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Been struggling with the pain

My head pain has been at an 8/10 for a week now, and none of my painkillers do anything anymore. My neurologist has raised my diamox, so now it’s just a painful waiting game for it to work.
Anyone else had problems like this before?

#iihmemes #IIH #IdiopathicIntracranialHypertension #IntracranialHypertension #IH #PainKillers #painmeds #AdviceWelcome #Advice #CheckInWithMe #headpain #Headache

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Where I am right now #CheckInWithMe

I had a lumbar puncture Friday, and while it was a temporary bandaid, my headaches are getting worse again. My blurring vision has started up again, but I have an appointment with my neuro-ophthalmologist tomorrow, so hopefully that goes well. I also don’t want to jinx it, but I’ve finally got a neurologist appointment next Tuesday with a doctor who treats IIH. We’ve been waiting since March, and I’m very grateful it’s happening.

I think I just feel so lost, and like my treatment plan is so up in the air and wishy-washy that I’m just existing. Everything just takes time, and I hate waiting. I think I could use some words of encouragement, if anyone’s got some to spare.

#CheckInWithMe #wordsofwisdom #encouragement #encouragementiswelcome #IIH #iihwarrior #IH #survivingnotthriving #IdiopathicIntracranialHypertension #IntracranialHypertension #checkin #AdviceWelcome #advicewanted


Parents coming to visit #CheckInWithMe

I have been unofficially in a no-contact relationship with my parents since last autumn. Due to covid-related travel restrictions, they have not been permitted to travel to my region since then. Well, now they are planning a trip at the end of the month.

I don't want to see them. I don't have anything light to "chat" about, like my mom wants. And they are not emotionally safe people or respectful of my boundaries. If I ask them to keep something private or confidential, they choose to share it with other family members and people I don't even know in their church and excuse it by calling it a "prayer request". I am not willing for my life to be put on display like this.

The thing is, they still have a number of boxes of my belongings stored at their home from when I was living out of the country. I feel like my belongings are being held hostage - accept a visit with them or don't get access to my things.

I haven't been very clear with them about my boundaries because I can't explain it without exposing very personal and private details of my life. I recognize that that has caused a problem now.

Does anyone have any advice for my situation?

#CheckInWithMe #Family #Parents #Relationships #boundaries #MentalHealth #Depression #Anxiety #EmotionalAbuse #AdviceWelcome


Optic nerve sheath fenestration?

So I’m having an ONSF procedure done on my left eye on Tuesday. My mom and I are working to get all the details ironed out but I was curious if anyone had any experience with this?
I know the basics, as I’ve done some research and gone over it with my doctor, but I’d love to hear from the Mighty community as well!

#RareDisease #onsf #opticnervesheathfenestration #EyeSurgery #AdviceWelcome #Advice #IIH #IdiopathicIntracranialHypertension #IH

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Words of encouragement? #CheckInWithMe

If you’ve been following along, I had a new doctors appointment last week, and the follow up is tomorrow. I can feel that the meds aren’t doing enough, and as I’m on the highest dose allowed, the next step is most likely surgery. Depending on the surgery, I might miss out on graduation- something I’ve worked super hard to get to.

The doctor basically said surgery is the next step herself last week- she just wanted to run more tests before deciding on anything concrete.

Anyway, I’m really nervous and my anxiety is taking me down some wild paths, so I thought I’d ask for some encouragement here. (You guys are honestly really good at that!) So please, tell me something good, a nice pick-me-up quote, or a funny joke! I’d really appreciate it!

#CheckInWithMe #Support #Advice #AdviceWelcome #joke #Quotes #quote #encouragementiswelcome #Encourageme


First Neurophthalmologist appointment next week... any advice?

So I have my first appointment with a neuropthemolegist (still can’t spell sorry) next Thursday and I’m not sure what to expect. I’m quite nervous and would love to hear about other’s experiences to quell some of my anxiety. The one thing I have heard about this particular doctor is that she is very thorough and the appointment will probably take like 3 hours so... any advice is greatly appreciated!
#IIH #iihwarrior #IdiopathicIntracranialHypertension #BenignIntracranialHypertension #PseudotumorCerebri #IntercranialHypertension #doctorsappointment #Advice #AdviceWelcome

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🚨Need Advice...ASAP!🚨 #Bipolar2Disorder #MentalHealth #Therapy #Newjob #AdviceWelcome #Anxiety #ADHD

✨So I just started my new job. I’ve been there for 3 days so far. I haven’t mentioned to anyone my about my mental illnesses & how I may have some doctor appointments every now and then, along with therapy sessions every 2 weeks. I’m afraid to say anything in fear that they’ll fire me because I have too many complications/issues. Or they’ll think I can’t do this job, which I can. I’m so scared. I feel sick to my stomach.
✨I was supposed to have a therapy session today but couldn’t. The secretary called to reschedule & I told her I really need something after 4:30pm. She asked if I could do like a work from 8am-4:30pm. Then she asked what about lunch, I said no because for now I only get 30mins, my sessions are an hour. She said she’d speak to my therapist & call back later. She didn’t call me back. My therapist new about me starting at a new job & promised we’ll figure everything out, but today when talking to the secretary I got the feeling that wasn’t true. I’m super anxious about that because this is the FIRST therapist I’ve really connected with & felt comfortable with (I’ve had 3 before her).
✨So, I need I tell my boss about my illnesses? How should I go about telling them this? Do I tell them about the specific illnesses I have or just say I have some mental illnesses that require doctors appointments to fill medication & therapy sessions? Do I have to do any of that? Do y’all think my therapist will help work around my schedule (she’s amazing & really cares about me but idk)? Am I right for being anxious about all of this? HELP!😣

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Some advice.. #AdviceWelcome #SexualAssaultSurvivors

I’ve not posted here before so I’m sorry if this isn’t okay, please let me know and I’ll take it down . I just honestly am in desperate need of some advice..
I’ll also throw a trigger warning here as this pertains to being abused as a child.

Very recently I’ve , I’ll say “become awoken” to the abuse that happened to me as a child.
While I always knew it happened I just wasn’t aware of how much that it affected me.
My brother who is 5 years older than me molested me for the majority of my childhood. From before I can even remember until I was in grade 5.
At some point in those years I told my mother I think it was around grade 3 and was told “let me know if it happens again” ..
when it stopped it was because my father found out
*sidenote* my mother and father have been separated since I was a baby and both have remarried*
I do have a slight memory of the police being involved, I remember sitting at a table with two officers crying unable to speak because I was scared and my brother was going to get in trouble.
And beyond that nothing was done.
I’ve been in and out of therapy for years and I’m still very messed up about it.

I visited the doctor today, not my doctor because she pretty well ignored me and just upped my meds and sent me on my way. He told me in his opinion that I should go to the police and have him charged as well as he will be sending me to a trauma specialized therapist.
My best friend/life partner says whatever I was we will do and she has me no matter what.
My boyfriend however is worried that I’ll just end up more hurt and he will have no consequences and everyone will think I’m a liar after so many years.

please if anyone has any idea what I should do.. My family still just chooses to ignore it all and I’m not sure how much longer I can live feeling like this ... reliving it over and over in my nightmares ...
I really just want peace ... #help


What do I need to tell the psychiatrist? #Firsttime

A temporary counselor through the public mental health centre has been trying to refer me to a psychiatrist for the past month and she called today to tell me that not only was she able to get an appointment for me, with the psychiatrist she requested, but it is also for five days from now! It was originally projected to be in the third week of April, so this is a very big surprise.

I'm trying really hard to hold it lightly and not let anxiety take over. I want so badly for this to make a difference, but I also feel like the psychiatrist probably won't listen or take me seriously.

So, what do I need to make sure to say or ask about? The counselor suggested that I write some notes to look at during the call, but I don't know what to include besides medication history.

What do I need to know?

#Psychiatrist #Medication #AdviceWelcome #MentalHealth #Depression #Anxiety #PTSD

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Drew and colored this. Liked how it came out. This was made a few days ago. After that these days havent been so good. Family drama. But they can handle themselves. I'm just going to treat it all like how I have been. If it doesn't concern me I shouldn't care...but yesterday my father got hurt. Because of my brother. So how can I not care or feel some sort of emotion? I do. I feel alot but keeping it in will only hurt. Idk what to do guys. I really dont. I want to leave but I dont have anywhere to go. I gotta stick it out...which sucks because I'm hurting to. But that all goes unnoticed. Ive been applying to jobs but I'm starting school in a few days so juggling will be tough and no one has responded to me that is a legit job. I'd love to work at a library. Or at my campus but I cant get what they need for the application. Not during covid... #StrugglingWithEmotion #Depression #Family #Advice #AdviceWelcome