Do the majority of people here have acute episodes in combination with their background constant dizziness? I have just had another one. I’ll be at my baseline dizziness and suddenly I’ll feel v.unwell, nauseous, extremely dizzy, light sensitive and almost a bit panicky/an impending sense of doom…this sounding familiar to anyone? The unpredictability is the hardest part!!!
How long do the attacks you’re talking about last?
Usually a few hours…I normally head to bed and try to sleep them off. Not sure if theyre are more classic form of migraine punctuating the constant dizziness!!! It’s the way the come out of the blue that gets me!!! The joys of being a migraineur!!
Hmm! Sound horrible…
Thankfully I don’t have attacks like that.
They do sound classical ‘migraine’ though as you say. I always get an eye aura for 20mins then a whacking headache, but not dizzy! - LOVE this complete nonsense
How often do you have them?
Urgh I know MM the things we go through with this! Ha ha Thai curry is so good! I nearly had one square of chocolate today after 5 months without it, thank god I didn’t given that this has happened!!
P.s. I used to wonder if they were a form of panic attack but I’m pretty sure they’re not as I don’t hyperventilate or shake and it’s a massive sudden increase in mav symptoms. I did wonder as Dr.S mentioned that the neuro anatomy of the migraine pathway runs through the nerves involved in fight or flight reactions. On another note I saw my gp today, to get more nori, she is really interested in mav and said she doesn’t see many cases but of those she has seen all the patients have fully recovered! Was nice to hear!!
Yes Lizzie I have those all the time like an attack on top of the dizziness I have had one long acute attack for the last 11 weeks. Before I would sometimes get them for a day sometimes a week or up to three weeks.
I know how you feel you get used to a certain level of dizziness so when its worse you cant cope well I cant xx
Thanks blondie, sounds like we suffer in exactly the same way! sometimes i can calm it all down or back to baseline by immediately lying down, drinking tons of water and having a snack…have u found that too
sorry whosthatchick i missed ur post!! all good news, bring on recovery for all of us!!
Lizzie it really or depends before my last big attack 11 weeks ago I could lie down and sleep and wake up lots better but then sometimes it would just last as long as it wanted till it burned itself out sometimes hours, days and weeks.
This time Ive got a new baseline well have had this new baseline 11 weeks when I had a huge attack a few weeks before I gave birth and now I really cant judge it and probably wont till this all calms down again X
I think Dr S refers to these attacks as ‘exacerbations’. He kept referring to ‘exacerbations’ at my appt. I was not quite sure whether he meant general fluctuations of feeling worse some days than others because for me I don’t seem to have these mini attacks, I have major ones. I had one at the start which kicked it all off and then another this summer. Basically for me it is weeks and weeks of going progressively worse each day until I am bed bound and then gradually improving in a non-linear way. It takes ages and seems like such a long process. It’s as if I enter a chronic migraine state which totally screws my vestibular system and then I have to to compensate again. I guess this disorder can manifest in many different ways and also can change over time…wonderful! x
Yes you’re right Jem. I think the patterns of symptoms differ for all of us. Dr. S said the same for me. My symptoms seen to fluctuate throughout a day but never get better than a baseline level and in addition I have these horrible sudden acute attacks. Dr. S said to me that the nori should stop the acute attcks, and that that is the initial goal of treatment. It hasn’t so far, it’s so disappointing as after upping the dose I had 4/5 weeks being MUCH worse but in the oast week/10 days I’ve been alot better, even had moments where I haven;t even been thinking about the dizziness which for me is a HUGE imrpovement, but last night I didn’t get to sleep until midnight, was a bit stressed and spent a few hours today working at a computer with no break and didn’t drink enough water and bang, acute attack!! Guess it’s a lesson not to let myself ever get complacent with managing triggers, but it’d be nice to be free to go to bed a little late!!! Living danerously hey!! Gone are the days of all nighters drinking and partying, seems very unfair at the age of only 31!!! xx
Hi, sorry you are struggling with this too. I def have ‘acute attacks.’ I get daily dizziness, some days good others not but then also wake up someimes with what I call an episode where I can’t move much without making the vertigo feeling (falling, turning, pushing to side etc) much worse. I find it hard to lay down when i get this as the sensation is terrible and it can last days before it gets back to baseline. Sometimes a week! But even then I am not ‘normal’ and go through a period of feeling heavy headed, funny in eyes etc until I compensate again? I can go months without an attack and attacks usually come on around my period. Lately I have had 2 attacks a month apart. I am about to see two specialists and will ask about the ‘attack’ cycle and report back here. I hope the nori really helps you.
Yes Lizzie I am 31 too and this struck me at 27! It is very young for us to have to give up our social lives. I know exactly how you feel xx
Thanks Aussie Girl, it’s nice to know others have the same type of acute thing going on alongside the normal dizziness, really hope we all have better days soon. Defo let me know what the specialist say too, that’d be fab. Ah Jem I can’t tell you how much I sympathise and have exactly the same feelings, sometimes it’s hard to believe we’ll ever be completely free to live life to the full again but I’m hoping we will all completely recover, it certainly seems that lots of people do so there is no reason why we can’t. I saw chatting about it to my GP today, her take on it is that once MAV hits, the brain learns new defective neural pathways and the meds will dampen symptoms until we re-learn normal balance mechanisms, granted she is not a specialist but always interesting to hear a medical professionals opinion…
Blah I was 23 life was over as I knew it and I was a party girl before Lizzie I like to think one day I could grow out of it wishful thinking on my part but you never know I know a few dizzys who have had it most their lives makes me very depressed at the ripe old age of 26!
I try not to think its forever the last three years have been such a battle 90% of the time can’t imagine this for the rest of my life gosh Im depressing myself again sorry!! LOL
Ah Blondie, I know how you feel, it is such a tough illness and such a fight as you say. I think everyone is different and more poeple improve significantly and get better than don’t. I think being as positive as possible helps. I think that if our brain and its pathways transformed one way and made us this way then they have the capacity to transform back and operate normally again. I guess it’s the timescale to recovery that is so hard as it’s variable and so long for most of us. I went through a really good 10 days and was feeling so positive and then wham got a major setback yesterday and am so washed out and groggy today now!!! It sucks. I think as time goes on there will be so much new research into migraine and preventitive treatments that we will all defo see a time when things are better. We’ll have to be party animal pensioners and make up for lost time!!! One of my best friends said to me recently that I should think of it in terms of writing off the next year or 2 to recover. I could die at 80 or 82, a few years isn’t much in the grand scheme of things, this sentiment helped me a bit, I’d been so deperate to get better that every week that passed where I wasn’t better made me more and more stressed. Once I let go of thinking I should be better by Christmas/next summer etc I felt better. I hope this all makes sense, only my thoughts on it. xxxx
Yes, i have these where i feel more imbalanced and my rocking vision and rocking vertigo is worse. It’s usually when i up my medication dose or before my period, or if i have eaten something bad - like a yellow thai curry, so delicious but so dizzy!
That’s great to hear - i’m hearing alot about recovery too! Also the fact that so many people have now no longer posted on this forum shows how many have recovered. It’s just a case of getting the right dose xx
Blondie - did you say you’d got better before but pregnancy brought the symptoms back? Just know it’s only a matter of time before your hormones calm again and you’re back to a better state x