Tell me your Insomnia cures

[CaptainBarnicles]

This is horrendous news, I'm so upset for you

 

[JuiceBox52]

Figured I’d update. Dictating this message with assistance as I’m too weak to type

It is brain swelling, we now know that it’s my immune system creating antibodies it shouldn’t, thinking my brain and spinal cord is a foreign infection, and trying to kill it.
So immune system is attacking my brain, specifically the areas which control emotions, movement, and sleep

It caused the 8 days of insomnia, the extreme autonomic dysfunction with my heart, the hallucinations, psychosis, everything

It was either triggered by a virus, or toxic mold exposure (my apartment is dealing with some extreme mold issues)

I’m was put on high dose steroids but they nearly killed me. We are trying to get IVig transfusions but it’s a long, slow process

I won’t be active much on here for probably months. It is causing seizures every few minutes, and tic attacks that are causing severe joint dislocations.


I’ll likely have to be on IVig for the rest of my life, and will flare up from things like a common cold.

This is devastating to me. It’s taken my ability to do art, speak, sing…. The few things that I could still do

 

[Rocky998]

Figured I’d update. Dictating this message with assistance as I’m too weak to type

It is brain swelling, we now know that it’s my immune system creating antibodies it shouldn’t, thinking my brain and spinal cord is a foreign infection, and trying to kill it.
So immune system is attacking my brain, specifically the areas which control emotions, movement, and sleep

It caused the 8 days of insomnia, the extreme autonomic dysfunction with my heart, the hallucinations, psychosis, everything

It was either triggered by a virus, or toxic mold exposure (my apartment is dealing with some extreme mold issues)

I’m was put on high dose steroids but they nearly killed me. We are trying to get IVig transfusions but it’s a long, slow process

I won’t be active much on here for probably months. It is causing seizures every few minutes, and tic attacks that are causing severe joint dislocations.


I’ll likely have to be on IVig for the rest of my life, and will flare up from things like a common cold.

This is devastating to me. It’s taken my ability to do art, speak, sing…. The few things that I could still do

I'm so so sorry Gius
All my thoughts and prayers are with you.

Is there any chance of the condition going away or settling down, or do you not exactly know yet?

I really hope you have a lot of people around you supporting you. I'm sure you do...
Know we care for you and if some of us could, we'd be fighting along side you so you can get better!

I know it's most likely a huge ask of me, but I believe in you, so I ask that you stay strong!

 

[JuiceBox52]

I'm so so sorry Gius
All my thoughts and prayers are with you.

Is there any chance of the condition going away or settling down, or do you not exactly know yet?

I really hope you have a lot of people around you supporting you. I'm sure you do...
Know we care for you and if some of us could, we'd be fighting along side you so you can get better!

I know it's most likely a huge ask of me, but I believe in you, so I ask that you stay strong!

If I can get IVig treatment it could settle down, but my neuro said there’s permanent brain damage.

And IVig would cost me about $40-90,000/per month

 

[AdoraBelle Dearheart]

And IVig would cost me about $40-90,000/per month

What's IVig? Surely insurance or Medicaid should be kicking in with your health so seriously affected and now evidence from a neurologist??

 

[JuiceBox52]

What's IVig? Surely insurance or Medicaid should be kicking in with your health so seriously affected and now evidence from a neurologist??

Insurance won’t approve it. Insurance decides if they’re going to cover treatments or not. They decided that I didn’t need a feeding tube despite doctors saying I do, they decided my surgery isn’t gonna be covered either.

IVig is intravenous immunoglobulin

 

[Tacocat]

Insurance won’t approve it. Insurance decides if they’re going to cover treatments or not. They decided that I didn’t need a feeding tube despite doctors saying I do, they decided my surgery isn’t gonna be covered either.

IVig is intravenous immunoglobulin

So what is the insurance suggesting you do then, sit there and hope for the best? From what I'm hearing the insurance company is simply letting you rot in the name of "you don't need it we're not paying for it" when in fact medical professionals are completely on your side and want you to have it.

 

[JuiceBox52]

So what is the insurance suggesting you do then, sit there and hope for the best? From what I'm hearing the insurance company is simply letting you rot in the name of "you don't need it we're not paying for it" when in fact medical professionals are completely on your side and want you to have it.

Basically yeah

 

[Tacocat]

Basically yeah

I'm just a kid so don't take my legal advice at face value but couldn't you get theoretically get the courts involved in this? If this kind of thing was included in your plan and they're withholding it it sounds like you could sue the hell out of them. Of course that's a long and stressful process that you wouldn't be in any condition to deal with, but that seems like an option.

This is a terrible situation I wish you luck in dealing with it.

Edit: so wait what happened to the stage 4 heart failure? Is this the same thing but a full diagnosis or an unfortunate coincidence?

 

[Fishmanic]

@JuiceBox52
You might contact a social worker and see what insurance plans/additional financial aid you might qualify for. Depending on your income, maybe you qualify for Medicaid or other services. Then maybe Medicaid might cover your needed medical care. Can't hurt to speak to a social worker.

 

[JuiceBox52]

I'm just a kid so don't take my legal advice at face value but couldn't you get theoretically get the courts involved in this? If this kind of thing was included in your plan and they're withholding it it sounds like you could sue the hell out of them. Of course that's a long and stressful process that you wouldn't be in any condition to deal with, but that seems like an option.

This is a terrible situation I wish you luck in dealing with it.

Edit: so wait what happened to the stage 4 heart failure? Is this the same thing but a full diagnosis or an unfortunate coincidence?

Nothing is guaranteed in an insurance plan. Specialty treatments/meds/procedures are at the discretion of the insurance company.


We don’t know if the heart failure is caused by the encephalitis or if it’s coincidental

 

[Colin_T]

Time to move back to New Zealand, at least they have a better public health system than the one in the US where the rich get treated and everyone else dies.

This is a joke but
Maybe rob a bank. When you get caught you go to prison and the state has to foot your medical bills

 

[JuiceBox52]

Time to move back to New Zealand, at least they have a better public health system than the one in the US where the rich get treated and everyone else dies.

This is a joke but
Maybe rob a bank. When you get caught you go to prison and the state has to foot your medical bills

Unfortunately I’d die there. There are no specialists there and the waitlists for treatment are unreal.

I’d also die in prison , they won’t fly me out of state to see the few specialists in the world lol

 

[Rocky998]

I agree with all the above (except for robbing banks and NZ of course lol)
I also thought about you getting court's involved, but I was sure that would be a huge stress then on you and more of a pain then anything...

I'm surprised you can't have a team of doctors speak to your insurance company on your behalf. Cause this is life saving stuff. You need it...
I understand and don't understand why they won't cover most of these things... Your insurance company seems useless...

How is your donations going?
I really wish I could provide something for you monetarily, but I can’t atm... I'm so sorry.

 

[JuiceBox52]

I agree with all the above (except for robbing banks and NZ of course lol)
I also thought about you getting court's involved, but I was sure that would be a huge stress then on you and more of a pain then anything...

I'm surprised you can't have a team of doctors speak to your insurance company on your behalf. Cause this is life saving stuff. You need it...
I understand and don't understand why they won't cover most of these things... Your insurance company seems useless...

How is your donations going?
I really wish I could provide something for you monetarily, but I can’t atm... I'm so sorry.

They cover most things, just not rare things or expensive things. Most insurance companies are the same. There’s a reason cancer patients are often 2-10 million dollars in debt