Occipital Neuralgia

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Working with chronic daily head pain

Hi all,
This is my first post and I’m hoping ye can share your experience of work whilst having OCcipital Neuralgia with some other complications. Differential diagnosis of cervicogenic headache.
Ive had daily head pain since June ‘21. Never suffered from head pain before. Diagnosis and meds keep changing. Also have daily migraine, fatigue and motion sickness. The only treatment that has worked are GON blocks but this only lasts 5 weeks.
Tried Botox with no success.
I’ve been out of work since October and beginning to think this may become permanent.
Seven years till retirement age.
Work from home for a call centre with excellent pay and conditions so hard to walk away.
Anyone have advice about how they have successfully returned to work with chronic head pain and fatigue?
Thanks everyone.
#OccipitalNeuralgia

1 reaction 1 comment
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Do I have occipital neuralgia?

I have constantly been having this awful pain on the back of my head towards the bottom (sometimes burning, crawling or extreme pressure) it then wraps around the whole left side of my head and into my face/eye (tingling, burning, pain). It feels like a rubber band of pressure that wraps horizontally from back of head and over. My neurologist classified them as migrainous-like. However, I have no light, sound or smell sensitivity. Also, the pain is felt in the left side of my neck and both arms. The pain is constant and has not left for 2 years. I've tried Gabapentin and Amitripyline but I didn't like the side effects. A family medicine doctor prescribed me Cymbalta to try and I have felt anything after 2 weeks yet. Any thoughts? The pain is so debilitating that I just lay around all day and can barely get housework done and take care of kids/husband.

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Community

Find support and inspiration in our group for people with Dynamic Challenges who refuse to let limitations hold them back from enjoying, loving and living life and the great outdoors.
#Dysautonomia #EhlersDanlosSyndrome #OccipitalNeuralgia
m.facebook.com/groups/341684588871459

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I’m new here!

Hi, my name is Beck Noyes. I’ve read many articles from the Mighty online. I was surprised many of my diagnoses didn’t come up when I was signing up. I do have a few more rarer syndromes, including CRPS (complex regional pain syndrome/reflex sympathetic dystrophy - I have it full body and internal organs), gastroparesis, POTS, IBS, GERD, Fibromyalgia, chronic migraines, occipital neuralgia, chronic pain syndrome, chronic fatigue syndrome, OCD, C-PTSD, and an undiagnosed heart condition, possible undiagnosed other conditions.

#MightyTogether #AutismSpectrumDisorder

9 reactions 5 comments
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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?

7 reactions 6 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