MAV wins ... I quit

(Scott will recognize this if he reads it … because I told him this in an e-mail earlier … but now I’ve chosen to say this here…)

Everyone else here may be a bigger person than I, since no one here is willing to concede to MAV, but I … now resign myself to my ‘fate.’ Ironic that the brain that served me so well the first 27 years of my life has now become my own worst enemy, trapping me in an inescapable state of vertigo.

I don’t care how many more medicine trials there are. There’s no point wasting my time trying it. Neurontin is a joke, just like all the others have been, except the ones that just screwed me up more.

All of the symptomatic-relief meds have given up the ghost. Ativan (tried recently) does nothing. Same with Klonopin, Equanil and … now Valium. That was the only one that ever helped me and now it’s gone. It hasn’t worked the last 5 times I’ve tried it, at 10 mg. I tested an idea by getting a GABA supplement that actually passes the blood-brain barrier – PharmaGABA – and THAT didn’t work either. I only tried it once, but…

Either way, chalk one up to migraine. This disorder … I don’t know what we’re missing, that we can’t solve or understand it … and I don’t know how a brain can get so screwed up that a stupid migraine mechanism can create years of vertigo … but trying to stop it is about like an ant trying to stop a steamroller. And with that … I quit.

George, it’s difficult to know what to say. I don’t think you should be so hard on yourself though, this is a tough place to be in and has to be THE most difficult thing to take on board ever.

Your post made me think of what one of my first neurologists said to me. “You have to accept you have MAV. Acceptance is the key.” I was livid. I thought to myself, “No way. I’ll show him. I’ll beat this. Just wait and see.”

Many years down the line I still think of his comment. It’s been harder than I thought it would be and, maybe controversially, I can almost see the wisdom of his words. Depends how you define acceptance I guess.

I so get how you feel and I’m sorry you have reached this point. I wish I could think of something more helpful to say but I just can’t, except to repeat that I get where you’re at and that sometimes in the quitting and giving up the struggle we somehow find a hitherto undiscovered answer to the problem. Hope that doesn’t sound too irritatingly blase, considering how you’re feeling.

Wishing you the very best

Brenda

George, I am very curious to know what medications you have trialed. I see only a very small few medications mentioned in your post. There are HUNDREDS of medications. My MAV caused me to be bedbound and housebound for a long time. I am back to normal on topamax. I wouldnt have found that if I had given up after failing on klonopin, depakote, amitripyline, pamelor, and xanax. Dr. Hain told me he has NEVER seen a permenant case of migraine. NEVER. So why do you think you will be the first?? I know an MAV sufferer who was sick for 6 long years and is back to normal after trialing literally a DOZEN medications, and then finally found the right combo that did it. Sometimes its not one med that does it. Sometimes it’s two or three combined. Giving up is not an option. List what you have taken, and move onto the next trial. YES, the medications make everything worse because of the side-effects. I know. I know very well. Then take a break from all this, deal with your normal “base-line” MAV for a month or so, try your very best to contend with that as at least nothing will be worse than base-line, and then start anew. Someday, when you are well, and you WILL BE if you keep up the trialing, you will thank yourself that you pushed, and that you forced yourself through the fires of hell to find the right medication(s) that took this beast away!! These medications WILL help you if you will let them. This condition SUCKS, I know George. But giving up just means you are unwilling to continue the work necessary to get well. If you want to be well, you have to trial the meds. Have you tried the meds with the highest success rate: Effexor, Topamax, Verapamil? Pristique is a form of Effexor that is also getting great results I understand. These meds work George. There is no question that they work. You just have to go find what works for you. It’s hard. I suffered with side-effects the entire time on Topamax but i finally got what i wanted. I am now going on 18 months of peace. If you want that, you can have it. But giving up will not get you there, and you know it! Come on George, get back in this thing!!! You can get there sooner than you think!! Mav is winnable, in that the symptoms CAN be controlled. Dr. Hain has probably seen more MAV than any other doctor. He has never seen a “permanent” case, although time varies from person to person. I asked Dr. Hain if he thought I might be the first permenant case. He said no. He was right. George, I am telling you here and now that you will NOT BE THE FIRST CASE OF PERMENANT MAV AND VERTIGO but you have to keep up the good fight George!!! Take a break if you must but then get back to the trials. Also, stress, worry, and anxiety will only heighten your MAV. So will despair. I assure you of that. I am the king of that! Report back when you have started the next med. Every medication trial brings you one step closer to feeling better. I still have symptoms but they are really nothing much to talk about. MAV is not cured it is controlled. It also tends to lessen over time anyway but dont let time take its course George. Meet this thing head on!! Thats all I can really say to you here

Rich

George, I just want to clarify what I have written above as I am entirely in agreement with Rich but I’m worried lest it might have sounded I wasn’t. By acceptance I didn’t mean not trying to find the right med, or not trying to find a way out of MAV. I was thinking more of maintaining a fighting spirit but not to the degree it mentally bankrupts you. In other words accepting it’s going to be hard, accepting taking the knocks, accepting all meds may not suit, accepting despair when they don’t, accepting there will be other avenues, accepting you might need time out to rest your body and mind from the onslaught. Acceptance isn’t giving up, far from it. It simply gives body and mind a better chance to absorb the knocks and saves energy for the next round.

Warm regards

Brenda

No Brenda there was nothing wrong with your comments whatsoever! In fact, I agree with you on your comments about “acceptance”. Dealing with MAV does require a certain level of “acceptance”, because MAV is literally imprinted right in the brain. Brain chemistry is not easy to change, but it CAN be changed and it can be improved over time with medications and other lifestyle factors. But it is a fight for the longhaul, and accepting that this battle is over the long haul is important. You are right. When I first found out that I would probably have to deal with MAV for a good portion of the rest of my life if not the rest of my natural life, I went into complete denial, which only served to counter my efforts for treatment. I expected quick and immediate results, which increased my stress and anxiety and caused simply more symptoms. It was only after I came to the realization that fighting MAV was simply a way of life, like fighting alcholism, obesity, diabetes, or any other long-standing medical condition that is certainly treatable, but not easily handled overnight, that I was able to really “let go” and begin to live my life again, even with the symptoms at hand. I promise you, I didn’t wait until all the symtoms were gone until I stated trying to live my life as best as i could, this process started quite early in my MAV, and despite the challenges (which were many many many lol), I did my best to try and move on, and let the “process” take its course. I trusted in the path, and followed it. Afterall, if one has osteoporosis, diabetes, or another serious but non lethal medical condition (actually the ones I listed COULD kill you, but I wanted to list something serious for effective comparison), I would hope that the person would not be enveloping themsevles in the condition 24/7, and trying to have faith in their doctors and treatment plans so that their quality of life can continue to go on. Granted, MAV affects the very core of our souls, as symptoms are virtually impossible to ignore, but I firmly believe it’s necessary to try and move on the best we can, and not to spend 24/7 analyzing every symptom we have. Trust me, I’m an expert at that lol. It doesn’t accomplish anything except to heighten the symptom in question, and make MAV worse. Being a “brain” condition, anything that is going to worsen brain chemistry is going to worsen MAV. Stress and anxiety will cause HAVOC on the brain, which will only serve to keep us in 24/7 MAV hell. I honestly found that eliminating the stress by “letting go”, really was the first step to getting better, even before the medication kicked in 100%. So Brena, back to your point of acceptance, I think it is a very, very important one, and not one to simply pass aside in replacement for a more bold or bright outlook. The future IS bright because MAV is winnable, but the journey is extremely painful and disconcerning. It can also take a long time to get there, but if we do not give up, rest assured we will all get there. I’m glad I made the journey, and because of that, I can sit here before you in a much more peaceful place because of it.

Rich

“MJ, this is a transient condition.” Short sentence but the most encouraging one my neurologist ever uttered. It meant this wasn’t going to be an every-day-forever-and-ever-amen condition. It meant that there was an end in sight. It meant he had answers - and successes. It meant I would get better. ‘Accepting’ is a difficult process but it certainly helped when I was told that one of his answers would be mine, and he was right.

Like yourself, George, mine was an every minute of every day condition for 4 months. Propranolol, Topamax, Verapamil, Dyazide didn’t work. Valium in any dose, didn’t work. It just made me MORE tired. No effect with some meds, dangerous side effects with others.

The Ritalin is working for me, for now. I’m praying that it’ll prove to be my last medication.

George, you can take a break, you can whine, you can cry - but you don’t get to quit. You keep moving forward, no matter the pace - one bloody step after another…but you never just up and quit. Migraine is NOT a forever-thing.

You’re fortunate, as we all are, to have a place to vent and be weak. We ‘get it’. :slight_smile: Where else are you going to find so many people who understand exactly what you’re going through. Dammit, what a shame that so many who’ve found relief have left. Those who are here myself included are those who are still ‘dealing’ with the healing process. We’re still in the trenches - and at first glance, it can be depressing as hell. But the truth is, George, we are not an accurate representation of the true migraine picture. We are not a reflection of the battles won. Those people who’ve gone on to live their lives far outnumber us.
So…keep on moving forward. You’ll get there.

Just wanted to say a quick thank you to Rich - although your comments weren’t directed to me, like George, i’m feeling pretty seriously disheartened by my whole sorry situation at the moment and your words really give me some hope that it won’t always be like this…i think it’s such a frustrating process getting better, not being linear or easy to rationalise (and even less easy to communicate to other non-sufferers!) but it’s good to hear that the chances of it being permanent are slim to none. Thank goodness for that!
George, you have my complete and total sympathy - i know how despairing this condition makes me feel and i wish there was something that i or anyone could do… I hate to resort to platitudes but things will get better -this too shall pass… Thinking of you,
Lucy x

— Begin quote from “Lushka”

Just wanted to say a quick thank you to Rich - although your comments weren’t directed to me, like George, i’m feeling pretty seriously disheartened by my whole sorry situation at the moment and your words really give me some hope that it won’t always be like this…i think it’s such a frustrating process getting better, not being linear or easy to rationalise (and even less easy to communicate to other non-sufferers!) but it’s good to hear that the chances of it being permanent are slim to none. Thank goodness for that!
George, you have my complete and total sympathy - i know how despairing this condition makes me feel and i wish there was something that i or anyone could do… I hate to resort to platitudes but things will get better -this too shall pass… Thinking of you,
Lucy x

— End quote

Hi Lucy, awe that’s no problem at all but I greatly appreciate your kind words. I’m glad my post was a help. More importantly, I meant every word. Nothing embelished, nothing made up. I actually got my diagnosis of MAV after only a few weeks with symptoms, but fighting the diagnosis, and fighting my own thinking on it, I searched high and low for more answers. I saw or had phone consults with virtually every major MAV doc in the country. Dr. Hains was most rememberable because of that one sentance he said to me…I have never seen a permenant case of MAV. Then I asked him if he thought it was possible that I could be the first, because my symptoms were THAT horrible. He said he highly doubted it. And he was right lol. Several months later, my MAV cleared up with topamax and other lifestyle changes. He told me that he has seen tens of thousands of patients and every one of them who have stuck with him, and have had a proper diagnosis of MAV have either had a partial relief of symptoms, complete relief of symptoms or somewhere in between. I have it all on tape as evidence that what I am saying came straight from the man himself! He gave me hope that day and I stood by those words as I fought the condition but also moved on with my life at the same time. I am well now (that means 95%, 95% of the time), but I choose to post here because there were not too many successes hanging around. I promised that if I got well, I would not abandon those who need the support. I’m a man of my word :slight_smile: I have also received quite a bit of support myself from the great people of this board when I was sick, and down on life in general. I definitely want to give back and to also show that the treatments work! Sometimes I get a bit busy and cant post for a few weeks but I always try to get back and post where I feel it may really have the most impact. Scott was a big part of my support system as when I wasn’t on the board during very sick times, he’d send me an email now and again to check on me. The people on this board have great passion and compassion. And of course it would be nice if those successes would come back and post more often too, but I assure you, they are out there!

Rich

George, I hope you have had the time to read some of these posts, and maybe have a new frame of mind on what you need to do. please let us know

Rich

Hi George and everyone,

I too consider myself a “success story”. While it took me 10 years to get a diagnosis and treatment and while there have been some setbacks and there continue to be bad days now and then (today is one of them) I, like Rich am 95% well, 95% of the time.

For me, the crucial difference is between “acceptance” and “quitting”. They are two very different things. I accept that migraine and MAV are a part of my life. By accepting that I do what I can to control it and don’t freak out if I have a weird symptom - I just assume it’s MAV and move on. Quitting has never ever crossed my mind. Given how horrendous MAV is it just doesn’t make sense to me to not try everything available to control it and get your life back.

When MAV is at its worst it is very very difficult to not be completely consumed and exhausted by it. George, I think this is where you are at now. But it doesn’t mean you’ll always be there. I think it’s OK to take time out and feel pissed off and over it before you gather your mental strength and get back into trying to find what works for you. You’ll know when that is and everyone here will be right behind you.

Hang in there
Vic

Hi George,

Sorry I haven’t been able to get to your email yet given the gravity of how you’re feeling. Work has been totally nuts this week.

I’ve just been reading over what Rich and Brenda said in those first two posts and it is exactly my sentiment. Acceptance is key but that does not mean giving up as Rich put it so well. It took me about two years to accept this shit but in the end, the metaphor that worked for me was treating this like I had diabetes. It’s always going to be around, at least for the forseeabble future unless a cure is found, but I have to just take my “insulin”, make lifestyle adjustments and accept that every now and then I’ll have a “hypo”. And sometimes they’ll be bad if I indulge in things I shouldn’t or I stress out over something or it just happens for no apparent reason.

The real test of MAV is not so much the lousy horrid symptoms but what it does to a person psychologically. We literally have to swim because sinking is not an option. And the more we feel defeated the more MAV gains the upper hand. It’s absolutley insidious in this way.

Which antidepressants have you been through so far? I’m just thinking that it would be good for you to get a boost from something while you regroup and get the troops back in order. It’s VERY hard to face this monster when feeling blue. I remember very well how it was when I felt like I couldn’t go on with this one more day. Luckily an SSRI gave me a safe house to live in for a while.

Hang in there mate … Scott

George, I was very worried when I first read your post. However, in the time frame from then until now, a number of people have posted here with words of support and truth as I call it, that all I can say is I agree with them and I too feel your pain. Don’t give up. If anyone understands, we do. It’s easy to say and perhaps cliche’, but it comes from the heart: hang in there, buddy.

Rich,

Thank you so much for your responses. Your comments greatly raised my spirits!! you give me hope when I need it the most.

Lisa

George,

I had to make the same decisuion recently. Personally, I would say you are more of a man for admitting defeat, you have stopped deniyng(sp?) the severity of your condition. I am dealing with all the same emotions as you. Three years ago, I was doing so good, then last winter things started going down hill so fast i had to admit it to myself. My wife told me it was about time.

Brian

— Begin quote from “MAVLisa”

Rich,

Thank you so much for your responses. Your comments greatly raised my spirits!! you give me hope when I need it the most.

Lisa

— End quote

Any time Lisa. I am just speaking the honest truth.

Rich

George -

Don’t give in to mav. I have said those same words a million times to my family, “I quit, MAV got the best of me.” BUT…I would remember all the good times in my life, all the fun, I would look at my children and think that i have to go on. I cried, I was depressed, I was sick (literally) of it all. Then I changed my mindset…yes, I sort of accepted the condition but at the same time knew i could and would see better days. This condition cannot last forever. Rich’s posts are the truth. You are not going to suffer forever. I believe this fades with time eventually and there are so many meds out there. Keep fighting and trying different trials. You are going to be okay. Hang in there. I never, ever thought i would get better, now my worst day is a 95% day. I know my triggers. I try to avoid them but I never have gotten to the point of suffering that i was at before. Thank God! Have faith, look forward, you will beat this.

nance

— Begin quote from “georgekoch”

All of the symptomatic-relief meds have given up the ghost. Ativan (tried recently) does nothing. Same with Klonopin, Equanil and … now Valium.

— End quote

I’m no expert, but the meds you mention are not known to be effective for MAV. Are you seeing an experienced specialist? The classes usually tried for prophylaxis include the tricyclics, beta blockers, CCB’s and a few others.

-Op

Hi Op,

The benzodiazapenes work very well for many on here (including me) for temporary MAV control. They calm the nervous system down and have soem anti-convulsant properties. Too bad they can become habit forming if over done.

Cheers … Scott

I found that the Benzo’s can help you ramp up with Effexor…until it kicks in and you can s l o w l y wean off of the Benzo. Ativan worked for me…but too addicting. Try Valium.