Chronic Vestibular Migraine

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I’m struggling greatly from Fibro, ME/CFS/, Chronic Migraines, and the latest diagnosis of Vestibular Migraines. Vestibular symptoms are affecting my functioning greatly. I deal with almost constant dizziness/vertigo, blurred vision and nausea. I’m thinking about getting a cane to see if that will aid my balance but I’m only 45 and my legs still work, so I kind of feel silly about walking around with a cane. Others around where I live do see me outside of my apartment when I’m capable and I’m concerned I’ll get a lot of questioning/ disbelieving looks or comments given that I don’t look disabled or elderly. I’m also not sure if a cane would be useful for vestibular balance symptoms like it is for someone with a knee, ankle, hip or back problem? What do you all think?

#ChronicVestibularMigraine
#ME /CFS
#Fibromyalgia
#chronicmigraine

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❤️I received really good news ❤️

I applied for financial assistance to help cover the cost of one of my therapies, which isn’t covered by insurance. For some reason, my health insurance decided I wasn’t eligible for trauma informed care despite a diagnosis of complex PTSD 🙃So my bf and I have been paying out of pocket, which is a huge financial burden.
I wasn’t approved last quarter but I reapplied and was approved this time around!
My weekly therapy sessions will be covered by this award for 17 weeks. It was so needed, not just financially, but I needed a boost. I have been so scared about possibly losing my health insurance which covers my other care.
It’s a short, but much needed reprieve. It also was extremely validating to hear why I was selected.
I have been working really hard on establishing a good care team. I’m a diligent client, attend my appointments, take things seriously, and I work really hard to reach goals of lowering my trauma symptoms. I also have been working to establish some sort of community after being displaced. I have been volunteering when I can. It sounds like my therapist has communicated this to the organization both times I applied. It feels really good to hear someone recognize the hard work I’ve done- because I guess I wasn’t really putting all together myself.
I’m really proud of myself, and I’m so incredibly grateful for this reprieve.

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

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I am a citizen of the United States and I am so scared right now

This is terrifying. I am scared for everyone in this country. I feel so ashamed to even say that I am an “American.” I am scared of the global costs (financial, environmentally, politically, etc) and the consequences to other nations.

I’ve been so mad recently. I signed up to do more volunteering, specifically at a place to support those who are directly impacted. I do not know what else to do. It felt like something, a step forward into a widening gap of needs for people who live here. But now I do not even know how much longer I will have my basic needs met.

I feel like I’m dissociating, depersonalizing. Either that or I’m in a dystopian novel. A local restaurant raided, another report at a place I used to play Pokémon go. People swept up. It doesn’t make any sense. I feel like my story doesn’t make any sense. They said it would only be criminals. I didn’t believe them. I don’t believe them now.

I am disabled. I am scared I am going to lose government assistance. I am scared I will wake up one morning without insurance and not be able to refill my medication. Right now, the news is saying coverage is not impacted. But these pauses will impact my services. And when I have that conversation, I am told it’s not happening yet. And I feel like I’m being hushed with false promises, because we all are scared it is inevitable. I don’t believe them.

I survive by accessing these supports. I survive at the mercy of this government.

I am so sorry to anyone who is being impacted by this. I did not vote for this. I do not support this.

I don’t even know if I am allowed to say this stuff on here. I just don’t know what else to do.

#Disability #Agoraphobia #Anxiety #PanicDisorder #ComplexPosttraumaticStressDisorder #ChronicVestibularMigraine #Migraine #ADHD #ADHDInGirls #Trauma #MightyTogether #CheckInWithMe

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New medication change- feeling nervous

Hi all,
I started a new medication this week. It made me really tired, I slept for like 20 hours in one day, and so I emailed my psychiatrist and she told me to take it at night instead.
I’m worried because it’s a class of medication that I haven’t tried before. It’s a tricyclic, an older anti-depressant. I don’t like to take medication that is sedating (and most meds don’t really sedate me anyways). And it also has more side effects than more commonly prescribed antidepressants (SSRIs and SNRIs), which have not helped in the past.
I don’t have depression symptoms but my anxiety is absolutely a mess from trauma. I have felt very hyper aroused. I have a lot of panic attacks and it’s hard for me to organize myself to perform most daily tasks. It’s hard to explain how paralyzed I feel from my panic and trauma symptoms. I get triggered easily.
So we are trying this. I don’t want to feel super sedated all the time so I am hoping it wears off soon. If it doesn’t, I’ll have to talk to my psychiatrist about something else.
Wish me luck, please! Thank you all!

#CheerMeOn #CheckInWithMe #Agoraphobia #PanicDisorder #ComplexPosttraumaticStressDisorder #ChronicVestibularMigraine #Migraine #ADHD

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I care about me and I just really need a good vent

Yesterday was Christmas.
*sigh*
It was mostly really good. I’m going to type that after to decompress.
To vent-
My bf’s brother has very different perspectives than both me and my bf. He has different opinions. And I try hard to be open minded- but he doesn’t. He is intentionally controversial and finds it fun to get under other’s skin. He says stop taking things so seriously and boldly asserts he is more intelligent than most people and has everything figured out (he really says this).
What frustrates me is the differences in our experiences and how he insists that he knows more than everyone. I am not trying to place judgement or blame or anything on him- but he has a really narrow perspective on life and doesn’t respect many differences. He doesn’t have experience nor the desire to leave the circle he has had his entire life. He still lives at home with his mom, works with his dad most weekends, etc. By no means is this to say he is privileged or hasn’t struggled- what I’m trying to get across is that he has never lived on his own or experienced the independence that is necessary to have a deeper understanding of what I have struggled with to have conversations with me where he tells me “how it is.” Or the experiences I have had- where I moved out on my own early and had to become super hyper independent early on and learn how to take care of things very early. I also have traveled to other countries, gone to college, held leadership positions, had a career where I was actually evaluating intelligence and working with complex data. He also doesn’t recognize the work I’ve done or experiences i have had and often tells me how things that relate to what i used to do “actually is.” And then when i explain how it legally is, that’s also when I apparently take things too seriously. I just get frustrated by people trying to explain my situation back to me “from a different perspective.” When my “situation” was inexplicable. You cannot explain away medical trauma, dv, homelessness, etc.
When talking about general psychological/sociological/somewhat political things like struggles US citizens face, he told me yesterday “the thing is, nobody cares about you,” in a very apathetic way. He meant it about “people like me” bc he knows the general stuff I’ve experienced. It wasn’t necessarily targeted. Explaining how there are always bad doctors etc. And I tried to tell him basic human rights are not really the same thing as people not caring- it’s things people need to survive that are supposed to happen but don’t. And he just says that’s how it is. He is also nihilistic and follows the mentality that everything is doomed - which is really bad for my cptsd- especially bc I truly believe I can become homeless again at any time. I am working on learning how to FEEL safe. I have already been made to feel like no one cares.
****But what I wish I would have said is “but I care about me. And I showed that to myself by fighting and advocating until I found people who also care about me.”***

Okay but let me lighten it up by posting some happier things (thanks for reading that vent. I needed it!)
I got to see two of our kittens that Chris’s mom adopted! They are almost ten months now and they are huge. Christmas felt nice this year. It was quiet and cozy. We laughed at the pets. The lights were low. We laughed when my bf’s mom forgot to mention there was pumpkin pie and came out a couple of hours later with some and we all stopped talking and watched her. I got a migraine but i have an ice pack I keep there now- so it made me feel more like I’m expected rather than just showing up. My bf got me a vanity so I can sit and do my hair, skincare, make up, or just dissociate depending on my functioning level 😂 it makes me feel safe at home when I have permanent furniture. I’ve been living here for just about a year now. I have had safe and stable housing for a year now 💗
*good sigh* 😮‍💨

Thanks for those who make it through these long vents.
#ComplexPosttraumaticStressDisorder #ADHD #PanicDisorder #ChronicVestibularMigraine

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Old reminders, metta meditation, and feeling a bit uncomfortable

Hi-
I’ve been having an uptick in social anxiety symptoms lately. It’s been really hard to “understand” social interactions and if other people like me or not. I know it’s not actual social anxiety but an offshoot of either adhd or cptsd (i can often notice trauma connections to it). But the more exposure I have to people, the easier it is for me to let my guard down.
I accidentally found some triggering things I was not ready to see. Just old notes to myself- trying to be heard. I used to write everything everywhere- margins of puzzles I was doing, books, scraps of paper, etc. It’s hard to see now because I see how scared I was. I didn’t think I’d make it out of homelessness alive. Everything kept getting worse with my situations and symptoms. And I’m still trying to get back to the still limited but surprisingly more functional place I was in with cptsd but before I became unhoused. I found a note that described my symptoms at the time- and it’s hard to see that was from 3 years ago- and I’m further behind despite working so hard to fight for treatment. It makes me cry. I also found pictures of my dog who passed away almost a year and a half ago. I knew when I was packing my stuff to go into storage that I was going to have to go through so many reminders. I don’t want to throw everything away. There are so many layers of my identity that I appreciated while I had them. I see pictures of nieces and nephews, notes they wrote me, before I was no contact with my sister.
In lighter news- I’m trying something called metta mediations and it’s nice because it fits in with my therapies and group.
#ComplexPosttraumaticStressDisorder #PanicDisorder #ADHD #ChronicVestibularMigraine

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Struggling and hopeful

Hi mighties!

So I’ve been trying to manage a lot of trauma symptoms recently. They haven’t been great. My panic comes in waves. But it’s not like the old panic. It’s still extremely distressing. But I will measure any progress as progress. October is a big trauma anniversary month and then holidays are also hard because of my trauma history. I’ve been dissociating a ton. I’m trying to learn more about the spectrum of dissociation. Or just more about it in general.
I’m really grateful for my boyfriend because these things are better managed with support. I’m still having a hard time with loneliness but I’m learning which of my old coworkers and friends feel safe that I can contact and at least have casual texting conversations. It makes such a big impact.
I’m working really hard to avoid triggers. That has always seemed like something I should fight against (idk- i think of exposure therapy) but I’m trying to learn my limits and respect my intuition.
I got my flu shot today! And my prior authorizations for migraine medications I have been requesting for literally years have finally been pushed through (after switching insurances) and will arrive on Tuesday. I know there is no guarantee they will work but it makes me feel more hopeful. This has taken so long. I cried on the phone with the pharmacist because it was so simple. I can’t tell you the last time I had a doctor, insurance, and the pharmacy all do what they needed to do with the prior authorization without me having to go in between and try to remember what has been said (dissociation) and tell someone else and send in multiple requests. 😮‍💨
Lastly- I had an asymptomatic yeast infection (I can’t remember if I already made a post about it or not but I’ll share again). Apparently doctors who don’t have a lot of experience with spoonies don’t realize how weird are symptoms can be. I only realized because my migraines were bad the entire month of October and I recalled one time a few ago when I went to the emergency department with a “slightly different feeling level 9 migraine” and it turned out I had a UTI. Anyways the urgent care I went to said they hadn’t heard of such thing but tested me for it anyways and found out I had a yeast infection. I went back today to make sure it cleared since I didn’t necessarily have “symptoms” anyways and the doctor again was like “we haven’t heard of it” but clearly saw they had just diagnosed me with it so we did the test and hopefully the medicine worked.
All that to say I’m having a lot better experiences at doctors now (especially when I bring a support person).
Okay thanks for reading ❤️. You all always make me feel heard and seen and like I’m allowed to talk and to take up space. 😮‍💨
#ComplexPosttraumaticStressDisorder #ADHD #PanicDisorder #GeneralizedAnxietyDisorder #ChronicVestibularMigraine #icanneverrememberallofmydiagnosessowhateverelse
#CheerMeOn

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I’m really having a hard time TW: results of US election

I don’t want to get into a discussion on politics. I don’t want platitudes. I don’t want hateful comments. I just need a place to vent.

As an American with a disability, I am truly terrified about my future. I have seen the hateful and dangerous rhetoric. I have seen so many marginalized populations stigmatized by politicians. It is scary that disabled Americans are rarely even acknowledged at the table when we talk about rights.
I have started seeing some progress in the past few months as I have had access to better supports. But even during this time where I have been getting better, I still have had to fight for access to my medications, access to appropriate care, and my voice to be heard. I have a burgeoning health care team that is starting to feel safe. But the results of the election have me terrified I’m going to regress, that I am going to lose resources, that access to funding for the few supports I have will be cut drastically.

What hasn’t been talked about is how as an American living under the disability system, I am not given enough to survive. Yes everyone is struggling with cost of living- but being disabled means the cost of living is actually impossible to meet without help. If I didn’t have my boyfriend, I’d likely still be fighting for housing. I wouldn’t have enough money for food. And I would still be spending most of my time trying to survive poverty than accessing treatment so I can get better. I didn’t get community support when I got sick. There weren’t enough resources for the amount of need in the community. And it was so commonplace that I wasn’t even treated with compassion. The agencies that were supposed to help and/or protect me talked about my lack of safety as though I wasn’t human and my life didn’t matter. It’s a symptom of a very broken system. There isn’t room for empathy in an overtaxed system. Which then leads to more trauma. Being treated like I didn’t matter- like my safety, my future, my life was just a matter of convenience rather than a real human need- it really escalated my trauma symptoms.

I feel like these experiences just keep getting retriggered for me. I have been trying so hard just to feel safe for years. I have done everything within my control to do so. I just feel so so so scared and overwhelmed and sick.

#ComplexPosttraumaticStressDisorder #ChronicVestibularMigraine #PanicDisorder #Disability

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My signs of starting to heal/picking up a second therapist

Add sometimes to most of these statements because these are new moments of success I want to notice for myself ❤️ I believe these things will one day turn into “often” statements
-I can listen to music
-I can participate in conversations without it triggering panic attacks
-I can run simple errands
-I can do some cleaning (dishes) and organizing
-I can eat at restaurants for short periods of time (one time I sat down for lunch at my favorite Thai place all by myself! I was so proud of myself)
-I tutor adults for 2 hours a week and I am able to concentrate on the task
-I can engage in journaling, art, meditations/mindfulness activities with support (a lot of times body doubles are helpful for these tasks I enjoy but can’t sit for)
-I can read and respond to emails

A bit more consistent progress milestones
-I am setting better boundaries
-I am learning my limitations
-I am slowing down
-I am using more affirmations and starting to believe them- I am safe and I trust myself
-I can be at home by myself for a few hours
-I sleep for 8 hours

It has been so hard to see my functioning fall so far from where I have been. Sometimes I find myself comparing myself to where I was (functionally) before- even just five years ago. It’s sad to see what happened in the years where I was homeless, fighting agencies to give me services they told me they would, and unable to afford to support myself on disability. I have lost so much but I am so so so happy and grateful to be in a place where I can notice these small changes.

I also wanted to share that I have been doing group art therapy (I can’t remember if I have mentioned it- I was doing art in general but I found a group a couple of months ago), and I talked to the therapist last week about possibly doing individual therapy with her so I can work more on my symptoms, as well as doing EMDR. She told me she would be happy to pick me up as a client and to talk to my current therapist to make sure it was okay with her. I did and everyone is on board. So today when I let her know, I also found out that she has done a lot of work with people with chronic and/or terminal illnesses. It almost feels too good to be true. 🤞

#Agoraphobia #GeneralizedAnxietyDisorder #ADHD #ComplexPosttraumaticStressDisorder #ChronicVestibularMigraine #CheerMeOn

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Just a humble brag

I sat through an all day training today. Yes- to most people it may seem like an everyday thing, and even to me a decade ago I’d be like “okay…?” But my mighty friends know how big of a win this can be. I’m trying not to compare where I was a decade ago to how hard it was to do it this once. Anyways- I am now certified in Mental Health First Aid for three years. Which doesn’t “do anything” but I am disabled and i am not renewing my school psych license so this helps me stay a little current and can help me find more avenues for future volunteering opportunities. I currently volunteer as a tutor for two hours a week.
But also- I finished a skirt the night before and then wore it to the training where I got a few compliments on it.

#CheerMeOn #ComplexPosttraumaticStressDisorder #PanicDisorder #ADHD #GeneralizedAnxietyDisorder #ChronicVestibularMigraine

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