Mourning my life

Every day is so incredibly hard for me, but I find that the weekends are particularly difficult, emotionally. I suppose I associate weekends with LIVING!

I find that I am constantly mourning my life. I cannot accept this new, horrendous, life, filled with suffering 24/7. I don’t think I could ever accept this as these symptoms are so very torturous. I wish there was a way that I could emotionally cope with this, because the physical suffering is painful enough. I physically push myself as much as humanly possible with these symptoms.

I think this illness is horrendous at any age. but, personally, I was 30 when this hit (35 now) and thought I had an entire, wonderful life ahead of me. And, every day, since, has been filled with nonstop suffering. I am so grateful for my husband and sons, but I am also so saddened that I cannot even care for them or enjoy them. This existence still seems surreal to me. Not quite sure why I’m writing. guess I’m wondering how others cope with being so sick. I realize that I am a particularly bad case and have been sick for years. do others get that surreal feeling? after almost 5 years, I still cannot believe this IS my life. In ways it feels like I’ve been sick forever, and in other ways it feels like this cannot possibly be happening, and I still have vivid memories of a healthy life. I was never sick a day (minus a cold, etc) before this. I still cannot wrap my head around how you can wake up one day, and life as you know it is over. I yearn for my life so deeply. I am terrified that I might have to live like this, and I just don’t know how I can possibly do it. I just want my life back. something many take for granted. I know I did before MAV struck.

thanks for listening. sorry for the sob story. just so scared I might never “live” again.

Lisa

You will live again. Sometimea I feel the same way. Even when I am well I am looking over my shoulder.
Keep you chin up and keep searching for answers. Yours is out there and I refuse to believe that we should ever just give in.

Thanks. Yes, will not give up. Will keep trying meds until one day something finally works

— Begin quote from "MAVLisa"

Thanks. Yes, will not give up. Will keep trying meds until one day something finally works

— End quote

Exactly. Keep a list of everything you have tried and everything that you have yet to try. Work down the list methodologically. Go over everything one by one – MRI, blood tests, ear tests, psychiatry tests, neurology tests, toxin tests. Make sure you have an airtight account of everything.

You will find the key, it is out there. I went for 14 months with a creeping feeling of despair, I kept telling people, “No, you don’t understand, something is SERIOUSLY wrong, it is not just a little thing, it is a total life-changer.” And I felt no one would listen, except on this board. And then I found a good drug, and I am almost recovered, knock wood.

Your day will come.

Like the others have said…keep the hope and trying everything available until your match is found. This disease is such a thief…it is difficult not to feel robbed and sad about the situation. I find myself going back and forth between anger and sadness. Luckily I get blessed with a good day and it gives me hope.

We’re all in your corner…it’s good to know one isn’t alone even though we certainly wouldn’t wish this for anyone.

Lisa,
Your “letter” sounded like I wrote it. I have those exact feelings. Every day. One of the hardest things, other than feeling so bad all the time, is that I cannot explain how really bad things are, to anyone. I look normal, I try to stay dressed and keep hair combed and some makeup on and then people think things aren’t so bad, because I look normal. You can’t SEE any hurt. Sometimes, I wish I had a broken leg and then everyone could see it and also I know it would heal. With MAV , noone really understands, you can’t see vertigo, and I have no hope that it will heal.
I am on my 4th night of starting Paxil and started taking lorazapam. I feel terrible with dizzy, bees flying around in my head and I don’t know if it’s the Paxil or if its the lorazapam or what. I have nori in 5mg. ready for me to start, and I don’t dare start it. I hate this. Just went with my husband to the movie “Hunger Games” and had two hard spin/vertigo while sitting there. Nothing is normal, my kids don’t even want to talk about it any more. They are sick of it. I can tell. It’s all I can think about, or talk about. My friends are sick of it, and I can’t bore people to death with trying to explain what MAV really is.
I cried when I read your post. sobbed, because I know how you feel and how scared you feel that this might be “IT” and never get better. However, I am NOT going to jump off a bridge or walk into traffic, so the only solution is to keep trying to find something that works to make us feel better. Having this forum makes the process more interesting and I look forward to seeing new things on the forum sometimes, and I learn alot from reading posts, There IS nothing else to do, but keep trying and I intend to do just that. You will, too. xoxo Meredith Spinning lady

Oh honey, I soooo feel your pain. This illness just rips our lives right out from under us. Everyday I cry and beg for my life back. I too, have 24/7 symptoms and went from being. Fun loving, outgoing and extremely active person to now barely able to cope. I am a single mom of a 4 year old boy and I try so hard to put on a smile and play with him and still teach him things. But it is a daily struggle. The weekends are also hard for me because I can hear kids outside playing and swimming and I’m inside laying down just trying to muster the energy to play with him. I’m not the only one missing out as he suffers too even though he doesn’t realize it. Yesterday i was in bed crying thinking that i dont want him to remember his mom as always laying down and being sick You are very lucky to have your hubby to help. Sounds like he is very supportive. That is great.

I feel extremely bad that you have spent half your 30’s in misery. I can’t even imagine. How many meds have you tried. I started my second trial of meds 4 days ago and today was my first day in months that was almost dizzy free. I am pretty nauseous the first part of the day from the meds but I’m praying that the side affects will go away after my body adjusts. Than in 10 days I’m adding a second drug verapamil. What drug are you on?

Like longshort says, your day will come and we have to just keep on knocking down the doors till we find the right preventative. I know how damn hard it is to stay positive. I have never ever been as depressed as I have lately. Thankfully today heightened my hopes but I get fearful of getting my hopes up. When I get really down, I come on here for support and read at least 1 success story.

If you ever want to chat, please feel free to email as I feel the same hopelessness as you and it’s good to have support.

Take care. We will beat this thing.

Lisa, Meredith and everyone who is suffering so much - I read your posts and sit here with tears streaming down my face knowing how badly you are suffering and how your lives have been affected is heartbreaking. We know that our families and friends can have little or no understanding of the terror of the dizziness, rocking, etc. that is a continuous day after day, month after month, when we are trying so hard to find a med to help these awful symptoms and just want to sleep to get some relief.
I have met another lady in my town who also has MAV and it is such a relief to actually talk to her, knowing she understands exactly how it feels.
I think that all we can do is give each other support and provide our doctors with the published information about MAV so, hopefully, they may be able to help any of their patients who aren’t able to get a diagnosis and treatment for their dizziness.
I’m sure it’s so hard to stay positive after years of suffering and am praying that you can find a med to give some relief.
Barb

Lisa,
Your message does mimic so many of the thoughts I have running through my head as well. Without this forum I would feel so incredibly alone as no one can ever get what we go through. I am feeling particularly desperate at this point as I did see my doctor and the two drugs we didn’t try (cymbalta and neurontin), he will not prescribe as he says they will only make me dizzier. I left with tears in my eyes. Thankfully, everyone here gets this… even more than our doctors I think. I am going to try to start exercising and pushing myself more ane more each day. I was just wondering, how do you spend your days? I imagine you must be very busy with two little ones. Are you able to enjoy any time with your husband and how does he cope? My boyfriend left me after a few months when I was at my sickest as I no longer could do much of anything we used to do.
Hang in. You will get better!!!
Christine

Hi Lisa-
It sounds like you are going through a rought time, I’m very sorry to hear that. I sometimes feel the same way. I am 34 and have had this on and off my entire life. When I am in the acute stage I wonder how I will ever make it till the next day, let alone the rest of my life. I remember the worst part was thinking it was all in my head and thinking I was crazy and alone. I found this site last December and what a great find it was! Now even at my worst I know I am not crazy and I know there are people in the exact same situation as I am. Just knowing I am not alone makes me feel a better.
You mentioned a husband and children, it sounds like you have a lot of love and support surrounding you, what a blessing that is! I’m sure you are working on finding things to help you feel better and from what I hear it can sometimes take a bit. I know getting through each day can seem like climbing a mountain sometimes but somehow we do, and each day is a victory.
I really do hope things start improving for you soon!
Cartney

Dear Lisa

I’m so sorry, I really feel for you and it upset me to read your post as I could have written it myself.

I’ve had MAV since I was 12 on and off and migraines have dominated my life since my 30s. I’m now 42 and MAV has come in a particularly violent form and completely messed up my life. I’ve always struggled to work, but I’ve managed it, and at times I have long periods of reasonably good health, But now I am disabled by it. It hurts me to even write it, but it’s the reality for me right now. The thing that keeps me going is that I am convinced this is hormone related: peri-menopause. So although I feel miserable right now, I do have a belief that things will get better in the future, but I just don’t know when.

I know from experience that chronic migraines and vertigo have gone in cycles for me. I never got to have children, we’ve been trying for a few years, nothing happened and now I’m so ill I wouldn’t be able to manage as I can hardly manage to take care of the cats. So MAV has closed down that window for us now. It’s difficult for you to do all the things you’d like to do, but your children still love you and need you. They always will and I’m sure things will not always be like this for you.

I’ll join you in the mourning of a life, but a changed life that could become as enriched as the previous one in a different way, one that is temporarily changed just for now, but not forever. xx

I wish I felt well enough to address each individual post. But, please know I read each one and will reread, and am so thankful for the support. It also breaks my heart that so many can empathize. why in the world such bad things happen to such lovely people is beyond me. I will definitely keep on trying different meds and know I cannot give up. the torture is just too much to bare, but no choice but to deal with it and keep on trying meds.
I have tried so many meds. the ones that I have tried to therapeutic doses are verapamil, celexa, nortriptyline. I also tried klonopin. These did not help the MAV at all. Verapamil and nortriptyline helped with migraine pain a bit. I am currently trialing neurontin. Still at early stages of this trial. I stayed on lower dose of nortriptyline as it seemed to at least help with the migraine pain, although not as much since I had my second son. I would like to, perhaps, try another tricyclic since I’m on nort anyway. perhaps, prothiaden, but it isn’t given in US and neurologist not familiar with it. but, I know you can get online. just need neuro to be on board.

Lisa,
It’s so hard for me to read this. You know I think about you all the time. Today I went with my husband and sons to lunch and it was so hard, I was rocking the entire time. I thought “is this my life”? Is this how’s it’s always going to be for me? I am able to do things but I have to push myself so hard and I really don’t enjoy doing them. I see everything as a task. I don’t know how to have fun. If I’m not rocking then I have a headache if I don’t have a headache then I’m worried I’m going to rock or get a headache. It’s really hard.
Today is a particularly bad day. Some days are better than others for me but as you said in you message I too feel like my life has been robbed. Yesterday I felt like my vertigo was getting under control and today it’s awful. I never know how my days are going to be. I’m scared to leave the house bc I’m terrified about how bad I’m going to feel. I’m worried I’m robbing my husband and my sons of a normal life as well.
You are not alone, although I know how lonely this is. And weekends are harder for me as well as I feel like I’m letting my family down. My husband sold his boat this year bc he knew I’d never go out on it again. That was hard for me as we used to love to take the kids out on the boat on the lake on the weekends. Now we pretty much spend our weekends at home.
I’m trying to stay strong, and positive and pray, pray, pray that Cymbalta is going to give me my life back. Some days I think I’m going to be okay, today is not one of them.
I do believe there is a magic pill for all of us. Don’t loose hope.
Love,
Elisha

Dear Lisa,

I can not imagine how this is for you. I have only been as disabled as you for ½ a year I guess. The rest of the time I did have some quality of life (but not enough). And I any way feels like I am going through a great deal of sorrow, because of my new life.
Did you at any time the last 5 year feel better or worse? Or has it been “stationary bad”?
Lisa, I can not imagine how it must be for you. I have a taste of it, but what you are going through is so hard and beyone what I would be apple to do and stay sain, you should get a gold star for keeping going. I hope so much for you, that it will begin to go forward.

Very best, hoping for you.
From Line

— Begin quote from "elishat27"

Lisa,
It’s so hard for me to read this. You know I think about you all the time. Today I went with my husband and sons to lunch and it was so hard, I was rocking the entire time. I thought “is this my life”? Is this how’s it’s always going to be for me? I am able to do things but I have to push myself so hard and I really don’t enjoy doing them. I see everything as a task. I don’t know how to have fun. If I’m not rocking then I have a headache if I don’t have a headache then I’m worried I’m going to rock or get a headache. It’s really hard.
Today is a particularly bad day. Some days are better than others for me but as you said in you message I too feel like my life has been robbed. Yesterday I felt like my vertigo was getting under control and today it’s awful. I never know how my days are going to be. I’m scared to leave the house bc I’m terrified about how bad I’m going to feel. I’m worried I’m robbing my husband and my sons of a normal life as well.
You are not alone, although I know how lonely this is. And weekends are harder for me as well as I feel like I’m letting my family down. My husband sold his boat this year bc he knew I’d never go out on it again. That was hard for me as we used to love to take the kids out on the boat on the lake on the weekends. Now we pretty much spend our weekends at home.
I’m trying to stay strong, and positive and pray, pray, pray that Cymbalta is going to give me my life back. Some days I think I’m going to be okay, today is not one of them.
I do believe there is a magic pill for all of us. Don’t loose hope.
Love,
Elisha

— End quote

Elisha, you just told my feelings in words. It is so spot on. I will have to translate this and quote you (although we dont have a boat) ! Thank you.

Lisa, after reading your post I got to thinking. Thinking back to when MAV hit me and stopped my life in its tracks, when it morphed from something I could just about deal with to something I most certainly could not. My kids were a bit older than your sons, my youngest around five. Suddenly I couldn’t take him to school, couldn’t shop, couldn’t go out, just sat or lay in bed, scared and depressed, or as you so accurately describe it, “mourning my life”.

I was pretty much like that for nearly nine years. But the day DID come when things began to change and there was a little hope on then horizon. And now, fifteen years on, I have a version of my life back. Not quite the same but at least I’m living again and not just existing.

Please Lisa, don’t give up hope, hang on in there because one day YOUR day will come. It can and it will, even though the years have passed and it seems nothing will ever work, nothing will ever change. I hope you don’t think I’'m being insensitive talking this way, I know you are suffering so badly, I just so much wanted to encourage you to believe that even after a long time of nothing happening, of finding no answers, that there CAN come a time when, suddenly, right there is the key to recovery.With all my heart Lisa, I trust that that time comes very soon for you.

It’s so good that you share your feelings with us all. Thank you for making the effort to write. We’re on the journey with you and hope that all our thoughts and good wishes help you along the way somehow.

Brenda

Line,
It’s so so so tough. All of us feeling so badly and in such despair. I, luckily, have been having some better days but not any good days really. I’m thinking about you too and hope you (and Lisa and all of us) get relief soon!

Hi Lisa, we have corresponded before… As you know I have been dealing with this for a long, long time, almost 14 years, although many of those years I was diagnosed and treated with MS meds.

Lisa, I completely understand how you feel. My son was in preschool when this began. He is now in his second year in college, doing well and playing in a lot of football games, many of which I cannot attend.

When he was little, we would read and play board games and sing and play make believe either on a big fluffy couch or in bed. When I felt well enough, I would go with him and our nanny to the park. Lots of times through the years I wasn’t able too, but my husband or nanny or a family member was there. He always knew that he was loved. Because of that he has grown up to be a kind and compassionate young man. At twenty he is at an ivy school on the deans list, playing football and pre med… My point here is not to brag but to show you that there can be lessons learned here if we look outward… This disease is HARD… But it teaches our children compassion and patience. Life goes on and we are able to take part in it at times…

I too have spent a lot of time in my bed wondering… It feels surreal… Certainly not what I imagined. But finally after all these years through a lot of doctors and hospitals and tests and frustrations, I think I may have found a combo that is working for me… With a few tweaks I think I might be close!!

So my message to you Lisa is keep at it. I’m always happy to see you on this board because I know how bad you feel. I have been there… Hopefully I won’t be back there anytime soon, but you never know with this disease… Keep trailing meds (I know it sucks!), keep a journal of external and internal triggers, and keep your mind occupied in other ways if you can… Puzzles, reading, having a friend visit…

Hang in there Lisa!! This board contains some of the smartest, silliest, loveliest people that I have come across in a long time… I know you know that… We will all drag each other through the bad times to get to the good times

All the best, Dee

I have spent many days and nights in the last 5 years wondering if it was worth it, it would have been easier to end it, but I feel I owed it to my family to keep trying…two surgeries and many drugs I am finally having a few good days and it makes me remember how good life can be…there are so many drug options and combos to go through, keep trying…I hope you are seeing a psychiatrist , mine has helped me mentally and getting the drugs right.
Also, at least investigate SCDS, inner ear deterioration, there are treatments.
Love to you!
jaybird

Lisa it is so distressing to read your words. I know it is no consolation but we understand. Many times over the years I have thought ‘My life is over’ (meaning the life as I had known it and the life I expected I would have) and ‘I can’t live like this’. This is a truly insidious illness in that it saps so much energy from us - physically and emotionally. I have plumbed the depths of despair with this cursed condition, but mercifully I have had long periods of respite or where the symptoms have been low level enough that while unpleasant they are manageable.

That you (and sadly many others) have suffered so much and for so long with no relief is wretched. Your determination thus far and that you have gone ahead and started a family astounds me. You have reserves of strength and will I suspect you don’t even realise. I have so much admiration for you.

Please hang in there Lisa. You’ve been given some great advice. We all support you. Keep at it.

Much love your way, Vic