Incurable neuro problem leading to my suicide…

[Rhizomorph1]

Hello all,

Never been suicidal… until 7 months ago. Crazy how one thing can change your life. I was on an airplane when my face felt like it exploded. Severe nerve & head pain. Then severe body burning once on the ground. Ever since then I've been living in some neurological nightmare with symptoms that are truthfully unbearable. Absolutely nothing has shown the fuck up on any test. Something really fucking weird happened to me. I had a great life, career, friends, boyfriend, family. No history of anxiety or depression. No complaints. I was very happy. Now, I am in an untenable body without a moment of peace. I've been to the hospital 8x, multiple doctors, Mayo Clinic, and no answers. Being youngish (29) and a woman has its drawbacks. But even with the support of my family, no one has found what is happening to me.

Have tried multiple drugs but nothing is helping. Sleep - even with the help of Xanax - is almost impossible. I had a rapid onset of 10/10 pain, floaters, excruciating tinnitus with Hyperacusis, muscle twitching, feeling like I'm wading through cement, blurred and jumpy vision, exhaustion, hot and cold; severe right side head pain, a static sensation on my head, eye issues .. honestly the list goes on. I am miserable 24/7. I have trauma from being medically gaslit and the extreme way these symptoms came on. Lost it all. I find Joy in nothing. My body is withering away.. I am skin and bones. People called me 5th gear before and now I can barely leave my bed. I needed to vent. I'm getting worse and I have no reprieve - last night I almost threw up from the burning pain in my back. I'm over it and I need to get out of here before I lose more of my dignity. Mayo thinks it's a virus reactivated but in my soul it feels much worse and permanent. It's a horrible feeling. This is not a way to live. I can barely tolerate each day without spiraling into a complete mess before I become someone I'm totally not. I've got to go but I wish it wasn't so complicated inert gas seems to be the way to do it but so much prep and I am so weak ..

How are they not sending you to a pain clinic for assessments of neuralgia or neuropathic pain syndromes?

If you tell them you're suicidal they are likely to speed up the process by designating you as an urgent case. Just say you're not planning suicide anytime soon if you don't want a mental health form (where they detain you).

Also, I encourage you to ask about MAID as if your condition is incurable, you will definitely be eligible.

But, I also believe it could be something as simple as a neuromuscular surgery to cure, should you choose to keep searching for what it is.

Likewise, if you choose to end things without medical oversight that is also okay. There are resources on this forum to explore this option in least-risk, peaceful ways.

Chronic pain fucking sucks as someone with fibromyalgia. Severe pain would be hell; I wish you solace and peace in living or dying. Very soon at that

 

[whaleandwasp]

Is it possible you could have Trigeminal Neuralgia aka "The Suicide Disease?"

 

[fantastic_unicorn]

How are they not sending you to a pain clinic for assessments of neuralgia or neuropathic pain syndromes?

If you tell them you're suicidal they are likely to speed up the process by designating you as an urgent case. Just say you're not planning suicide anytime soon if you don't want a mental health form (where they detain you).

Also, I encourage you to ask about MAID as if your condition is incurable, you will definitely be eligible.

But, I also believe it could be something as simple as a neuromuscular surgery to cure, should you choose to keep searching for what it is.

Likewise, if you choose to end things without medical oversight that is also okay. There are resources on this forum to explore this option in least-risk, peaceful ways.

Chronic pain fucking sucks as someone with fibromyalgia. Severe pain would be hell; I wish you solace and peace in living or dying. Very soon at that

Thank you. I'll bug them about that. Truthfully, I don't think they believe me with anything.. including my pain. I have read about fibromyalgia - sounds awful and hope you have it under control.

Is it possible you could have Trigeminal Neuralgia aka "The Suicide Disease?"

Yes - was diagnosed with that unfortunately

 

[fantastic_unicorn]

If anyone could PM a source for SN - I would be eternally grateful. Suffering a ton.

 

[zzeroo]

I am so sorry you are struggling and in so much pain...I know that may not sound helpful, but I don't know what else to say. I wish you the best for whatever you choose to do and I really hope your pain eases x.

 

[fantastic_unicorn]

I am so sorry you are struggling and in so much pain...I know that may not sound helpful, but I don't know what else to say. I wish you the best for whatever you choose to do and I really hope your pain eases x.

Thank you. You're a kind soul

 

[Hotsackage]

Sounds like somatic pain disorder, an advocate had it in canada, im sorry you're going through this.

 

[fantastic_unicorn]

Sounds like somatic pain disorder, an advocate had it in canada, im sorry you're going through this.

Truly wish it was. And this is unfortunately why doctors don't take me seriously because they default to this.

 

[Sunset Limited]

I'm so sorry about your situation. An example of how fragile human life is. Not diagnosed with trigeminal neuralgia?

 

[fantastic_unicorn]

I'm so sorry about your situation. An example of how fragile human life is. Not diagnosed with trigeminal neuralgia?

Yes, I was. TN on the right side

 

[Rhizomorph1]

Thank you. I'll bug them about that. Truthfully, I don't think they believe me with anything.. including my pain. I have read about fibromyalgia - sounds awful and hope you have it under control.

Yes - was diagnosed with that unfortunately

Has your physician discussed microvascular decompression surgery with you?

The vast majority of people (96%) are completely pain free 3 months post-surgery.

The long-term clinical outcomes of microvascular decompression for treatment of trigeminal neuralgia compressed by the vertebra-basilar artery: a case series review - BMC Neurology

Background Microvascular decompression (MVD) is a type of neurosurgery used to treat trigeminal neuralgia (TN) caused by the vertebrobasilar contact/compression. The surgery is not risk-free, however; it may cause recurrent facial pain or other side-effects. The objective of this study was to...

bmcneurol.biomedcentral.com

There can be side effects/risks in approximately 10-20% of cases, but these are usually livable/ inconveniences rather than detrimental; e.g., mild-moderate hearing loss in one ear.

I would seriously consider this before ctb as it can virtually cure people of TN. But, the choice is obviously yours. TN is seriously hell from my reading of it (background in psychopharmacology & health psychology)

 

[fantastic_unicorn]

Has your physician discussed microvascular decompression surgery with you?

The vast majority of people (96%) are completely pain free 3 months post-surgery.

The long-term clinical outcomes of microvascular decompression for treatment of trigeminal neuralgia compressed by the vertebra-basilar artery: a case series review - BMC Neurology

Background Microvascular decompression (MVD) is a type of neurosurgery used to treat trigeminal neuralgia (TN) caused by the vertebrobasilar contact/compression. The surgery is not risk-free, however; it may cause recurrent facial pain or other side-effects. The objective of this study was to...

bmcneurol.biomedcentral.com

There can be side effects/risks in approximately 10-20% of cases, but these are usually livable/ inconveniences rather than detrimental; e.g., mild-moderate hearing loss in one ear.

I would seriously consider this before ctb as it can virtually cure people of TN. But, the choice is obviously yours. TN is seriously hell from my reading of it (background in psychopharmacology & health psychology)

Thank you! I don't think I'm a candidate for MVD since there's no infringement from the standard MRI - I read I need a fiesta MRI though. I'll bother them about it at my next neuro appointment. Would be nice to have a solution. It is hell

 

[Rhizomorph1]

Thank you! I don't think I'm a candidate for MVD since there's no infringement from the standard MRI - I read I need a fiesta MRI though. I'll bother them about it at my next neuro appointment. Would be nice to have a solution. It is hell

Definitely push for it

Otherwise, SN is an option. Like I said, if they know you're considering MAID/etc. they should hopefully expedite your treatment including specialized diagnostics & surgeries.