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Dr Nicholas Silver talk: Migraine Action AGM 2009

#1

Hi All,

This is a very good talk all about migraine by Dr Nicholas Silver that I had to draw your attention to. Thanks to Hannah for finding it! This fellow deals with patients who have already been through a number of neurologists and have failed to gain migraine control. Many of you here will identify with what this Dr has to say and also relate with the way he describes the lack of migraine knowledge among many GPs and specialists. He gets that this is genetic, can be chronic, and that it causes dizziness and vertigo and all the other freaky symptoms we experience. I agree with him that there is no such thing as tension-type headache capable of creating terrible pain. News to me about the IHS and this classification they created. He also says interesting things about chronic fatigue and fibro – more likely migraine-based.

He mentions eliminating caffeine of all kinds and using pain killers VERY RARELY (1 hour mark in this recording). This part is very interesting. I am guilty of painkiller overuse and plan on dumping them after hearing this. I also slip in the odd bit of caffeine (not coffee) here and there which has to stop.

This talk is long and is more like a discussion with a group of friends but he hits so many good topics and explains how migraine can be behind most of this garbage. The main discussion on migraine begins at about 26 min but I’d recommend hearing all of it if you can.

Interestingly, he says that a person is a chronic case if they do not experience days of feeling absolutely crystal clear on more than 15 days a week. How many of you guys feel like crystal more than 15 days? I know I don’t.

Attached too is the handout from the lecture.

Recording here. Download and listen using VLC if you have any trouble:

mvertigo.org/audio/Nicholas_AGM_2009.mp3

Handout:

mvertigo.org/articles/Nicholas_migraine.pdf

Scott :slight_smile:

#2

Scott, I never feel crystal clear for a moment, let alone 15 days! There is always something going on, even on the best of days.

I tried giving up the painkillers for 3 months, twice, and it was the same both times. Less pain in the head, more dizziness, that was what it was for me, it might be different for someone else.

Christine

#3

Thanks Scott. I look forward to reading/listening to this.

I have had literal moments, and I think a few weeks ago I had a couple of hours (wow) where my head cleared up enough that I felt normal. I think our normal feels like when others get feeling badly…rare and noticeable…

TOday is the day I allow myself Klonapin …sad to say I really look forward to my K days, because I feel so much better. Yet, because I worry about tolerance/dependance, I ration it out like food on a deserted island.

Hoping everyone is having a decent day out there!!

Kelley

#4

Thanks for posting this info Scott - very interesting. I haven’t had a chance to watch the clip but did read the paper. Comments as follows.

In general, what I have struggled with (and continue with) is recognising that my (vast array of ) symptoms are migraineous. Ever since I started getting migraines as a teenager they followed the same script with relentless predictability. Feel nervous, edgy and “fluttery” for a few minutes, vision feels “wonky” for a few minutes then the aura (scintillating scotoma) hits combined with horrible panicked feeling. After about half an hour or so that passes and I feel like I’ve been hit by a truck for a few hours and the next day I feel “hung over”.

Well, for at least the last 10 years I’ve had an astonishing array of new symptoms ranging from a few seconds’ duration to months at a time. The severity has ranged from mere discomfort to being confined to my bed (for weeks at a time). And they are wild and wacky. Feelings of electrical pulses (zaps), confusion, brain fog, inability to find the right words, hearing distortion, tactile distortion (including numbness and tingling), anxiety, restlessness, agitation, mood changes, food cravings, upset stomach, disassociation and derealisation, generally feeling very unwell and of course our old friend vertigo (rocking/falling).

So, Silver’s paper covers a lot of these symptoms but not all.

Vertigo
He talks of dizziness and a sense of imbalance almost interchangably. I think most of us on this board would make a finer distinction than that. I agree with his take on dizziness - that it is a spaced out, derealisation kind of thing. I also agree with his description of visual stimuli which make us uncomfortable (overhead fans, flickering lights, stripes, crowds etc). The vertigo though I believe most of us feel quite clearly that it is a sense of rocking, falling, wonky shopping trolley list, staggering on a boat, squishy floors etc. I know for Dr Halmagyi for example that this rocking sensatin is a key indicator of MAV.

Headache
He confuses me a bit with his discussion of headache. At various points he states that migraine can manifest (and cause severe disability) without headache. He does go on to point out that headache can also include eye and face pain. I do relate to this. I rarely get “headaches” in the way we normally think about them but do sometimes get nasty face pain and pain behind my eye(s), usually the right eye (which is the eye I experience my auras). I would have liked him to define more vigorously that “headache” includes all those other type of face/head/neck pain he mentions and that therefore whenever he uses the word “headache” it include all these different types.

Restlessness
I really liked that he pointed out the “patients almost always experience a feeling of intense agitation and restlessness”. This is not “always” true for me but, during chronic periods it often has been. I’d describe it as feeling like I can’t sit still, jumpy, nervous, feel like I want to crawl out of my own skin and that my skull is contracting while my brain is expanding.

The crystal clear days
What the hell is he talking about here?? During my chronic periods I might have had one day here or there which was “less bad” (even quite significantly less bad) but never “brilliantly crystal clear”.

Nasal decongestants
I am a chronic user of these. I am FULLY aware of the rebound effect when using for more than 3 days straight but even when I have managed to go cold turkey and get off them, after a period of a few weeks I get stuffy again and have to use them. I’ve been tested for all sorts of allergies with no luck and even had a medicated spray for a while (which was OK to use all the time) but which didn’t help. He doesn’t go into the “stuffy nose” symptom too much but am I right in thinking he’s suggesting it’s a migraine symptom? And is that why he says to abruptly stop using it?? Confused about this.

Detoxification
He advocates cutting out all caffeine but it seems that this relates only to headache symptoms. To those of us with little or no headache (definition including face, eye pain etc) is there any benefit to this? And I think our straw polling on this forum indicates roughly only a third get relief from dietry/lifestyle modifications.

In closing and in general I do think the article is very good. I wish the messages would get out to more specialists and GPs.

Vic

#5

Hey Vic,

I can’t remember if it was on the recording or in the paper but he does say that caffeine and painkillers can keep non-headache chronic sysmptoms going. I’ll dig it out later. Sure I read that.

I was wondering today if there is any point in even using the words “migraine associated vertigo”. We might as well say “migraine associated headache” or “migraine associated spaced out”. All of it is migraine-based. Putting a vertigo tag on it seems even more crazy when you consider that vertigo and dizziness according to Baloh is the second most common manifestaion of migraine after headache. It’s like isolating the cold virus and saying not only does it give you a sore throat but it also makes your nose run. But I guess we have to because most people on this planet assume migraine is just a headache.

Scott

#6

Hey Scott,

I agree with you about the MAV tag. Halmagyi for example never used it with me, he just said “it’s migraine”. When I asked him if it was MAV he said “yes” but seemed equal parts impressed that I’d heard of it but frustrated that it has its own name, because as you say it’s a symptom, not a variant.

I suspect Halmagyi just uses the word migraine for two reasons - 1) to make it easty for patients to understand their diagnosis as most patients won’t be aware of MAV, but they do know about migraine and 2) for the reasons you’ve said - it’s making a distinction where there really isn’t one.

The problem though is that as we all know only too well, most doctors, let alone the community at large think that migraine=headache, so they need it spelt out for them that there is a type of vertigo which results from migraine, rather than some other condition. What REALLY needs to happen is broad education about what migraine is. I don’t think it serves anyone by the misunderstanding that it is headache. I think this restrictive understanding is one of the reasons a lot of people don’t know they have migraine and a lot of doctors don’t know to diagnose us without a headache. So frustrating.

The caffeine thing is contradictory. It’s also used to treat migraine isn’t it? Confusion…oh melliflous confusion :wink:

#7

Well said mellifluous one. Got any spare flocculent jumpers hanging around?

I think if one finds themself in a “chronic” migraine state, that is, constant symptoms of low grade headache or always spaced out or always dizzy etc (like most of us here) then you are supposed to dump coffee and painkillers completely to stop the chronicity of it all. If, on the other hand, you are one of the lucky ones and only get a headache or dizz spell once in a blue moon and a coffee makes it all better then why not?

I never really thought I overused painkillers because I assumed overuse meant daily use and that ibuprofen did not produce rebound. Pretty sure Buchholz said that. But I certainly use them weekly, every week, and this is worth chasing up if Silver says to dump it. Consider it dumped.

Scott

#8

Scott:

Very good Read…Newman actually told me the same thing…If you have some Migraine symptoms at LEAST 15 days a month it is considered Chronic… As far as cutting things out, he is against pain killers for Chronic but he and all my doctors have me taking a low dosage of Klonopin as part of the treatment for both MAV anbd Menieres. Coffe he said each individual is different. I have cut my caffeine to half by having half Decafe but I need some in the AM to get focused. I am pretty good with everything else. I am seeing a nutritionist for the menieres this week.

#9

Wow, this is a really good read. I read through the article thinking, yup that’s me, yup thats me… I just cannot emphasize how relieved I am and continue to be that after 12 years of this crap I have finally found an answer. Besides being dizzy I have had so many of the other symptoms (tingling in legs, etc). I was really starting to think I was just as crazy as all the doctors thought. Now, however, I have my migraine specialist and this wonderful site that is a powerhouse of information! Thank you!

#10

Hey Amy,

Glad it’s helped you out like that. as I read this paper, I could check off every single box as though he was talking about me personally. Everything applied except the restless leg and skin crawling on the scalp. Even after all these years and having trawled through a pile of literature, it is very nice to read something like this that fits the picture we see here among members so well.

Howie – given this guy is the LAST stop for chronic migraineurs when other neuros and all else fails, I think if I were you I’d seriously consider completely dumping caffeine. He makes it clear that caffeine and painkillers can cause the chronic garbage to continue even if a person is on a preventative. Once they stop those two things, the preventative kicks in properly and fully and stays that way. There was a study recently showing that it is a myth about the coffee drinker getting a boost from the morning drink (I’ll find it for you if you like). The boost you feel is because you are used to caffeine running through your veins and when it drops you need another hit. Once a person stops caffeine altogether, and goes through withdrawal, that jolt will no longer be needed and you will feel the same after being awake for a while. That’s what the evidence showed anyway.

Scott

#11

After listening to the mp3 file Scott uploaded, I think this doctor really knows what he is talking about. If he is right about the caffeine and pain meds, I will be feeling much better in a few weeks because I am giving up both entirely as he suggests. I know giving up caffeine for a while back in early 2008 played a big part in getting my vertigo under control. Unfortunately, my other symptoms continue. However, I have let caffeine slip back into my diet and I have used ibuprofin at least a few times a week and sometimes daily this entire time for mild/moderate headaches and muscle aches.

I guess the TMJ, neck injury, fibromyalgia, and sleep disorder tangents I’ve explored make sense, but it is good to get confirmation my miserable symptoms are primarily attributable to migraine. I’d rather have only one condition to fix.

I found the presentation I believe he used for the talk. Here it is: http://www.mvertigo.org/ppt/chronic_severe_headaches_BAHSHE.pps

I’ll let you know how my “detox” goes. I hope many of you are going to give it a try.

#12

Marci – excellent find. I’ll grab it later and add it to the mvertigo server.

Like you I have been dabbling in the odd painkiller here and there throughout any given week to combat the aches and pains I deal with – not just for headaches. We’ll see how it goes.

I’m finding 3 L of water a day to be too much for me. I was making toilet stops every hour! I’ve never needed much water anyway so will cut it down to about 2 L. By the time I got home last night the thought of another drink of water made me feel like throwing up!

#13

The water is the easy part for me. I tend to be thirsty a lot and try to drink at least 1/2 gallon a day. On the other hand, giving up caffeine has been a struggle for me, but I think it will be easier now that I have a better understanding of what it is doing to my brain. In the past I’ve used the excuse that it sometimes makes me feel better. Now I realize although I may not been experiencing withdrawal headaches, I very well could have been having withdrawal symptoms in the form of other migraine manifestations. The caffeine would improve those sometimes and other times it would send me over the edge.

I gave coffee up a few weeks ago for a few days and then started allowing myself a small cup each morning to get me going. I now know why that was a mistake. Today is day two without any caffeine. While it takes a while longer to get going in the morning, I don’t get the extreme energy dip in the afternoon I used to. I’ve known all along giving up coffee is the right thing to do, but I never knew just how important it is. Now that I have more logical support for the decision, I’m going to stick it out to see if it makes a real difference.

Something I’ve been doing lately to help me get going in the morning is taking a hot bath. It helps wake me up and helps ease the ache in my muscles. Also, I’ve always found hot water helps my head. I remember some of you are triggered by water on your head, but it helps me.

Chat with you soon…

#14

Yup, while I love lots of hot water on me in the morning shower, it’s a trigger if you can believe it. Amazing that it can feel so good yet it is setting off a headache attack all at the same time.

I’m having one of those days right now with lots of medium-level aches and pains everywhere. I didn’t have dinner until late last night and wonder if skipping my regular meal time did me in. Probably and coupled with a huge day on a computer. Anyway, right about now I’d be reaching for Aspro-clear and downing 500-1000 mg in a glass of water to take the edge off of everything. Instead, I’m just drinking water, getting out of my chair more frequently and stretching. Really hope this painkiller elimination thing is one thing that will make a difference for us.

#15

Oh Scott,
wow!
yes I’ve been saying many of these things for years.
As you know, for me it’s been a life time issue .
I feel clever after listening to this wonderful man.
Validated!
Now all I have to do is stop drinking tea and coffee, even though it’s always caffeine free, it isn’t worth it. :frowning:
I was ticking many/most boxes during this recording.
Thank you so much. I now have something for Mike (hubby) to listen to instead of me. :lol:
wonderful.

Vic, me too. I want my crystal clear days. Where are they?
Ripped off!

Crystal clear days
What the hell is he talking about here?? During my chronic periods I might have had one day here or there which was “less bad” (even quite significantly less bad) but never “brilliantly crystal clear”. :lol:

Also just wondering Why he didnt mention the migriane diet?

jen

#16

I would post but I must go and search my house to fine Nicholas Silver who MUST be living here somewhere or have a camera here (or in my head!) to describe my experience so well.

… except for the crystal clear days of course - what the heck are they?!!

#17

I haven’t watched the video yet so am just going off the paper but yeah, I have to wonder about these mythical crystal clear days - who are these people who have them, what are they on and where do I get it??

Marci, I have never heard of anyone having a hot bath in the morning to help them wake up. To me a hot bath is very much a night time indulgence, (particularly in winter) and it makes me sleepy. I do advise against it if you are planning on doing anything afterwards, it’s like being drunk. I drove my car once after a hot bath and ground down one side of it coming out of my own driveway. Too relaxed. Luckily I drive an old car so I just ripped off the trim dangling by a thread like a kid’s baby tooth and threw it in the boot. Still there I think.

What I find frustrating with all these experts is that they all seem to say the same things - up to a point. So, Silver is mad keen on the no caffeine, Bernstein is the diet (?) Hain is Topamax(?) and Halmagyi is Prothiaden, Rauch is a combo of meds and lifestyle. I may have mixed them up a bit but you see what I mean? I guess it’s all trial and error.

Scott, my jumpers are all way too flocculent. They all pill like mad. It’s a Country Road thing. They look nice for about a month but then, well, you may as well have gone shopping at KMart in the dark.

#18

Vic,

I think the great thing is we hear all of the slightly varied approaches from all of these docs but through our own experiences and those we here about on the forum it becomes clear (to me anyway) what the rules of thumb are for this. The only areas that are not clear-cut are the drugs. But we’ve always known that anyway. I’m just glad this guy puts into words what we’ve been talking about here for years. Finally – from a specialist.

I might draw up a “Chronic Migraine Survival Guide” soon for this site based on all the info. We could have it peer-reviewed right here on the site by everyone and I think it would be pretty damned accurate way to get this thing sorted.

#19

Hey Vic,

I found the video file to be much more enlightening than the paper. If I remember correctly, I believe he acknowledged there are some folks who rarely have crystal clear days and he believes this is perpetuated by the use of caffeine and pain meds. I haven’t had a truly crystal clear day in 3 years, but I’ve had a few that have come close. What I like about him is he seems to truly understand my (our?) form of migraine. As the others have mentioned, I feel like he was describing me during some points of the chronic migraine portion of the talk.

As for the hot bath, I am weird like that. Things that make most people tired tend to wake me up or at least keep me from sleeping, e.g. a bath, alcohol, narcotic pain meds, Nyquil, etc. I’m tired all the time, but I can’t seem to sleep worth a darn.

Hoping for a crystal clear day soon!

Marci

#20

Great talk!
It’s so good to have this forum where we can find things like this.

I am not taking any pain medication (only the preventative medication amitriptyline) and I’m avoiding anything with caffeine in it - have done so for a long time. So why can’t I get control over this MAV-thing? I guess what’s left is trying more preventative medications… (I have a prescription for propranolol, and will start taking it in a few weeks).

Anette