The doctors have finally figured out why I have severe migraines, a screwed up heart, chronic sinus problems, nose bleeds, deafness, vertigo, and more.
I have brain/head tumors.
The chronic nose bleeds and sinus problems were caused by it spreading to my nasal cavity a year ago, but the doctors kept brushing me off. Eventually I learned to live with the pain, which continues to this day.
Within the last 6 months my heart is giving up due to the screwed up signals going to it, and I’ve lost almost all of my remaining hearing. I went to get new hearing aids several weeks ago, only to find that I failed my hearing test so badly I was no longer a candidate for them.
Within the past week I started losing my ability to swallow and it always feels like I’ve got a lump in my throat.
I’ve got an appointment this week to determine the type/prognosis of this issue, but it isn’t good… and is probably cancer, considering the spread.
I’ve posted on here before about how guilty I felt considering taking my own life, and how hard it would be on my parents who can’t understand that desire. Thank you to those who told me that I shouldn’t feel selfish for not wanting to suffer through my health problems, which are looking to be more terminal every day. Letting go of the guilt helped.
My biggest fear at this point is winding up blind, deaf, and paralyzed. I’m already mostly deaf, and have creeping numbness. My eyesight is still reasonably OK, but I don’t know for how much longer. I’d rather die then end up in that state, but am not quite there yet. I’m going to work with a lawyer on a living will to prevent being forced to live using life support. However, since I don’t know what will regress when, it’s going to be a struggle every day to know if I should end it now or wait a bit longer. But, thank you again for telling me I shouldn’t feel guilty for this – it really does help.
I’m still not sure what to do about work. Right now, my cognitive ability is fine, my written communication is fine, but my deafness is and issue, and my verbal language ability is also degrading. They don’t know yet, and after they gave me a horrible review a few months ago for my “verbal communcation issues” (I can’t hear, go figure) I’m afraid to admit to anything. On the other hand, I probably face surgery/chemo/radiation soon, so I can’t not say anything forever.
I’m 32, single, no kids, and an only child. This is going to be hell for my parents, especially since my mother is also currently watching her mother wither away. They’re flying into town for my next doctor’s appointment, where we’ll get a prognosis together.
I don’t know if I’m strong enough to handle all of this. Part of me just wants to end it now. It’s going to end badly no matter what I do.
7 comments
Go to dignitas they can kill you nicely.
Oh man ur condition is far worse than mine…..iam 17 and i think we have similar disease….excluding tumer n deafness.what do u think?
@rohon tayeng – I’m still not sure what the root cause of all my problems are, although it’s probably genetic. I read your post and follow-ups, and it sounds like you get really bad migraines, possibly have nerve pain issues, and have some unresolved heart issues. The problems certainly could be neural, but that doesn’t mean you have a tumor, or even a progressive disease. If any of the tests done happen to be an MRI of your head, you might want to get a neurologist to look at them. If nothing else, it rules that out.
Thanks dude!
That is rough, I have had similar problems without the loss of hearing. I have had ever increasing migraines for 10 years now. I hardly function at all anymore, I’m trying to hold off on ending it as long as I can because of my parents. I can deal with the pain and everything else for a little while longer but I’m very afraid of loosing my ability to do it competently soon.
Zel, I didn’t know about the tumor part. Is it, after all?
I wanted to tell you, that you have been one of the nicest, welcoming people I have met on chat. And I wanted to thank you for it. I am so sorry for your misfortunes. You are a wonderful person.
No, I’ve been to several specialists since, and they ruled out a brain tumor (although there is some sort of growth in my nasal cavity that’s been causing some of my sinus problems and nose bleeds… still need to have that investigated farther).
In the end, they still don’t know what’s wrong with me. I’ve averaging a couple doctor’s appointments a week, while they try to figure it out.
It could be worse, I suppose.