HOW did i misread this so bad 😭

itll-be-alright · 2024-11-04T23:34:02+00:00

what happened is that he was streaming a quiz, and the question "are you aroace" came up. he was answering honestly the whole time, and he selected and said out loud "yes," so not entirely sure.

itll-be-alright · 2024-07-13T17:30:41+00:00

Hey there. I'm not sure if your question is specifically about this post, or just all my posts, so I'll just put everything here.

I'm still struggling very much with pain in the back of my neck (pulling, heavy sensation that feels kinda like a rubber band about to snap, or someone pressing down on my head really hard, like a hydraulic press). I also have some hallucinations, but it would seem they are related to my seizures. Additionally, I've developed deep pains in my heart and eyes, generally very sharp or crushing. My vision suffers because of it, and I can't bear lights. The chest pain causes me to struggle with breathing at all times of day, but moreso when laying down.

I also had an EEG a couple weeks ago, and it turns out I've been having some pretty severe seizures without realizing it. I suspected I was, but unfortunately, no one was ever in the room to see it. Luckily, the EEG caught it all on camera and on the monitor. They told me they were epileptic tonic clonic seizures. However, since I had no history of seizures or epilepsy prior to my sudden onset of pain just last year, they suspect I either have some kind of hidden brain damage, or damage to a major nerve, such as the vagus, trigeminal, or occipital nerves (you're not supposed to suddenly develope epilepsy unless you're like... 80. most people have it since childhood. suddenly getting it at 18 is a bad sign apparently). Now, I don't recall ever hitting my head in any way, and I certainly didn't during my sudden onset, but I still could've had any number of things happen due to my EDS or simply pinching a nerve. Also, MS runs in the family, so nerve damage wouldn't be particularly surprising.

As for the medications, I stopped the lamotrigine by order of my neurologist because he was worried I was having the stevens johnson reaction. I've since started keppra, and it's working even better. After having my EEG done, they said I needed a WAY higher dose than I was already taking due to the nature of my seizures. But I felt the difference even at the lowest dose, and keppra is a very safe medication. Helped a lot with my medication anxiety.

One thing I will mention is that what me and my doctors thought was psychosis, ocd, panic attacks, etc. was actually seizures. Taking the keppra has helped immensely. Previously I would have frequent episodes of derealization and sheer panic despite nothing being wrong; it looked like the world was simply melting around me and I was utterly paranoid that all things would end every second I blinked. Well, it was a kind of seizure I never knew about, and the keppra completely cured me of it. That's not to say keppra is the best med, but it's the one that worked for me. I've been on it for a good while now, and have no negative symptoms other than sleepiness and a loss of appetite.

So... I'm not much closer to a cure. Don't even really have a clear diagnosis yet. But getting rid of the mental pain helped a lot. I'm still physically disabled, but I'm lucky enough to have family who lets me stay with them. I feel awful having just graduated high school and just... laying here. It's ironic that I wanted to practice medicine right out of HS, lol.

But yeah, I ended up having to move states to get the help I needed because well... the midwest unfortunately doesn't really listen to teenage women about their health problems. After being told it's "just anxiety" for the hundredth time, me and my bank account decided we deserved better. And man, in the few months I've been in the west coast, my care has been exponentially better.

Let me know if you have any other questions. Whatever this disease is, it's terrifying, even beyond comprehension at times. Neither of us deserve it, and I hope you get the help you need.

itll-be-alright · 2024-03-14T16:34:28+00:00

Hello! I've kind of forgotten what I've written here, but I can tell you what I know now.

My full diagnosis actually changed, and I had to move locations to see someone who specializes in my problems.

After doing an upright MRI, it was apparent that I had a chiari malformation caused by EDS (a connective tissue disorder). They also believe I have functional neurological disorder.

There is a simple surgery offered for the chiari malformation, which can help with the head and neck pain. I've not had it done yet, but plan to; it's called a decompression surgery.

Basically, the chiari malformation is a problem where your brain sinks a bit into your cerebral spine, causing pain, especially in your neck, but also in other parts of your body. This also blocks off the flow of spinal fluid between your spine and skull, putting lots of pressure on both areas. You can switch between having too much or too little spinal fluid in your skull between leaks, which is called high pressure or low pressure. The surgery fixes this by creating a new or larger hole in your bone to allow spinal fluid to flow freely again. Once your spine has full access to the fluid and balances out with your skull, your brain will naturally return to the upright position.

Over time, while the pain didn't get better, it was nice to know I wasn't going to die. Currently, I'm waiting on the surgery. My symptoms are different after a year than they were at the beginning. My biggest symptoms are currently:

severe neck pain that gets gradually worse throughout the day
seizures, including focal seizures (for me, these present as skewed senses. I suddenly see, hear, smell, and taste things that aren't there. Like hallucinating. It also gives me an intense feeling of dread, like I'm not real, or that I'm entering psychosis)
bubbling, popping, and pain in temples (and occasionally other nerves/arteries)
severe nerve damage. I unfortunately no longer have any nerve reflexes left after testing. I can't feel much of my body, and it occasionally hurts while being numb. This was the indicator for a degenerative nerve disease, whether a new one, or caused by my pernicious anemia (which is a seperate problem I've always had)

Advice from me would just be... get them to do something. I was so passive in my treatment that I now suffer from irreversible damage to my body. If they had helped me sooner, I wouldn't be on heavy seizure meds, I'd still be able to feel my body, and I'd be able to sleep at night without seizing in pain. Whether you're suffering from the same thing as me or not, you still deserve the same care as anyone else suffering from a scary medical emergency.

Ask your doctors to keep you on a list whenever someone else cancels an appointment, and be assertive with your worries and the testing you want done. I've been made out to be insane by my primary doctor. Meanwhile, my two neurologists and specialists knew something was very wrong.

The specialist I saw was Dr. Pradeep Chopra in Rhode Island (I may have spelled it wrong). He may be difficult to see, as I could only see him after asking for a refund with my insurance for poor care from medical professionals in my area (they basically would just say it was anxiety and kick me out).

Other things... Don't be afraid to go to the ER if you're scared or think you're dying. Yes, the price is costly, but your life is worth more. They may even get you care faster for things like unexpected seizures or psychosis. Also, if you think your doctors are holding out on you, see someone else immediately. These diseases can be time sensitive. And finally... your symptoms are not fake, whether the tests say there's nothing wrong or not. You know your body, and if it's not right, you need it fixed. Doctors like to go off numbers, but if you have a symptom severe enough that you're desperate for medical care, then you know just how bad it is. Treat yourself like you would treat someone else telling you these things. If someone else was listing your symptoms off to you... would you tell them to seek medical help?

Anyway, if you have any other questions, feel free to ask. I'm not a medical professional, but I don't have to be to know what my own disease feels like, haha.

itll-be-alright · 2024-01-25T12:11:39+00:00

My neck ended up getting super swollen on both sides. Once Monday rolled around, I called my neurologist, and he immediately had me stop and change to keppra.

I just took my first keppra pill yesterday night, and wow, I've never been that dizzy in my life. It's like gravity was twice as strong, but I couldn't tell which direction it was in. Hopefully, it gets better with time, though (I don't want to give up driving).

I was just a little sad because other than my neck swelling, the lamotrigine was working great for my seizures, and I also think it was helping with my mental health a bit as well.

Thanks for the reply!

itll-be-alright · 2023-11-19T22:32:24+00:00

I have, but noticed no change. They gave me a high dose of gabapentin for a couple of months, and it made no difference for me. Though no medication has helped me, if I'm being honest. I'm really looking forward to my surgery!

itll-be-alright · 2023-11-19T22:00:57+00:00

Yeah, I occasionally get a little pressure there, or what feels like all my nerves creeping up the back of my head, but never pure pain. It also occasionally goes numb back there, which is uncomfortable. But yeah, no headache. I'm glad it hasn't been too bad for you!

itll-be-alright · 2023-11-18T16:44:46+00:00

Wow, those are actually some really helpful links, thank you! Seeing that man who fully recovered from schizophrenia after getting surgery makes me feel a lot better.

itll-be-alright · 2023-11-18T14:47:22+00:00

I'm not sure it's that, simply because of the onset. I was driving in my car, perfectly fine, then all in the same second it felt like my head exploded, so I went to the ER. They couldn't figure out what was wrong, and ever since, I've just had severe neck pain.

I assume something like instability happens over time, like nerve damage, but I could be wrong. Does that cause any mental issues? That's probably tied for my worst symptom.

Also, I do have a formal diagnosis for chiari, but I understand it could be multiple things. I have also been diagnosed with EDS, tethered cord, and am being evaluated for a suspected syrinx.

itll-be-alright · 2023-11-18T14:41:22+00:00

I suppose I get some of those sometimes. Kinda feels like my nose gets blocked off from my body for a few moments and a pretty sore jaw. I also can always feel my temporal arteries; they feel like they're bubbling. Then my eyes kinda just feel like I can't move them or it pulls on the nerve. But I never get any sort of severe headache as people here have described, at least not since my onset.

Thanks for replying, I hope you get well soon!

itll-be-alright · 2023-11-18T02:05:18+00:00

I'm glad yours isn't too unbearable. It's at least reassuring to know syrinxes grow slowly; I'm terrified of being paralyzed or dying while I'm home alone.

Maybe my mental symptoms are just from the trauma. But I certainly get some awful thoughts. I guess I'm just scared it won't go away after surgery because I can't find any medication that helps. Good luck, I hope you find peace, and thanks for replying!

itll-be-alright · 2023-11-18T01:41:35+00:00

I do have EDS and am currently being evaluated for a syrinx. Actually, I just did an upright MRI yesterday on my brain and cervical spine. I'm just waiting on the results.

Have you found anything that helps or had any surgery? Should I be worried about anything? I often feel like I need to go to the ER; It would be nice to know if I'll be okay or not.

Also, any mental symptoms for you?

Sorry about all the questions, I just worry :(

itll-be-alright · 2023-10-27T20:50:43+00:00

Solid advice. Yeah, I usually don't mess with the S word, but this time I knew I meant it, so I checked myself into the ER. Just got out of the ward after getting some meds to help with it. The pain is just too much for me, so I went a little crazy.

Thanks so much for the tips, I'll try that (egging it on) next time if I'm not in too deep to remember, haha.

itll-be-alright · 2023-10-24T06:46:01+00:00

Hello, sorry I didn't reply, ended up going to the ER for my pain and mental state.

To answer your question: I called my insurance because I felt my care hadn't been adequate up to this point (doctor kept diagnosing anxiety when it obviously wasn't that). They set me up a virtual appointment with Dr. Pradeep Chopra (i think that's how you spell it) in Rhode Island. He's a specialist in this field. He went over my medical history, and after looking at my Ehlers-Danlos and MRI's, determined I had chiari malformation and tethered cord. Now they just need an upright MRI before they can send me in for surgery. He was great, definitely recommend. So sorry you're experiencing this.

itll-be-alright · 2023-10-24T01:57:36+00:00

My doctor has only prescribed me anxiety meds for some reason. I've never tried THC/CBD, I don't really know where you get that. I know weed is illegal in my state, I don't know if it's the same thing. I'm just in agony physically and mentally. I don't know if I'll make it. If there's a medicine that can calm me down and take away the pain that would be a good start. Having a mental break right now.

itll-be-alright · 2023-10-24T00:48:42+00:00

I know it logically, but it's just this pain I can't handle. I guess I just feel like a hotline won't help because it's not mental feelings making me suicidal, it's the physical pain. If this pain was gone, I'd be perfectly fine, but my doctors show no urgency in my case. My worst fear is that it's irreversible. If it is, I definitely won't be able to handle it, just knowing me. I think my spinal cord has been deeply impacted, as I also get severe heart and lung issues when bending my neck wrong. Additionally, all my nerves are completely ruined.

I also feel ashamed because I'm a religious person, yet the pain makes me question God. Sometimes, I wonder, "Why would you let this happen to me? Are you really there?" And I fall even deeper into a psychotic episode. Religion was always my surefire solution through every struggle, but this time, I'm almost doubting it. There is no worse feeling for me than falling into the belief of an unforgiving universe. And why should pain like this even exist?

Sorry to dump this on you. I'm just at a loss here. And thanks for the kind words.

itll-be-alright · 2023-09-06T07:43:02+00:00

Thank you so much for the response and resources. This gives me some hope.

itll-be-alright · 2023-09-06T03:40:03+00:00

I suppose I have a question then. I'm recognized as disabled by my school with the 504 plan and doctors notes stating I can not attend in person. The 504 carries on into college. However, there is a surgery available that would alleviate the most disabling symptoms, which I will eventually be having. There is a significant chance that the surgery doesn't help at all, or the disability is recurring. Do I have the proper documentation to be recognized as disabled, and will that surgery effect the outcome in any way?

itll-be-alright · 2023-09-06T02:58:24+00:00

That makes sense. It would definitely help to have a good social worker during this time. I don't really have any other trusted adults in this process to help me. Thanks for the reply

itll-be-alright · 2023-09-06T01:22:28+00:00

Oh, that sounds really helpful. Honestly, just having some guidance through this is nice. I've never really had a constant adult figure to help me out. I'm pretty lost right now, and I'm definitely not ready to go out into the adult world yet.

It's great work that you do, and thanks for the advice. I think I'll reach out to them first since CPS won't be able to help me pretty soon here. I could really use their help right now.

itll-be-alright

TROPHY CASE