Hello, everyone. I am struggling a lot and I really need help. I can’t take much more of this. My doctors can’t give me answers and I don’t know what direction to take. I’m a 38-year-old woman.
I’ve had a number of endocrine problems most of my life and I have had depression since childhood. I was also diagnosed with PTSD in 2009. I also ended up on disability (SSDI) in 2009 because of numerous health issues at that time. I did get a bit better once I was able to take time off work. I still wasn’t able to work, but I was able to take care of myself and manage my life. Well…something bad happened. I won’t get into ALL of the details, but I had a very traumatic ordeal that went on for well over a year from late 2013 to early 2015. I was under immense stress this entire time. Short version: a neighbor threatened and harassed me repeatedly and no one would intervene. It affected every aspect of my life and culminated in one final terrifying incident. I was in an absolute panic and was mocked and told to just move out. The neighbor ended up getting evicted over his behavior, but I didn’t know that was going to happen and I thought he was going to continue living there after the incident and I was suicidal to be honest. As I mentioned, I’m on disability and I couldn’t afford to move so my only other option would be to go to a homeless shelter, and I was certain that I would end up murdered otherwise. I cried myself to sleep the night of the final incident, and after I was asleep for two hours, I woke up in the worst pain of my life. I was also blind in one eye. The pain and the vision loss were on the right side of my head. I was also vomiting. I have never been the same since. I thought I was having a stroke and I was sure that I was dying. I did not seek medical attention because I had lost the will to live. I found out later that I did not have a stroke, though. I have had an MRI and lumbar puncture, both came back clean. My vision came back quickly but the pain stayed in full force for a week. It got better after that, but it transformed. Sometimes it tingles. Sometimes it throbs. Sometimes it aches. Sometimes it stabs. Sometimes it shocks. My vision is often blurry and I have what I found out are auras. I get visual migraine auras that don’t go away for months at a time. I will get a big spot the size of a thumbprint in my vision, and it won’t move for four months. My teeth chatter. I feel electric shocks in my head and my whole head will jerk. I have a tic or some kind of spasm on the right side of my face. My eyelid swells and the eyeball bulges and turns bright red. I actually look different sometimes. I wonder if I’m having simple partial seizures. I’ve been to the ER twice, once because fluid spontaneously started leaking from my ears after the room started spinning.
I’ve had chronic tinnitus since I was 12 years old (I was actually having episodes of vertigo at the time), but it’s become much worse since this all started. I used to hear a soft “whoosh” sound, but now it’s a high-pitched SCREEEEEEEEEEEEEEEEEEECH that never, ever stops. I’m sensitive to noise, light, and smell. Noise is the worst.
Out of nowhere, two weeks ago, I developed an intolerance to garlic. I got a strong whiff of garlic and I couldn’t stop throwing up for four days. My hearing is simultaneously worse and better.
Imitrex only helps a little. It reduces the ear ringing. It takes away some of the pain. Nothing makes it stop.
I’ve recently been given Topamax. That also helps a little.
I was diagnosed with hemicrania continua. My insurance won’t cover indomethacin for some reason (I have no idea why) and I’m on meloxicam. It helps slightly. The neverending aura reduced after I started taking it. It never completely goes away, though.
I hallucinate smells ALL THE TIME. Usually smoke, sometimes I’ll get a smell “stuck in my head” like you might get a song stuck in your head. I’ll smell something days after I smelled it, long after it’s gone.
Before this incident, I had never, ever in my life had a migraine, vision problem, or any kind of headache issue aside from maybe a mild tension headache that anyone would get.
The thing is…the pain NEVER stops. Never. My vision is always slightly blurry. Every second I’m awake I’m struggling. I don’t want to do anything. I’m so depressed. And it’s hard for me not to link it to that incident. Even if it was stress-related, why would it be permanent? The problem has been OVER for a long time! I still live in the same place, though and I still have to deal with some of the same people, and there’s nothing I can do about that, unfortunately. Being poor means having to deal with jerks who treat you badly.
I just hate that one hopeless situation was traded in for another one! Due to the timing, I am certain that this is all stress induced, I just don’t understand why it never goes away. I’ll be honest — I’m very unhappy with my current situation, but it’s much better and I don’t understand why this pain has persisted. I also have panic attacks now, which is not a problem I had before all this. I’m a mess. It will be years before I’ll be able to move, unfortunately. I’m trying!
I apologize for introducing myself on such a grim note, but anyway, hello!