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.
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.
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.
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”.
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.
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.