Functionality Confusion

HI everyone,
As I read through people’s posts, I find it so amazing how functional or dysfunctional we all can be with this condition. I, for one, can barely make it out of bed most days, just standing still I rock so much that it makes it impossible to to even the simplest of tasks each day. My head remains so heavy and filled with dizziness that walking around my house if incredibly uncomfortable. I am amazed that some people can work, take care of children, go on trips, etc. I was someone who had a very high tolerance for things (I was a triathlete and very busy professional sometimes working 36 hours straight) prior to my this condition overtaking my life. I am wondering if the people who can work or more functional than I am currently were ever in as bad shape as myself, or if others have as little functionality as I have described above. I am also starting to wonder if I will ever get my life or a portion of my life back in the future. I suppose I am reaching out for some hope.
Any thoughts are greatly appreciated.
Thank you and as always my best to all.
Lisa

— Begin quote from “MAVNY”

HI everyone,
As I read through people’s posts, I find it so amazing how functional or dysfunctional we all can be with this condition. I, for one, can barely make it out of bed most days, just standing still I rock so much that it makes it impossible to to even the simplest of tasks each day. My head remains so heavy and filled with dizziness that walking around my house if incredibly uncomfortable. I am amazed that some people can work, take care of children, go on trips, etc. I was someone who had a very high tolerance for things (I was a triathlete and very busy professional sometimes working 36 hours straight) prior to my this condition overtaking my life. I am wondering if the people who can work or more functional than I am currently were ever in as bad shape as myself, or if others have as little functionality as I have described above. I am also starting to wonder if I will ever get my life or a portion of my life back in the future. I suppose I am reaching out for some hope.
Any thoughts are greatly appreciated.
Thank you and as always my best to all.
Lisa

— End quote

Lisa

When this condition first hit me hard last July I was like you I could not even get out of the bed and do very simple things. It was awful…this last for almost three straight months until I changed my diet and alleviated everything on the migraine diet and I mean everything…plus I also reduced if not almost alleviated simple sugars. After about a month on the diet I started to see improvement. I also had some therapy during this time that helped only a small amount.

I have over the last year gotten to a point that I can do simple things again but I never push myself…never that scares me to think of going back to where I was last year.

I go to bed every night at 9:30 to 10:00 get up the same time every morning…even if I get tired during the day I try not to sleep so as not to break my sleep schedule.

I drink a lot of water everyday…and that is all I drink except for fruit juice.( and that has only been added lately)

I am very strict with the diet, I never cheat…it is not worth it to me…BTW I have not had a really bad headache in a very long time. STill have some of the other symptoms but they are better, much better than they were …I eat 5 to 6 very small meals each day…never a lot in one sitting that always makes my symptoms worse.

I try to get out for about 15 minutes at least everyday…that is hard sometimes but I try.

Even though I am better I do not work, nor do i think I could because I risk being able to control my environment. Loud noises, bright lights, perfumes and smells and other things that trigger my condition to be worse.

I have not idea how some folks with this are able to work, I know for many it is not an option …as it really was not for me we have just had to adjust …and adjust a lot.

I can tell you this time last year I was thinking the same as you…but it has gotten better but not normal, of course I am not on any medication as I tried a few and could not tolerate them so I have just fought my way to this point with a small dose of valium each day. Whether that suppresses some of this I am not sure but it seems to at least relax me …to be able to deal with the anxiety.

i guess what I am saying for me I am beyond where I was last year, though the sensations are there but at a much more manageable level…and I hope that you can at least get to that level too. Not sure you can work that 36 hours straight , but maybe at least you can get your life back to a different level of normal. That is what I have decided is that our normal may never be whatever was once our normal, but at least we can function in a new level of normal for those of us who suffer.

My best to you as you move forward, never give up trying to find a solution…and maybe one day there will be no need for u all to meet at this place except to tell our success stories.

Hello,

When I first became ill seven years ago, I was disabled by this illness and totally unable to work. It is unclear whether I had vestibular neuritis which triggered an underlying migraine condition and then became MAV, or whether I’ve simply had MAV all along. For the first year I was so ill I felt barely human. I had pea soup brain fog. I had constant symptoms in my ears. I had continuous vertigo when sitting or lying down - a sensation of being pushed or pulled round to one side. I was violently dizzy and disorientated all the time. I was able to go out, socialise etc… although it was often unpleasant and frequently o I was so tired and so ill I chose not to.

After 18 months I saw improvements. I did do VRT and don’t know if this helped or if it was simply the passage of time. I can’t remember the exact trajectory but after I was already improved, I started to take propanonol and although this didn’t cure me I think it makes things much better. After two and a half years I got back to work, I was still ill at first but gradually things got better and I started to experience periods of relative health combined with relapses. I now work full time in a very pressured job, although I work mostly from home which helps as I can choose at what points in the day I work. This would have been totally impossible when I first got ill. At the moment the pressure is very high and I am symptomatic all the time to a degree - but not in the way you describe. I have no vertigo and little dizziness currently and struggle mainly with intermittent brainfog and severe light sensitivity - if I am in the sun for much time I get dizzy.

A couple of months ago I had a huge relapse following a failed trial with effexor. I had to attend meetings with vertigo and dizzy off my head. It was hugely unpleasant and scary and if I had remained that way I don’t think I could have continued in this job. I was aware it was a relapse so just toughed it out and hoped the severe stage would subside, which it did.

I have to be very careful what I eat - chocolate and caffeine, cheese and alcohol are out. I can’t do heavy cardio exercise - although during good times I have been a gym member and have worked out certain things I can do - for example I can use the rowing machine and stationery bike, but can’t go on anything like a treadmill that moves under me, or anything that causes me to bounce up and down, for example a step machine. I suspect if I really worked out all foods that triggered this condition for me and stopped eating all of it, I could possibly be more improved than I am now. I have never had the patience or strength of will to go on the extreme elimination diet. I must get enough and very regular sleep, keep anxiety to a minimum, major anxiety will trigger this for me, no question. I also have to be very, very careful with the sun as I have severe photophobia and my condition can be triggered big time by sunlight. I never go in the sunlight without shades on.

I guess what I’m saying is that yes, it is possible to go from disabled to very functional. I live with this condition on a daily basis but I hold down a job with massive responsibilities which simply wouldn’t have been possible for the first two years of this. . I’m not saying it’s always easy, it isn’t but I manage. My heart goes out to you as I know the vertigo is extremely hard to function with.I don’t know where you are on the drug front but as you haven’t found something that controls your condition yet, I would suggest you definitely persevere on that front. I do believe propanolol helps me although it hasn’t cured me. What stops me trialing more drugs in the hope of finding one that eliminates this completely, is that I am working and can’t afford to be made worse by a drug currently. However the up side of the period where you can’t work is that it means you are at liberty to do the drug trials and hopefully hit on one that works.

Have hope, you will get there. During the first two years of this I often despaired and truly couldn’t believe it could go. Only a few weeks ago with the effexor related relapse I started to think I might be permanently disabled as the vertigo and dizziness were so severe. The amazing thing with this condition is that either drugs or time can suddenly make it subside as quickly as it hit. You can go from a vertiginous, foggy, dizzy off your head misery to fairly normal in a matter of hours. I have been sick as anything during relapses only to be pretty functional and back to my current baseline the next day. As severe and disabling as the symptoms are, it’s only a migraine in action. It feels like it has taken you over, is so much a part of you normalicy seems like an impossiblity. But stop the migraine you stop the symptoms. I know that is a tough nut to crack, but crack it, whether through diet, drugs, time or luck and you can be functional again.

Hang in there, one day you will look back on this terrible time as a horrible memory.

H

Hi Lisa,

My story is similar to Hannah’s in that I probably had VN to start which morphed into MAV. I was already a migraineur so it didn’t take much I guess. The early days of this were horrific for me. I never had rocking but the dizziness was extreme – the sort you feel if you were to jump off a merry-go-round. Anxiety levels were out of sight, just shocking stuff. It all persisted like that for a good 9 months until I took Cipramil from being in such deep despair, anxiety, and dizziness. I was certain I’d never be able to work again and definitely not on a computer.

These days I wax and wane between good days and bad and even on the bad ones I can still get through a day at work thankfully. Surprisingly, I am completely unmedicated now. On nothing and my headaches have been the lowest they’ve been in quite some time. However, I am walking on eggshells all the time. I’d only need to start running around and push myself and the entire house of cards would collapse.

There has to be a drug out there to give you a break Lisa. Where are you at currently with meds? Anything new planned?

So sorry to hear you’re having such a crappy time.

Scott

Thank you so much for everyone’s thoughtful and generous responses. It is so amazing the support this group provides and I appreciate hearing from people who unfortunately can understand this condition. I have been fighting these symptoms for over 18 months now and only 6 weeks ago did I finally get a diagnosis of MAV by Dr. Newman in NYC (same doc Howie sees). As far as my treatment, prior to this diagnosis I was taking 0.5 mg of clonazepam to act as a vestibular suppressant (which I am still on). It obviously has not done very much for me, but I am too afraid to stop anything at this point. Dr. Newman started me on verapamil 6 weeks ago. Unfortunately because of my small frame, athlete’s resting heart rate (low 40’s), and low blood pressure, we are only able to go up to 60 mg per day. I spoke to him a few days ago and told him how much I was suffering and he wants me to stay on the 60 mg one more month (total of 2 months) and then thought it was likely he would add zoloft (sertraline) after this trial. Is it possible that things might change in another month? The only symptoms verapamil has improved is the headaches, and at times the head heaviness, but the rocking and dysequilibrium are worse than ever.
Any input is so greatly apprectiated. THANK YOU!!!
Lisa

I’m afraid the - will a drug work - question is almost always impossible to answer. I have stayed on drugs for two to three months and then come off with no change. Then you get people like Richard who go through a tough time with a drug and then 3 months in or so it works.

The only drug that has ever done anything for me is propanolol. It’s great news that you’ve now got a diagnosis. I believe that is half the battle. you know what you’ve got now and can throw yourself in to tackling it. I can think of a number of people on this board who have been sick as anything, rocking 24/7 and desperate and they find a drug that works and their life is transformed. You need to use the strength and endurance you must have needed to work the hours you did and also to be a triathlete and use them to battle through this and give you the strength to keep trialing drugs. Believe you will get well, it will happen.

Have you changed your diet? Even if you only tackle it initially on the most minor level, it’s worth it, for example cutting caffeine can make a huge difference.

My heart goes out to you, I have been in a similar space to where you are now and it is wearing and frightening and harsh. You are not alone, so many of us know how you feel.

H

Just thought I would chime in there…

You can get better, although like most I was pretty disfunctional at the start and had to stop work for 4 months. I was still quite ill when I got back, but pushed on. That was almost 4 years ago. My major break was back in 06 where I trialled my 1st MAV med, Pizotifen, and it gradually cured my symptoms over an extended period of time ( I saw improvement after a few weeks). I was so well I came off the meds, but 8 months later had a relapse and have been ill since ( Pizo doesnt work this time).

Bizarrly I’m travelling the world, which is very hard at times as I tend to feel really ill & not sure I can keep going, but there comes a point where you have to push yourself to enjoy your life. I’ve given too much time to this illness. Yes it depresses me every day as I also suffer from chronic interstitial cystitis as well, but what can you do? I do think I’m mad the amount of boats, flights, elephants I have ridden on…makes me feel horrific!

I’m heading out to see Hain to see if he can sort me out. I’m really hoping I can feel better again - a 14 month relapse has been really shitty.

Just know I thought I would never be well - dont’t worry - you will be - just takes a long time sadly.

Luke

Thanks again for all the responses… Keep 'em coming:-) It really helps and does give me hope. I also appreciate the advice too.

Hannah, to answer your question about diet, yes, I have Buccholtz’s book and have eliminated everything except a a quarter cup of coffee in the morning (rest is decaf), equal, and tomatoes (this was a maybe food). I have not noticed any change or improvement and have been on the diet for about 2 months, but I will keep it going since it doesn’t affect my life either way. Plus, how much can you really enjoy food anyway, when you feel so horrible even trying to eat:-(

You guys are truly amazing and I hope to provide as much help to someone else in the near future when I can be a success (or somewhat success story too).

Lisa

— Begin quote from “MAVNY”

Thanks again for all the responses… Keep 'em coming:-) It really helps and does give me hope. I also appreciate the advice too.

Hannah, to answer your question about diet, yes, I have Buccholtz’s book and have eliminated everything except a a quarter cup of coffee in the morning (rest is decaf), equal, and tomatoes (this was a maybe food). I have not noticed any change or improvement and have been on the diet for about 2 months, but I will keep it going since it doesn’t affect my life either way. Plus, how much can you really enjoy food anyway, when you feel so horrible even trying to eat:-(

You guys are truly amazing and I hope to provide as much help to someone else in the near future when I can be a success (or somewhat success story too).

Lisa

— End quote

Lisa

Do you mean you use equal as a sweetner? I have heard that any of the sweetners can be a trigger for migraine. I

Have you ever tried Stevia which is a natural sweetner, which I use now instead of Splenda.

Yes, I use Equal. I don’t think it is a trigger because when I gave it up for a period I was just as bad as I am now. I don’t really think I have any food triggers… wish it were that simple:-(

— Begin quote from “MAVNY”

Yes, I use Equal. I don’t think it is a trigger because when I gave it up for a period I was just as bad as I am now. I don’t really think I have any food triggers… wish it were that simple:-(

— End quote

It took over three months for me to really see the difference with the diet…