Chronic Vestibular Migraine

Been struggling with different symptoms for 3 years now. First diagnosed with chronic migraine, then ebv, then pcos. Lately things hadn't been adding up. We're suspecting pots, perhaps lupus, or other autoimmune. It's been kinda tough... the anxiety is the worst:(

#PolycysticOvarySyndrome #POTS #AutonomicDysfunction #ChronicEpsteinBarrVirus #Migraine #ChronicVestibularMigraine #Undiagnosed #Lupus #ChronicFatigue

What's hardest for me as an undiagnosed patient is the feeling that I have no place. I'm too healthy for the sick but too sick for the healthy. I'm expected to do everything everyone does, keep functioning, in a body that is just broken. I don't have a valid medical ticket to validate and excuse myself

#Undiagnosed #POTS #AutonomicDysfunction #ChronicFatigue #Migraine #ChronicVestibularMigraine

I am not doing well. My anxiety has been ramped up, my panic attacks have been pretty bad lately.

The cost of living is becoming really burdensome. I have already felt like I am a burden because I cannot work and only have an income less than $1,000 a month from SSI. I’m 39 years old and want nothing more than to manage my conditions and return to work in some capacity.

I have been trying to do a few different approaches for trauma therapy and my trauma therapist is amazing. Unfortunately she doesn’t work within the insurance system. We were able to afford the private therapy for awhile but now we cannot. I have luckily been able to get a grant to cover the last several months, but that will run out soon.

I am going to have to stop or significantly reduce my trauma therapy. I don’t know how I am going to be able to work through my trauma, but I’m just going to have to.

My bf asked to borrow some money from his mom and she lectured him about how I need to work or move in with my mom (and if you saw my more recent post about my mom- we all know that is not an option). He has never borrowed money from her before, and we have told her in great detail my health problems. I had a feeling she wasn’t listening because she never really acknowledged what I said, and would just make a comment about something else.

I cannot tell you how infuriating it is to be seen as an object that can just be moved so me and my disability are someone else’s problem. Obviously and thankfully, my bf is not going to stand for that. But the hurt is still there because people don’t see my worth and haven’t seen I became disabled. The stigma is really bad for people with disabilities and it’s honestly getting so much worse.

The idea that I should just move somewhere else is a common refrain I have heard since being disabled. My friends and their families kept deciding what was an option for me and often would just tell me to move somewhere else, which would not fix my problem at all. It’s hurtful, so hurtful, that this is coming up again. I am so tired of not feeling like a person because I have chronic conditions. I’m tired of the way people have treated me. I’m so upset that this is coming up again.

Before I became disabled, I was respected by my friends and family. I have no idea how my value seemingly did a 180 because of my disability status. And honestly- if health insurance wasn’t as big of a deal here as it is, I would have significantly less things to worry about. I would be more likely to return to work sooner because I wouldn’t be worried about how much it costs to keep me alive and if the job I take will provide adequate and affordable health care for someone who will still need treatments, medicine, and support on a consistent basis.

Not only that, as a previously unhoused person, I am very triggered about the comments and policies that are happening around the United States about the unhoused population. I am so scared I’m going to end up homeless again. So scared. And this time, I wouldn’t just go hungry and without adequate living conditions. Social safety nets and programs to help people like me already were lacking (especially with housing) before these cuts. Now there is talk of sending the National Guard to other cities, including in my state.

I went downtown with my boyfriend this weekend and we saw people who are unhoused sleeping where they could; and i couldn’t help but feel so scared for them, and for people like me. I am so scared.

Please note this is not a political post. I am not engaging in a discourse about how my triggers are related to politics and what my reality is. I am also venting and will talk to my therapist about this, as she has a bigger picture of my circumstance and options.

While i appreciate advice, today I need support.

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

Hi!
I have a question for other people with chronic illnesses who see a number of specialists.

I have two therapists, a psychiatrist, a case manager (finally!), a primary care doctor, a neurologist, and an autonomic specialist. Most of my symptoms come from unrelenting panic attacks and high anxiety which trigger severe intractable migraines. The autonomic specialist is helping with the symptoms more related to pots- movikity, nausea, lightheadness, dizziness, fast heart rate, etc.

I’m on a number of medications to treat multiple conditions. I am medication hesitant; my providers know and I discuss my fears with the people who prescribe anything so I can feel comfortable taking it.

There have been far too many times where someone (a medical professional) who doesn’t understand the complexity of my conditions and the severity of my symptoms try to tell me I’m on “too many meds.” Which just starts the fear all over again. I end up spending my sessions trying to talk to my therapist about if I “really need it” or if I am “damaging my brain.” I talk to my psychiatrist about seeing if I can reduce my medication yet (I cannot, we still are trying things out). Not only that- probably almost half of my meds are as needed- especially for panic and migraines.

I may have told this story on here before, but last year a pharmacist wouldn’t let me pick up my adhd medication unless I explained why I need it. (BTW- I specifically request the psychiatrist test me for this because I’ve had the diagnosis but never was tested, and i wanted proof before I started meds again). I told him to talk to my psychiatrist because she advocates for me and I’m tired of explaining over and over again why I am on what meds. I was able to pick up my meds by the end of that day and my psychiatrist reported him because there was no interaction and I have been taking these meds for awhile and picked them up from that pharmacy.

Last week , someone from insurance asked me to explain my meds and why I am on them. And now I’m recycling these fears and know that my trauma therapist and I are going to have to work through that fear again.

I’m going to type out a document with all of my medications and what they are used for because it really does activate me and make me less likely to take my as needed medications like I’m supposed to.

My question is: Does anyone else experience this frequent request to justify their medications to not just all the service providers, but also other people who are “involved” but don’t know me (pharmacist, insurance people, intakes to get new services)? Does anyone else get triggered when this happens? Is it just me?

Thanks to anyone who read through my long essay on being afraid to take my as needed meds, again. ❤️

#ComplexPosttraumaticStressDisorder #MentalHealth #Agoraphobia #PanicDisorder #ADHD #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Migraine #ChronicVestibularMigraine #ChronicIllness #Disability

I am not telling many people I know about this, but I decided to study to see if I could pass the exam to renew my school psychologist license.

I still am not able to work, as I am still working through various things and I have a lot of symptoms. I am still disabled.

However, I do want to see if I can get my brain to start performing more work/school tasks, if that makes sense. I have weird gaps in my functioning that I am hoping that EMDR will help (mostly things tied to trauma from being homeless and violations of medical rights). I still struggle to concentrate on things, and understand things. But if EMDR works like I hope, my panic attacks will be reduced significantly, I won’t have as many flashbacks, and I won’t be as dysregulated. This will obviously take time. I also have no idea what is going on with my physical health conditions.

I don’t know if I will be able to return to work any time “soon,” or if I want to return to the same field. However, it is a profession that is high in need and it’s kind of a protective factor for me, as well as a test (literally). But one step at a time.

#CheerMeOn #MentalHealth #Disability #ChronicVestibularMigraine #Migraine #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #ADHD #GeneralizedAnxietyDisorder #Agoraphobia #PanicDisorder #ComplexPosttraumaticStressDisorder

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