My idiopathic occipital neuralgia

Around January of 2019 was when I started having weird symptoms like confusion, headache and caffeine intolerance/ induced headache. At the time I was sure that maybe my 5 cups a day was the culprit and I started trying to quit caffeine lol.

Eventually throughout the year my pain did fluctuate and become more noticeable and more characteristic of occipital pain and neuralgia. It was sharp shocking stabbing throbbing.

Around December of 2019 the pain had ramped up and finally hit a 10 for the first time in my life. The doctor I saw didn’t know much gave me 2 bottles of norcos and scheduled me a ct scan and referred to a neurologist.

The neurologist quickly gave me a run down as I was aware of occipital neuralgia but was more concerned of what could’ve been signs of MS, especially given that I started to have urological problems the same time.

I got an mri (brain). He also prescribed Elavil(didn’t work), gabapentin (did work) and 3 nerve blocks 3 weeks in a row. After not being satisfied with the dr I decided to change neurologists.

With the new neurologist I got 2 more mris (Brain w contrast, cervical spine w/o) that calmed my fears of MS for the time being(still not ruled out). I have since upped my Gabapentin to 1200 mg, started Robaxin 500mg nightly for sleep. And I’ve gotten at least 4-5 nerve block procedures, and 2 Botox with this new neurologist. I also tried topamax (didn’t help).

I did see a physical therapist which did really help for a while with starting to move my neck again since I stopped.

Currently I am still stuck with around a 5-6 pain daily that leaves me with a kind of cog fog. I am currently seeking neuropsych testing so I can hopefully get a prescription for a stimulant since my attention/memory problems have become unmanageable since the start of the neuralgia.

I am seeing my neurologist again on April 14th and plan on talking about RFA since Botox hasn’t done much and she said that last time oral steroids weren’t a good choice for me.

Edit* 21 yr m

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👤︎ u/jao1999
📅︎ Mar 16
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Gastaut Occipital lobe epilepsy+temporal lobe epilepsy.

Hi, I'm Nick, I'm 18yo and have had epilepsy since age 11 or 12. Been struggling so much lately, stuck in my basement due to another outbreak in my province. My epilepsy is so damn weird, technically I have multiple seizures a day, but I don't lose consciousness or nothing like that. I get weird feelings of panic, weird invasive thoughts of stuff just popping in my head, the weird thought part is hard to describe, it's like I'll feel an "episode" I call them, coming on and I sometimes just think of something completely random, like a number, or a place or something that I've never heard of??? Idk. It's the best way I can describe it rigjt now without putting my head through drywall. And Deja vu, I know this one happens to some people. Since I have the occipital lobe epilepsy I get the lights and shapes in my vision too but the thing is, is that I don't even wanna call them lights and shapes, I don't know what to call them, it's so hard to describe, when I get my episodes and all the effects come on, I just get pure panic, anxiety and feel like my damn hearts gonna pop. When I was in grade 10 I had a pretty bad day. I was having grand mal seizures for 30mins back to back. No waking up. This happened in school too. Got sent to hospital and all of course. Almost died that day but I pulled through. Had another one a few months later but I've been free of the grand mals for a few years now. Anyone else share any similarities to this? Might update it if I think on anything.

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📰︎ r/Epilepsy
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📅︎ Mar 01
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Occipital neuralgia - medication that helped?

Has anyone had any medication that helps them with ON pain or any kind of nerve pain?

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📅︎ Mar 18
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Occipital Nerve Decompression post-op 8 days...
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👤︎ u/TNwarrior
📅︎ Feb 25
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Occipital neuralgia - anxiety, neck cracking, and chiropractors

This will be a bit of a long post detailing my story and experience in the hopes that it might resonate with some people

I suffer from what I'm pretty positive is occipital neuralgia. I used to see a chiropractor as I've always suffered with headaches, and unfortunately I have a niggling feeling that the chiropractic adjustments are what indirectly caused it. After each visit my neck would be very sore the next day, it's like my muscles tensed up in response to the adjustments. They were already incredibly tense as I suffer from severe anxiety and neck tension and tension headaches are one of my main physical symptoms. I'm hyper mobile, so most of my adjustments focused on my c2 and c3 vertebrae, and my occiput (base of the skull). Every visit the chiropractor would comment on the tightness of my suboccipital muscles, and while by spine and occiput were aligned correctly, the muscle tightness persisted. I believe it is this tightness that puts pressure on my lesser occipital nerve and that's what causes my symptoms:

  • a constant mild burning/tingling feeling up the left side of my head
  • pressure in my nose and cheek
  • intermediate stabbing sensations on my scalp, temple and behind my eye
  • extreme tenderness at trigger points at the base of my skull and the boney bit behind my ear
  • occasional pain in ear
  • mild dizziness/spaced out sensation when it's really bad

When I had mentioned all these to my chiropractor he did say it sounded like occipital neuralgia and continued with the occipital release manouvers. Sometimes they would help, other times they would not, and in the end I gave it up as bad job.

I ended up visiting the doctor a few time regarding headaches and was dismissed with a diagnosis of chronic tension type headaches which, while I do believe that to be correct, I don't feel is the whole story. As treatment I was simply told to take ibuprofen or paracetamol as and when I need it, which for me is most days. Of course this worries me as I'm only 18 and I don't want to be overusing these medications so they damage my liver/stomach or overtime become ineffective, however when I expressed these concerns to my doctor they were dismissed.

So here I am today, stuck with these strange headaches that, while they are not usually all that painful, are incredibly annoying and cause me great anxiety. Anxiety is the one thing I find makes them worse, as of course It makes me tense up and gives me headaches. When I have an anxiety free period, i tend t

... keep reading on reddit ➡

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📰︎ r/migraine
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👤︎ u/ppetaldust
📅︎ Mar 13
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Results from my PET scan showing hypermetabolism in the occipital lobe and lingual gyrus. Take this to those who aren’t aware and/or deny VS is a thing.
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📰︎ r/visualsnow
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📅︎ Dec 22 2020
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Anyone have occipital seizures or hallucinate coloured squares, circles and triangles with their seizures?

Hi All,

So I just had my first appointment with a neurologist who tells me that visual hallucinations are psychotic, with no basis in organic disease. Anyone else experience non-complex visual hallucinations and has had better luck with their doctor? Feeling a bit desperate.

Also: Have been assessed by a psychiatric nurse, psychiatrist, and psychologist who say there's nothing much wrong with me, only that experiencing poor health care has affected my mood LOL.

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📰︎ r/Epilepsy
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👤︎ u/No_Camp_7
📅︎ Feb 18
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As one Occipital Neuralgia sufferer to another, all tips help! Backbends have MASSIVELY reduced night spasms for me, I pray this helps you too. As a qualified Yogi, if it hurts stop & do not turn your head left or right whilst it’s back, gently does it & I’m all the way here for collective healing. v.redd.it/z3dlyndmivn61
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📅︎ Mar 18
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What has helped your occipital neuralgia the most?

Any treatment that has made a significant impact on your pain. If you have a resource, link it!

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📅︎ Mar 04
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Just had occipital nerve decompression. Ask me anything.
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👤︎ u/SciArt0917
📅︎ Feb 13
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Backbends look great but what do they do? For me Backbends help relieve Occipital Neuralgia, anyone else find this?
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📅︎ Mar 13
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occipitals

Post number: 159131

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📰︎ r/manywords
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📅︎ Mar 17
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If u have Occipital neuralgia/ back of neck pain

I was without a doubt convinced I was experiencing this, I brought it up to my neurologist, describe my pain raditiafing form the left back side of my skull towards my eye, the constant, and the few times I had a shooting pain, and he just said “yeah probably” or “yeah maybe” and asked if I wanted to start physical therapy for my neck.

Devastated and defeated by the awful pain I was experiencing for weeks, I went to YouTube. I found this chiropractor who I was already a fan of, and followed along to two of his videos, felt like they didn’t give me the instant relief I wanted or like I did something wrong, and went to bed that day still in just as much pain, if not sorer.

About two days later I realized, the pain was gone, and it never came back!!

Here’s the videos,

https://youtu.be/hnMw8BEbHJc

https://youtu.be/kikuQOK5d3E

The first one I really felt like I wasn’t doing it properly, but it still felt good. The second one I percussed the HELL out of my neck and felt no tingling like he described, and was disappointed.

But they worked, they really worked, for me, and if you read the comments especially for the percussion one, they worked for people suffering for years from this pain!!!

It’s not instant, but I never even repeated the percussion like I meant to, my pain just left.

I just wanted to share my experience in case anyone else wants to try these, my pain was becoming unbearable and I was so tense and stressed from post covid that I was holding my neck sooooo tight and developed this constant pain I couldn’t shake.

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👤︎ u/axxacer
📅︎ Mar 16
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First occipital nerve block really scared, expectations and what to expect?

So i have had a severe migraine going on over 2 months now with no break, and nothing has helped, we have tried steriods, anti psychotic medication, migraine cocktail, rizatriptan, cbd in multiple forms, and now my neurolagist is suggesting nerve block shots and im curious other peoples experiences and what to expect.

I am very scared of shots, i have frequent panic attacks and i dont have a high pain tolerence, and im just trying to see what i should prepare for in 2 days i have the procedure. Any info helps!

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📰︎ r/migraine
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📅︎ Mar 10
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Increased Occipital pain when clearing throat rather roughly or coughing hard?

Hi everyone, I’ve been posting on this subreddit rather frequently within the past couple of days. I haven’t gotten diagnosed with Occipital neuralgia yet but all the symptoms I’ve been experiencing so far have led me to believe I have it at some degree. I was wondering if anyone else experiences the pain in the back of their head increasing or triggering when they cough or clear their throat? I want to find out if this is normal with Occipital neuralgia or not. Thank you, I’d love some feedback.

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📅︎ Mar 16
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Is this an occipital bone? And from what? reddit.com/gallery/lqo3sk
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👤︎ u/Arch2000
📅︎ Feb 23
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26F Occipital Neuralgia headache on day 8-- at home relief?

TL;DR: At home occipital neuralgia relief after 8 days of a headache?

I am a 26F (5'7", 175 lbs, white) who was diagnosed with occipital neuralgia in January. I am under the care of a neurologist undergoing the diagnostic process for what she believes might be an autoimmune disorder affecting my nerves.

The headaches developed in December 2020 after 5 1/2 years of chronic pain. They typically resolved after going to sleep. I was seen by my neurologist in late January who diagnosed the headaches. I was scheduled for a nerve block on Feb. 18, that was postponed until April 13 after I had a fever from the COVID vaccine.

I am currently suffering from an 8-day headache. My neurologist has not returned my request for calls. Her secretary denied an initial request 5 days ago to ask for steps I can take for relief; the secretary said yesterday she would ask the doctor but did not call back. An ER visit would cost over $800 and I'm not sure they can help me.

The headache is causing extreme pain and nausea. I am mostly able to work through it, but in the way any chronic pain patient can work through things-- I'm at my breaking point and will not be able to keep it up for much longer.

What steps can I take at home to find relief ahead of my nerve block? I have tried rest, ice, heat, Excedrin for migraine, caffeine, and low THC high CBD marijuana and have not found relief.

I drink socially (~4 drinks a week), exercise ~1 hour daily + 3 miles of dog walks, and have only taken medical marijuana twice. I also have chronic idiopathic urticaria that is autoimmune in nature and treated with once monthly Xolair injections.

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📰︎ r/AskDocs
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📅︎ Mar 16
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Occipital Neuralgia or something else?

Hey everyone.

In December I had a cpuple of headaches that felt like severe brain freeze behind my right eye. I also had numbness and tingling in my right cheek. I could still move it fine, just felt weird. My headache slowly moved to my temple and rright above my right ear. Normally a short while before and after I would have a tight feeling on the right side of my head and then the pain.

I went to the doc and she said it was a pinched nerve in my neck. She gave me strong pain pills, muscle relaxant and calming pills. It worked and in about 2 weeks it was gone.

Now, about 5 days ago I awoke at 4 in the morning with my headache back as well as the tingling in my cheek. It comes and goes and in between the bain I have slight discomfort now and then as well as the tight feeling.

Should I worry?

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📰︎ r/migraine
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📅︎ Mar 13
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Has anyone had experience with an MRI not picking up their occipital neuralgia?

Hi everyone. I’ve had a headache on the right side of my head behind my ear everyday for almost 4 months. I have a history of migraines, but they occur in my left temple, and I experience auras. After several medication trials, my neurologist ordered an MRI which didn’t show anything of concern. I’ve been reading about occipital neuralgia, and my symptoms seem similar.

My question is: has anyone had a MRI that did not show occipital neuralgia, but still have that diagnosis?

This may be a dumb question, but I feel desperate. Thanks!

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👤︎ u/Sundayjo
📅︎ Feb 08
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I get pain / headache like feeling in the back of my head when I’m either stressed, or concentrating at my workspace looking at screens. Could this be Occipital Neuralgia?

I’m really confused on what this may be. I have a movement disorder called essential tremor (ET), and my head sometime has a twitch / shake in the back, but ET does not cause a headache like feeling in the back of my head. Any advice?

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📅︎ Feb 20
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How I Fixed 1yr+ of Chronic Neck Pain (chronic whiplash, occipital neuralgia, myofascial pain syndrome, etc)

I told myself I would make a post here if I ever got better and so here I go. If this helps even one person, I'll be happy. If it doesn't, that's fine too as I'll leave it up and hope someone finds it through the search bar. I'm using a throwaway because I don't have a Reddit account and instead just lurk.

My symptoms: Hypersensitivity in my lower neck where my neck meets my skull, a sense of great pressure build up in the same spot, burning scalp, general dull aching pain throughout my neck, random stabbing pains in my lower neck, neck stiffness

https://i.gyazo.com/749c5e1d183b0236a4f93091059f6d63.png

^the red circle is the area where I felt the most pain and pressure

Backstory: I am a college student in my early/mid 20s. During the Summer of 2019, I was waiting at a red light when I was rear-ended by an inexperienced driver renting a u-haul truck. The truck was probably going <10 mph as I had minimal damage to my car. My neck was violently jerked forward and back, but ultimately I felt completely fine. The other driver tried to convince me to take cash instead of going through insurance as I only had a slightly dented bumper. I refused at first and called 911 to file a police report, but the cop never showed up even after waiting for almost an hour. As it was a hot summer day, and I was getting thirsty and impatient, I called my family and asked them if I should just take the guy's money. I showed them the pictures of my car and I reassured them I felt completely fine, and so they convinced me to take the money and leave. Not even 5 minutes after leaving, I get a call from the responding officer asking where I was (couldn't believe it...). I told the officer we dealt with it amongst ourselves and that I had left to go home.

Anyway, a couple hours later I started to feel a slight pain in my neck. I didn't think much of it, I only sighed deeply and told myself that it must be what whiplash felt like as I had never experienced it before. As the days went by, the pain grew worse and worse and eventually after about 2 weeks it went from a daily 2/10 to a 9/10. I had my first real panic attack after realizing the pain wasn't going away, and was quickly rushed to the ER because I had feared I might have torn a ligament or somehow fractured my neck.

The doctors took multiple x-rays and even a CT scan of my neck/back and said I was in perfectly good health. The initial diagnosis I rec

... keep reading on reddit ➡

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📅︎ Jan 30
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My Entire Trigeminal Neuralgia / Occipital Neuralgia story. 3 years without an episode... until this week.

Hello. I just found this subreddit today and I am glad I did. Most people just cant understand what these episodes are like and its great to have a place to talk about it. I figured I would tell my entire story here so if others want to compare their situations or whatever.

I have a pretty bad habit of cracking my neck. When I was 11 I noticed that I could really crack my neck loud and often. Like its pretty impressive. People across the room will look up at me when I do it. It became a daily thing I still do to this day and I am now 35 years old.

My first Occipital episode.

My first episode happened around 2009. I was 24 at the time and woke up with a massive headache stemming from the back upper part of my neck. It was deep and felt almost like pressure. But also the back neck muscle on my neck felt like it had a knot in it. I wasnt sure what caused this or even what it was at the time. I didnt know if maybe the muscle was causing the head pain or not but that seemed like a pretty good assumption at the time.

It was bad. I was on the floor crying and holding my neck in the fetal position bad. I felt like my neck REALLY needed to pop and that somehow if i could get it to pop it would feel better. My GF at the time had no idea what was going on but she brought me the only pain killer she had in the house which was Pamprin. I took it.. I didnt care. 10 to 15 minutes later the pain starts to go away. Low and behold. My neck pops and its not the relief I was hoping for but it does feel slightly better.

The next several years

For the next year I feel my neck getting tight and I pop it and it feels better. Stops being tight and everything seems fine. If I feel it getting tight and I cant pop it then I take a Pamprin and give it like 10 to 15 minutes and it pops again and everything is fine. Basically business as usual. After about a year from the first episode I notice one day that my neck wont pop. I take the Pamprin and nothing. It gets worse and worse so I take another. Nothing. Full blown second episode complete with vomiting and fetal position and a 30 minute shower as hot as it will go trying to relax my neck.

I eventually after about 4 or 5 years/episodes I talk to a doctor at my work. (I worked at a mental hospital at the time) He told me I should come in for an X-Ray and called and told them I was coming in. They gave me an X-Ray and he told me I have degenerative disc on my 6th and 7th vertebra. He also told me I had signs of Inflam

... keep reading on reddit ➡

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📅︎ Jan 09
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Does anyone have dizziness/headaches from occipital neuralgia

I have been dealing with a slew of issues like dizziness, lightheadedness, headaches, PPPD-like issues etc. for over a year now. Amitriptyline was a near-miracle that reduced most symptoms significantly. However, I still experience all of them, just less intensely.

I'm seeing two PTs for this, and am fully aware that I'm usually sensitive (get dizzy) when they touch my upper neck (suboccipital muscles area).

Last Thursday I decided to go for massage. Had many in the past and always benefited from them. It went okay enough until she started this dragging thing with her fingers - she would push her fingertips down on my neck and drag them up my skull to the top of the head. The very first time she did it, I felt immediately woozy, and the more she did it, the worse it got. I had to ask her to stop the treatment, and it took me almost 2 hours to feel normal again. The first half an hour after the massage was like a flashback from my super dizzy/lightheaded days. Thankfully, it went away.

My question is: does anyone experience headaches, other than back of the head stabs (which I had occasionally) at back of the head, top, eyes/sinuses areas, sense of pressure in the head and behind the eyes, or dizziness, and/or pain at the back of the skull where the occipital nerve emerges? I read that Ami is one of medications used for occipital neuralgia, so if this is my problem, it would explain why it helps me so much with both headaches and dizziness.

I did see my doctor and had MRI and other tests, and nothing seems to be wrong, from what the results show. This is so very frustrating.

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👤︎ u/pheebee
📅︎ Feb 15
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Occipital Neuralgia pain on BOTH sides of head after possible concussion/ neck injury??

21 years old, Male, 151 pounds, 5’11”, occasional alcohol consumption.

Firstly I don’t know for sure if this is occipital neuralgia but from what I’ve read it feels like it could be...

Almost 4 weeks ago snowboarding. I don’t believe I blacked out and when I got up I didn’t notice any major headaches (I had a slight headache before the hit) and I didn’t feel dizzy or throw up and didn’t feel confused at all either. I was able to balance as well as I walked the rest of the way down the mountain. The next morning my neck hurt a lot and I couldn’t even lift my head up from my pillow without the use of my hands doing the work for me. Two days after that I started feeling a sharp pain in the back left part of my head which would sometimes radiate up to the same side of my scalp. The pain throbbed when it would occur but only came in “shocks” and wasn’t constant. The area where I experience the pain hurts when I touch it (most of the time). The pain is also worse when I would be standing. A day or two after that I would get the same pain on the right side of the back of my head but not as frequently. This pain would sometimes radiate up towards my scalp as well. Over the past 4 weeks I’ve been experiencing these pains. I finally got a CT scan done of my head today that my doctor ordered last week. The results are supposed to come in at the beginning of next week but I’m worried because the CT scan wasn’t of my blood vessels or arteries in my head, (wasn’t a CTA scan). Should I be worried that I have this occipital neuralgia type pain on BOTH sides of my head. Could it be caused by blood vessels or arteries in my case? I still experience muscle pain on my neck near the bottom of my skull on both sides as well occasionally.

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📰︎ r/AskDocs
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📅︎ Mar 12
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Kind of hard occipital lymph node

I have a somewhat hard not very movable occipital lymph node. I’m pretty sure I felt this almost 2 years ago and forgot about it. All of a sudden over a week ago it was more pronounced (I had 2 cystic pimples on the back of my neck also) so I have been down a rabbit hole. I went to urgicare and he told me it was a reactive node so then I said well it’s like this almost 2 years and then he said get a biopsy immediately if it’s there that long. So I said it hasn’t changed size and he said it’s small and not alarming in shape or size. So then I went to my primary. He felt it and said “I have no idea how you even found this” and I begged him for an ultrasound and he said no they will laugh at me. So I said when I move my head a certain way it’s so much more pronounced and it’s kind of hard and he said basically when you move your neck or head things inside will also move with you and that’s normal. I am still a wreck and now I am scheduling an ENT appt to see if he’ll do a biopsy but my MIL is a nurse and said that it’s less than pea size and someone movable. It definitely doesn’t move side to side but if I press on it it kind of “flattens”? Anyone relate to a node that you can feel when you turn your head a certain way? Does movable always mean side to side? But I just hate that I feel it and know it’s there.

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📅︎ Mar 08
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Occipital Neuralgia and diminished sexual pleasure? Is this even occipital neuralgia?

Hello there, thanks in advance for reading this. I guess I have 2 questions. I have an appointment with a neurologist in a few weeks but it's hard to wait that long without any answers.

1st is if I even have occipital neuralgia? I've had a stinging/burning/tingling sensation on the back of my head/scalp for about 2 weeks. I compare it to the pins and needles feeling you get when your arm or leg "falls asleep" except it's my scalp. A lot of posters here seem to have very severe, debilitating pain and this is NOT that intense. I can go about my daily routine/work/errands etc, I just have this constant stinging/tingling feeling in my scalp. It was very intense the first few days and has gotten less and less painful each day, but it's still there. It started the same time I had the worst migraine I've ever had, excedrin took the migraine away but now I'm left with this stinging sensation I'm self diagnosing as occipital neuralgia.

2nd is about sexual pleasure. I've since noticed that I'm not really able to enjoy sex or masturbation anymore. I still have normal physiological responses, I can get and maintain an erection, and can have an orgasm and ejaculate, but I'm not having even half the pleasurable sensations I used to and I'm wondering if it's because of the nerve stuff. Normally when I have an orgasm I feel it in my whole body but now it's kind of like I'm just watching myself ejaculate, but there's very little pleasure. I'm not sure I'm explaining this well, but has anyone noticed or experienced anything similar? I'm terrified that my ability to have pleasurable orgasms is gone and I'm not sure what I can do.

happy to provide more info but this has been bothering me for the last few weeks and wanted some input from others who've dealt with this. thanks again in advance

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📅︎ Feb 20
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TIL Anton syndrome is a rare symptom of brain damage occurring in the occipital lobe. Those who have it are cortically blind, but affirm, often quite adamantly and in the face of clear evidence of their blindness, that they are capable of seeing. amjmed.org/eyes-are-usele…
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📅︎ Oct 08 2020
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Occipital neuralgia vs post concussion syndrome?

Hello,

I'm trying to determine whether my chronic headache is from ON or PCS. I got a whiplash/concussion injury 1.5 year ago and have had a chronic headache ever since. The pain is generally a constant dull to moderate baseline pain from the occipital region with several flashes of more intense pain all around head throughout the day lasting seconds to minutes to hours. I've tried endless meds, injections, therapies, treatments, etc. that I could list out but none of them have helped even a little. I was first diagnosed with post concussion syndrome, then some doctors starting saying it might be ON. My other symptoms include the anxiety and depression that come with having a chronic headache.

I have gotten occipital nerve block injections but they didn't help, which certainly makes me question whether its ON, but my symptoms seem more in line with ON than PCS. My neurologist recommended that I look into occipital nerve decompression surgery, but the surgeon says that since I wasn't responsive to the nerve block I wouldn't be a good candidate.

Does anyone have experience with ON caused from a whiplash trauma? Are nerve blocks the only diagnostic tool? Anyone get the nerve decompression surgery?

Thanks, I appreciate any input.

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📅︎ Feb 03
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Indent/bump on back of the head. Occipital bun or Chiari malformation? reddit.com/gallery/lrl2sf
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📰︎ r/DiagnoseMe
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👤︎ u/Kiriume-
📅︎ Feb 24
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Are those flickering lights you see, or the malfunction of your occipital lobe.
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📅︎ Jan 14
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26F Occipital Neuralgia headache on day 8-- at home relief?

TL;DR: At home occipital neuralgia relief after 8 days of a headache?

I am a 26F (5'7", 175 lbs, white) who was diagnosed with occipital neuralgia in January. I am under the care of a neurologist undergoing the diagnostic process for what she believes might be an autoimmune disorder affecting my nerves.

The headaches developed in December 2020 after 5 1/2 years of chronic pain. They typically resolved after going to sleep. I was seen by my neurologist in late January who diagnosed the headaches. I was scheduled for a nerve block on Feb. 18, that was postponed until April 13 after I had a fever from the COVID vaccine.

I am currently suffering from an 8-day headache. My neurologist has not returned my request for calls. Her secretary denied an initial request 5 days ago to ask for steps I can take for relief; the secretary said yesterday she would ask the doctor but did not call back. An ER visit would cost over $800 and I'm not sure they can help me.

The headache is causing extreme pain and nausea. I am mostly able to work through it, but in the way any chronic pain patient can work through things-- I'm at my breaking point and will not be able to keep it up for much longer.

What steps can I take at home to find relief ahead of my nerve block? I have tried rest, ice, heat, Excedrin for migraine, caffeine, and low THC high CBD marijuana and have not found relief.

I drink socially (~4 drinks a week), exercise ~1 hour daily + 3 miles of dog walks, and have only taken medical marijuana twice. I also have chronic idiopathic urticaria that is autoimmune in nature and treated with once monthly Xolair injections.

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📅︎ Mar 16
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One year since my RFA for occipital neuralgia.

Just wanted to share that it has now been a year since I had my RFA on the third occipital nerve. I was very scared to have this procedure done but I no longer have pain every second of every day. I have a flare up once a month but it’s much more manageable. I feel very lucky to have come this far in my chronic pain journey. For all you struggling, I hope you find something that brings you much needed relief soon!

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📅︎ Feb 14
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Occipital Neuralgia after possible concussion/neck injury on BOTH sides of head??

Almost 4 weeks ago I hit the back of my head snowboarding. I don’t believe I blacked out and when I got up I didn’t notice any major headaches (I had a slight headache before the hit) and I didn’t feel dizzy or throw up and didn’t feel confused at all either. I was able to balance as well as I walked the rest of the way down the mountain. The next morning my neck hurt a lot and I couldn’t even lift my head up from my pillow without the use of my hands doing the work for me. Two days after that I started feeling a sharp pain in the back left part of my head which would sometimes radiate up to the same side of my scalp. The pain throbbed when it would occur but only came in “shocks” and wasn’t constant. The area where I experience the pain hurts when I touch it (most of the time). The pain is also worse when I would be standing. A day or two after that I would get the same pain on the right side of the back of my head but not as frequently. This pain would sometimes radiate up towards my scalp as well. Over the past 4 weeks I’ve been experiencing these pains. I finally got a CT scan done of my head today that my doctor ordered last week. The results are supposed to come in at the beginning of next week but I’m worried because the CT scan wasn’t of my blood vessels or arteries in my head, (wasn’t a CTA scan). Does this sound like ON? Should I be worried that I have this occipital neuralgia type pain on BOTH sides of my head? Could it be caused by blood vessels or arteries in my case? I still experience muscle pain on my neck near the bottom of my skull on both sides as well occasionally.

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📅︎ Mar 13
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Occipital neuralgia. Cervicogenic headache

These occipital neuralgia headaches are getting the best of me lately. Im pregnant so im limited on what I can do for relief but everything I'm trying hasn't helped. Any suggestions?

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📅︎ Jan 01
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