I think we all want to feel normal. The trap is easy to fall in … just one glass of wine, or I don’t have time to exercise this week, I can have cake this time. MAV is a harsh task master. It reminds you what you are.
Really. I am surprised. Maybe they weren’t so afflicted as you in the first place. You had to come back up from zero balance. They didn’t. Hypothesis really. We cannot change skins with anybody else even if we wanted to. Helen
How very true!. " It reminds us what we are!!"Couldnt have put it better myself
This is very true I have to remind myself of where I’ve come from ! Thanks Helen just hard when all you want to do is feel 80% yourself again!
Thanks Emily il hold out for pitz doing more magic do you stick to the hyh diet ?
Good god, what does this mean for me, having had this for 23 years, 22 3/4 of them undiagnosed? Yikes. I don’t know that a chronic condition ever goes away, but symptom management that approaches 100% should be a goal. I personally feel that the 50% reduction in symptoms/frequency equalling success is garbage. No one would consider that a success in treating cancer or many other serious conditions. We should be able to expect more.
I do agree however I must say it’s has been 1 year for me so I think I expected a bit more of a result by now . Dr s says 70% in 9 months on meds so I guess that’s something to go by
I’m with you @lsengara but I think what Helen meant was this is why people need multiple meds . Or higher doses . Out of interest have you had it 247 for all that time ? I mean I’ve techinically had mav since I was 10 now 30. And was never on meds I think if you’ve had it 247 and badly for a long time it would take a while to fix or control . However if you were that bad I am sure you would seek medical help not just live with it
Yes, I think I was just venting a bit.
To answer the question, I’ve had acute episodic attacks for 23 years total (though after the first few, there was a 10- or 12-year period with none at all). My symptoms have been chronic (i.e. every day at varying degrees) for three years. For the first two years I just fought through it (many days the symptoms were only mild) and tried to live my life, though I knew there was something wrong. First raised it with my doctor a year ago and started the ruling-out process of tests for heart, ENT. Six months ago the symptoms worsened dramatically after I was hit by a car. Finally got a diagnosis three months ago.
I should also mention that my symptoms aren’t strictly 24/7; unless I am having an acute attack, I am usually fine at night when I’m in bed.
I get that we all need to vent with this rubbish
I def think the car accident massively affected your mav did you hurt your head at all?
Also did I hear correct when your lying down all symtoms disappear ? Mine lessen but the rocking is there and fuzzy head gosh this mav stuff is confusing lol
I don’t. None of the standard migraine diet stuff triggers me. Forms of sugar or easily broken down carbs are my nemesis. I feel about 50% better with strict ketosis and regular exercise. The rest is Effexor and a few migraine standard supplements.
It seems everyone has to find they’re magic formula but it’s a battle field to get there
I’m 45. Had MAV issues since I was a teenager, maybe forever. My personal belief is that MAV is a genetic defect that affects our neurochemistry and has wide ranging metabolic effects. Maybe it’s like my Vitamin D deficiency. I was wildly low but over time I filled the well and now I just need to keep it topped off. I don’t expect 100% or to never need meds. Like my other metabolic disorder, PCOS, I don’t expect a cure without gene therapy, which won’t happen in my lifetime. If I can create lifestyle changes and strategies, including meds, to let me achieve a functional, productive, and happy life at 85% of whatever normal seems to be, I’m good with that. It’s better than I’ve been.
It’s like having a Mounds bar. Eating a nut with it won’t make it into an Almond Joy, but it’s close.
Surely, you are working still so you must surely be pushing 80% or you wouldn’t be able to do that. You are been too hard on yourself I fear. As you are usually ultra fit, I suspect your 100% would be somebody elses’s 130%! They never have been that good. Temporarily at least you might have to lower your sights a bit. MAV’s a hard nut to crack.
Not long after posting the above up ‘popped this. More typical than 80% in six weeks, I’d say.
1 YEAR LATER
“I just wanted to give a quick update.
Im currently on 6mg of Pitz and 75mg of Nortryptyline, and I can definitely say that I’ve taken back control of my life.
Pitz has taken care of my Migraines while Nortryptyline has taken care of the Vertigo symptoms”.
Shouldn’t worry about it. I’ve had it 15 years next month, 12 years episodic, rest chronic and 18 months on best effective tolerated dose and I was more than 80% better until last Saturday when the Flu Bug ‘got’ me. I was really bad with MAV. Acute vertigo, room spinning type that lasted regularly 72 hours, sometimes much more longer, Then MAV went chronic: 24/7 chronic dizziness, off my legs weeks on end, light sensitivity couldn’t open a curtain or got outside without wraparound dark glasses even in the rain, and voila, Day Five of The Bug I just rocking today a bit but I done cleaning and cooked a full evening dinner without help. And I’ve certainly had more than 50% reduction across the board, good bit more.
Sorry. That is fact. I read it in many medical papers. Garbage to us MAVers it certainly seems, agreed, but they set the stakes that low I’m afraid. Surprised me first time I read it too. Helen
I really wouldn’t say I’m 80% at all , I work part time still and haven’t been able to go back to teaching classes. I battle through my job pretty much everyday always holding on to something to balance . All I do atm is work and rest as that’s all I can do . Yes I am fit but it actually hasn’t made a bit of difference with this mav rubbish it’s knocked me for 6. Not being able to drive far or walk by myself outside is definitely not 80%. I’m a very strong person I’ve worked even while having glandular fever but I’m miserable as I battle to get through my days atm rather than enjoy them that isn’t really living in my eyes. I have seen the below posted but can’t figure out is that a success story ?
I don’t think I’ll ever be “cured”. I just hope I can get to a stage where my smptoms are consistent and manageable and that on a good day I can almost forget and not notice any feeling of ear fullness or movement.
Dr S used the analogy of a piece of wood and a nail. If someone young sees him relatively quickly after the onset of symptoms then treating them likely would be like pulling out a nail that had just lightly been tapped in. They may be helped by just diet and VRT.Maybe six months of meds .
I’ve had MAV for over 20 years. Have had head traumas and motion sickness as a child, and am perimenopausal. Treating me is like pulling a really well driven in nail. A hard and long job. Yes, he did say 18 months plus of meds once we find the right one or combo and not to expect a smooth path.
Yes, when I was hit I was knocked about 10 feet and landed on my face: top teeth knocked out, lower teeth went right through my chin, blood and teeth all over the road. So that was definitely a big knock to my head. I suspect that all the dental procedures I had in the following couple of weeks may have contributed to the worsening of the migraine/VM: several times in the intervening months dental procedures have triggered acute migraine attacks.
Anyway, the event definitely upped my symptoms’ severity and now I am looking for time and meds to calm them down. Hopeful that I’m on the right track with Effexor XR; not quite two weeks in but I’m seeing some positives. My outside walking feels quite a bit better. I have a huge amount of physical recovery to accomplish and it will be much easier to do that with commitment and consistency if/when the migraine calms down.
i think the timeframe you are referring to is that the preventative drugs actually take 6-8 weeks to achieve their full effect; that doesn’t mean the effect is 100% better, it just means that until 6-8 weeks have passed, you don’t really know if they are working or not. a lot of preventatives are very slow burners. they might act quicker, but you can’t know if they are not working until such time has passed.
there are maybe a few people on the site who have been lucky and nailed it that quickly - but definitely not the majority.
i would expect after 6-8 weeks you should see a definite improvement on a drug, and if you don’t, you either need to go up on a higher dose, or try something else.
Hi, and thanks for the explanation. Agree entirely about timeframes for preventatives.
Bit of confusion here though I suspect.
Was not me talking. I was responding to something @Amylouise had written.
Certainly agree there. As I told @Amylouise I’ve read plp can expect results from Ami within four weeks and Propranolol (which I take) within six months. Personally I found Propranolol took longer than that to really kick in. There are obviously lots of factors involved. It was eight months on highest tolerated dose before the 24/7 dizziness started to stop with me. Not stopped but started to stop. Firstly like half a day at a time, then for increasingly longer time periods, as example,
If I had adhered to this I would have dumped Propranolol which now, after 18 months, has got me to 80%+. Progress does seem so individual and it seems, if one can believe what is written, drugs expected kick-in speed so varied, I suppose it’s impossible to make hard and fast rules much as we would like to. The trialling process can be so bothersome it would be good to have rigid guidelines to which to adhere. Perhaps where disappointment with progress occurs it’s best to go back to the medical provider who might have a better idea although, again from personal experience, I wouldn’t hold my breath. I expect Dr S would be one who could be relied on. Helen