I can't do this anymore

So I managed to make it through a three hour dinner, felt like I was rocking the whole time with intense head pressure. Watched everyone else enjoying themselves while I was waiting for it to be over, thinking the entire time, why me, what am I being punished for. I just want my life back. Now I’m back in my room balling my eyes out because I simply can’t handle this anymore, I really don’t know how to go on in this state, it’s not a life, it’s prison. Seriously, how do I find the strength to continue fighting, how??? What if I’m stuck this way, I can’t do this any longer, there’s no hope for me

I have been there before, and sometimes I still cry my eyes out wondering what will my life be like. I have 3 children, and have been “sick” most of my 6 month old daughter’s life :frowning: I am doing a lot better though since being on medicine, but I have a long way to go to improve. Do you have a benzo (Valium, Ativan, Klonopin)? I take Valium now but the first few months I took Ativan and that literally was how I got through my days…barely but got through. I also started Nortriptyline (not on it anymore). The rocking decreased and it helped some but not enough, I am now on something else that has helped me more, and I take Valium each night.

For me the rocking always comes back when I’m not on medicine. I think the key is finding the right medicine and that can be a pain in the ass! I hope you feel better; I too have asked myself why do bad things happen to good people? I mean there are literally thousands of people out there abusing alcohol, drugs etc. who don’t have MAV…why us? Trust me, it boggles my mind too. I keep hope by reading people’s success stories on here, and seeing that they too were so bad, some bedridden. ((HUGS))

Don’t give up!!! I know it’s hard… all of us here know how hard it is! You need to BELIEVE that you will get better. I know this may sound corny, strange, whatever, but I firmly believe that our mind can help to cure our problems. How else can one explain the placebo effect? It’s important to tell yourself everyday that you are improving. When I get out of bed, I do a small ritual that includes affirmations and balance exercises. Just say, “everyday in every way, I’m getting better and better”, (repeat it at least 5 times) even if you don’t believe it, it will sink in and you will improve. It will help to give you the strength to continue the fight against MAV.

sending you a hug
Cat
(who is getting better everyday… :mrgreen: )

i hear u, 100%. theres times where you feel like you cant go on and sometimes you get 2 the point of saying screw this i will find the answer its not going to beat me. Nobody can really understand unless they have it too. ive got grief from friends sick of hearing im still sick, or just stupid advice. after 3 yrs of shit i still go between i give up or ill beat it. somehow you just go on some days are better than others. people that have done the med thing seem to be better of, i havent done it too much due to circumstances, but im better than what i was. concentrate on your self and dont put too much pressure on your self it can be a long road, you have to lower your life standards for awhile, if you can do the meds

I know exactly how you feel and how difficult this is sweetie! I have been where you are many times in the 10 years I ave been doing this…as a matter of fact I posted a similar letter last week…but I picked myself up and am moving forward with lots of help from the wonderful people on this forum, an understanding family and a doctor that is willing to try different combos until we get it right…although I hate the drug part! I’m also going to see dr hain in Chicago in November …so…use a benzodiazepine if you have one to calm down, continue doing research using this forum and some of the great minds that post here and know that you can do this. Yes…some days suck!! I’ve had quite a few as most of us have…but I refuse to believe that there is not some answer out there! Call me Pollyanna…but I choose to move forward and so can you…I promise…get some rest, take your meds and move forward…one second, one minute or whatever amount of time works for you!! Take care please…we all do understand!! Dee

You can only do what you can do. Do whatever you can with your lifestyle, diet, and medications. Avoid situations that make you feel miserable, at least until you get this condition under control. I dont have MAV but I have chronic symptoms from an ear disorder, so I know how hard life can be. Its not worth going out with friends because I feel so dizzy/nauseous from all the movement. But there is hope for both of us with the right treatment. :smiley:

Hi Pharmgirl

You need to be kinder to yourself and give yourself a break! I’m assuming you still have your appt with Hain in November so there’s really no point in agonising what you should do before then. Instead, channel your energies into planning what you want to get out of the appt. Make a list of everything you want to ask him. Ask him when you see him if you can record the session (sometimes they say yes!) So you can play it back to yourself if you need to. And be prepared to try meds. It’s interesting you are a pharmacist and med shy!

It took me 22 years to get a proper diagnosis (two years ago). I’ve tried a few meds and thought I’d found the answer in Lyrica but recently had a massive crash. But many times over the last 24 years I’ve gone into remission, the longest period of remission was 10 years! So I hold on to the fact that my brain is capable of normality underneath all the crap and hasn’t been permanently damaged. But I know it’s hard to think like that when you are in the midst of feeling like death warmed up. At these times I rely on clonazepam to get me through. Then I stop taking it when the symptoms decrease, but it’s great for short term getting you through the day, the appointment, the dinner date, etc.

Hang in there and good luck with Hain and let us know how you get on.

Dizzy Lizzy x

Thanks for all the support, you are all the only ones that truly understand what I’m going through. Today is a new day, I didn’t get much sleep at all so it feels like I have a hangover without the alcohol! But I’m gonna try to be positive, it’s just super hard sometimes and it’s overwhelming trying to keep up with life in this condition. I do see meds as a necessity but kinda wanted to wait for hains input. My mom says I need to find a dr. House, I’m not sure any truly exist though. I might consider the mayo clinic as well if need be. Iwas hoping to wait for a time when I had some vacation time to try meds so I wouldn’t have to worry about working with any bad side effects, that would mean waiting for December though.
I think accepting that this may be a life long struggle is the hardest part, I get a lot of hope and encouragement reading the success stories but I have to admit seeing that some people have been here for years still trying to figure it out is a little discouraging. But for now I will try to take it one day, one hour at a time and dream about WHEN not IF I’ll be better!

I haven’t been on the forum in quite a while but wanted to respond to your post. I’ve been where you are off and on also. I’ve been sick off and on for about 31 years now. It wasn’t as chronic in the beginning as it is now. I’m still not totally sure what my diagnosis is as I haven’t had the nerve to stick with an antidepressant to find out for sure if i have MaV but it is suspected.

I sometimes wake up feeling like I have a hangover without having any fun the night before also so i can relate there.

I’m wth you with trying meds i can only do it when i’m off work for at least a week if not more. I take valium here and there and that i believe helps get me through although there are days where i just feel really really sick not super dizzy but just sick. I have severer allergies so I think that’s why. I still sometimes wonder if i have eustacian tube dysfunction although no one has ever told me i do but the pressure behind my ears makes me wonder.

I’ve had days where i just cry off and on all day wishing i could be “normal” and do things that other “normal” people do. This past summer was a bit better and I was able to do a few more things than i did the year before. Last month i even managed to go to the State Fair but was sick for two days afterwards with bad dizziness but it was worth it to see my 94 year old mother to get out and enjoy herself and to spend time with a visiting sister.
I too have thoughts that i am being punished for something but as my BF says it doesn’t work that way look at little babies that are born with cancer :frowning: he’s right but sometimes it’s just hard. I understand.

Chris

PS i hope you have great success with Dr. and with meds :slight_smile:

I also have a horrible time at restaurants. I find myself gripping underneath the table trying to keep my balance. Last year I went to a dinner at a restaurant rocking and feeling like I could not hold my head up a second more. I looked around the table at everyone who was enjoying their meal so carefree not even realizing the hell I was in. I decided after that I would not be doing dinners like that again until I was feeling better. What really has struck me is that people who were at that same dinner have told me that I seemed fine at the dinner. If I did so well at that restaurant why can’t I go to dinner again? People don’t understand and by pushing through something that is truly miserable for me I just increased the expectations of people around me.
I understand how you feel and go through times where I feel like I may not be able to go on either. That feeling always passes and I find some little thing that makes me so happy that I continue to fight on.
I agree with others, that you need to give yourself a break. Take care of yourself.

Kat

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— Begin quote from “Pharmgirl”

Thanks for all the support, you are all the only ones that truly understand what I’m going through. Today is a new day, I didn’t get much sleep at all so it feels like I have a hangover without the alcohol! But I’m gonna try to be positive, it’s just super hard sometimes and it’s overwhelming trying to keep up with life in this condition. I do see meds as a necessity but kinda wanted to wait for hains input. My mom says I need to find a dr. House, I’m not sure any truly exist though. I might consider the mayo clinic as well if need be. Iwas hoping to wait for a time when I had some vacation time to try meds so I wouldn’t have to worry about working with any bad side effects, that would mean waiting for December though.
I think accepting that this may be a life long struggle is the hardest part, I get a lot of hope and encouragement reading the success stories but I have to admit seeing that some people have been here for years still trying to figure it out is a little discouraging. But for now I will try to take it one day, one hour at a time and dream about WHEN not IF I’ll be better!

— End quote

I think this forum has about 1,000 members, and I would guess that only about 50 of them are currently active. The people who recover from MAV dont stay on the forum, they move on with their life. Sure there are a few people here who have persistent struggles with MAV despite treatment, but that is a small number of people compared to the ones who are able to control their symptoms.

Yeah, I realised after I posted that saying I’d had this thing for so long might be a bit discouraging to say the least.

What I also should have said is that MAV didn’t even ‘exist’ officially till 1996, 8 years after my first attack, and it was many more years after that till it was recognised by more than a handful of specialists. You’ve joined the MAV community at a time when more people are being correctly diagnosed than ever before, more research is being done, and more drugs are being used successfully against it. Honestly, if I’d been given clonazepam way back in 1986 my life would have followed a different path I’m sure.

And also of course you are going to read the worst MAV stories on a forum such as this.

So hang in there and all the best.

Dizzy Lizzy x

Pharmgirl,

I know exactly what you mean. I was at a dinner with my family and my parents, and I remember telling my Dad, “I don’t know how long I can live like this.” And he said, “What are you saying? Your kids are at this table and you are implying that you can’t go on living?” I realized he was right, I shouldn’t say things like that, but I felt so much pain that I needed to express it somehow.

What has helped sustain me was something that I was told when I went through drug rehab back in 1992. I told them, “I am not sure if I can do this.” They told me, “It is like a tunnel. You have to go through to get to the other side, you cannot turn back, or stop in the middle. On the other side there is relief. You have to push even when you cannot see the light on the other side. Eventually you will see it and you will be there.” I trusted in that and it turned out to be true. So I think the same thing now.

There is relief for you, somewhere, somehow, with the right doctors and medicines. You have to believe that.

Thanks for all the encouragement, it truly does wonders for me right now.
Dizzylizzy: I’m sorry you’ve been suffering for so long, but knowing you had remission is promising! I notice you mentioned children, did pregnancy make your symptoms worse, better?

The tunnel analogy is an excellent one, it also makes me think of a maze, trying to find the exit!
And it is hard to believe that there’s 1000 members because it seems like only a handful have the majority of the posts since I’ve joined, so your right hopefully that’s a good sign as well.
I know my anxiety isn’t helping things either so I’m really considering upping the lexapro even tho I really don’t want to, it might help me cope.

In the end I just really want me and my life back. I want to be carefree in the decisions I make about what I do or where I’ll go and not have to stop and think, " am I gonna feel ok, or will I get dizzy"
If that day comes when this is not my focus it will probably be the happiest day. And to drink coffee again, even decaf would be a dream.
But really thanks for the encouragement, I think friends and family just don’t know what to say to me anymore

Hi Pharmgirl,
Like many others I have come through the hell of desperation too, wondering how I could possible go on. My mind has been in some really dark places. But I learned how to make myself well, and it took a few years to really get it down, and made big changes in my life and in my home, and for the most part I got my life back, my independence. I have lost spontaneity because every day I have to think my choices through, what to eat, where am I going to be, and I have lost the freedom to just go anywhere (rooms with tight groups of perfumed scented people will trip my mav) and my social life has been dramatically altered, but it’s a very rare day when I am distractedly dizzy or sick with this. My symptoms stay at a low ebb and I even get long spells feeling quite normal. It took a long time and diligent effort to get here, and being constantly aware of my surroundings, and learning what things I can’t eat anymore, but it was worth it, and so are the sacrifices, because I can function again. It just takes time.

Pharmgirl, just want to say thinking of ya. Hugs from London xx

There is hope for everyone here. I’ve asked myself the same questions “why me” and blaming myself. But I realized that life has different plans for us and you have to live it to the best you can. I take Klonopin when the nights are really bad, and that has seemed to help things for me significantly. I’m beginning to suspect that Zoloft is making me dizzier than what I am used to, but I’m not so sure.

Stay strong everyone, we’re all in this together!