I couldāve sworn I read somewhere that a migraine aura can precede or follow an episode, but I canāt find where. Can anyone help me out with this?
Bumped to see if anyone can comment on this?
I had a neurologist tell me that Iād had a single migraine that went on for over a week. Aura rolled thru throughout the week making it look like aura was happening in the beginning and at the end of the attack when really, it was just constantly trading places with other symptoms. It was, needless to say, one hell of a migraine.
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Woahā¦ what makes these aura go away? Can you describe the aura?
Page 9.
I never experienced aura until very recently. First time I think I did was the night after my brain MRI. At that point Iād had episodic MAV more than a decade and chronically for almost exactly one year. The bedroom lights appeared to double in number and to be doing some ghost-like dance for a good while then when I closed my eyes to get away from them I had alternating approaching and receding sheets of vivid colours floating towards me and away from me for about an hour. This happened several times during the attack. Never before the attack either in the middle or more or less at the end. Beautiful colours. Ghostly. But like the Northern Lights over Norway. Fantastic bright deep colours, yellow, purple, green. Donāt remember Red. It was really quite beautiful or would have been if it hadnāt kept me awake. Helen
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After reading what @Onandon03 posted below, do you think that it is possible that it was prodrome ā aura ā migraine ā postdrome? I have never heard of such a thing but it states (on page 9) each prodrome/migraine/postdrome can last hours to DAYS WOW are you kidding me? That means if you are someone who gets all 4 phases each migraine can properly go on for over a WEEK or beyond ?! GEEEZZZZ!
How prevalent do you think this is? For someone to legit go through 4 stages of āmigraineā process?? Iām sure this is not an easy question to answer ā¦ also, how common is it for some one to have say, JUST postdrome, or JUST aura?? Is this a thing??
Iāve a friend who has had Classic Migraine since a girl (inherited from her Dad). She has aura - always visual - and virtually always goes through the four stages every time. She averages once a week, nearly always wakes up in the early hours as they start and they rarely last more than the one day. One sister-in-law used to go through all the classic migraine stages (expect visual aura I think) and it took 4/5 days nearly always total. My attacks extended until they would last eight full days and nights every time then up to two weeks before it really settled. Wide variations. Helen
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Iām going to attempt an answer to your posts, but it needs to wait. MAV has total control today. Lucidity and eloquence arenāt in my skill set today.
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Helen, WOW, I have never heard of such a thing. I have so many questions, feel free to answer/ignore as you chose.
- How often do you get these āattacksā
- Are you able to describe your prodrome/postdrome
- Are you able to function during these attacks
- How do you get rid of them - during an attack
- Does your preventative help?
- Is this separate to your MAV ? - where dose typical migraines and MAV all fit in?
Now Iām confused. Wondering what you think VM/MAV really is. As far as I understand such vestibular attacks/migraine attacks whatever one calls them they are VM/MAV. That is it. Just some people experience contained episodic bouts for others it becomes 24/7 chronic, either that or the what were good bits between attacks just fill in with symptoms so you cannot tell the difference or only barely. That aside answers as best I can.
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How often? Originally when episodic, two or three a year maybe each lasting 72 hours virtually exactly. After over a decade they went to 8 days duration - not gradual, just sudden change. Then December 2014 went chronic with constant dizziness and episodic attacks. Similar frequency until 2015 when August onwards They became more or less back to back. I had 5/6 eight day attacks in a row with just a few days between each, maybe a week or two. No written records kept Iām afraid to be more certain.
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Not discernible. Never had aura at all until 2015.
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Absolutely not. With the episodic 72 hr attacks the vertigo was so bad I darenāt open my eyes or move my head. Constant vomiting and diarrhoea. Once chronic with dizziness and having the prolonged eight day version it would be such extreme head pressure I couldnāt lift my head off the pillow and unable to stand. No balance. None at all. Functioning was not an option. Couldnāt do anything. Watch screen, read. Nothing. Just lie down and still.
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Not sure what you mean? Get rid of what? Symptoms ? I couldnāt. Just lie perfectly still. Doctor gave me pills/injections to control nausea.
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Started Propranolol very late 2015 and I didnāt have another full-on attack until January 2019. Symptoms then were about 50% less severe than previously.
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Again. Donāt understand your question. These are Vestibular Migraine Attacks. This is It. All the other symptoms people have, VM associated, are some how linked to these basic attacks. As far as Iām aware Iāve never had a ātypical migraineā, ever. Helen
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Helen, thank you so much for your thoughtful response. I guess I only ask because it seems like various people only have the dizzy/visual/tinnitus types of symptoms but not the actual headaches (?). I thought there were your typical migraines (without those weird dizzy types symptoms) and the MAV was a separate type of migraine. This is a very confusing disease to say the least. I am going to have to study what you wrote above a bit more once work is over.
wow, for the entire 8 days?
do you know what brings on an attack?
Do you still have āattacksā? - you wrote you didnāt have another full-on attack until 1/2019, meaning you still get attack but they are just more muted/shorter?
As I said as far as I know Iāve never had a classic migraine. My attacks started straight off as vestibular migraine. Major symptom and initially only symptom severe room-spinning vertigo. For more than a decade I never knew that that was what they were called. My doctors told me it was BPPV. One doctor said it was Benign Recurrent Vertigo. Some consultants called MAV a migraine variant balance disorder. Most people who get migraine get the Classic Migraine which is self contained episodes with/without dizziness. Varies immensely. Both neurologists I saw said all my symptoms were āmigrainousā. Iāve read descriptions of vestibular migraine attacks on line and Iād say mine are pretty typical. If you read a description of a Basilar Migraine attack thatās much the same but also can also loss of speech, numbness, loss of consciousness and/or ability to think.
You may well find a lot of people just donāt happen to mention the headaches. They get so many itās sort of taken as read. Youād need a poll to be more sure. Many many people say the migraines they are used to and can cope with itās just the ādizzy/visual/tinnitusā long duration stuff that gets to them. Weāre a tough lot generally. I remember talking to one on here for about a year before he happened to mention he actually gets short migraines usually several times every day.
Yep. Thatās when the light sensitivity and sound sensitivity really kicks in too. Often Couldnāt even sip from a cup. Straw from a cup somebody else was holding lower than the bed. Symptoms would start to reduce perhaps end 6th/7th day onwards and once head pressure drops sufficiently I could stand up Iād keep trying to get up. Until eventually successful. With the earlier y2 hour attacks intensity was same start to finish and would start abruptly and stop the same. After 72 hours. I could also set a timer for recovery. Symptoms would just clear in few hours.
Not a clue. Most started approx. 48 hours after a meal out in a restaurant. One started 36 hours after long car journey, hospital visit and brain MRI.
Been looking around for Emilyās version. I know sheās written her attacks up somewhere here in great detail. This is nearest I found so far. Give you some idea til she can fill you in herself but isnāt the one I remember. From a thread āTypes of Dizzinessā Symptoms and dated 20th March. You should find other references under āBasilar migraineā.
This is Emily writing (not me)
QUOTE:
āMine go in this order though they overlap:
- Neck, shoulder, jaw and rear head stiffness, crunchiness and pain
1a. (Forgot this one) Hyperacusis to light, sound, smell and touch. Water burns like acid. - My regular visual snow becomes a blizzard with fireflies and voids
- Half blind
- Scintillating Scotoma
- Half deaf
- Tinnitus and all deaf
- Depersonalization and brain fog
- Lose feelings in hands progressing up arms
- Lose feelings in half of face and tongue
- Loss of speech and coherent thought. Instant insensate panic attack.
- Intense nausea and diarrhea
- Intense dizziness
- Pain
- All that in reverse followed by days of fatigue, dizziness and brain fog - often with numb hands.
Longest one lasted 5 days, went to the ER, got a migraine cocktail to bend but not break it. Acute MAV ever since. That was in Sept 17. The first time it drove me to the ER was 18 years agoā.
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I had a migraine before chronic MAV that lasted 7 days. It started with an aura a small moving circle in my vision then partial vision loss for 30 minutes. Then for 7 days the most painful heavy head and felt like I was rocking in a boat. I think it was brought on by paint fumes, my workplace had just been freshly painted and I was stuck in there with no ventilation
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Close enough. The full write up was last year sometime. Thanks, Helen.
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Todayās shitshow, much like yesterdayās, features 1, 1a, 2, 6, 7, 8, 9 and fatigue plus a distinct distaste for food. No pain or puking and I canāt decide if Iām dizzy or just failing to inhabit this space. Itās an a la carte sort of day. Yesterday was a leave the car in gear while parked and struggle to figure out why the auto lock wonāt let you exit the car sort of day. Yet another worrying example of extreme inattentiveness bordering on dementia.
You see @Bebop, MAV is an entire package deal. There donāt appear to be any rules.
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Confusion sorted now? Maybe?
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Helen,
I think the above and your latest update (personal diaries) definitely helped. I suppose I was confusing distinct āepisodesā and the 24/7 stuff. To organize, I guess some people experience episodes of āmigrainesā and then also have 24/7 issues on top of this.
It seems like this is true for my mom, like you, she seems to have prolonged āepisodesā that seems to go through a predrome-(aura?? maybe)-migraine-postdrome type of phases where during the predrome she has various symptoms (weakness, pins/needle, dizzy, head pressure, fatigue on and on and on) which then turns into a pounding/throbbing headache/migraine/head pressure type of feeling that then turns into kinda of further weakness, fatigue etc. but the intensity kind of ādies downā (?) Itās not exactly identical each time but I think it seems to follow this pattern and it takes a while to recover from these āepisodesā - but she doesnāt articulate her symptoms very well, so this is just from my observation. Then there seems to be the 24/7 stuff that happens in various frequencies, rocking, visual stuff, dizziness etc.
I could be wrong but that seems to be the best āorganizeā and/or āsimplifyā this disease state to me.
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I think you nailed it. 
Do you have many of these āacuteā episodes ? Or do you experience the 24/7 chronic symptoms only?