So basically, at 24, this it the rest of my life, huh?

Sites/forums like these are just so disheartening. They’re meant to help, I know, but all they do is suck the hope right out of you. I see so many members who joined this forum in 2004, 2005, 2006, and they’re still visiting the site in April 2014, asking the same desperate, unanswered questions they were a decade ago. Even people I’ve found that have posts dated 2010 or 2011 saying they’ve gotten better have just recently visited the site earlier this year, having relapsed or apparently not actually gotten better like they said they did. It seems to me everyone here is trying lifestyle changes, every medicine possible, alternative therapies, EVERYTHING, and they’ve still been miserable for years. What’s the point when nothing works?

I’m on 900mg of Gabapentin for a month now, and I just started a strict diet of only ACCEPTABLE organic vegetables, organic sea salt, and some ACCEPTABLE organic spices about a week ago. I know it won’t help, but I’m gonna try it for six weeks anyway to see if I feel better. Even so, what’s the point in living if I can’t do anything I used to enjoy - have a cup of coffee, go out and drink with my friends, enjoy food. I’d gladly give all this stuff up if I weren’t dizzy/off-balance anymore, but I have little hope a migraine diet will actually work. Guess I’ll know in six weeks.

And I know people say having a negative mindset makes it worse, but who cares? All the people saying that are still obviously dwelling on these forums, so they’re positive mindsets clearly aren’t helping much. This is hopeless. I don’t see the point in continuing when I have nothing but decades of constant misery, anxiety, and depression to look forward to. This is supposed to be the most productive period of my life, but I’m stuck at home, in bed, watching Netflix, 24/7, afraid to even stand up because I feel like I’m gonna fall on my ass. There is no hope for this. 90% of the posts on these forums confirm that.

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yup nick i have observed the same thing. i have been trying meds and vrt for 3.5 years and i got a million times worse with my balance- i would have been better off with no treatment at all. i went from walking on my own and being able to do basic tasks like laundry and grocery shopping to barely with a walker and headed for a wheelchair from the treatment. I can’t do anything I need help at this point I can barely stand up or take a shower. people seem to get better on meds but it never seems to last forever or that long term. my life ended at 26 i am 30 now. i am trying to accept that either i will be housebound and 100% disabled or kill myself those are my choices. sorry i know this is a harsh post but for me personally this has been my experience.

my drs. also gave me a lot of false hope only to completely cripple me from the treatment so even without this forum i would be hopeless. i also have severe chronic pain and anxiety depression and cant treat any of these without dizzy/balance getting worse.

have u tried any meds yet? i have to say though that i have been taking nortriptyline at the same dose for 2 yrs and it does help with a lot of my dizziness so it did improve my life that way. it doesnt help with the visual or balance stuff though. i expect that one day it will stop working it might have lost some effect already but im not sure. do u have any unsteadiness when u walk?

I know you probably didn’t consider this when you posted but your post sent a shock of panic through me and had me in tears. I’m only 41 and have three very young children. I got smacked with this in December.

My husband keeps reminding me that just like autism forums (our son was diagnosed with autism at age 2 and has overcome it through intensive therapy), that the people who are doing well don’t usually stick around. And, if they do well quickly they may never seek out a forum. Only a few of the people who have success stick around to offer hope. I do that on a few of the autism forums. I will pop in and out giving advice.

I refuse to give up. If I give up on me I am giving up on my kids and husband and I won’t do that. This is awful, no doubt about it. But it won’t kill me. I can’t still be a part of the lives of the people I love and that is what matters more than anything.

the people with the most severe symptoms are the ones who will hang out on a forum like this in general. honestly i was given a lot of false hope by my drs. and encouraged by all the success stories i saw on here and was made so much worse its terrifying. i wish i had been warned that i could get worse from treatment so that i could have at least weighed my options- no one warned me this was a possiblity. now i am 30 and looking into things like assisted living- if i had known i could have gotten worse i would probably have made different decisions. again i am an absolute worst case scenario super random case of this- my dr. has never seen someone get permanently worse like i did in his 20 yrs of practice. but again i am on a forum bc i am so bad off- the milder ones or the ones who get better arent on here, they are off living their lives hopefully.

What treatments made you worse? And do they know why?

vestibular rehab, topamax, savella, and atenolol, in that order. nope no one has any idea why i got worse but its too late anyway. i wouldnt worry about this happening to you my drs. have literallly never seen this before or read about it so the chance of it happening to you is extremely slim.

Sarah, have you explored other possibilities? Maybe it’s NOT MAV that you have after all. It’s always possible! You might be trying the wrong things for the wrong problem.

People get well.

http://mvertigo.cloudapp.net/t/success-stories/1104

S

I have been evaluated by about 6 neurotologists at this point and 1 regular neurologist. There dont seem to be any other available diagnoses. I have partially responded to nortriptyline and lyrica so part of this must be mav but it might not be the whole problem but no one else can figure it out. i was even treated for lyme with iv antibiotics for 3 months with no change in symptoms.

scott i think nick’s point was yes people on here post success stories, but if u look at their posts months and years later after these stories are posted, most people seem to have problems again. i have seen that so many times on here.

Yeah, that is kind of what was upsetting me. There’s a lot of success stories but it seems a good majority of those people end up coming back months of years later.

— Begin quote from "NickWatkins"

Yeah, that is kind of what was upsetting me. There’s a lot of success stories but it seems a good majority of those people end up coming back months of years later.

— End quote

Nick,
I hear you and can understand where you’re coming from (my MAV started at age 23, I had a lot of the same concerns about this being “for the rest of my life”). But I wouldn’t assume people visiting months or years later after posting success stories necessarily means they’re unwell; people visit for all sorts of reasons (I can think of one for example - wanting to stay current and hear about the latest research about VM/MAV; that’s one reason I visit, anyway).
I can tell you I am a whole lot better now, and can function way better now, than when I first came to this forum in 2012. I do still get bad days/weeks every now and then, but that is a significant improvement over the very bad months I used to have before. Why haven’t I posted a success story yet? I suppose I could, but I’m aiming for even more improvement.
I would encourage you not to give up - not to give you “false hope” but because keeping an open mind about things (within reason of course - i.e. safety first, etc.) by thinking “this treatment/lifestyle change/strategy might work, it might not,…but let’s give it a try and see”, and keeping track of what personally works/doesn’t work for you (and trying not to get too discouraged when something doesn’t work, and moving on to something else) can be very helpful.

Thank you. I appreciate the help. I always see these positive reinforcements but then I’m tempted to look at people’s personal pages and go through their past posts…you still seem quick sick with MAV as of this month. And then I see that you’ve posted about Lack of Friends/Loneliness only a few months ago, and I’m back to square one. I did see that you posted the article by Dr. Cherian - is that your neurologist? He’s mine. I saw him in January 2014 and that’s when he gave me my diagnosis. I’ve been on Gabapentin since then, but it’s not doing anything. I’m going back to see him May 20th. Hopefully he’ll prescribe Topamax next. Though it seems like the riskiest, it also seems like the most effective…though it seems like none of these meds are particularly effective at permanently combating MAV.

— Begin quote from "NickWatkins"

Thank you. I appreciate the help. I always see these positive reinforcements but then I’m tempted to look at people’s personal pages and go through their past posts…you still seem quick sick with MAV as of this month. And then I see that you’ve posted about Lack of Friends/Loneliness only a few months ago, and I’m back to square one. I did see that you posted the article by Dr. Cherian - is that your neurologist? He’s mine. I saw him in January 2014 and that’s when he gave me my diagnosis. I’ve been on Gabapentin since then, but it’s not doing anything. I’m going back to see him May 20th. Hopefully he’ll prescribe Topamax next. Though it seems like the riskiest, it also seems like the most effective…though it seems like none of these meds are particularly effective at permanently combating MAV.

— End quote

No problem. Yeah, I did have a bad week, last week…but this week has been better. Sorry if that post (the one you referred to) was depressing; but the causes of that actually go far beyond (and, in fact, preceded) VM/MAV (though VM does make it harder). While we all share some commonalities, everyone’s experience of VM/MAV (and in particular how it impacts someone’s life) is bound to be different, in the end. I was just venting back then…but I’m certainly nowhere near as miserable or lonely, currently. I’d say I’m doing fairly well, overall.
No, Dr. Cherian isn’t my neurologist. Glad you are seeing him, and that you have a diagnosis. Sorry Gabapentin isn’t working out for you. I’m also considering trying Topamax. If I were you, I’d go to the next appointment armed with all the questions I might have about Topamax (e.g. does starting out at the lowest dose possible reduce the risk of side effects?). Best of luck! I really hope you find something that helps you.

Nick,

There is so much I could say but I am going to keep it simple.

The road to wellness is not straight and always easy. In terms of MAV, it is a road of ups and downs, forward and back, sometimes around the same block what seems like 3 million times. It does not happen in days for some, but rather weeks, months or even years for many, but it can and DOES happen.

Like any disease, it has to be managed, through diet, lifestyle and possibly medication. It is not always perfect and that degree of wellness that occurs is defined by the individual that lives it.

I am a living, breathing FULLY functioning person with MAV. I have gotten well. There are scars. It took YEARS to get here but I never stop trying to get even better. Ever. Why? Because time has shown me that I can.

Tracy

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Thank you both so much. I’m about to cry right now because I actually feel a little bit hopeful again. Some days I just get so down I don’t even want to wake up. Every day, actually. I just want to feel normal again. But people do get better. I’m not even asking for one hundred percent all the time. I’ll take one hundred percent every other day! lol Or even 80 percent maybe every day? Anyway, this really does mean so much to me that you all took the time to respond when you didn’t have to. It’s been a bad, bad year. But I’m still early and there’s plenty of meds left to trial. I’m a week into a strict migraine diet of organic veggies, apples, water, and fresh, grass-fed beef and chicken. Hopefully that will have me feeling a little better before I even see Dr. Cherian again so I can let him know how it went.

Thank you, everyone, who took the time to respond to this. It was a particularly bad day.

Nick at the start of the journey lets be honest, it really sux! I thought I was going insane before I got my diagnosis, and then it took a number of months before I started to get better (with meds and lifestyle changes). At the beginning it was hard to imagine ever getting back to “normal”. And in some ways I haven’t, but I have a new normal that is pretty darn good. I’ve gone from being 30% all the time, not able to make plans, struggling with just getting through the day without anti-nausea tablets, to being 80-95% almost every day. I cycle, I’ve taken up jogging, I’ve travelled overseas, I work and I also study. I make plans without worrying if I will be able to get out of bed the next day (unimaginable 3 years ago).

I’m not going to lie, there are crap days when everything just comes together in the wrong way, and hey sometimes things are crap for several days or even a week if I’m really unlucky. It’s tedious but I try not to let it overwhelm me. And then things get better again. As others have said it’s important to remember that the people here for the most part are the ones that are still struggling, or are newly diagnosed, so it can seem like no one gets better - but we really do :smiley: . As Tracy said this is an ongoing condition for all of us that we need to find ways of managing. It will flare up, and there will be good times as well.

When things are bad sometimes or if I’m feeling down I pop in and just read some success stories to remind me.

Hang in there - things really can get better, and hopefully it won’t take too long for you to find a medication / lifestyle combination that helps you.

Gabrielle

I have gotten better and, mostly, stayed better. I won’t say that i’m a typical case. I don’t think I was as sick as some other people, and I was able to quite quickly identify that I had three, and pretty much only three, direct migraine triggers (intense anger, bright artificial light, and the rapidly flashing light from LCD/LED computer/TV displays using pulse-width modulation (PWM)).

I’ve been on 100mg of Topamax since late 2012 now, and I’d say that on any given day I’m anywhere from 85-100% (only down to 85% if I’ve really worked myself up or screwed my sleep up badly), depending on several factors. If I put myself in bad lighting situations for extended periods of time I still have some discomfort. And the Topamax has never stopped the migraines from either the anger or the flashing PWM lights so I have to avoid those two things like the plague. Also, the Topamax was giving me kidney stones until my urologist put me on a bunch of supplements that seemed to help take care of that incredibly annoying issue. But for the most part I live a completely normal life. Is it perfect? Hell no. Do I wish it would go away? Of course. But honestly, it affects me less than the absolutely terrible (untreated) allergies I had when I was a kid. So in the grand scheme of things I wish I wasn’t still sick, but I know it could be much worse. I hoped I could get off of the Topamax but at least for now I don’t seem to be able to

Now, because I got better I know that doesn’t mean you or anyone else will get better. I have no idea if we have the same situation and several people on this forum have theorized that there are several different classes of vestibular migraine issues that respond differently to different treatments. I belong to the group of people that get an intense rocking sensation from their migraines, similar to the symptoms of MdDS. Topamax seems to be the medicine that works the best for that group of people for whatever reason

So I didn’t post this to tell you you WOULD get better or anything like that. I just wanted you to know that I came to this board sick and looking for info, and a few years later I AM significantly better. I’m not perfect. I’m stuck taking medicine I don’t want to, and I’m not “cured”. The flip side is, I’ve made very few lifestyle adjustments at all, other than trying to always get at least 6 hours of sleep. I consider myself a success story. So there IS hope.

If you actually do have an issue that is being caused by migraines (very hard to diagnose correctly) then there ARE ways to suppress the migraines. But it is a slow trial and error process with migraine meds that requires more patience than you really want to have. You just have to keep trying stuff to find something that works, and you have to give each medication a while to see if it works. I was on Nortriptyline for months before we decided it was doing nothing for me, and It took a month for the Topamax to actually work. This stuff doesn’t happen overnight unfortunately.