Occipital Neuralgia

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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?

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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

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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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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

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Pacing, Creative Coping and How Small Things can be done in Great Ways.

My name is Mita. I am a 42-year-old multidisciplinary artist and podcast hostess; a mother and a wife. I focus a lot on Pacing and Creative Coping strategies to get through my days with various chronic conditions.

Following a whiplash injury in 2015, is when my chronic pain/illness journey started. I’ve been diagnosed with whiplash, fibromyalgia, orthostatic intolerance/dysautonomia, chronic fatigue syndrome, occipital neuralgia and chronic migraines.

I am in pain every day. Some days my cognitive function is severely hampered due to Brain Fog. And P.E.M (Post-Exertional Malaise) can be a real stick in the wheel.

My baseline, on a good day, is a headache pain level 2-3, occipital neuralgia at a 2 and fibromyalgia pain level 4-5 (on the ‘In Office Doctor’s Pain Scale’) with migraine attacks every few days.

Since developing a chemical sensitivity, it makes the pain hard to control, as I cannot take most medications.

I experience Vertigo, muscle weakness and extreme fatigue on top of all the other crazy symptoms these conditions come with, and I am at a fall/faint risk if I am not careful.

Late fall, winter and early spring are the roughest months to get through, living in the Midwest as I am. But once the weather stabilizes and becomes warmer and if I have been prudent with my energy supply during the winter, then I can find myself living it up a little more during summer which is invigorating for the soul.

So, I am limited. Physically. This is my reality. I only have so much energy to go around and every day I need to pick and choose what I spend it on. I always have to keep in mind that I cannot overdraw my account. I need to balance my ‘checkbook’, if you will, to make sure I do not go down to zero, because I may not have enough to go around for the next day, or even the next couple of weeks if I do. But with Pacing I can lead a somewhat decent life.

ME-pedia describes Pacing as such: “…an activity management strategy to help ME/CFS patients limit the number and severity of relapses while remaining as active as possible…”

(Obviously, I am not perfect at Pacing as I find myself doing too much on occasions, due to getting impatient with my limitations. Overall, I’d say I do pretty well with it though.)

So, what do I choose to spend it on?  Well, some mundane tasks need to be done, like laundry or light cleaning, so I spread it out over a few days. I work within my boundaries which I have somewhat figured out via trial and error. This is part of Pacing. Ups and downs til you figure what You can handle.

I am a very lucky gal to have an extremely supportive husband and three children that help me with some of the heavier chores. The house would be in utter chaos if this was not the case.

When the mundane, pragmatic things have been taken care of, I choose to use my energy on the activities that fill me with contentment, keeps my anxiety levels down and overall contributes to a better state of mind. Whether they are Creative Coping Strategies, like painting, drawing, forest bathing, expressive writing, or just being with my family in the moment, or listening/making music (the latter depends fully on headache pain levels and brain fog but within my capacity, music will always have a part in my life).

I am also half of a duo in a podcast we have named Creative Copes where we talk about these exact things – A labor of love for ourselves and what we hope becomes an aid to others in similar situations. I save some extra energy for research and general podcast prep so I can co-host it, because the idealistic compassionate part of myself wants desperately for other people to feel less alone: a constant state of mind when stuck at home, in a body that does not compute anymore.

This is what I spend my energy on. Things that matter to me; that settle my body and mind and make my heart soar.

I am not all knowing and cannot be worldly with how limited I am: I am clearly not meant to be a main figure in changing the world!

But I can do Small Things in a Great Way, for myself, my family and others, and hopefully someone can feel less alone because of my story and be more inspired to get up each morning and meet the day head on. Love and light ❤️

I can be found on Instagram handle MitaMu.Art and/or Creative.Copes

www.instagram.com/creative.copes

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