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How do you deal with the people around you not believing you?

It’s been an especially hard day, I’m 23 years old and I’ve been suffering with this vertigo for almost 5 years now, and my parents still don’t believe in my diagnosis or my symptoms. I have prescription drugs on my nightstand right now and the urge to take them all and be done with my life is too strong… How did you try to convince your loved ones that you’re not faking any of this and that just because you look ok on the outside, doesn’t mean you truly are?

Qwe,

First, do not give up. Life is worth living. Your life is worth living.

Personally, most of my belief and support comes from right here.

I have printed out the VEDA website on Vestibular Migraine and the same from Dr. Hain’s website and given them to my family. Results are mixed. My husband and son try. My parents and sister don’t.

Absolutely no one wants to believe you have a disability that could last forever. So they blame you. That’s utterly stupid but it’s also human nature.

Find a support group like this and a good therapist that’s used to dealing with chronic, hidden illnesses. After a while of that, ask your kindest parent to come with you.

Results are mixed. Some will care. None will understand because they simply can’t. They haven’t lived our experience.

Stick with us. We understand you. We can be the family that loves you unconditionally. You are worthwhile to us.

Emily

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Qwe,

We are here to help you. We understand you.

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I have the same age as you and I have done these thoughts a lot of times. I know how ot feels to have a parent that does not understand or dont want to understand. This is my mother, she thinks I am faking all this cause I dont want to have responsibilities etc. I am not trying to explain to her whats going on because there is no hope. Just try to ignore as much as you can and of course find a good therapist which can talk to them too.

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So sad to read in what a dark place you are at the moment, this condition on its own is so so rough and then being disbelieved on top of that…
I was disbelieved and criticised for how much I struggled with MAV and ended that relationship. However it’s different when it’s your parents. One thing that really helped me and saved my sanity was getting a family member to accompany me to each appointment with a neurologist I had chosen because he knows about MAV (DR S). She took notes and I distributed them to all my family and ex in laws. But then of course you need to be able to access the right doctor, because some consultants will actually make things worse if they’re ignorant, minimise your suffering or ascribe it to mental health issues. Would consulting a migraine specialist be an option for you?
Please please look for support, maybe even call a helpline in your country, here in the U.K. there’s the Samaritans, 116 123, they’re free and confidential; it’s anonymous and they’ll encourage you to explore your suicidal feelings… they’re brilliant, I’ve called them in the past.
Are you on migraine preventative medication ? Which one ?

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Qwe,

Come back and talk to us.

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Qwe,
I’m here to talk to anytime, we all are! We all have seen those heavy, dark days with this illness and I thank God that I have had this group to help me find hope. I would like to second what @LucyLabrador said… what really helped my husband understand was going to the neurologist with me. He was as desperate as I was and sometimes that came off as being not understanding. I remember him yelling (and he’s NOT a voice raised kind of guy)… “Why aren’t you getting better!!!”… of course, he was not mad at me! He was mad at the illness that was invisible to him. I’m hopeful that if your parents can go to an appointment with you, they can have the same epiphany my husband did. He wept when we left that appointment and has been incredible since.
They care, they love you… they are just uneducated on the illness.

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Last night the paramedics had to come and take me to the ER because of dizzy/room spinning and ringing in my left ear and projectile vomiting. I was mostly coherent but I couldn’t move without becoming violently sick. I always get a ringing in ears and dizziness every day when I begin my workouts and also if I get too scared or angry etc. This is the first time I have vomited, the last episode I almost vomited. The nausea lasted two or more hours after the vertigo had stopped. I was alone when it happened and my husband didn’t even want to come to the hospital. He was unsupportive because he didn’t understand why I called 911. I only called because I was alone with a 4 year old and I thought I was having a stroke even though I’m only 37. He shamed me for 15 minutes straight once he finally came. I’m afraid not calling is gonna be the time I should have called for help. I don’t know if I made the wrong choice, but I was terrified, I thought I was done for if I didn’t try and get help.

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@KiwiKat you didn’t make the wrong choice …the only wrong choice was made by your husband by shaming you! I’m sorry he couldn’t be more supportive.

I’m glad it wasn’t a stroke but in my mind it’s always better to be safe than sorry.

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@qwe I’m sorry you are going through this, I know how it feels and I’m sorry you don’t have the right support system …but I’m glad you found us, we are all here for you …we understand and believe you about your symptoms

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My workplace and bosses don’t believe me I think. It’s hard because despite being so sick I pushed myself to go into work every day because I felt like I didn’t have an illness that others could see or understand. I may have inadvertently made myself worse. I actually remember thinking I wish I had a broken leg then people could see it and I’d get some time off work!! Plus a broken leg gets better in a linear way. We all understand here. In fact it was this site that made me think I had MAV as all my doctors were clueless

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Gosh what a tough day for you, you absolutely did the right thing for you and your little one and don’t ever hesitate in the future if it happens again. Trust your instincts, you know yourself better than anyone. I hope today you feel better :two_hearts: x

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Hi @qwe - sorry you are having such a horrid time - it is tough when our family are not supportive - sometimes they just don’t get it. I would also endorse what @LucyLabrador and @Naejohn have advised which is to take a family member with you when you see your Neurologist / Neuro-otologist. Plus show them this forum! I didn’t think I would ever feel normal again when this struck me down, but 18 months on I am 96% better, so getting the right treatment and advice is imperative. Please go back to your doctor if you continue to feel so low as you need some professional help to help cope with this period of the illness. Also keep in touch with this forum as we all know what you are going through. Jan

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To everyone,

Thank you so much for your kind words. I’m overwhelmed by the thoughtfulness of all your responses, and it’s really giving me much needed courage and support. It’s just been especially hard this past week, as I feel like I have no one to confide in or lean it for guidance. Reading your responses has convinced me that I have a place to look to when I’m lost or dispirited, so thank you all, again.

Hannah

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Love,

Sometimes our best family is the one we choose. You’re our baby now. We’re here for you.

Welcome, Hannah.

Emily

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Thanks for this reference, Lucy. I’m actually based in CA, in the Bay Area, but will keep resources in mind. As for medication, I’m on Sumatriptan, currently, which is a migraine abortive med, not a preventative, as unfortunately my neurologist is not too knowledgeable about MAV despite knowing about the popular preventatives commonly talked about on here (Topamax, Amitriptyline, Effexor, Propranolol, etc.). I’m trying to see if I can convince him to prescribe me some of the others, but I’ve been “spooked” into believing that some of the side effects for most of the drugs listed are pretty horrible…

Thank you so much for your kind words, Emily! Really, you have no idea what this means to me :slight_smile:

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I have a son who’s 17. I would hope that some other mom would extend him kindness when he needed it. It’s hard enough to be young on the expensive left coast without MAV. (I’m in Seattle.) You need and deserve all the love and support you can get.

I know a really good dad in your area who might have a good list of suggested health care providers you could try. Vignesh @GetBetter, suggestions? Or maybe you @napagirl?

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Hi Hannah, I think many others on this forum will agree with me it’s vital you start on a migraine preventative ASAP. It can take months to build up the dosage and feel effect but eventually you’ll start to get relief. I’m on nortriptyline 80 mg, I felt nothing until I reached 70, now I’m having better stretches. No noticeable side effects for me.
The problem with Triptans if used a lot is that they can cause rebound headache. Have you read “Heal your Headache”? It’s a good ressource on migraine to read where the difference between abortive and preventative medications is described and also the migraine diet, maybe you’re already doing that but worth looking at.
You’ve been through a rough few years but that doesn’t mean the future is going to have to be the same !

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“Heal your Headache”
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qwe - Please get yourself some help for what appears to be depression, which is common for chronic illness. Your parents are ignorant and you must stop trying to convince them and focus on yourself. YOU know the TRUTH of the matter. I know it is so difficult when those that are suppose to love and care for us the most, think you’re faking illness. Many illnesses make people look fine on the outside when they are in major pain and discomfort. I was dx’d with Vestibular Migraines & didn’t believe it. It’s a good thing, because I found out through a vestibular physical therapist that my neck is most of what has been causing all of the problems, so neck exercises have improved my condition. It had felt hopeless, but there is always hope no matter what. My daughter had Lyme disease for 7 years & her friends and grandparents didn’t believe her. It is a painful thing, but she had learned that their opinion wasn’t important. Sometimes there is no convincing people. It is important that YOU know the truth and everyone else including your parents can chose to believe whatever they want. PLEASE PLEASE PLEASE, do not do harm to yourself. If you can find a good counselor please do so. They make all the difference in the world for those in your same situation. Also, consider anti-depressants. I am kinda surprised your doctor did not prescribe them for your VM’s. We are all here for you, so don’t feel alone. If you get down, get on here & start pouring out your feelings. xoxoxoxoxo

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