Hi all! This is my first time posting in here.

My wife was diagnosed early this year with ON.
Her NP has given her some ideas to help, but none of which have helped.

I’ve looked into a migraine cap, as those have been highly recommended by others.
But I want to know if there’s anything else I can do to help

For context, I have cranial cervical instability (CCI) from hypermobile ehlers-danlos syndrome (hEDS). This causes daily migraines/headaches and severe neck pain.

I am scheduled to get migraine surgery in August. The surgery includes occipital nerve decompression- which means the area at the base of my head and top of my neck will be cut open. I’m concerned that this would damage my sub occipital muscles which are pretty crucial for controlling CCI symptoms by holding my head up and keeping everything stable.

But I also think this decompression surgery could help reduce my migraines severity and frequency, because at this point I am homebound.

I’ve also read that for some people, the positive effects of the surgery wear off after about a year, and the pain can sometimes come back even worse than pre surgery pain.

Does anyone else have any experience getting occipital nerve decompression surgery while having CCI? I’d love to hear your experiences before I go ahead with the surgery- and even if you don’t have CCI, but got the surgery for migraines, i’d like to hear your experiences too.

Hi! I’m looking for some advice from the community. I’m 90% sure I experienced some occipital pain yesterday. I was driving and got a super sharp pain which came on suddenly on the left side of my occipital bone near my ear. It lasted about 4 minutes and when the pain subsided there was some throbbing. Took Tylenol and then it happened again last night. After doing some research I’m pretty sure it’s occipital neuralgia. I’m no stranger to migraines but this was very different. It was painful and so scary. It actually gave me a panic attack and I was at a nail appointment and had to stop my appointment and I drove home crying 😭- downside is I don’t have insurance. Got denied for having hypertension while pregnant 😂. Until I can get it figured out I’m wondering what home remedies that help you all. Thank you!

Hello,

How is everyone? I am writing to you as a desperate person. You see, I am 21 years old and I have Arnold's neuralgia (occipital neuralgia). As you can understand, the pain is truly intense; it has become unbearable. I constantly go to the emergency room just to be pumped full of opioids, only to be sent right back home. I know that from their end, they can't do anything more because my neuralgia is caused by two spinal surgeries. My spine cannot properly stabilize my body weight, so that pressure travels up to my neck, crushing my occipital nerve, and this is permanent. The doctors have told me that as long as I have these surgeries, that pain will not go away, so it seems like it's something for life. I have been like this for 9 years, but over the last few months, I feel like I'm dying. The pain is overwhelming, I can't see properly, and it is accompanied by dizziness and nausea. As you can understand, I am desperate. 12 days ago, I underwent a procedure with the pain clinic (a sphenopalatine ganglion block) and Botox injections in my trapezius muscles. Instead of helping, it terribly increased my pain, and my doctor has already warned me that there is nothing else left to do in my case. I have considered ending my life because of the horrific pain I have been carrying since I was very small. I don't mean to victimize myself, but I hope you understand my pain and my situation. Currently, I am taking hydrocodone bitartrate + acetaminophen and Neosaldina—up to 18 pills a day, especially when I was during my university final exams.

I have taken all kinds of medications over the years, from analgesics, opioids, psychiatric medications, anticonvulsants, relaxing drops, etc.

Any advice would be highly appreciated.

I'll read your comments.

*Update on my case*:

Hello,

How are you? Look, yesterday I had a follow-up appointment with my palliative care specialist. Since she saw that I was overusing the medications I was taking (Neosaldina and acetaminophen + hydrocodone bitartrate) because otherwise they wouldn't work at all, she took them away and left me with absolutely nothing for the pain. She only gave me one last additional medication (duloxetine), which according to her is to try to reduce the inflammation in my nerves, because having such chronic pain for so long, we should try that. And she was going to discharge me. They tell me that there are simply patients like that, who never get better and are just left on permanent medication, and that's it. But I told her not to leave me to die like that—how could she just discharge me like that, telling me there were no more options for me? So, she sent me back to neurology to have a lumbar puncture repeated, because the one I had was already 6 years old and came back normal, so they wanted to see if I had intracranial pressure issues. She also referred me to neurosurgery, so that if I truly had that kind of severe pressure caused by my spine reaching my cervical area, the neurosurgeon would have to determine if any procedure could be done to relieve that pressure. Lastly, she ordered a CT scan of my spine and cervical spine, and said that from her end, she couldn't do anything else.

What causes me the most conflict is that she didn't try another pain medication. She told me she had tried everything (but when I first admitted, a general practitioner saw me and told me there were several medications, like morphine and buprenorphine patches, that we hadn't tried, and yet the specialist doctor still didn't prescribe them to me). Currently, for my pain crises, I have nothing that can help me, so I don't know what to do. It is agonizing, and sometimes I just want to die from how severe the pain is.

Over the past year I’ve been getting a sharp stabbing pain at the top of my skull slightly to the right

It comes on for anywhere between 2-20 seconds and goes away and comes back again maybe 1-5 mins later.

I’ve had blood tests, spine and brain MRI’s and nothing.

Has anyone had anything similar?

Can anyone suggest anything rather than amitripline or any other drugs?

i've been dealing with chronic migraines caused by occipital neuralgia for 6+ years. i am a 22 y/o woman and im sick and tired of having to defend myself. i hate when people refer to a passing headache as a migraine!! or say they know how you feel. or call it lazy when you have to leave work early or not come in. or call it an excuse when you cancel on plans. it's like a slap in the face.
i reached a breaking point recently where i just listened to my body. i didn't force myself to fight a migraine to please other people. it's been both a relief and extremely isolating. i used to rely on delta 9 products to be able to function socially, because almost immediately i would get pain from the noise and anxiety of being out of my home. it's been extremely helpful, but leaves me a stoned, stupid, silent shell of who i am.
we tend to sugarcoat the severity of our pain to make others feel more comfortable.
the truth is: this is a disability. it's not a choice, nor an exaggeration. we are valid in our pain and people need to understand that. there are so many of us that are suffering alone, only connected thru a screen. we deserve better. we need more friends willing to bring us a coke and fries to our bed, or a family member to help take out the trash. spouses that don't guilt you for your condition.
we have a voice! educate people around you! they may never understand our suffering, but they can try.
much love

Anyone else?? I get feelings of disorientation and anxiety pangs. Mild panic. Strange head sensations. I already have diagnosed generalized anxiety but this is when my head is bent downward and I'm reading or looking at my phone or just looking downward in general. My head and neck feel tense at the moment and I'm feeling all kinds of weird tingling sensations. Some of which I can't even put into words.

Details: 25F, 164 cm, 52 kg, non-smoker, no medications

My symptoms started in **February 2025**, shortly after I had a right **wisdom tooth surgery**. I don't know if the surgery actually triggered this or if the timing was just a coincidence.

Main symptoms

* Persistent headaches * My **left eye** became very bloodshot (the right eye sometimes as well, but much less) * Episodes of **palpitations** (less and less often), especially after: * heavy meals, very salty foods * sometimes randomly * Pain deep inside my eye socket, especially on the left side * Whenever I **bend over**, I feel as if my head suddenly fills with blood: * my **face** becomes noticeably **red** * I develop a feeling of pressure/**fullness in my eyes and ears** * If I have to bend over repeatedly (for example while cleaning), I become: * dizzy * completely exhausted * My neck and shoulders frequently become extremely tight. Massaging them often provides temporary relief from some of the symptoms. * I also frequently develop inflammation and mild pain around the gum of my **lower right second molar (tooth 47)** during brushing. It feels more like something in my face is causing it rather than a local gum problem, although I could absolutely be wrong.

Before all of this started, I exercised regularly. Now I can barely exercise because the symptoms become much worse with physical activity or repeated bending over.

Tests and appointments so far:

* Three different courses of antibiotics because doctors suspected I might have developed an infection related to the wisdom tooth surgery * An echocardiogram, which was completely normal * Multiple dental evaluations: A periodontal pocket was found around the tooth mentioned above, cleaned, and I now maintain very careful oral hygiene. * TMJ specialist: I appear to clench my jaw, and the muscles in that area are enlarged as a result. However, the specialist did not believe this could explain my symptoms.

Unfortunately, none of these have explained or resolved my symptoms.

Other relevant information

A **week ago**, after **six years** of chronic pelvic pain and countless medical appointments, I was finally diagnosed with **May-Thurner syndrome**. That diagnosis made me wonder whether my head and eye symptoms could also have a **vascular cause**. What do you think?

It took six years to finally receive my May-Thurner syndrome diagnosis, and I'm honestly terrified that I'll spend another six years searching for the cause of these symptoms.

**If anyone has any thoughts, suggestions, or even ideas about what tests or specialists might be appropriate, I would be deeply grateful.**

Thank you so much for taking the time to read this.

Anyone here get migraine Botox injections done? Last week I did and everything was fine up until day 5 post injections and the sky fell down. Today marks day 7, but I'm on day 3 of a headache, and this headache is worse than any ON headache I've ever had. Had to take off work, laid it bed in pain all day, could eat anything. 1000mg of Tylenol isn't doing anything, however I'm taking it in hopes it does. Sleeping is painful, eating is non existent as I'm nauseous from pain and being awake is unbearable right now. Has anyone had a similar experience with Botox and does it get better? I've read in other subs a headache can be normal but now I'm anxious after reading a few posts that people have had a headache like this for weeks.... I know everyone is different so trying to keep an open mind as it hasn't even been 2 weeks yet but... this super sucks. An unfortunate part in all this is I also have gastritis, so taking Advil which I think could help more than Tylenol is almost just as scary as the migraine/headache I have going. Any advice is welcomed...

I already do Botox all over my head and forehead for migraines, but my pain doctor wants me to do trigger point injections in my occipital muscles for the occipital neuralgia. I already tried trigger point injections in my back and shoulders and it did nothing. I'm thinking of canceling the appointments.

Has anyone done this treatment with success?

I did my second craniosacral therapy session yesterday and I do feel a difference. I think it's going to take at least six sessions to notice a meaningful and lasting change.

Hi everyone ❤️

I’m new to treatment for ON- I had a question

My doctor diagnosed me with ON six months ago and sent me for nerve blocks. These nerve blocks have no steroids- only lidocaine and buvocaine - they work great and almost instantly. But the relief is short lived, about 2 days . They’ve been doing these blocks every 2 weeks

I saw my neurologist today who prescribed gabapentin - I’m happy with that and am willing to try anything

But I curious if nerve blocks so frequently without steroids was common? Not that it really matters but everyone I read mentioned steroids and longer lasting relief plus not having to go in the office as much for the blocks

I posted the other day about looking into a new facility for nerve decompression surgery as my surgeon from Johns Hopkins is no longer with the hospital. Turns out, I was a little confused and my initial Plastic & Reconstructive Surgeon consult is leaving the hospital, but as far as I know, my second opinion is still there.

I still may look into The Florida Institute as my family and I may be relocating next year, however.

In any case, for some reason, I started thinking, has anyone had the nerve decompression surgery, and it made your life / pain far worse than it is now? I can’t imagine being in more debilitating pain than I have been in for the last 3+ years. It has taken a toll on me not only physically but mentally. In fact, I was hospitalized in a Behavioral Health unit for 10 days last year and much of it was due to the toll Occipital Neuralgia was taking on my life. Some days, I wish I wasn’t here and would be better off dead. I would never do anything to hurt myself. I have too much to live for with my littles. But the pain is so severe, it messes with me mentally and emotionally, and I can’t imagine having the surgery, and it being worse.

So, I’d love anyone’s honest answers to know if the surgery was worse or better for you?

Has anyone heard of this? I just saw a new pain management clinic since I moved across state and this is what the Dr./Physiatrist diagnosed me with. She explained everything well same with my MRI results better than previous Dr. I’ve seen. Now they are recommending I go for a diagnostic block on the facet joints in my C3/C4. Just wanting to see if anyone has experience with this.

About 6 months ago I got diagnosed with ON after having a week of stabbing pains from the back of the head to my eye every few minutes. It came on after a long tense car ride in a storm. It seemed to then go away after taking muscle relaxers. I still had occasional stabbing pains maybe once or twice a week, along with some headaches.

Recently for the past 5 days I’ve been dealing with a stressful health condition (not related). I was very tense for five days, crying, stressed. It went away yesterday but today I am now having these stabbing pains every few minutes from the back of my head to my eye again.

Is this what happens when you have ON? It goes away then comes back after some events?

Does anyone have any tips for making it more comfortable to lay down without setting ON off?

The pressure on the back of my head can aggravate the nerve

So weird thing I’ve discovered when my dad massaged my head after a brutal night of studying, is that when he massaged behind my head near my ears, I felt a pulling sensation on my hip. I have no idea what it is, and what it means.

I just want to make sure it’s something I should check on. Every time he does it again, I feel it, just not when I do it, like remote controlled tickling.

I feel a sort of weight pressed on my forehead, when something is of proximity of my forehead, which is sometimes annoying. Does anyone relate or is it just me?

Hello, I'm not sure if there is a better place to ask this, but I got a lot of info on the surgery from this subreddit so I figured I'd give it a shot.

I got occipital nerve decompression surgery 9 weeks ago. My GONs were both pretty badly mangled. The left was actually split in half by a strand of muscle fibers and the right was fully coiled around by more muscle. My horrible icepick nerve pain has improved a ton since the surgery, probably over 50%, but the daily migraines still persist. I've tried just about everything for them and am currently on Vyepti infusions, Botox, Ubrelvy, and about five other medications.

I never had migraines before I got occipital neuralgia, not even one, so I am hoping that if I can get rid of this horrible condition that the migraines will follow. My surgeon says that we can't know if the surgery was successful for 3-6 months, and I trust him, but I am just so scared. If this doesn't work then I feel like I have hit the end of the line. I have noticed an improvement in intensity and duration, but I am still getting them every day.

My question is: for those who got surgery and noticed a drop in migraine frequency, how long did it take to manifest? Was it sudden, or was it a slow improvement over months?

​

Hello,

How is everyone? I am writing to you as a desperate person. You see, I am 21 years old and I have Occipital Neuralgia (Arnold's neuralgia). As you can imagine, the pain is truly intense; it has become unbearable. I constantly go to the emergency room just to be pumped full of opioids, and they send me right back home. I know there isn't much more they can do on their end, because my neuralgia is caused by two spinal surgeries. My spine cannot properly stabilize my body weight, so that pressure travels up to my neck, pinching my occipital nerve, and this is permanent. The doctors have told me that as long as I've had those surgeries, the pain will not go away, so it seems like it's something for life.

I’ve been like this for 9 years, but over the last few months, I feel like I'm dying. The pain is overwhelming; I can't see properly, and it’s accompanied by dizziness and nausea. As you can understand, I am desperate. 12 days ago, I had a procedure done at a pain clinic (a sphenopalatine ganglion block) and Botox injections in my trapezius muscles. Instead of helping, it terribly increased my pain, and my doctor has already warned me that there is nothing left to do in my case. I have considered ending my life because of the horrible pain I’ve been carrying since I was very young. I don't mean to victimize myself, but I hope you understand my pain and my situation. Currently, I am taking hydrocodone bitartrate + acetaminophen, and Neosaldina—up to 18 pills a day, especially when I was during my university finals.

I have taken all kinds of medications over the years, from painkillers and opioids to psychiatric drugs, anticonvulsants, relaxing drops, etc.

Any advice would be greatly appreciated.

I'll read your replies.

Post:

32M, 5’8”, 165 lbs, no medications.

I work three physically demanding jobs (teacher, bartender, and part-time firefighter). Recently I went through a period of extreme sleep deprivation while finishing report cards (two all-nighters). I also typically sleep on a couch when I sleep (for the past ~4 years).

After finishing a full teaching day, I went directly into a bartending shift (5:30 pm–2:00 am). About halfway through that shift, I suddenly developed severe neck stiffness and significant lower back pain. The neck stiffness was bad enough that I considered going to the ER, but I finished my shift and went home to sleep instead.

When I woke up, the pain had improved but I still had neck stiffness and started developing headaches. For ~2 weeks after that, I had recurring tension at the base of my skull/neck with shooting migraine-like headaches radiating forward from the occipital area.

In the last week, the headaches and neck stiffness have mostly resolved, but I am now waking up with new, shifting pain in different areas:

• One morning: severe right clavicle pain
• Another: significant left shoulder pain (fluctuates in intensity)
• Another: very painful throbbing left thumb (felt almost like it was broken — difficulty gripping, opening buttons, using hand). This has improved but is still not fully normal

The concerning part is that the pain seems to “move” or appear in different areas after sleep, rather than staying localized.

Given the timeline (sleep deprivation + physically demanding work + couch sleeping), I am wondering whether this could be:

• cervical nerve irritation / pinched nerve
• referred pain from neck/upper back
• musculoskeletal overuse + poor recovery
• or something inflammatory or neurological that should be investigated

I have no fever, no known recent illness, and no medications.

Any insight into whether this pattern is concerning or consistent with something specific would be appreciated.