I’m waiting to see a neurologist, my appointment is only in October. I have had this continuous pain for months now, starting at the right side of my neck (behind) and going right up to the right side of my head where my temple is, I also have pain where my eyebrow is , right side only as well. The pain hurts more when I talk sometimes. It’s constant. Sometimes the pain is only a 3/10 but at least half of the time it’s a 8,9/10. It’s driving me nuts. I’ve tried several different medications. Nothing works. I know if it is ON, maybe I’ll get a nerve block. I’m ruining my life. I literally don’t feel like myself anymore. It’s robbing me of my happiness and any joy I had before, the pain overpowers it and makes me a miserable person. I’m 34 and finally felt ready to have a baby, but now this.... I couldn’t imagine being pregnant or having a newborn feeling like this everyday. I just want this pain to stop. Also I had an mri last week but have not had the results yet. If anyone had any suggestions or advice. I’ve tried so many different creams for my neck, cbd thc cream, lidocaine cream 5%, sometimes that one works but right now it’s not. Ice numbs the pain but as soon as I stop it starts again.

So about a week ago, I hurt myself bad. I was having a smoke (I like pot) and began to cough my lungs up. The base of my skull got tight, as the muscles tightened. There was this sudden sharp, stinging rip feeling. It sent electrical shocks of pain through my skull. Like a spiders web of pain. The greater occipital never (or at least the spot it’s located) as well as minor occipital nerve (behind ear at base of skull) were the source of the pain. All week I’ve been popping Advil, Tylenol, and muscle relaxers. I’m feeling much better now, but I wanna know if this is neuralgia

Edit: so the annoying pains been bothering me for about a week. Now I’m dealing with the base of my neck being sore (my chin touches my chest; my neck at a 90’ angle) and my throat is sore.

Hello all. For the past few days, maybe 5-10 times per day, I’ve felt a fairly sharp but brief throbbing pain on the left/middle side of the back of my head, somewhere around my left ear and the top of my neck. Occasionally when I lie down on my back I can feel my pulse (a bit more than usual) around my left ear.

I know it’s probably not as bad as issues some around here may face, but I figured this is as good a place as any to ask if anybody else has had similar symptoms in the past and what could work to relieve them.

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

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

I think this post may be helpful to some people on here. I have a history of severe post-concussion syndrome and it was only recently discovered that in fact, a lot of the pain I was experiencing was actually due to an atypical case of occipital and cranial neuralgia. I hope by sharing my story it can help others out there who need help. I will try to be as detailed as possible, but I will also break it up into parts for those who want to skim.

Background: I'm a 24 year old male with no prior history of headaches, migraines, or health issues of note. About 2.5 years ago, I suffered moderate concussion about a couple weeks before my final semester of college. I was taking extra credits to graduate a semester early. I was a very high functioning individual - I had a good GPA, a serious girlfriend, was president of my fraternity, and had a busy social life. I was known for being a fun-spirited and caring friend. However, as that semester progressed after the concussion, I began experiencing headaches, fatigue, brain fog, decision making issues, and other personal issues I'll leave for you to infer. These issues all contributed to me losing myself, and my then girlfriend. Just after the semester ended, a few days before I was going to see a doctor to find out what was wrong, I smacked the back of my head hard in a freak accident. Over the next couple of days, my mild symptoms all became severe. Long story short, from that point on I experienced migraines every single day for the next year.

Symptoms:

• severe pain 24/7 every day all over my head in "branches"
• pain behind, in, and around both eyeballs
• Pain in the base of the head in the back of the neck on both sides of the midline, stretching out towards the ears, and up towards the top of the head
• fatigue and brain fog
• constant feeling that I need to crack my neck

Occasional severe contact-sensitivity in my head (one time I grazed my head on something and literally sat down crying in pain for 5 minutes)

Initial Treatment and Issues with it: I won't go into every detail, but my initial treatment was terrible. The neurologist didn't even tell me to rest, and my symptoms became even worse as I tried to start working. It was only a month later that I saw another doctor, was removed from work, and put into concussion protocols. But the protocols went on and on, with little improvement. I tried vestibular therapy, vision therapy, physical therapy, counseling, CBT, and none of them helped muc

I have migraines that are fairly well managed but I also have occipital and trigeminal neuralgia. The neuralgia is not well managed. I get nerve blocks every 3 months but they do very little. Other than ice and painkillers, does anyone have any other tips for what to do to manage this pain?

Hi everyone . I was diagnosed with occipital neuralgia a few months back after telling my neurologist about my one sided brain fog/ eye pressure/pain/ bridge of nose pressure .

He gave me gabapentin & sent me in my way ( I haven’t taken the medication cause I’m annoying lol.

I just got myself a physical therapist so I can start working on that

But my question is- does anyone else feel like there neck on that side with the ON is significant weaker than the other side/ has excercise / PT helped?

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.

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

I’m a white belt that started with BJJ 4 months ago, and I absolutely love BJJ and martial arts in general, but I have an issue that kinda scares me. It’s occipital neuralgia, which is basically just immeasurable sharp pain at the back of your head. (Feels like getting stabbed in the back of the head or like electric shock). I’m no medical expert, so this could be something else, but symptoms are exactly the same as occipital neuralgia. I went to the doctor and she asked me if I wanted to take MRI scan which I said yes to. The results came back and they told me I was completely fine and I could continue with martial arts.

I’ve had this for quite a while now, since I was 13-14, and I would get it by moving my neck certain ways and it kinda just randomly hits (happens probably once every second month). I’ve gotten a few “zaps” in the back of my head while rolling too, but I always shrugged it off without telling my rolling partner because I’m so used to it. The pain would mostly go away within a few seconds so I would ignore it, and I basically forgot that it was kind of an issue. There was something that happened that got all this back to my attention recently, while rolling with my friend at the gym, I shot a double leg takedown which he countered with a guillotine. We both go down on the mat and while trying to get out of the choke I feel an immense pain behind the back of my head that was so bad that I just immediately tapped out and just laid there and groaned. The pain was triggered by me trying to pull out of the guillotine with alI the explosive, yet ineffective movements us white belts do. After groaning for a while I got up and tried to look around, but as soon as I twisted my neck to look, I felt a zap behind my head again, not as bad, but still painful.

So I couldn’t move my neck (or... I could, but it just really hurt if I tried). This went on for SEVERAL DAYS until it gradually got better and I would go back to roll again. I haven’t had the pain since, but It’s always on my subconscious.

Anyone with similar experience or know a thing or two about occipital neuralgia, pinched nerve or similar pain? Thanks.

Hi!

I took Ciprofloxacin six years ago and developed a lot of issues afterward, including pain in the base of my neck (more on the left side, but sometimes going to the right side as well).

I never got a diagnosis for it, and I've learned how to deal with the pain for most of the time since it was flaring only from time to time.

I got Covid lately, and although I'm recovered, this left neck pain got worse, going to the top of my head, the left jaw connection area, and behind the left eye as well.

Today it is pretty bad, and I feel a stabbing pain over the occipital nerve (it is also a bit sensitive to the touch), main focused on the top of the head and in the scruff.

Do you guys think it could be an occipital neuralgia case?

I'll be doing a neck and brain MRI doctor asked me tomorrow.

Felt some pain the back of my head after doing kettlebell snatches.

Next couple of days back of the head hurt, specifically whenever I looked up.

Generally I would be fine but started getting headaches that radiate around the head (not front of the eyes or temple). For a week or so I had what felt like a tingling sensation that was not pain but annoying.

Now it has turned in more to general back of head/neck tightness that really feels more muscular. Scalp is occasionally sensitive to the touch but it has always been. And when I speak louder and large sentences an odd feeling.

I want to be able to workout and box again but do worry that I will not be able to do intense physical activity without exacerbating this condition.

Does this sound like ON to you guys? Forgot to mention that I do go to a neuro and she thinks it can be. Did one MRI and nothing showed, waiting on the other two. The nerve blockers didnt really seem to do anything but at this point the actual radiating headaches arent really happening.

That’s it I guess. Just wanted to write it down somewhere. It can be really hard to deal with alone in my head all day. It’s been worse in the past but I’m constantly afraid it’ll get back to that severe pain and I feel like that fear holds me back. I have so many things to be happy about and grateful for but this has been dragging me down lately.

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.

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

So I’ve been to many doctors and specialists. Had mri and ct scans on my head with no indication of any issues.

There is a spot on the back of my head that I can rub and it will increase my pain on front right side of head. Oddly enough at one point it caused lots of neck/back pain and right shoulder pain.

I used to have a lot more symptoms including light sensitivity, blurred vision, mental fatigue, certain spots on my face would hurt like near eyes but it seems like most of them have gone away with physical therapy.

Does this sound like occipital neurología? I unfortunately lost my job and insurance due to this and was hopi it to go to neurologist before my insurance ended but I didn’t get the chance. Trying to do a lot of self healing, alternative medicine but I feel like I’ve hit a brick wall. What I have left is some neck pain, and top of head pain.

Is there any natural medicine that might help?

Hey everyone! I (M24) had a successful decompression surgery about 5 weeks ago and recovery had been going great...until a few days ago. I've had this headache that sounds a lot like Occipital Neuralgia (pain at back of the head, pain behind one eye, extremely sensitive scalp making it hard to lay down). I've read that Occipital Neuralgia can be caused by tightness and stiffness in the neck, and I have obviously had a VERY tight/stiff neck since my surgery due to the nature of decompression recovery.

Is this something that others have experienced after being decompressed? How long did it last? I'm going to call my surgeon tomorrow, but wanted to see if others in the community had any similar experiences. Thank you!

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

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!

Sex: male Age: 21 Headache type: occipital neuralgia

I’ve been having horrific occipital nerve pain 24/7 for 5 months, it’s a dull burning ache and I’ve tried about everything for it except for oral steroids, any advice or suggestions would be appreciated.

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

The most of my pain is in my occipital region, it’s a hot burning dull ache, not a tension headache which I felt before, not a migraine which I have felt before but I’ve never suffered from those headaches, only got them twice a year I think until this August, the weirdest headache I’ve never felt before came outta nowhere and persisted. It is the strangest thing I’ve ever felt, when I drink beer, it’s stop aching but feels like heat instead of a dull burning ache, also drinking doesn’t even make it worse so pretty sure this is a nerve problem

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.

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?

New here. Anyone else suffering from both thoracic outlet syndrome and occipital neuralgia? I just go diagnosed today with those. It’s a relief to get a diagnosis finally but I’m so sick and tired of the pain. People just do not understand that this physical pain is exhausting and draining. My mental health is on a slow decline due to being in pain all the time.

What do you guys do when you need some cheering up? Life’s been rough in general for me and the constant terrible pain is making it a million times worse. I just need a break, which is wishful thinking. I’m just looking for some support through a tough time.

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.

I was never injured and I’m so confused as to how this has happened, it’s been a few months and not much has gotten better, I’m just getting more and more confused as to why this happened to me. I keep thinking it was from manual labor or something but I have no idea. How did you all get it? I’m so pissed at god and I don’t know if I can keep fighting, I just want to give up

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

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.

This is going to be a long winded story, so you might need some popcorn for this one. About a year and a half ago, I was drinking at a friends pool and jumped in, trying to go through the opening of a large round pool float. I hit the side of it and my neck popped as I went into the water, I shrugged it off. Nothing out of the ordinary for weeks and no pain right after so I did not think anything of it.

Fast forward about a month later. I am in Lowes buying something and get this dizzy sensation. By the time I am at the register, my head is literally PULSING, like an electric pulsing energy over the top of my head, ears ringing, neck so stiff I cant turn my head and on top of that, I was off balance. I drove to the store (not the brightest idea) and got some Tylenol, through it back and I was better shortly after.

I have a VP shunt for hydrocephalus but have never had any issues with that. I have never had headaches before. The first of September of 2019, I had the worst headache I have ever had, no medicine would control it. I thought I was going to have a stroke, it was so bad. After going to the ER, they controlled it with morphine and dilaudid. They ran numerous tests and said it was a migraine and ruled out my shunt as the issue. I even had a spinal tap to check inter cranial pressures, no irregularities.

This kept happening over the next few months. I would have the worst headache, nausea, dizziness, etc. and have to go to the hospital to get it under control but no REAL diagnosis. After seeing numerous neurologists with no luck, I stumbled upon occipital neuralgia on the internet. It matched every symptom I had. Even down to the fact that I could press on the spot on the back of my head where the nerve lies to relieve some of the pain. I ended up finding a pain control clinic and had occipital nerve blocks, which kept me without issues for about a month at a time. Unfortunately, these costs about $800.00 and were not covered by insurance. I was also put on different types of seizure meds, anti depressants and pain killers.

I had no quality of life. I was depressed and unable to physically do anything because I was scared of another flare up that would send me back to the hospital. In July, I found a plastic surgeon that performs nerve decompression surgery and can essentially cure OC for some patients. I scheduled this surgery and was going to have it in September.

A week before the surgery, I went to get my eyes check (I wear contacts and need

Bend your fingers backwards and you’ll feel a burn, do some squats you’ll feel that burn, that’s literally at the base of my skull 24/7 but more mild, it just feels like someone is chasing me with a flam thrower and I’m inches away from being toast. Literally a burning brain, thankfully not a tumor but unfortunately it’s idiopathic in nature si no logical answers or explanation

I still have issues with my balance during increased heart rates. I can hop on 1 foot forward but cant stand still balancing on one foot. Can someone help me understand this?

I'm decompressed and fused from C2-T1. For the past year, I've been experiencing something where if I turn my head about 30 degrees to the left or right, the top of my head feels like it's being pulled in all directions and my vision goes a little blurry. Once I go back to 0 degrees, the sensation goes away.

I started seeing a new neurologist because my current doctor has some crappy staff. Took three months to send me a script for tests, and even now the insurance company keeps telling me that they owe them information to approve some MRIs. This has been going on since September. So I switched.

My new doctor diagnosed me right away with occipital neuralgia. I kinda figured this was the case. I also found out that I can't get MRIs below my chin due to my bladder stimulator (L1-L3 issue killed my bladder). The doctor recommended either a nerve block or gabapentin. Since I'm already maxed out on Baclofen, I want to avoid more medicine so I can stay awake.

Has anyone had occipital neuralgia, and if so, have you tried the nerve block? I've had epidurals before, but this is above the neck so I'm a little worried about it.

Does anyone have any recommendations for pillows that help with neck pain?? I have trigeminal and occipital neuralgia (looking into getting tested for fibromyalgia yay lmao) and I’m looking for something that’s easy on the neck and the muscles around it

Does anyone get burning scalp pain/occipital neuralgia from AS that has spread to your neck?

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?

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.

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!

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.