area is her expertise. Since there are likely 2 different problems compounding this mess (VN + migraine), it makes sense to involve 2 different experts, correct?

VN alone will NOT cause chronic migraine-like symptoms for years. And the fact you had a migraine aura superceeds everything. Aura is NOT caused by VN, Nortriptyline damaging the CNS, etc… It can only be caused by migraine, which happens to also be the clearest explanation for everything else you experience.

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?

I have already told you, I have MAV, and I feel the exact same everyday regardless of what I do. Nothing impacts my symptoms, not even lots of caffeine, which is one of the more potent triggers for migraine.

I am listening. What do I do next?

As the general consensus has echoed, avoid migraine triggers AND get on another medication. There are probably about 100 meds with migraine preventative properties, try a different medication. Many people here have gone through several med trials before finding the right one. Scott suggested an SSRI, I feel that this would be a great choice.

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

It depends on what you classify as an afterimage. Could you explain?

27

I’d never heard of Scheerer’s phenomenon. Interesting. I get what appears to be visual snow sometimes but it may be Scheerer’s phenomenon. At any rate I don’t pay it much attention so don’t particularly care.

Re the head fog. I get head fog when I’ve consumed a trigger. For years I had this going on until I weeded out the offenders. Others here with head fog have seen it vanish on meds. Read Nicholas Silver’s papers on this. When migraine is sorted you should feel nice and clear in the head.

You’re in very good luck. You live in LA. Guess who is arguably the top guru is in the world on this? Robert Baloh and he works at UCLA. Go see him and all of your questions will be answered and you’ll be satisfied. His current favourite med for MAV is Celexa, up to 40 mg. How it works is not completely clear. Read the paper here in the archive on MARD. That might shed more light on this for you.

S

28

Best way to describe is if I look at a bright source, then close my eyes, the image stays awhile. I know this is somewhat normal, but mine has been way more pronounced since my attacks started two years ago. I will also see them when eyes are open. Hard to explain, but like I am at home and am looking at the TV and the clock above it, I can kinda see traces of their shape a few inches to the right or left. The image I see if kinda of like a shadow, but whitish purple. Not exact image, maybe like a negative. I also see it when I close my eyes for a few seconds. This really gets heightened when I am doing VRT, like VOR 1 exercises where I am working on my gaze stability.

I saw Dr. Baloh at about month 4 into my problem. He was very quick to dismiss any ear problems and may have mentioned migraine. At the time I think I was already on the Nort, so he might have already been leaning toward migraines…

I know I most likely will not be able to see him again. Would it be safe if I started Celexa through my GP? How does one start and monitor starting a new drug like that?

29

Since some of you seem to have this under control, is this just something you have to live with the rest of your life? Scott, it seems like you still have symptoms. You just live with it? Will you always have to live as a migraineur?

30

Also, it is safe to say I do NOT have MAV, since I have no dizziness right?

31

How would I know if a drug was working exactly? The only symptoms I have are the brain fog (which I still attribute to vestibular loss, not migraine) and the problem with lights. Light does not make me dizzy whatsoever, is just uncomfortable. If a drug worked, would I just feel better in sun light?

You will know when a drug works when all or some of your symptoms lessen in intensity, or vanish altogether.

Brain fog is found in almost every single case of MAV, along with most other presentations of migraine. If VN caused head fog, it would be during the initial acute attack, and during the compensation period, and a compensation period is relatively short (just a months).

Im not surprised that light just makes you uncomfortable, its because your brain is currently more sensitive to stimuli. If you find a treatment that works for your migraine, then this symptom will probably vanish.

32

Using any drug now just scares me because the last time I used one I ended up with all these vision problems. Does that make sense?

33

Best way to describe is if I look at a bright source, then close my eyes, the image stays awhile. I know this is somewhat normal, but mine has been way more pronounced since my attacks started two years ago. I will also see them when eyes are open. Hard to explain, but like I am at home and am looking at the TV and the clock above it, I can kinda see traces of their shape a few inches to the right or left. The image I see if kinda of like a shadow, but whitish purple. Not exact image, maybe like a negative. I also see it when I close my eyes for a few seconds. This really gets heightened when I am doing VRT, like VOR 1 exercises where I am working on my gaze stability.

I’d say that this is a stronger response than normal. I believe this could be explained by migraine.

I know I most likely will not be able to see him again. Would it be safe if I started Celexa through my GP? How does one start and monitor starting a new drug like that?

It would be safe to get Celexa through your GP, but just make sure you follow the proper titration. I believe its best to start at 5-10mg and stay there for 6 weeks, and increase the dose another 5-10mg if you dont feel improvement by that time. You may notice a few med side effects, but they will likely disappear after a week or two. If the side effects become intolerable at the starting dose, quit immediately.

34

— Begin quote from “awalkerphoenix”

I saw Dr. Baloh at about month 4 into my problem. He was very quick to dismiss any ear problems and may have mentioned migraine. At the time I think I was already on the Nort, so he might have already been leaning toward migraines…

I know I most likely will not be able to see him again. Would it be safe if I started Celexa through my GP? How does one start and monitor starting a new drug like that?

— End quote

So you saw Baloh, he told you to dismiss the caloric result, that you most likely are dealing with migraine and you’re still not convinced? Dude, he has spent a lifetime researching migraine and its variants. He heads up some of the best genetic studies into this worldwide.

He told you to dismiss the inner ear bit because he knows that it does not account for feeling bad for years. The brain compensated and you have seen this with VRT. The thing is you may have had benefits from Nori! Can you honestly see the wood for the trees here? Lots going on at the same time and you may be falling prey to a selective memory.

Is it not possible that Nori was in fact working?

You do not need to see Baloh again and he would say the same thing to you. Find the results of your visit with him and get back to us on what you were on at the time and exactly what he said. This is where you should start. From there, and assuming Baloh thought it was migraine, get onto a new treatment and do the migraine lifestyle with it. Celexa is a good next stop.

Consider that all you have been telling yourself about Nori may be incorrect based on the facts and evidence of migraine and Nori treatment and not in the way it seems like things happened to you in your mind (i.e. that it made you worse).

I have MAV under control most of the time. When I don’t it’s almost always my own fault for falling off the wagon. I also don’t tolerate meds well but I have found a recipe that works for me: SSRI, benzo, lifestyle and a B vit drink mix. Migraine still smoulders away in the background at a very low level and I have a few residual problems still from the VN attack of 2003. Nothing that bugs me too much though being unable to play guitar really annoys the hell out of me.

S

35

Things like this scare me…like things could actually get worse.

http://www.migraine-aura.org/content/e27891/e27265/e42285/e42442/e42449/index_en.html

36

Well, I think your timeline was a little off…

I saw Baloh in July, VN hit in March. I already had testing done twice that showed the very large deficit. I had not even tried VRT yet. VRT started about 6 months AFTER the Baloh visit. What I didn’t get about the visit with him was that he dismissed the ear problem all together. Three months into it, I know it still was an ear problem. If I had shown no ear damage, that would have been one thing, but I showed such a large loss, I knew that it could not be dismissed. When they did the calorics test on me, I didn’t even respond. Even when they did it with ice water, something they only try in rare, extreme cases. That is not normal. I am not saying he is not right, just that at the time he didn’t even mention the VN which must have been playing a huge part of it. It wasn’t years later, this was just three months into it.

I was on the Nort for 9 months and nothing improved. Granted, I was not doing the extensive VRT with a well trained PT (I was stuck with a girl at the hospital who knew very little). When I started the good VRT, I started weening off the Nori thinking that the VRT was working, and it was, and that migraine was not my problem.

I had no trouble with sunlight before the Nori, and no problem with it while on the Nori. But I can tell you the Nori did not help the brain fog at all, unless of course I still had the fog from the VN. This is the main reason I stopped the Nori. In this case, I do not know if it was helping at all. When I called the Neuoroto to get off the Nori, he said that if nothing had improved yet, it probably wasn’t going to on that drug.

I will try to scan the write up from Baloh. Is there a way to upload onto the forum?

At this time, I could try to get that doctor to prescribe Nori, or maybe get on Celexa. Either way, unless my GP does it, it will take awhile because I work so much…

37

— Begin quote from “awalkerphoenix”

Things like this scare me…like things could actually get worse.

http://www.migraine-aura.org/content/e27891/e27265/e42285/e42442/e42449/index_en.html

— End quote

How about this. Better not take aspirin ever again either.

[size=130]Aspirin kills 400% more people than H1N1 swine flu[/size]

http://www.naturalnews.com/027548_swine_flu_vaccines_death_risk.html#ixzz1kj7SBbYB

Interesting statistic but don’t read the rest of the article. Mike Adams is a certified loon of the highest order. Quack central.

S

38

I saw Baloh in July, VN hit in March. I already had testing done twice that showed the very large deficit. I had not even tried VRT yet. VRT started about 6 months AFTER the Baloh visit. What I didn’t get about the visit with him was that he dismissed the ear problem all together. Three months into it, I know it still was an ear problem.

He did not care much because Baloh knows that most people who catch VN or labs are over it in about 6-8 weeks deficit or not. A non-migraineur usually recovers relatively quickly. It is the migraineur who ends up sitting in the specialists seat suffering months later with no real resolution of symptoms. Again, you’re focussing on this deficit again which was measured by a very crude test anyway – the caloric. Everyone scores a deficit on that test and it is not to be taken on board unless greater than 30%. Why are you so certain that VN was playing a “large part of it” despite Baloh disagreeing? Just because the caloric said there was a large deficit?

I was on the Nort for 9 months and nothing improved. Granted, I was not doing the extensive VRT with a well trained PT (I was stuck with a girl at the hospital who knew very little). When I started the good VRT, I started weening off the Nori thinking that the VRT was working, and it was, and that migraine was not my problem.

So you were on Nori and doing VRT and started feeling better? So how do you know again that it wasn’t Nori? sounds to me like the shit hit the fan again when you came off Nori.

I will try to scan the write up from Baloh. Is there a way to upload onto the forum?

Best to email it to me and I’ll upload it de-identified.

At this time, I could try to get that doctor to prescribe Nori, or maybe get on Celexa. Either way, unless my GP does it, it will take awhile because I work so much.

Ask your doc for Celexa and start on 5 mg under his supervision.

S

39

I was already coming off the Nori when the VRT started.

I understand that calorics test is crude, but I did have it three times, in three facilities. All three showed 73% loss, and the one, after the ice calorics test, thought a possible 91%. Migraines or not, that is a very large loss. Everyone may score a deficit, but not by that much, on three tests. Complete loss is actually better because there are no mixed signals coming into the brain. I saw Baloh a year and a half ago and do not recall exactly what he said. In the current analyses I have from him it does not give a Dx. For some reason I cannot find his original write up, and when I asked for it from UCLA they sent me this one I currently have which is not as detailed. I will reach out to them again to see if they have the other one. I don’t feel the Nori was working because the head fog and difficulty with light never improved. What did improve and has improved with VRT is my balance and my eye gaze. As my eye gaze stability has improved, it is still off, so I have no fully compensated. I have studied vestibular dysfunction extensively, and these are signs of vestibular dysfunction, not MAV or migraines. I’d be more than happy to supply all of my tests results so you don’t think I am just stuck on the dysfunction. I had many abnormalities on my test results, ones that would not show up on someone just suffering from migraines. Yes, perhaps the damage has led to migraines, but you cannot ignore the test results and the damage that was done.

I will for sure ask the doctor about Celexa. I’m sure she will wonder how I came to that conclusion, but hopefully she will just take my word on it.

One more thing, when I came off the Nori, ever since I have been severely dehydrated. this is another symptom I put off on AD withdrawal. I know dehydration can cause migraines, but can migraines cause dehydration?

40

I was on Nort for 8 weeks, and I felt it wasn’t helping so I weaned off of it. I was on 50 mg. a day and I noticed during the weaning off stages, my balance/dizziness were completley resolved for a short period of time. It wasn’t until I was completely off nort for about 4 days when the dizziness came crashing back.

My point is, is that I’ve heard when someone is in the weaning stages of a med, they’re symptoms seem to go away or lessen. In my case, all my symptoms came back when I was completely off the nort. I then was told that I was probably on too high of a dose of nort all this time. Perhaps a lower dose would have kept my symptoms at bay. Too much nort or too little nort will be ineffective. With Nort, you have to find that small theraputic window. I was told this from another member on this board nearly 2 years ago. Maybe a smaller dose of Nort would do the trick for you.

At 75 mg.-No improvement, when you started dropping your dosage-you started to notice improvement, When you were completely off it-other migraine symptoms started showing up. Your window could be somewhere around 35-40mg. I’d give Nort another try at a smaller dose if I were you. Or try Celexa. Just a thought.

Greg