Chronic Vestibular Migraine

Hi.

I am currently working on learning to relax.

Like truly learning to LET myself relax. This isn’t about the skills. I know “what to do.” My brain just doesn’t let me.

I just recently found out that I “likely have POTS” and I have had chronic migraines for years (currently disabled ). I just kept doing stuff because I didn’t want to miss out on living my life and being outside. This is the first summer I’m trying to listen to my body and stay out of the heat until I really know what’s going on and what works to manage symptoms enough so I don’t flare up. But it’s hard for my adhd and panic attacks.

The thought challenging of that guilt or sadness about missing out is really hard. I know it won’t be this way forever, but it’s hard right now.

#AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome
#Agoraphobia #PanicDisorder #ADHD #ChronicVestibularMigraine #Migraine #ComplexPosttraumaticStressDisorder

I hate somatic symptoms. They override every rational part of my brain and take over. It leads to panic attacks and dysregulation. I dissociate more and cannot focus. Even my coping skills (which are diverse and usually very helpful) are too hard for me to even access. My brain cannot stop focusing on the fear. I feel like the only lighthouse operator (what are they called), hypervigilance kicking in because a storm is approaching and I am the only one and must be ready. Complex ptsd- you know?

Lately I have been extremely anxious. We all know why. I have been posting about it. And as things are progressing, it is leading to more somatic symptoms.

It is triggering emotional flashbacks that leave me paralyzed- unable to think about anything other than making sure I am safe. It reminds me of the somatic symptoms I got when I was calling agencies every morning begging for the resource of housing because my friends were kicking me out, again, because they didn’t think it would take this long for me to get housing. The disability system is really hard to survive. And the focus of health care now in its target- how could it not trigger these flashbacks.

GoFest, one of my favorite annual events I have participated in during almost every year despite my situations (which we have seen have been pretty dire at times), was hard for me. I also have been having an increasingly hard time taking care of myself, sleeping, brushing my teeth, leaving, thinking, showering. I am terrified and activated. My medication isn’t working. I’m throwing up purely from anxiety. I literally just throw up now. I am coping through all of this. My therapists have nothing but validating things to say. There are no changes that can be made. I am just existing. I’m not sad. I just am anxious.

And angry. Thank you to my friend who reminded me of this recently. I am angry that my life has become a system of begging for resources when I could be doing so much more! I have a great education and was a great school psychologist- a profession that consistently has openings because the demand is so great. However, because of a combination of trauma and chronic illness, I am disabled and have to spend my time and energy on fighting for resources that are now being fought over in politics. This isn’t about politics. This is about basic human needs.

I have been trying to get well, with so many inhumane barriers, while sick, just so I can return to work and have a normal life. I don’t want money or status or power. I just want a normal life. I want to live with dignity and safety. (People who have been read posts a couple of years ago probably know these barriers)

My boyfriend told me my words and thoughts matter. That I’m a good advocate. He tells me that for every person who does respond to my post, there are probably five others who do read it. Which is why I took the time to post today.

I am so scared today. Thank goodness I have both a therapy and a psychiatrist appointment with my wonderful providers.

#MentalHealth #CheckInWithMe #ADHD #ChronicIllness #ComplexPosttraumaticStressDisorder #Disability #Anxiety #Agoraphobia #PanicDisorder #GeneralizedAnxietyDisorder #AutonomicDysfunction #Migraine #PosturalOrthostaticTachycardiaSyndrome #POTS #ChronicVestibularMigraine

This is a vent- I already have a game plan of my next steps.

Case management has been one of the biggest struggles since I have become disabled.

I’m not going to get into all of the reasons I need a case manager but most of it has to do with getting through the disability system without losing that life saving support (because it’s really hard to keep up with the paperwork if you have been homeless) and to get to appointments and advocate for myself because of medical trauma and panic attacks that make it so I don’t get the treatments and tests I need when I need them- no matter how much I try.

I have had to open cases with the local mental health oversight agencies because of two agencies messing with my case management services. Both times, the agencies admitted they were wrong, but the harm was already done.

I have been without a case manager for months after I was discharged without warning by the most recent agency when I told them I wouldn’t see their psychiatrist because I already had one and they agreed to it but went back on it a month later without telling me.

I asked for a peer support person because someone told me that may be more appropriate, but I cannot because I don’t have a SUD.

I went to a different agency last month and the intake was so bad I cried through the whole thing. They didn’t want to know about anything with my physical health or conditions or the medications I take for them. Then they told me I was too high functioning and may not be eligible for case management. I said “I have had case management from other agencies for almost 8 years, I went through this entire intake and you had me share my entire trauma history, i am telling you exactly how my disability impacts my ability to perform these necessary responsibilities for my health, and just because you can’t see my disabilities doesn’t mean they are not there. If they were on the outside of my body then i guarantee I would qualify.” I didn’t think I would hear back from them.

Well I did. I had an appointment today and I spent the week in high anxiety state because I don’t want to go through the justification with someone else again. I “look” fine, i know. So after three separate conversations with my therapists, I made it into that office for a second time, trying to take deep breaths. I made it on time and I found out that they scheduled it at the wrong location. I told them twice I needed it at a certain location. I had my intake there. But they assigned me a case manager at a different location and didn’t tell me when they called me. So I went to the place where I went the first place, the place I requested originally. And the person wasn’t there.

I do not think providers realize how hard it is for people with disabilities to get to these things. I’m tired of explaining and justifying it all. I’m also worried about the upcoming vote on the budget bill that will cut funding for health insurance and make it more cumbersome to complete the already confusing necessary paperwork. (This is not a post inviting others to argue about whether or not this will happen- I am stating a realistic fear that I have checked with my therapists, and is increasing my anxiety about this situation because it feels urgent I get as much done as soon as possible since this is being proposed in the US).

Anyway, thanks for listening.

#MentalHealth #Disability #ChronicDailyHeadache #Anxiety #Agoraphobia #PanicDisorder #ChronicVestibularMigraine #CheckInWithMe #ADHD #AutonomicDysfunction #ComplexPosttraumaticStressDisorder #POTS

Well… I didn’t think this was going to happen.

I sometimes talk about the grief I have from going no contact from almost everyone from my pastz I had a very wide circle, and unhealthy best friends and toxic family members, surviving dv and homelessness- it just didn’t work that I felt comfortable knowing what I ended up knowing later. Specifically it has been hard to not be an aunt. I went no contact with my sister who was my first abuser. It was while the children were minors. I didn’t know what would happen but my sister was making my cptsd harder to manage after it being triggered by dv. I can feel it in my nervous system when “vibes are off”- someone please tell me this isn’t in my mind because the logical side of me is like- what do you mean???
Anyways very tangential- so my niece got mad at me when I was displaced to Cleveland for an unknown period of time and didn’t tell her. Now at that period of time I was no contact with my sister and really weird contact with other family members, I was still unhoused planning to go back to Dayton- and didn’t want that information passed along. I understood her point and told her that it wasn’t a conversation I could have (or something) and I am so so so sorry. I validated her feelings.
So yesterday I got a message from my niece on IG. She had unfollowed me- I refused to block her. She is still young and hasn’t done anything out of the range of normal for her development and knowledge of the situation. I am so happy! Although I was very sad that she grew tired of my sister’s abuse. I am not sure she knows that’s what it is yet. She moved out and lives with her boyfriend. She is over 2 hours away and I remember that liberty when I moved further from reach of my family. She told me she is “no contact” with everyone but my mom and my mom’s husband. I don’t know what she had heard about me, or what she believes about me. My sister’s abuse became worse when I became disabled even though we live hundred of miles apart and never asked her for anything.
I am worried about my niece though. She seems lonely. I hope when she starts working she gets some social time. I’m trying not to be the overexcited aunt who fell out of the family- but here I am.
#Agoraphobia #PanicDisorder #ComplexPosttraumaticStressDisorder #ADHD #ChronicVestibularMigraine #Migraine #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome

Something I talk about a lot is how much I am given as a U.S. citizen on SSI. This is relevant because it has put me in situations that caused me more trauma (homelessness, food insecurity, and very few resources and options to get and stay well). I receive $970 a month and I used to get $75 a month for food assistance- less than one dollar per meal, per day. Not enough to survive on, and definitely not enough where I had any room for spending any extra money- I have been afraid to drop my food because it would mean i wouldnt have anything to replace it with, unless I cut into the next day’s food). When I was living alone it was not possible to afford my life- even the basic necessities. The options for assistance never panned out for me due to a number of factors (where I live, there is a large population of people with substance use disorder where resources are funneled to bc of the need; since I do not have that, or children, I was rarely accepted for things that most people would think i qualified for even though I am disabled- I still continue to get denied for services I need today because I still don’t have those factors).

The other side of the coin is I have an Ed.S., spent 7 years in college, and have a student loan debt. I was the first in my immediate family to graduate from high school, college, and attend and graduate from grad school. Something that used to be seen as an accolade but not so much because it seems not to “count” now that I am disabled. My family repeats the lines of “if you take out the loans you have to pay them back.” Which of course I planned to. I also don’t really understand why this mentality exists when many people in my generation/SES were told if we don’t go to college we won’t get out of poverty, did not understand financial literacy, and these decisions were made to feel urgent in our late teens and early twenties. And also- how are we supposed to predict our lives? This isn’t a car loan. Some can be more like a home loan- especially with the interest rates charged and how they get moved around.

Anyways, I recently found out that my student loans can actually be forgiven because of how long I have been disabled. I will be submitting my application as soon as possible (60 months from my disability date- even though I was disabled before this- I had to take out my retirement and spend it down first). I was able to speak with someone today about it and I feel very relieved.

I know this is a somewhat unique intersection (both as a US citizen who had to take out loans for college, and being disabled under SSI where the rules are extremely restrictive), but I wanted to share it with anyone else who may also share that intersection.

#PosturalOrthostaticTachycardiaSyndrome #Disability #ChronicIllness #ChronicVestibularMigraine #Migraine #Agoraphobia #PanicDisorder #GeneralizedAnxietyDisorder #ComplexPosttraumaticStressDisorder #ADHD

I am having a hard time tonight.

My bf just started a new job recently and now I am trying to adjust to a new schedule.

To catch anyone up: I was unhoused for a couple of years and my complex ptsd got really bad. I have had severe panic attacks since then. I also had to move cities across the state and no longer access my “safe places” and my circle of friends. And after all of this I am having new symptoms pop up so I am having mobility issues. This is all being addressed in therapy- so I’m just venting. 😂 which coming back up to this- it did help.

I do a lot of things- I volunteer, attend groups and therapy, I am working on renewing my school psychologist license, I paint, I advocate, I am a heavy hobb-iest (lol I dabble in a lot of things)- I keep myself busy enough while still having space and time to process things. The problem is with these “extra symptoms” -the ones I have now because of the extra trauma of being unhoused- I have a hard time being at home. (I’m working on it in therapy!!) I didn’t have these in the evening- when my anxiety ramps back up- by myself because these came from being unhoused. I also live in a “new” city that’s across the state from my old city. I am working on building my social circle but with my symptoms it is challenging. I also am working my way with some new diagnoses and figuring out supports I need for accessibility- which kind of factors into the panic of going places. I’m aware of all of the parts of it- unfortunately 😵‍💫 it’s just that the logic doesn’t work for the panic. I wish it did though. 😂 that would be really nice.

Anyways- the whole point of this is I have a hard time coping with change and unstructured time. I know what my therapists keep telling me- I am doing all the right things and it’s just about coping through it. But that really sucks sometimes 🫠🙃I probably should write some affirmations or something.

#Agoraphobia #PanicDisorder #ADHD #ComplexPosttraumaticStressDisorder #GeneralizedAnxietyDisorder #ChronicVestibularMigraine #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #CheckInWithMe

Sigh

I’m just going to talk about this here because I need a place.

A senator from the United States held a town hall where constituents asked about the proposed cuts to health insurance and food benefits. Someone stated “People are going to 💀.” She responded “Well, we are all going to 💀.”

It got worse. It blew up. She put out a sarcastic apology video. At the end she stated "But for those that would like to see eternal and everlasting life, I encourage you to embrace my lord and savior, Jesus Christ,"

It was so distasteful and heartbreaking. This is what our politicians are doing while people are terrified they will lose life saving resources.

I remember during COVID when hospitals were having to make hard decisions between whose life is worth saving. As a disabled woman without children, I would not have been one of the priorities. I remember that feeling.

I had that same feeling when I had to fight for housing. My life wasn’t prioritized. I was unhoused for almost two years.

This has the same hit. I’m tired of the insults by the people who are supposed to represent us. I’m tired of having to defend my worth for basic resources. I am tired of having to explain why leveraging health insurance isn’t going to fix the deficit with people who aren’t going to be impacted by the cuts.

I know my worth. I contribute to my community. I educate others. And I advocate so hard for myself and others to people in office. I am fighting for people who don’t believe they will lose health care, I am fighting for people who don’t believe me, and I am fighting for myself to remain covered. I continue speaking out about what is happening, even when comments make me question my worth and my sanity. Of course I am scared. Of course I am mad.

***Please do not respond to this if what you have to say is “it’s only waste, fraud, and abuse” or by minimizing what is actually happening and under threat. I am done with the misinformation and the rhetoric and the propoganda. If this sounds mean, it is because I am mad that this is continuing to happen and people are still dismissing me (not just on here).***

#Disability #ChronicVestibularMigraine #Migraine #ADHD #Agoraphobia #PanicDisorder #GeneralizedAnxietyDisorder #ComplexPosttraumaticStressDisorder #POTS #PosturalOrthostaticTachycardiaSyndrome #MentalHealth #CheckInWithMe

Hi.

I’ve been thinking about how to bring this up here because I am feeling a little alone in this mindset and I am not sure how others who don’t mention religion in posts feel.

I am not affiliated with any specific religion, I also am not an atheist. I didn’t grow up with religion in my home, but enjoyed learning about it. I went to catholic universities; not because they were catholic, but because they offered my programs and I liked the universities. When people say they will pray for me, I usually appreciate it. In my head, it’s similar to when I tell people I will think about them/hope for them. It shows that you are holding space in your head for another person- whether someone does a religious ritual or a personal one (loving kindness mantras are kind of what I do).

However, lately religion has been in the news a lot more. It’s hard when a religious majority in a country where religion is supposed to be separate from laws is trying to incorporate religion into public schools or making laws about my body. It’s hard when I need action but I am met with prayers. It’s hard when people tell me that God will have my back and things will work out when I know that a miracle isn’t going to happen and I have to take action. When unhoused, I did not become housed by praying; I became housed because I fought for my life and advocated for myself. Sometimes it’s hard to talk on here because of this.

It feels uncomfortable to post this because I may be in the minority here. I just really don’t know. Usually these comments don’t bother me, but I think the push of values like pro-life and religion in our public schools has been wearing on me. I also know there are people who have experienced religious trauma. I know that it makes me uncomfortable when I vent and I am met with people talking about a God I don’t necessarily connect with. I know that prayers are fine for me, but comments about things being in God’s hands are not helpful because I have had to fight for so much of my basic needs.

Again, this isn’t an anti-religion post. I am so glad that people have faith in and find comfort in religion. I’m curious, though, if anyone else has felt this way.

Thank you in advance!

#MentalHealth #Agoraphobia #GeneralizedAnxietyDisorder #PanicDisorder #ChronicVestibularMigraine #Migraine #ComplexPosttraumaticStressDisorder #PosturalOrthostaticTachycardiaSyndrome #ADHD

I know that not everyone is going to agree with me, but I need to speak about it. I am speaking about health insurance in the US, as this is a community of people with health conditions. I am not here to fear monger; rather to educate. I am voicing my concerns and fears, again.

In the United States, healthcare for vulnerable populations is under threat. This is a simple fact that can easily be fact checked through a simple google search. The “Big Beautiful Bill” has already passed through one branch of government and is on its way to the senate. There are huge cuts to Medicaid and Medicare being proposed, which will absolutely impact citizens; both those who receive these benefits, and those who get healthcare from places that receive money from these safety nets.

The only people in office who are saying this is to eradicate “waste, fraud, and abuse” are lying. I contact people in office and have been told me this, after pushing back on the rhetoric. Independent news sources confirm this as well. The bill was initially presented as something only impacting Medicaid. Many sources were confused because it would be impossible to get the funds they are requesting by cutting Medicaid alone. It came out the day before the bill was voted on that Medicare cuts are also in the bill. As well as money for food assistance. Again, this is being presented as cutting off assistance for people who are abusing the system. There is not $8 billion dollars of fraud. The money they are “saving” is going to give tax breaks to the wealthiest in the county- again, a simple fact that can be googled and confirmed through reputable sources.

It is important to understand what propaganda is. It is important to educate ourselves on things like media biases, types of language, and how to discern credible sources and information. It is also important to know when you are being lied to and/or manipulated. Misinformation is rampant- including what comes out of the mouths of those in office. This is not to say other administrations have been perfect and I’m not here to discuss “what about ism” because that is taking away from what is right in front of us.

I don’t know how many people here are US citizens that receive government benefits. I do know that my lived experience in the system has shown me how much people in the system are dismissed and scapegoated. I also have learned how hard it is to get the correct services and resources as a disabled citizen. If you haven’t lived within the confines of the US disability system, you may not understand how fragile these supports are.

I am going to reiterate this point- I am disabled and receive less than $1,000 to survive on (I am on SSI). Housing vouchers are so hard to get that many people are homeless for years (see my posts from 2021-2023). I also was only receiving food assistance that totaled around $70 a month the last time I checked. Most people do not get approved for disability right away and have to fight in court to receive this assistance that isn’t even enough to survive on.

Hoping this goes away will not help those who are at risk. And, I am not trying to be offensive and this may lose some friends, prayers are not going to solve this. People suffer all the time and it’s not because they didn’t pray hard enough (absolutely continue to pray if it helps you). Disabled people have been fighting for their rights for a very long time. We have to advocate for ourselves, in whatever capacity we can. I know I cannot do things like attend protests. Personally I am calling my senators and representative as often as I can. My senators do not answer or call me back- which is saying a lot about the state of the union. I have been contacting them on social media and find many others doing the same because constituents cannot reach the people who are supposed to represent them. I am staying informed enough but not overconsumed. I am bringing my concerns to my therapists who help me navigate these by action. If anyone has been doing other ways of outreach/advocacy please let me know. I would love new ideas to continue to advocate for those of us who need it.

As an ending note- I am a Taylor Swift fan and I am hoping that she drops Reputation TV today. 😅

#Disability #ADHD #Agoraphobia #PanicDisorder #ChronicVestibularMigraine #Migraine #ComplexPosttraumaticStressDisorder #PosturalOrthostaticTachycardiaSyndrome #idontrememberwhatelseihaveatthispoint