Young and scared of future

Hi everyone, I’ve been posting on here more often lately because I’ve been needing more support lately. This has been going on with me for over a year and I’m only 19 I had to quit my job and havnt been able to start college. I’m on a combo of topamax and verapamil now so we will see how that goes. But I have dreams and things I want to do, I want to explore the world, experience other cultures, and just be able to do anything I want to. I read some posts on here and they are a little encouraging and then I read posts on here and they are SO discouraging and depressing, there’s people here who deal with this on and off their whole life an it really limits them and I don’t want to have to live like that. I’m so young and I have such a passion for life and I’m a free spirit and this is just killing me that it’s taking away all my opportunities. I mean is this something I’m ever going to be able to control? Or will I still be on here in 5 years having been fine for a year or so but then it all went bad again? I mean are these people on here whos lives are just non exsistant and miserable just the unlucky ones and it’s not very common to happen or does that happen to quite a few people? I mean honestly what does my future look like? I want to be able to do whatever I want to do an go wherever I want to go without this being a factor is that a possibility? Also I was wondering do symptoms of MAV usually get worse or do they stay the same cause mine have been pretty consistent for a year just getting worse when I’ve got a bad migraine, but I’m always scared I’m gonna get really really bad and stay that way? Sorry for so many questions I’m just dealing with a lot as you all know, thanks so much

I mean are some of these people who have been having this on and off for years and years people who havnt tried meds or don’t give the meds a fair chance?

My symptoms have been pretty consistent for the whole time with various severities of dizziness but not lasting for a ton of time and I’m scared I’m gonna get a lot worse and stay that way. I know I worry a lot but I’m just afraid this is going to ruin my life.

Hello.

I read your posts here plus another one in a different thread where you said that you didn’t want normal, you wanted a life that was amazing (I am paraphrasing).

Here are my thoughts: do you meditate at all? Even 5 minutes once a day or 5 minutes twice a day will help tremendously with the worry that seems to be chasing you right now. There’s no trick to it - just turn off the phone, tv or whatever, set an alarm ( a soft one, not a blaring noise) and just sit. You can keep your eyes open and look at a certain spot or you can close them. When a thought crosses your mind, which it will, think to yourself “Oh, there’s a thot and I’m letting it go” - or picture the thot as a balloon on string and letting it go - the trick is not to have an empty mind but to just sit and when you find yourself thinking, just let that thought go. Then you’ll think another one and another and you just casually let them go. In time, you’ll find that there are small spots of quiet in-between the thoughts and it’s those small spots of quiet that will help ease some of your worry about your future. Sometimes those small spots will be big spots of time; sometimes the five minutes will seem like nothing but letting thoughts go. Every session of meditation is different. That’s okay. It really will help.

About MAV - the simple truth is that it can change either for the better or the worse and you can’t change that. So, try to stop worrying about that (I do understand that is much easier said than done, but it is possible). But, there are things that you can change - things that you are very much in control of - first off would be all the lifestyle changes and then there would be all the different types of medicines to try (If you wish to go that route). You can also change your attitude towards this disorder. It sucks to have this but MAV is not who you are; it’s something that is a part of your life but it’s not you. You do have make allowances for it - sometimes they change on a daily basis and sometimes not. Flexibility, acceptance and a good sense of humor are very helpful. But, go ahead and plan your adventurous life. Even if it takes a bit longer to accomplish things because you have to make room for the bad days or because you have to adjust how you might do something for the symptoms you have - you can still accomplish things.

You asked “…will I still be on here in 5 years having been fine for a year or so but then it all went bad again? I mean are these people on here who’s lives are just non existent and miserable just the unlucky ones and it’s not very common to happen or does that happen to quite a few people?” You might be on here in 5 years. This is a great support group. You might find that you enjoy the people you “meet” here and want to stay on here. Or, you may decide to leave if you are having that fine year and then come back if it all goes bad again. The only way to know if you’ll be on here in 5 years is to check…in 5 years. It’s not a failure in life to be part of a support group. You mentioned the people here who have depressing stories and you labeled them as “non existent and miserable …unlucky…” I suppose you could say that I am one of those people who has a discouraging and depressing story and I would agree with that label sometimes. My life with this disorder (& other things) has been both - but even at those moments of depression I would never refer to myself as non existent. That’s kind of harsh. Even those of us with MAV who are struggling to find a way to get better have moments of joy, laughter and maybe even contentment.

With reference to your question - “I mean are some of these people who have been having this on and off for years and years people who haven’t tried meds or don’t give meds a fair chance?” You would have to ask the specific people you are referring to. There isn’t a way to answer that question in a general sense. Each person is different in how they approach this disorder.

Having this disorder makes life harder but not impossible. You can find ways to work with it, around it and through it. And sometimes you’ll just have to give in to it and wait until you feel better to get back to doing what you want to do. I fully understand that accepting this disorder as part of your life is a very difficult thing to do. I get that. But, the only way to move forward is to do that. Try to not worry so much about your future. You aren’t really living in your present when you do that and all that worry won’t help you plan the life that you want.

My best - Molly

Molly- I do try to meditate, it’s something I’m trying to work towards getting better at. I didn’t mean to offend or make it sound like people’s lives on here are not worth something and non exsistant and I apologize now reading it that way I understand that it came off the wrong way and I said it when I was in a very bad mood an looking back I realize what I said was offensive I in no way meant to offend the people on this site. It’s just distressing to think I may not be able to fully live the life that I would like too, it’s sometimes hard not to hyper focus on all the bad instead of realizing the good and sticking to that. This “illness” is so unknown that it’s just scary. Again I apologize for insinuating bad things towards the lives of people on here or with MAV I didn’t mean it in that way and was something said in a moment and I’m sorry. Everyone’s life is important it’s just unfair what people have to deal with. It’s a frustrating illness. Under all the emotional distress that everyone can tell I’m going through by now :stuck_out_tongue: I believe in my heart this is something that I’m going to e able to get under control and live my life like anyone else and be able to do the things I’ve dreamed of, I just need to remember to hold onto that. I’ve always been a worry wart and this just makes it worse.

I am sorry you too are having to deal with this horrible illness and at any age, it’s very distressing. I too am missing my old very active and social life. I have a 4 year old and i want to be able to do all the things i want to be doing with him But I have so much hope and that is what I continue to hold on to. No one knows how we’re going to feel in 10 years but we have to continue to fight and be willing to try every thing possible. It’s a struggle every day to feel positive an upbeat and some days are harder than others.

There was a time just recently when I was trialling my first med that I was so down. The only time I remember feeling like that was when I lost my Mom. But than I went back to my dr who is a specialist in this field and he put me on a different drug and I am starting to feel significantly better. I am praying that I will get even better as time goes on. I am not all the way better but I have been able to enjoy a few things that I have missed so dearly like hiking, Zumba and playing with my son. But now I’m about to start my menstrual cycle and feeling like crap again. Trying so hard to stay hopeful knowing that this will hopefully pass but definately shed some tears. A friend of my sisters died yesterday from cancer so it’s hard to feel sorry for myself.

Have you tried any meds? I was so against drugs before MAV but now willing to try anything as I want my life back. Have you tried any lifestyle mods?

We are all here for support and advice. Also read only the success stories when you are down. That’s what I do. It helps.

Mary

— Begin quote from "Mavprincess"

I am sorry you too are having to deal with this horrible illness and at any age, it’s very distressing. I too am missing my old very active and social life. I have a 4 year old and i want to be able to do all the things i want to be doing with him But I have so much hope and that is what I continue to hold on to. No one knows how we’re going to feel in 10 years but we have to continue to fight and be willing to try every thing possible. It’s a struggle every day to feel positive an upbeat and some days are harder than others.

There was a time just recently when I was trialling my first med that I was so down. The only time I remember feeling like that was when I lost my Mom. But than I went back to my dr who is a specialist in this field and he put me on a different drug and I am starting to feel significantly better. I am praying that I will get even better as time goes on. I am not all the way better but I have been able to enjoy a few things that I have missed so dearly like hiking, Zumba and playing with my son. But now I’m about to start my menstrual cycle and feeling like crap again. Trying so hard to stay hopeful knowing that this will hopefully pass but definately shed some tears. A friend of my sisters died yesterday from cancer so it’s hard to feel sorry for myself.

Have you tried any meds? I was so against drugs before MAV but now willing to try anything as I want my life back. Have you tried any lifestyle mods?

We are all here for support and advice. Also read only the success stories when you are down. That’s what I do. It helps.

Mary

— End quote

It is a terrible thing to have to deal with but there are people out there who have it so much worse, any health issues just aren’t fair. That’s what I just got done doing was reading all the success stories :slight_smile: I’m currently taking 160 mg of verapamil and 25 mg topamax but I’ve only been on verapamil for about a month and topamax for about a week

I’ve also cut out as much food triggers as possible so I’m trying with the lifestyle changes and doing as much as I can to help. I also go to a chiropractor once a week and a massage therapist once a week

Hi there,
I too feel like you and am scared to death. I am young also (in my 20’s) and am not able to work or go to school either. I am always looking for hope on this forum. That is what we have to hold on to. Do you have a good neurologist that understands MAV well?
Hang in there!
Christine

Chelse,
At your age this would have devastated me as well. You are young and do not have a lot of life experience under your belt. This is devastating at any age. I’m 32 with two young little boys. I’d give anything to be the mom they deserve. I feel like I’m letting down my family.
With that said I really do with all my heart believe that we will get better. I think it takes the right drug for your personal brain chemistry. It’s trial and error and it’s a long road. I also agree that a lot of people (myself included) do not get to a therapeutic dose of meds bc of SE’s. Will you live a jet setting life and be able to do all the wonderful things you want to do? You may. Some people get 100% better and never look back. My Neuro assures me every time I see her that we will beat this.
Right now the best advice I can give is to take it one day at a time. Don’t worry about the future, I know that’s very hard but you need to focus on the right now. I know from personal experience that getting depressed and anxious over this makes it worse.
How bad are your symptoms? Are you home bound? What meds have you tried? How long have you been suffering?

I also think there are lots and lots of wonderful success stories that people just never posted. If you go back to the beginning of this forum you will see that there are not many people that were posting then that are posting now. That gives me hope personally :slight_smile:

THey arent as bad as they were when i first got this but i cant work or got o school cause i just cant be reliable to be there but some days i feel good enough to do low key things, i hav a horse and i may get to see him for an hour or 2 some days but then ill have a bad migraine the rest of the day usually. its been over a year. I tried topamax at first and it got rid of my miraines but nothing else and so i quit it but this was before i was diagnosed with the mav so i didnt know how hard it was to control so i stopped the topamax too soon. and then i tried ami, it did nothing then i went for a long time without medication and then about 6 weeks ago i got on verapamil and am now at 80mg 2x a day and then last week i started topamax again and i take 25 mg in the morning because it keeps me up at night. so im hoping that the topamax will work for me again and this time ill give it a longer try and with the verapamil it will be the right mix :slight_smile: i believe the answer for me is out there and ill be able to live any kind of life i choose. I think this board is great for alot of things but it also gives a bit of a skewed idea and can kinda scare people into thinking they will never get better because alot of people never post their success stories or leave when they get better or never evene find this forum. the chances are in our favor we will get very well

You have a zest for life, use your energy and hope to keep trying to find a solution that will work for you…it may not be the dream life you invision , but let’s be honest, how many of us at 50 can say we lived the life we hoped at 19…you will find improvement and their will be happiness in your life!
Keep hope alive!

I know how scary it is to have this when you are so young. My vertigo started 4 days after I turned 21 (6 years ago this month - I’ll be 27 in a couple weeks). I’ll be honest, MAV (among other health problems) did destroy some life opportunities for me. It took everything in me to finish my college degree that year (but I did it), but then I wasn’t able to work. I am still extremely bitter about that, and I hope to someday earn an income. However, I did get married, went though fertility treatments (when I discovered that the birth control pill was what probably caused all this - I felt so much better when I got off of it), and now have a beautiful son that I take care of at home. Travel is really important to me and I didn’t fly for a long time when I was at my worst, but in the past few months I’ve been flying again (thank you, valium) and have gone to visit family and on a trip overseas. My vertigo has been very up and down over the years, but has generally been much better these past 3 years than in the first 3. When my son is weaned, I hope to try out some meds I haven’t been able to try while pregnant/nursing, and feel even better.

Especially at the beginning, I definitely had those times of depression, wondering if I had a future at all. But I guess the point of my story is, you don’t really know what your future will hold. All you can do is try to eliminate your triggers, live a healthy lifestyle, and try to find the meds that work for you. You may not be able to do everything you want to do, but you can still find a lot of joy. I have days where I feel fairly normal, and the occasional days when I don’t want to get out of bed. I just do my best to work with however I feel. That’s all you can do, really. Despite all that MAV has taken from me, I have also found an incredible amount of joy in my life.

And pretty much everything Molly said, who said it all better than I ever could. I wish you all the best.

Hi again.

I just wanted to add that I wasn’t offended by your post. I figured that you were not in a good mood when you wrote it. I just wanted to say that those of us (meaning me) who are struggling with MAV aren’t non existent. Even a life that feels miserable matters to the person living it. :slight_smile: Plus, I was worried that if you really felt that way, then if your symptoms worsened you might feel non existent and become really depressed and that wouldn’t help you at all.

I’m encouraged by your later posts in reply to all those who have written to you.

I hope that your meds help out and that better days are just around the corner for you.

My best - Molly

Just a quick comment, my belief is those of us speaking on this site, can’t worry too much about how we say things here. To me this is like group therapy where we want to come and gather info, share advice, and sometimes just vent and have a “pity party”. I would hate for people to add to their anxiety by worrying about what they said here, I think we all have enough anxiety already…I really appreciate this site, and I hope to continue to be able to share my thoughts and thank you all in advance for listening! !