Occipital Neuralgia

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Very intense neck pain

#Undiagnosed #neck #OccipitalNeuralgia ?

I’m hoping someone has experienced this and can give me some insight; my doctor can’t figure it out.

I have recurring, intermittent pain just behind and below my left ear, at the side of my neck and just above jawline; usually in place but sometimes I can feel it radiate down my neck and into the top of my shoulder a little as well. The pain is incredibly intense, like a pulsing sun exploding over and over in the same place, in 1-2 second intervals.

Sometimes it lasts for five seconds, sometimes for hours. No known triggers or consistency. No pain inside the ear at all and no apparent physical markings.

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#Migraine #JointHypermobilitySyndrome #ThoracicOutletSyndrome #PosturalOrthostaticTachycardiaSyndrome

I have been diagnosed with POTS, hypermobility, CRPS, thoracic outlet syndrome and (a few other things that may or may not be related).

My new neurologist diagnosed me with migraines. I believe that diagnosis fits better than occipital neuralgia, which is what previous neurologist diagnosed me as having.

My new neurologist prescribed Emgality because I have been having 2-3 moderate to severely painful migraines per week. I just took my first double dose today. I was wondering if anyone here has taken it, what side effects (if any) you experienced, and did it work for you?

6 reactions 5 comments
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Overburdened Caregiver

I read in a scientific study that being a parent to a disabled child is as stressful as being a war vet who saw regular combat during their tour. I believe it. In fact, it helps me get thru my day and take it a little easier on myself. But guys, I am burnt out. I’m like the menorah on miracle crack lmao Every couple of hours I’m convinced I have nothing left to give, but then I sit next to my daughter. Eventually we laugh at something, and for a moment everything’s ok. Until I get up from the couch she only leaves once or twice a day (sleeps there, too), and I recall my mountain of tasks, and I look around and see my mom and brother going through their struggles unwilling or unable to help. I swear it feels like a tiny piece of my soul dies every time. I get it, my bro doesn’t like kids, my mom is disabled… that should be enough. But then I get criticized or gaslighted on top of it. The other day my mom was trying to offer verbal support and casually said, “I don’t know how you do it. If I was in your situation, I would’ve killed myself. But then again, I also wouldn’t have gotten pregnant by such a loser.” Pretty sure I froze up so hard I stopped breathing. My daughter is well within ear shot, looking at me apologetically. My mom notices my startled reaction and says, “what? It’s the truth,” shrugs her shoulders, then walks off. She was right about one thing. I have absolutely no clue how I’ve managed to stay sane in this house. The good news (I think) is that my psychiatrist has put moving out as equally important to my mental health as taking my meds regularly is. She said it’s “half of your plan.” But I can barely shower. How am I supposed to move not only myself, but my daughter, as well? God answered and Medicaid deemed me “an overburdened caregiver,” and 32 hours of assistance a week! If only the provider could find an attendant… in the meantime, I’m living moment to moment. Chore to chore. Clinging for my life from one silver lining to the next. Finding comfort in sugar. I’m losing my grip. Suicide isn’t an option. I’m the only human being my daughter has. And as long as we can still laugh, I will persevere. I just wish it didn’t hurt so damn much.
#MajorDepressiveDisorder #ComplexPosttraumaticStressDisorder #SuicidalIdeation #MentalHealth #Addiction #OccipitalNeuralgia #GeneralParenting #AutismSpectrumDisorder #neglect #Abuse

16 reactions 6 comments
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Suffering chronic occipital neuralgia

Anybody have a story or heard of anybody beat occipital neuralgia? I'm tired and can't take it anymore. Have been suffering since 2019.

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I'm new here!

Hi, my name is InnerLioness. I'm here because I have been diagnosed with the following:

#MightyTogether #Migraine #Fibromyalgia Cervicogenic headaches, Trigeminal Neuralgia, Occipital Neuralgia, Small Nerve Fiber Neuropathy.

Chronic head and neck pain sucks. Neurologist tells me I have to live with Trigeminal Neuralgia pain that Oxcarbezapine hasn't taken away. Topamax doesn't work for my migraine prevention (not looking forward to THAT withdrawal again). P.S. - Topamax makes you lose words & feel stupid! Injections in back of my head for occipital neuralgia are painful and debilitating for days afterwards - with sometimes marginal results. But, the injections are better than nothing. I think the Cervicogenic headaches may make migraines, etc worse, but who knows! Physical therapy has not worked ( I have done at least 40 to 50 sessions). Last ER visit at least gave me some short-term relief; Imitrex, Dilaudid, and Norflex. I realized that I have to bend my neck slightly downward while eating to avoid onset of nausea, dry heaves, vertigo, neck pain and severe headache. I avoid loud noises, stress and bright lights as they are migraine triggers. It's been a BAD pain week for me; I try to be positive; count my blessings. Next neurologist appointment in 4 days - wish me luck!

6 reactions 2 comments
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I’m new here!

Hi, my name is ShelbyBelle. My life completely changed when I was diagnosed with an illness that went undiagnosed for 10 years. Now I finally have an answer as to why I’m in so much pain and going blind, but adjusting after the diagnosis has been difficult.

#MightyTogether #IdiopathicIntracranialHypertension #OccipitalNeuralgia #TrigeminalNeuralgia #PTSD #Depression #Anxiety

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12 reactions 3 comments
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Jury Duty

I was called for jury duty this next week. I'm having a bit of anxiety over it. I was called in the winter but got out of it because that was my busy season with my
Pet sitting business. Well, this coming week will also be busy with pets and doctor's appointments but I didn't think they would let me out twice so I didn't ask for another postponement. One of the doctor appointments is a brand new doctor that in my city takes months, and I mean months, to get into. That same day I have an appointment with my psychiatrist who is retiring so it will be the last time I see him. I've been treated by him for over 15 yrs! The third doctor appointment the next day is for my eye and I absolutely need to see the specialist that day to get the injection for the retinal vein occlusion I have to keep the treatment going on schedule so that I don't lose my sight completely. I'm not sure what to do. To attempt to reschedule everything will be a nightmare! The thing is I may not be called to go to the court house at all because I have a high number, but I'm not sure if I should count on that. If I get stuck being called in, I have to find coverage for the dogs, cancel my appointments and it would probably be for just sitting around because I'm sure no lawyer would want a chronically ill, bipolar person on their jury! ARGH! I already caused a mistrial 30 years ago when I was pregnant and went into preterm labor during a trial that the judge wouldn't let me out of saying a high risk pregnancy wasn't an excuse and there were no alternates. What a mess! Has anyone else been called for jury duty? What did you do?

#Bipolar II #generalized Anxiety #Fibromyalgia # Retinal Vein Occlusion #OccipitalNeuralgia

10 reactions 3 comments
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"It's Okay"

I was listening to music today and this song came up by Imagine Dragons. I've been having a very rough time feeling unmotivated and have been down on myself. This song really helped me to put in perspective that we all have bad times...it doesn't mean we give up, it means we allow them to happen then get back to where we are at peace again. Here is a portion of the lyrics:

"....It's okay to be not okay
It's just fine to be out of your mind
Breathe in deep, just a day at a time
'Cause it's okay to be out of your mind

I don't want this body, I don't want this voice
I don't want to be here, but I guess I have no choice
Just let me live my truth, that's all I wanna do
Baby, you're not broken, just a little bit confused.
...."

My birthday is Saturday and I am feeling a bit sad that due to all of my illnesses, my life hasn't been what I thought it would be. I've lost out on so much. And then I give myself a shake and remember everything I have to be thankful for. On Saturday I need to celebrate me, who I am now, not who I was, or the things I used to be able to do. I hope I can wake up and tell myself "Wow! I made it another year. Way to go!" And then face the day with a smile and a sense of adventure for the upcoming year. I hopefully can say " I'm okay!" #Fibromyalgia #BipolarII #Retinal Vein Occlusion #Pre -Parkisons #RestlessLegsSyndrome #OccipitalNeuralgia #ChronicDepression #intractablechronicmigrains

5 reactions 3 comments