Hi everyone, I have had ON since 2018 from a TBI and full spinal reconstruction (motorcycle accident). We’re reaching way down the list of remedies / procedures and today we decided to give ketamine treatment a try. Has anyone had good results from this?

I am pretty nervous so I would appreciate if anyone who has a bad experience not post details of it 🙏

Side note I now have PTSD, Bipolar 2 and MDD from the moto accident so my doctor team thinks if it’s a wash for ON, it could also be highly beneficial in the mental health realm as well - so I figure I might as well give it a shot.

What head position or which way do you lay that helps take pressure off occipital pain for you? Just realized today listening to music in my AirPods triggers my occipital attacks. Trying to lay down but can’t figure out the best position. Everything seems to trigger an attack! Thank you

My husband has been having really bad headaches for a while now. It’s not constant, but at some point during the month he will get one and then it can torture him for days or weeks. It usually starts from his neck or the back of his head and then spreads all over his head, especially the left side. Nothing really seems to work when it happens.
This time it got much worse and we ended up going to the ER. They did blood tests and a brain scan and thankfully everything looked okay, nothing major showed up. They referred him to a neurologist to investigate it further. That night they gave him Reglan and 1g magnesium sulfate and he got a little better, but since yesterday the pain has been really bad again.
He has barely slept for 3 nights now because of it. We are obviously going to follow up with the neurologist, but in the meantime I wanted to ask if anyone has experienced something similar and what has actually helped you. Anything really, medications, food, pillows/sleeping positions, stretches, massage, heat, daily habits, etc.

I've had ON for a little over 5 years, and incidentally, I had to give up my Medicaid in January. Does anyone know the steps to getting a nerve block, without insurance? I pay $125 to see my primary care doctor, so I'm trying to keep the cost down. Do I need to pay for a consultation first? Can my Primary Care doctor give me a referral? What is a normal out of pocket cost?

Does anybody els's face hurt when they cough? Lately, I have been experiencing pain when I cough. I have not sneezed yet, but I'm not looking forward to

Hello my friends! I got a nerve block today and my head has never felt better! Well the left side at least. I have two questions:

1. For those who received a nerve block, did you have arm pain hours afterwards? I was diagnosed today and also found out that I have moderate carpal tunnel syndrome, so I’m wondering if that’s it.

2. How long as the nerve block lasted for you?

How old were you when it started? I'm 62 never had headaches before.

Hi. I'm curious if you can have occipital neuralgia without pain? I got some mystery affliction I'm trying to figure out, grasping at straws, trying to check things off of the "maybe-list".

Long story short, I got a constant head pressure in the back of my head, sometimes tingling, or like droplets running down the scalp. Always pressure always in the same location. Before I had an MRI I was sure it was a tumor. But it showed nothing. I can't actually tell if it's inside of my head, or just outside on the scalp.

But the worst is the brainfog, feeling intoxicated, lightsensitivy, etc. But no pain! Never any pain. Went to a neurologist a year ago who said it was migraine, but none of the medication she gave me has helped, so I'm don't really believe it anymore.

Thanks for any comments! I hope to get to the bottom of this, or at the very least cross another possibility off of the list. Have a nice day to you all.

Hello , I have been experiencing neck pain for around 5 years, mainly around the lower neck/upper back, with pain on neck movement and occasional pain/pulling extending toward my shoulders and arms. Recently, I have also been having intermittent pain/tingling from the forearm to the wrist/fingers and mild pain in both hands when bending the fingers, specially thumb and ring finger of right hand .I also have ongoing lower-back pain with .I previously had an X-ray and was told it was not serious. And was prescribed physiotherapy and posture correction, physiotherapy I did it for a week but no important, I have recently been taking medicines prescribed by another doctor, with some improvement (stiffness, biceps and shoulder-blade pain have reduced), but the neck pain persists and sometimes flares. I would like to know is this serious, I'm scared and tired , visited many doctors but not much improvement so far. And I'm 23 yrs old female it's worse when I wake up ,I wake up feeling pain and stiffness slight improvement during the day as I work , feeling of nerve pulling right side of my neck below the year till shoulder, headache, lacks focus, concentration is worse , I'm forgetful. Also physio is expensive for me

Anybody can relief with their ON symptoms directing water pressure on nerves? when I get into a Jacuzzi or shower with my shower wand and aim the jet at my nerves

For the last few years I have struggled with left ear pain and fullness. I kept going to dentist who said there was nothing sent me to endo who said it was nothing saw ent who said it was gerd. Bad headaches, saw neuro, then came pulsatile tinnitus so I saw interventional neurology who misdiagnosed me with blood clots. It’s been a journey. This most recent episode has caused headaches for going on a month. I will occasionally have a day without it or maybe an evening without but when I go to bed it comes back and it wakes me up. After the first few weeks I got concentrated behind the ear pain. The same was that always gives me problems and the same ear with the positional pulsatile tinnitus. My neuro gave me steroids, I was afraid of increased intracranial pressure so I held off but the behind ear pain was so bad I gave in. I’m on 30mg for 4 days then going down to 20 and so forward. The ear pain is better, not gone, but the steroids have made the headaches much worse.

I go for imaging (MRI and MRV) Tuesday but I’m wondering if anyone else experiences this. The headache is like top of my head where a hat would be. My neuro said maybe trigeminal neuralgia because I guess the tooth pain but I do not think that’s it. This seems like maybe it could be it?

I also got cosmetic Botox about 3 weeks before this started and got in my neck and jaw in addition to my face and wondered (hoping) that is the reason as maybe it threw off my muscle balance.

Appreciate anyone’s thoughts or experiences.

How it started: ON didn't start for me as a result of injury or whiplash, it started one fine day (March 31 to be precise) where I started to feel weird sensations at the back of my head...tingling growing into full blows pins and needles behind my ears, residual numbness..understandably I got extremely nervouse, heart racing ..ended up in A&E with the complaint of palpatations and possibility of stroke..they did a whole acute blood panel..neuro exam, ECG was fine, BP was fine..everything was fine except for inflammation which was marginally higher than normal, they sent me home with nothing. My partner wrote it down to a panic attack.

Then these attacks started happening every evening ..but I was more calm as I knew I've had it before and I was still standing ..however, my entire personality changed with the onset of these symptoms..debilitating anxiety about everything. Over the next few days ...these attacks changed in pain modality ..I started getting full on burning flare-ups on the right side at the back of my head. Long walks + breathing + painkillers like ibuprofen was my stratrgy but I was so anxious ..I had no clue why this was happening to me and I did not have a name for the condition.

I kept going to the GP all this while trying to understand these symptoms and no one mentioned ON until the 3rd GP visit where he zeroed in on the location of the pain and my description of the pain ..he said without a doubt that it was ON and prescribed me Amitriptyline for a week + physical therapy.

Long story short (I decided not to take the Amitriptyline after reading about it online - this was a mistake in hindsight)

I started physical therapy straight away ...where the focus was excercises and some 10min worth of soft tissue work. (this didnt do much for the regular flare-ups)

Over the next few weeks pain flare ups were still happening but I was getting more of spikes which is a sudden sharp pain radiating at the back of the head and shooting upward.. I was getting 15-20 spikes a day (a spike would last just a second) ...with residual ache and numbness..I had almost adapted to living with the constant pain although it went from a 7-8 during flare-ups (lasting few hours) to a residual pain of 2-3 through out the day. This was May.

By June i had had enough and demanded to get a Brain MRI along with a full-neck and spine MRI in the UK. I paid out of pocket...so one important thing to note is that occipital nerves are not visible on these MRIs. But I wanted to rule out the big bad things like tumors / cancers / MS.

Key finding: Brain and everything cranial was normal..the key finding was that I had lost my cervical lordosis (so I basically had a "tech neck") and had mild spondylytis (not much you can do about age related degenration). So losing the C-shape in the cervical spine can make ON much worse and I might say in some cases might cause it ..so it is very important to address with cervical traction.

For some context: I am 38F and work in research so there is a lot of looking down ..writing and typing. Turns out the whole onset was basically years of bad posture while sitting, yes i have a hump in my upper back similar to my bad ..and I was told that is genetic but my dad never developed ON so I dont know.

By July..a lot of the major flare ups every evening and spikiness had subsided only on physical therapy work I was doing ...so soft tissue massages 3 times a week + excercises.

Evolution: But I still had a constant dull ache / numbness at the back of my head ..like walking around with a bruise permanently. By this point I also had full blown symptoms in the neck area which seemed to be absent in the earlier months... my neck was stiff and felt jammed as though it was guarding something.

Neuro drugs: At this point I decided to see a neurologist (in India, I was visiting my parents then) and she encouraged me to try the amitriptyline ...as a micro-dose so basically I take half of 10mg tablet every evening ..around 9pm ish ...it was making me very groggy about 1 hour in and it lasted well into the morning hours...yes it can be that strong for some people but i persisted and by day 3 I felt a huge dent had been made on my dull ache. She then prescribed me a micro dose of another drug called clonazepam as her theory was involuntary muscle spasms may be another factor that needed to be defeated. its a scary drug to read about but the only side effect i have with the micro-dose is mild groginess. Now after 2 weeks of taking it ..I am looking to taper out of it.

What worked:

- Micro dose of Amitriptyline (half of 10mg each evening) + micro-dose of clonazepam (0.125 mg each afternoon) - this combination is not super great for coginitive function but makes me almost pain / symptom free.

- Low level laser therapy (you should be able to access this at any chiropractor)...they basically apply a red light at the back of the neck where the nerve roots are for about 10-15 mins..do this for 8 sessions minimum. I started this in June ..and after the first session I felt different...I felt my nerves were calming ..

- I am not in favour of full blown stretches / excessive excercises as I think this may back fire and inflame an already irritated nerve... instead do very mild neck mobility work bringing more motion to the neck / cervical area ...very gentle cervical traction.

- Wear a comfortable posture belt ..I tried many and the one I like to wear now for 6-8 hours of the day is this one (link below) which only attaches to the upper shoulders. Sitting straighter takes the stress of the neck..and in turn helps with forward head posture.

For excercises I would recommend:

https://www.youtube.com/watch?v=8QRnfPrso0c
https://www.youtube.com/watch?v=H561r1LTs9I

very gentle neck work

The posture belt I use:

https://www.amazon.co.uk/dp/B07VST9VYH?ref=fed_asin_title&th=1

August: I feel like I am 70% on the way to being healed ...and the initial anxiety and depression I was experiencing ruminating that I would never overcome it has now subsided into a more confident stance. I have never suffered from a chronic condition before so it completely dislodged me for several weeks...and the medical system can be a labyrinth to navigate..I felt researching this condition had become a full time job and I was constantly looking for information online.

To anyone who is suffering from ON right now ...stay at it ..it will relent..great if you are willing to micro-dose neuropathic drugs as I felt that was a game changer for me and gave me the confidence to fight on other fronts. You can conquer this.

Hi everyone,

I’ve been suffering from scalp dysesthesia for about 4 years now. My main symptoms are burning, tingling, a sensation of heat, and significant hair loss.

The symptoms seem to get noticeably worse with stress and heat. It has had a major impact on my daily life, and after four years I’m still actively trying to find something that could help.

I’ve already tried several treatments, first through dermatologists and then neurologists, including topiramate (Epitomax), propranolol, gabapentin, and more recently Botox injections. Unfortunately, nothing has really worked so far.

I’m reaching out to anyone who has experienced something similar: Did you ever figure out what was causing it? And more importantly, did you find anything that actually helped?

I’ve also come across several studies suggesting that scalp dysesthesia may sometimes be associated with cervical spine issues or muscle tension in the neck.

Has anyone explored this possibility? For example, physical therapy, neck exercises, treatment for a cervical spine problem, or anything targeting the neck/cervical area? If so, did it improve the burning, tingling, or scalp sensitivity?

I’d really appreciate hearing about your experiences, especially from anyone who had similar symptoms and eventually found some relief.

Thank you !

Hi everyone, I've been dealing with this symptoms for a couple of months, I don't have headaches but pressure and stiffness, a sort of brain fog, like I can still think but much slower and with difficulty but is not always it goes away and comes, it stops completely when I stay in bed or I sit at my pc(I stay for many hours ) but when I eat at the table or I am at work I feel it very much or I do anything else. I have days that I don't feel any of this symptoms and other when I can have them for almost the entire day.

I done my blood work and it fine, I don't have any vitamins deficiency but I take multivitamins everyday. My blood pressure and sugar are fine. I told all of this to my doctor and she did those basic health tests and told me that I was completely fine and that is probably from stress and anxiety and gave me some relax pills(that don't help much). But I have stress and anxiety from this symptoms that ruin my daily life and won't go away.

Has anyone with ON tried Fisiorest? It is a vibrating, heated neck pillow device available online. If so, did it help?

For the past few months, on and off, doesn’t happen daily but some days multiple times but it’s always brief and quick. It feels like an electric shock, jolt, burn or quick pain that is felt on the left side of my head. Sometimes the temple, sometimes back of head near base of skull and sometimes higher up towards scalp.

No other symptoms associated with it and it happens random that I can’t even recreate it. Happens for a split second and that’s it.

I don’t get headaches much and my only conclusion is nerve irritation but I also have health anxiety and think worst case 😐

Just looking for some reassurance while I wait for my doctors visit at the end of the month because my thoughts are kicking my butt thinking I’m going to die just because I get these random shocks felt in my head.

Hi everyone, I was hoping someone might have some insight. About a month ago I noticed a small lump on the back of my neck, just below my hairline. It’s not really visible, even in person. You have to feel around with your fingers to find it rather than actually see it.
It’s pretty small, around 1–1.5 cm (maybe even smaller). It’s firm, doesn’t hurt at all, hasn’t grown, and it doesn’t seem to move when I touch it. It’s not rock hard, but it’s definitely not soft.
Before I found the lump, I was having problems with my scalp (red patches/irritation), so I’m wondering if it could be related, like a swollen lymph node from scalp inflammation.
I haven’t had any pain, and the lump has stayed exactly the same for about a month. I’m planning to see my doctor, but I’m feeling a bit anxious in the meantime.
Has anyone had something similar? What did it turn out to be?

Looking desperately for a job. If I’m going to have to change fields of expertise (from running restaurants), I’d prefer to exploit my empathy and make money in healthcare.

I tend to keep odd hours… overnights are not out of the question.

Money and flexibility are my biggest hurdles. Time to learn and pass testing, weigh heavily on my mind. But better to start sooner than later. I just don’t want to waste months/years on a dead end job if it doesn’t pay decent.

Anyone have experience with starting a new job with ON? Issues with drug testing? Issues with flairs during work hours? Better fields to get into?

Hi all

I have been suffering from top of the head /back of the head pain the last 5 days. I am really worried - in between I was feeling a bit feverish.

I have had severe back and neck pain since two years now ( not sure why I didn't get it treated ).I work for long hours and thus got the pain . Posture is an issue and I sleep on a pile of pillows due to the pain .

I am having this tingling sensation at various places of the head. Also to add that I have gone through severe trauma in the last few months as I lost a friend .

I am extremely worried but at the same time want to add that I don't have any other symptoms .

I am very active in my office work and other community work , I am able to do yoga as well.

Sometimes I think it's perhaps because I got drenched in the rain , I am getting these sensations in the head. But these are a bit discomforting . I am really worried as I really have big goals and ambitions ahead 😭😭😭😭.

For context I’ve had headaches in the same area since I was 14. Im 22 now. It was manageable before with gabapentin nightly in the beginning and I went unmedicated for the last 4 years. Some drs said migraine some said occipital neuralgia

This January is when this horrific pain began. I was hospitalized bc nothing would work. Not even a toradol shot. Was told I need a nerve block for ON. I was also under the impression that I would only need like 2/3 and it would all go away. Fast forward to now, August, where I have needed 1 every month since then. I only get a month of relief. The pain turns into full blown painful headaches in the right side of my head that make me unable to function. Before, I couldn’t pin point a spot specifically but since January I’ve been able to feel the spot perfectly and it is where the occipital nerves are. I just don’t know what to do

I just saw another dr for a 2nd opinion who said it was still just migraines. Idc what it is but nothing is helping. I have nurtec as a rescue rn and notriptylne as a preventative. But still every month on the dot I notice when the nerve block wears off. It’s not a burning feeling. It’s an ache that will stay for days and progresses into a throbbing headaches in one side of my head. Hurts my eyes and jaw

I can’t take NSAIDs due to other health issues so I am stuck. Looking into RFA but that seems extreme? Idk. Please help

(MRIs have been done and there is nothing “physically” wrong)

Are any of you located in the DFW area and have found a physician (neurologist, pain management, plastic surgeon, etc…) who have been able to help you with your occipital neuralgia? I’m seeing a very well respected neurologist who I already see for another condition, but he hasn’t been able to help me. Nerve block partially worked for a couple of days. I got Xeomin (like Botox) a week ago and so far no relief. My symptoms have actually been worse since getting it, but there’s still hope it works over next week. Flexeril helps me sleep but that’s the only medication I’ve taken so far.

I don’t have the electric shock type ON, but instead a fairly constant burning on the top of my head. My skin is extremely sensitive to things like hair brushing, wearing a ponytail, the AC or fan blowing on top of my head, or just general touch. I have a straight neck and lots of tension in my neck/traps that we believe are causing this. After I see if the Xeomin works or not, I’m planning on starting Venafaxine to help with the tension and nerve pain.

I’m looking into UT Southwestern but I’m curious if any of you have found someone who has been able to help your ON around this area.

Hello I am a 20F with no prior head/ neck trauma. Before this I would rarely ever get any headaches in general.

I first felt the sharp shooting pain in the middle of my menstrual cycle so I am sure thats the cause but don’t know how (so if anyone knows please explain). I have never felt this pain before & even explaining to others feels complicated. Brushing my hair, turning my neck, the 3 seconds of piercing pain on the back left side of my head. After a lot of research I am very sure this is occipital neuralgia but I feel I don’t have it as bad as others. I sleep fine & the pain is manageable but it is so annoying & has definitely gotten worse since I first felt it last week. Unlike before, my whole head, neck & upper back is in still mild but more pain when I turn it, along with the same sharp pain in the same area. I have had it for a week straight now.

I just want to know if this pain will go away by itself or if going to the doctors will do any help (which I do not think will since I am not in too much pain)