Chronic Vestibular Migraine

Attempts at case management to help with my functional tasks have been unsatisfactory to say the least.
It has led to some medical trauma, especially after negligence that resulted in losing my housing voucher and me homeless (this was back in 2021).
Early this year I had an agency discharge me from case management services because they kept trying to push me to meet with a psychiatrist on a Saturday when I wasn’t comfortable or able to do so. (I contacted the local board of mental health and thankfully my grievance was substituted, however I did not want to stay with that agency).
I tried another agency and it was really hard to get there. I am pretty sure I posted on here about it.
Anyways, I am finally assigned to a new case manager. This one is at the agency I get art therapy from so my therapist is going to talk to the person before we have our appointment. That was yesterday. Today I got a call from him and I asked if he had talked to my therapist. He had not (I didn’t expect him to because it was barely 24 hrs later). So I told him he probably should talk to my therapist before we have an appointment. He agreed and hopefully they will talk and i will meet him next week.
Then I can finally get to things like the tests the doctors have asked me to do months ago but couldn’t make it into the offices to do 🙃
I am so grateful I can advocate for myself and that I have someone to help me explain it all. I also think this is a huge improvement because I really struggle to accept help, even though I need it. My art therapist and I are really working on allowing myself to need help.

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

My psychiatrist and I did gene sight testing this month and today I had my appointment today.
I usually know a decent amount about this stuff, but I am confused (so is she). My “levels” are high and that means I lower doses of medications are recommended but I don’t feel anything on most meds. Even if they are for the first time I’ve tried them.

My cptsd symptoms mostly present as high energy, panic attacks, and a lot of body sensations. I rarely experience episodes of depression and we are pretty sure we have the correct diagnoses. But the anxiety is so hard even though I am doing so much work. I don’t know if it’s cortisol, or that my trauma response is still too high, or if it could be something to do with my thyroid or my liver. Anyways, I’m going to have to email my doctor because my therapist thought something was up physically since my anxiety is still so high.
My doctor is trying me on Limictal now. I’m concerned about issues with my memory because it already is pretty hard due to brain fog.

Anyways, thank you to anyone who reads this. If you can relate to any of this, please let me know. I’m usually good at identifying causes and I’m just so confused now.

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

If something bothers me, I feel itchy until I feel like I have processed it. I need to do a lot of external processing. Idk why. I used to journal but that has been harder for me lately.

So I kind of have been talking about the things that have been really bothering me a lot. You know what I’m talking about. And how it links to my trauma. So I have been taking some action by making phone calls. At two points, I noticed some weird things going on, and I called the news.

They got back with me today; they knew about my history about being unhoused, about my education, etc from the information I mentioned when I called those two times. The woman was so nice and she helped me share my story about being disabled, unhoused, needing benefits, and why advocating is so important for me. She told me “okay, this story will air during the 5:00 news.”

✨✨✨Did I know this was an interview? No. I am wearing a zip up hoodie, dry shampoo in my hair, yesterday’s mascara under my eye from being slept on. ✨✨✨

😂 So I just shared a lot of information about my story on the local news where I grew up. Most people probably don’t know I was unhoused, especially people from my past. I could have decided against it. Especially because my family live here too. But if it gets out to anyone, I really am not upset. I am lucky to share a story about how hard it is because people don’t understand the disability rules. And it doesn’t get brought up enough. And there is a lot of stigma and misinformation I am willing to correct with data and lived experience. I think I have done a good job.

Anyways, let’s see what happens i guess?

#ComplexPosttraumaticStressDisorder #Agoraphobia #PanicDisorder #ChronicVestibularMigraine #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Disability #MentalHealth #CheerMeOn

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