Chronic Vestibular Migraine

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Experiencing a lot/medical malpractice

I feel really confused- I don’t know where I am going.

It is so distressing to be so far away from everything I have known for so long. All of my belongings are hundreds of miles away. Many of these things are tools I use to help with my conditions. So I am struggling and, tbh, suffering, because I was displaced so far away. I should have never been forced out of my city. Because of trauma and discrimination, I have been cut off from all of my services except two over the phone, which is really inappropriate for the level of care I am supposed to be receiving.

I don’t know what to do because I’m only here “temporarily” and by the time I get through a waitlist, I will likely be relocated or about to be. Since first becoming disabled I have not been without therapy. I never asked for my services to be discountinued. It’s a matter of circumstance and the help I am getting is primarily focused towards fighting medical malpractice with another agency.

No one wants to help. I have gone to everyone that “should” help. Either they don’t believe me or, when I finally get the whole story out, they don’t know what they can do and walk away. It is actually seriously concerning- these are overseeing boards who say there is clearly a problem but won’t/cant do anything- and I have proof where the admitted to essentially medical malpractice. The whole thing has been scary.

All I do is recount to people who don’t do anything. They just hear it. They don’t write it down so I just have to keep recounting it. I physically cannot write it down- my brain is all over the place and I shake. But I have told it so many times that someone should have written it down at some point. Now I am tasked with doing this if I want to do anything else. Despite the fact that it makes me sick- I have to do it.

I may need to seek legal counsel. I don’t want to do this. It will drag on. And it’s going to be hard to get anyone to listen. As I have seen time and time and time again. I don’t know what to do because I don’t even know the outcome I want. As a former school psychologist, I thought I would be able to contact the board and they would at least be required to look into it. But that is not the case at all. Where is the accountability?

#Agoraphobia #PanicAttacks #Anxiety #ComplexPosttraumaticStressDisorder #PostTraumaticStressDisorder #Trauma #MentalHealth #ChronicVestibularMigraine #Migraine #Disability #Spoonie

6 reactions 3 comments

So… it’s been some time

Quick update if anyone sees this who has seen previous posts I made:

I am safe. I am staying with my brother and SIL currently. I’ve been here for almost two months.

I have been able to access food because they cook big meals and share with me.

My precious 14 year old dog passed away in the most peaceful way I could ever hopeful. She held on for so long while she waited for me to get safe.

I am really struggling with a lot of symptoms and they interfere constantly with basic functioning.

I am torn between two cities and I don’t have hardly any of my own things. I am working on figuring a lot of things out.

Most importantly… I am continuing to fight the two agencies who violated my rights. I contacted the ADAMHS board again (local mental health board) but I may need to go up to the state level. At least they believe me now. But they “can’t do anything” despite things being “very concerning.” They basically are saying if I don’t seek legal representation, nothing is going to happen to them. So they will continue to give them funding despite me giving them proof of their medical malpractice and me recounting things in explicit detail. This infuriates me; personally and professionally. If there is not accountability, how does a spoonie trust the people responsible for helping them?

At this point- I’m tired of defending my symptoms as actual symptoms to agencies who know these things; I am tired of explaining my symptoms to the people responsible for helping me; and I just want someone to help me through this. Like… an actual doctor who cares and listens and supports and respects and knows something. I’m tired of teaching my health care team when they are supposed to be the experts.

#ComplexPosttraumaticStressDisorder #ChronicVestibularMigraine #Agoraphobia #PanicAttacks

29 reactions 12 comments
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Which foods and beverages trigger your migraine? Which provide symptom relief?

Certain foods and beverages may trigger migraine attacks. Some of the most commonly reported ones include:

🍇 Alcohol
☕️ Caffeine
🧀 Dairy products, specifically cheese and yogurt
🥓 Processed meats such as bacon, sausage, ham
🍭 Artificial sweeteners
🍫 Chocolate

What trigger yours? Share your experiences in the comments below.

#Migraine #Fibromyalgia #ChronicPain #ClusterHeadache #SUNCTHeadache #ChronicVestibularMigraine #ChronicIllness #Endometriosis #mightywithmigraine

3 reactions 1 comment
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Ideas on dealing with depression when you live alone?

Hello all, I am going through a lot of hard things in my life all at once right now.
I am going through a nasty divorce, my ex husband just had his girlfriend move in with him and my children (this is GF number 5, or is it 6?). I only get my children on the weekends as they go to a different school district than where I live. My job has just changed my hours. I have had to borrow money to pay rent becuase I just had a major surgery and was off work for over a month with no income. I’m behind on bills and don’t even get me started on my insurance or what I owe for the surgery. I look forward to having my children on the weekends but they all have Covid and I have been unable to see them for almost two weeks.

I find myself depressed. I am single and live alone and there is no one to care but me if things get done, so they haven’t been. I spend most of my off work time sleeping or staring at nothing or listening to music and I just cannot seem to muster the motivation needed to tackle laundry and dishes or even to feed myself. I know this is temporary but does anyone have any ideas on how I can better motivate myself when I live alone? When my kids are here or if I’m expecting company it’s easy to motivate myself but right now just getting a shower is all I can manage.

Seems some days only my dog Kai gets me out of bed.

#Bipolar1 #BipolarDepression #PTSD #ChronicVestibularMigraine #Endometriosis

5 reactions 2 comments

Looking for people to share their journeys with vestibular disorders with the Menieres society.

Message me if you’re interested in hearing more. Stories and journeys will be shared on the #Menieres society’s social media and magazine! #ChronicVestibularMigraine #Migraine #Tinnitus

2 reactions 1 comment

I’m new here!

Hi I’m SaturnineLeo, I’ve had treatment resisitant depression since 8 years old. I’m here to share my story, connect and relate with other people, learn more information, and share information. If you need someone to vent to, let me know. We can fight this together! #MentalHealth #Depression #ChronicVestibularMigraine #ChronicPain

3 reactions 2 comments

I am very seriously struggling here

I haven’t been posting much. I don’t want advice. Please respect this boundary as I try to describe what I’m experiencing

I don’t understand what is happening in my body but the mornings are… unbearable. I am in so much pain in my stomach that it feels like I am birthing trauma. My flashbacks are palpable. My heart races for hours. I am nauseous and throw up. I only sleep for about 3-4 hours a night

There are so many triggers here and I cannot talk about them. I realized I started shutting down after I vented the first time and struggled with a couple of responses. I didn’t realize that those comments combined with what I was dealing with here would make me reluctant to post

Because I am displaced, my services are over the phone so they don’t feel helpful. I haven’t been able to be in therapy for awhile. I cannot get better because I am stuck because I am displaced from medical trauma. I am currently in the process of two grievances because agencies left me in dangerous situations without help. One has already acknowledged this.

I am having panic attacks about how I will be able to afford rent and utilities and my very minimal “living expenses” with only $900 a month. Even with assistance for rent where I would pay 30%- I will not be able to afford this and will need help. I have been looking for years and there isn’t anything for my “unique situation.” (There are so many misconceptions about disability- please do not imply you know more about my situation than I do)

I started recording things that happen in a day and most of my day is spent fighting for things everyone else gets or trying to figure out my next steps to try to access resources.

I sound like a defensive traumatized victim when I want to sound strong and empowered. But I need people to hear the reality of my life without putting the shame on me.

This has all resulted in me struggling with intrusive self harm thoughts and passive suicidal ideation. I have no plan etc but it is just another symptom I’m noting. I have a safety plan if I need it ❤️

I just want to be heard more than anything.

Today was my birthday and it was really really really hard and deflating. People just simply aren’t listening and are not respecting my limitations. I’m so tired of fighting just to be heard and to get what I need to survive.

#ComplexPosttraumaticStressDisorder #PTSD #Agoraphobia #PanicAttacks #ChronicVestibularMigraine

8 reactions 6 comments

Legit question

If abuse made a high functioning and successful (albeit relatively anxious) professional “mentally ill,” what does that abuse make those who did the abuse?

#Agoraphobia #PanicAttacks #ComplexPosttraumaticStressDisorder #PTSD #ADHD #ChronicVestibularMigraine #Disability #MentalHealth

33 reactions 14 comments

Some final notes going into this grievance with the CEO

When I first read the information I got back from my grievance I thought they were saying they didn’t believe me
They were saying they didn’t find evidence
That is almost worse

I have evidence
They have evidence
I have witnesses, including people at their agency that I continue to work with
To say that they didn’t find proof of some thing that I lived through that caused me. This much trauma is… I don’t have words for it; it’s almost worse than the trauma itself. That saying that all these symptoms that I’m experiencing all of the time or for no reason.
It’s completely gaslighting me
And I don’t use that term lightly.

They refused to ask my therapist for information. They specifically said we want to keep it in - house.
That is not OK for an agency to do. That’s unethical.

Also- they admitted fault about times they didn’t provide services but haven’t owned up to how inadequate those services were when I did receive them. There wasn’t any outcome from any appointments I did randomly have for the last two + years.

Here is a random text I’m throwing in here for safe keeping:
I still may follow up with disability rights and adamhs board at some point because of how this all went down. It makes me sick that they told me they couldn’t find evidence and that they repeatedly said “idk what you want us to do” until I pushed back on that. That isn’t transparent and that is really sketchy. They are presenting non facts as facts. They are pretending there aren’t options when there are
Also- ADAMHS and disability rights should have believed me and helped me when I called them all of those times. I know I presented in crisis but they immediately dismissed me and didn’t even look into any of this. This could have been so much shorter. I should have never been displaced again (or ever- considering I was in the system working with agencies and regularly participating in services).

I want to know what Kelsey (psychiatrist) reported and how that wasn’t evidence. Because her nurses and Kelsey are the ones I checked in with every month and said I was unsafe and I trust Kelsey.

#Disability #ComplexPosttraumaticStressDisorder #PTSD #ChronicVestibularMigraine #Migraine #ADHD #Agoraphobia #PanicAttacks #GeneralizedAnxietyDisorder

10 reactions 1 comment

Here is what it’s like to be displaced as a chronically ill, disabled person

I am not looking for advice

I am also hoping this post doesn’t end up with circumstance-shaming or victim blaming

I ended up homeless because of medical negligence. I was receiving services from multiple agencies and I still “slipped through the cracks” (I screamed through the gaps) and ended up as one of the most marginalized and stigmatized populations. Despite my background, education, and protective factors.

This is hell
Being homeless means you always look like you’re asking for help
It means people assume you are a criminal
It means people assume you have to come clean from a substance abuse disorder

I spent my life protecting myself and restricting myself so I could have a life where I could live out of poverty.

I cannot manage my triggers
I have no way of grounding myself
I cannot predict anything
Everything is a fight

If I have a migraine- I have to deal with whatever the household I’m living in is doing. Which means I could end up in the hospital. It doesn’t mean minor inconveniences. It means danger

Speaking of danger, the number of times my life has been in danger is countless

I cannot keep track of my stuff because i never have a system that lasts longer than a few months

I cannot get a routine

I am expected to over perform and do things on a schedule that I cannot control

Advocating for myself looks like arguing

Anyway or time I spend money- I am judged. Even if it’s food. Was it the most cost effective?

I am constantly asked prying questions

I have no privacy
Everything i have is on display

Every symptom I have is present. I am always being watched.

Unsolicited advice is forced down my throat

I cannot escape triggers at all

I have been in abusive relationships against my will

I have lost all of my friends because they cannot relate

There is honestly very little anyone can or will do to help you and you have to sit in distress

I am physically sick every morning for hours due to trauma and being unable to predict my day

I have to explain why I’m always throwing up

I cannot afford food and food is always around that I cannot touch.

I have no way of predicting for any future beyond the current moment so I cannot even imagine how much longer until I can actually start treatment so one day maybe I can be more functional and independent.

Imagine how much control you need to manage your chronic conditions. It gets taken away when your home does.

#Agoraphobia #PanicAttacks #ComplexPosttraumaticStressDisorder #PTSD #ChronicVestibularMigraine #Migraine #GeneralizedAnxietyDisorder #Grief #Disability #ADHD

15 reactions 9 comments