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Diagnosis of Migraine & Headache Types

Never-ending headache since March 2015

  • By Electricity

    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!

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  • By Meaghan Coneys Moderator

    Hi Electricity,

    Thank you so much for sharing your story with us. We appreciate hearing your experience and being able to connect with you. It sounds like you have been through so much and even throughout all of it, have prevailed. I am sure it has been no easy feat, however the fact that you keep pushing is something to be proud of! We are proud of you! And definitely appreciate all you have shared with us. Please know we are also here for you whenever you need. It sounds like you have been seeing a variety of doctors. Have you seen a migraine specialist? If you have not, they may helpful with diagnosing and treating. You can find more information here – https://migraine.com/blog/how-are-migraine-specialists-different/, https://migraine.com/blog/looking-for-a-migraine-specialist/. Also, you may be interested in the following articles – https://migraine.com/migraine-and-mental-health/, https://migraine.com/migraine-and-mental-health/eight-emotional-stage-of-living-with-migraine/, https://migraine.com/blog/coping-skills-save-the-judgement-what-matters-is-finding-what-works-for-you/, https://migraine.com/blog/a-list-call-for-creature-comforts/. They discuss the relationship between migraine and mental health, along with providing self care tips. Furthermore, have you checked out our Facebook page? You may find it an added resource to connect you to others who have had similar experiences – https://www.facebook.com/MigraineDotCom/. I hope you find this helpful. If you have any questions please do not hesitate to reach out. We love hearing from you! And again, we are so happy you are a part of our community! Wishing you a lovely day.

    Warmly,

    Meaghan (Migraine.com Team)

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  • By Photini

    I can identify with your trauma!
    When I got sick, it happened all at once at work…like a breakdown and instead of kindness my husband was furious with me (I made more money than him). I couldn’t work and he made my life hell.
    Eventually, he divorced me. “It’s against my policy to care for someone who can’t work”, he said…He kept the house and everything for himself because I had no money.
    With my clothes packed in my car I drove away to stay in a friend’s garage…tears running down my face.

    It took years to recover from the shock of what he did to me.

    In the mean-time, I was sick! It took two years to get the diagnosis of atypical migraine and another year for fibromyalgia and more time for food allergies.

    It’s taken me 8 years to rise up and have a life again. I still go to a monthly depression group (side effect of fibromyalgia is depression)..

    In the beginning I was in shock, but over time…I’ve learned to change my environment, creating a safe place. No scented items, healthy food, low light (no florescent light), low noise. I stay out of big box stores, shop before it’s too hot or cold or too busy.

    I went regularly to a local teahouse alone and now I’m a regular. It is a quiet and happy place which reduces stress.

    I have a female doctor who has migraines and understands me. Took many tries to find her! (Had some terrible doctors who dismissed me as having anxiety at first and a neurologist who told me to just live with my pain).

    Topomax has worked for me, but lifestyle changes have been just as important I believe in reducing attacks.

    I rarely get headaches but I do get nausea, sinus pain and ‘toothaches’ (I have dentures so ha!). An odd symptom is that exercise gives me heart attack symptoms so I can’t exercise.. weird!
    Light, sound, smell sensitivity…exercise…stress. Hard to control everything but I have a good routine.

    My hope for you is that you will be patient with yourself and realize that your journey can improve. There is hope.

    I used to go to a fibromyalgia group and 90% of the people who went there were complaining about their lives but didn’t want to change anything. They were stuck or afraid. After 4 years, I quit. I was interested in living life and I couldn’t pry anyone in the group to get out for a cup of tea or anything else.

    Tiny changes add up to big improvement over time.

    I’m hopeful that your life will be less stressful and less painful too.

    Many Blessings

    Photini

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