Chronic Daily Headache

Hi, my name is Tryingeveryday66. I'm here because I’m looking for support. Thank you

#MightyTogether #ChronicDailyHeadache

Hi, my name is SnoozySnowman5599. I've been diagnosed with

#MightyTogether #ChiariMalformation #ChronicDailyHeadache #ChronicPain #Anxiety #Migraine #PTSD #Grief

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

Hi, my name is alexis. I've been diagnosed with anxiety, depression, ADHD, an eating disorder, depression, body dysmorphia, shoulder tendinopathy, chronic migraines, and more:)

#MightyTogether #Anxiety #Depression #BipolarDisorder #Migraine #ADHD #AutismSpectrumDisorder #EatingDisorder #ChronicDailyHeadache #ChronicPain #SuicidalThoughts

Have a question and gripe. I drove 30 miles to get a consult to participate in a new migraine med study and get turned down bc I wasn’t told that I couldn’t have ANYTHING in my system for 3 months regarding migraines!!! I would be dead or hundreds of thousands of dollars in er bills had I refrained from any meds to treat my migraines. Why don’t they disclose this vital information? Because apparently, the only people who get to participate are lying on the forms or don’t have weekly almost daily migraines like some of us. Has anyone else gone through this? I’m literally crying over it. #Migraine #ChronicDailyHeadache #ChronicIllness

Trouble sleeping has kicked in yet again, and I know my worsening mental health isn’t helping, either. This September will be twenty years of my chronic migraines. Or, more so, the horrendous pain and symptoms that literally have never left my side.

A few months ago, I was diagnosed with trigeminal neuralgia. Additionally, I have fibromyalgia, depression, and anxiety. That said, I’m pretty dang certain I’m AudADHD and leaning towards POTS and/or hEDS.

But while these ailments continue to worsen and affect my ability to work greatly, I can’t get myself to address these “newer” thoughts and issues with my doctor. The feeling of being a burden on anyone runs far too deep, and I’m honestly unsure of what would be the right amount and timing of addressing things before becoming annoying or appearing to be drug-seeking or a hypochondriac.

Does anyone else struggle with bringing up new ideas or issues? The worst part is my PCP is amazing and I know she wouldn’t brush me off. But those inner beliefs and fears of burdening anyone is far too great.

I’m not necessarily looking for advice or anything. Just feeling very isolated right now and needed to get thoughts into writing. Perhaps maybe I’m not the only one who feels this way?

Course, the panic attack this afternoon certainly did not help any.

#Migraine #ChronicDailyHeadache #Fibromyalgia #MentalHealth #ADHD #Autism #ChronicPain #Depression

Hi, my name is jle1490. I'm here because
I have ME/CFS and I am looking for a connecti on with others with this illness. I am also interested in what treatments have helped others.
#MightyTogether #ChronicDailyHeadache #ChronicIllness #chronicepstein-BarrVirus #ChronicFatigueSyndrome

I am starting to return to normal after my relapse. Things were a blur, I was unable to take care of any responsibilities for the past 4 days or so. The friend I was going to reconcile with, I don't even know if I would be able to trust her. I do want friendship, but I am starting to believe that a new start in that area would be best, as opposed to attempting to put trust in someone who I likely stopped trusting for a reason.

Today is my adoptive mother's birthday. The only mother I know, but we are no contact and this will be the first birthday of hers that I don't reach out. I feel guilt because I am loyal, and perhaps overly forgiving of the things that she had done, perhaps because of some deep need or desire to have a motherly figure in my life but I am old enough now to nurture myself and realize that there is no point in a warm hug if it comes with a stab in the back.

For the most part though I am calm, even though our downstairs neighbor has decided to scorn the whole building and blast the same 5 VERY overplayed songs on repeat since 3pm yesterday until 5 pm today. It is quiet now so hopefully it is over but I'd be lying if I claimed to not be overstimulated and almost driven to madness because of it, not enraged or anything but my head hurts from the relentless repetition. It's quiet now and I hope it stays that way, we didn't knock on his door but left a note and could hear him saying "F U" again and again for a while once he found it, plus turning the music up. He seems in some sort of psychosis and volatile state so i just hope that he burns himself out and calms down so I can calibrate myself enough to get some work done today.

I hope you're all having a peaceful weekend 🌸

#MentalHealth #Anxiety #ChronicDailyHeadache #PTSD #AddictionRecovery

Hope everyone is okay and ready for the holidays! Hope you get relief from illness and pain so you can enjoy the week. Get migraines a lot less than I used to but had one last night. In Connecticut it’s in the teens. Beautiful with just enough snow covering to make it pretty for Christmas. Used to get migraines that sent me to the er once a month. Even took part in a clinical trial for migraines. Now only get one once in a while. Migraines are one of the worst pains you can suffer from, and even had lupus cerebritis once.