I also have ON - and doing the lightest things around the house or sweeping even can cause me to be down for a while. When the headache pain comes on it’s hard to stop. Tried everything from a radio ablation (which made it worse ) then had a doctor at Vanderbilt here in Nashville do a surgery where he removed lots of scar tissue ( helped it for a while ) but headaches are becoming more frequent again now. This causes so much stress on us that I don’t think most people can relate to. How are yours now ?

I think this is what I have. I had stage 4 nasopharyngeal cancer in 2017/18. The radiation and chemo has left me completely disabled. I have radiation fibrosis to my neck and shoulders causing painful spasms and hardening of the soft tissues, trismus, and damage to my ears. Recently I started getting sever, burning pain on my scalp in the back of the head, which inhibits me from supporting my head on anything as I need to do most of the time. I have pain in the face starting sides of forehead that goes down into the cheeks, and also center of forehead. It's excruciatingly painful to function. I also have severe nerve pain in the roof of my mouth and running down the back of my throat. A yawn is darn near suicide inducing.

Hi Laura, thanks for your comment. I hope you've been recovering well from your surgeries. I'm glad to hear you found this information useful. Feel free to get in touch if you have any questions!

@@rachelharris725 Hi Rachel, Thanks very much for your comment, I'm sorry to hear you've been experiencing these symptoms- I hope you have since been able to find some relief!. Those sound like common symptoms of occipital neuralgia. If you're still struggling with these symptoms, I recommend discussing this with your GP to determine if you'd be suitable to see a Watson's headache clinician.

I saw these guys at the GC Migraine Clinic. Over priced Physiotherapist that promise miracles and deliver half what my old cheaper physios used to do. I think the money as you can see would have to go on Marketing . What I urgently needed to be doing was seeing a specialist and running tests, I was so unwell. He kept promising that by next appt my headache would be gone. No. I had headache straight every-single-day for 6 weeks! The whole time that I saw them. It was horrifying. It didn’t go until I was treated when medication from Neurologist and was lucky it was more serious. I would actually leave there feeling worse and the pillow I got from them hurt me. But so many promises and would just repeat back what I said , I mean it’s good to clarify but then I realised we didn’t do anything. I watched the video with the chin, I knew that already from my last Physio along with many other exercises - they dedicated a whole video to it and he claimed it would “eliminate” your headache. That’s bs. They make extraordinary claims. I Kept a diary. That was easy every single day a headache, painful. His total treatment was he pressed his thumb on my neck that was it nothing ever else. Then for 2 days it would hurt in that spot on top of my headache. And it cost so much And I was so desperate It’s sad what people will do I think this is treatment for people with mild symptoms nothing serious who don’t want medication or similar treatment, injections etc. If you are seriously unwell please 🙏🏽

Hi Fran, Thanks very much for your comment and apologies for the delayed response. I'm sorry that you've been experiencing this! We do indeed do a telehealth consults to discuss symptom presentation and in-person consults to help assess and treat conditions. We often have patients travelling from Sydney and Melbourne or even internationally (pre- COVID-19) to receive treatment for these types of conditions. If you have any questions and would like to organise a telehealth consult, please don't hesitate to reach out. I've put in a link below to our website for you as well! 🙂 brisbanemigraine.com.au/contact-us/

@@brisbaneheadacheandmigrain3863 thanks for your response

I also wanted to add real quick I know it was real bad when I remember a day that was just messing around with my kids and I had this excruciating pain when I accidentally jolted my neck it was short but definitely the worse pain I ever experienced.

I am sorry for your pain. I have this as well and therapy helps the muscle tightness and some pain but I have had so much back pain that the pain isn't unbearable but is enough to make one feel sick for sure. I promise you that you are not alone and God is with you and loves you. Deuteronomy 31:6&8, Isaiah 41:10-13

Hi Nikki, apologies for the delayed response. I'm so sorry you've been struggling with this and that no one has been taking this seriously. I hope you have since been able to find some relief for your symptoms. I recommend seeing a Watson's Headache Clinician as this is something they have experience assessing and treating. Please don't hesitate to reach out if you have any questions.

Hello brother or sister I take you seriously because I am suffering the same symptoms. Fortunately I have a very very good Neurologist whom prescribed me very good medicine which helps 80%. I also do any good exercise showing on KZfaq I feel GRRRREAT

I understand exactly how bad the pain is and how frustrating this shit is. It’s a nightmare!

I had the 24/7 massive headaches 7 days a week. It was due to a neck injury. I saw countless doctors and it took ten yrs to get it under control. I saw a Neuro-Osteopathic doctor who read my whole file that was 3 inches thick over the course of that time. He told me he felt the pain medication was causing the nerves to fire at will. The plan was to get me to taper off one medication at a time taking 1/4 away every 4 days and if it bothered me to try 5 days. He said after I was off both of them the pain would be brutal, and it was. After three weeks being off both I noticed improvement and after 6 weeks it was gone. I then saw a Functional Medicine doctor out of pocket and these doctors listen. They go over you from head to toe. I was enrolled on Tia-Chi and followed yoga and a better diet. I am sorry you're suffering but keep positive. When choosing a doctor check the medical board to make sure your choice is good and get reference or reviews. I also faxed a letter to the doctor I chose to make sure he knew who he was treating and asked if he could be helpful. Some doctors told me no which was honest and then one said yes. My pain was medication related.

Sorry for what you are going through, have you tried visiting an Upper Cervical Chiropractor who practices the Blair’s method, this might help!

Hi permanent

@@brisbaneheadacheandmigrain3863 Well, this 'migraine' turned out to be a Subarachnoid Hemorrhage. I'm home from the hospital now doing in-home PT, OT, and ST.

I'm sorry to hear you've been experiencing this!

Hi Michael, thanks very much for your comment. If you have discussed these symptoms with your GP and neurologist and no other underlying causes were found, you may benefit from seeing a headache clinician to assess these symptoms.

Hi Georges. To answer your first question, sensitivity to stimulus is the closest response. There are faults that are viewable on X-ray if you know what to look for, but scans are not necessary, as it's more to do with the response. For your second question, the treatment involves manual therapy and graded exposure to the stimulus. Hopefully that helps a bit, and good luck with your search for someone that can effectively treat you!

Hi Kier, I'm not very familiar with these drugs, so I'm not sure I can give you accurate information regarding them. However there are many things that can potentially result in this condition, so it's a possibility.

Thanks for your question! I recommend discussing these symptoms with your GP to determine if there are any underlying conditions causing this and if you require assessment and management by a headache clinician. Please don't hesitate to reach out if you have any more questions!

Hi Ramanjit. Anxiety or stress can increase your chances of experiencing symptoms like this. The underlying condition sounds like it could definitely be ON, but the anxiety may be triggering the episodes. Hopefully that clears that question up a bit.

How did you fix it I feel exactly this please help me please

This sounds just like mine. I can't find anything that truly helps.

@@Hankkill427 Hey I experienced it too for almost two weeks left side only. The pain was indescribable. But now it's gone. I went to masseur. He massaged my shoulder (left shoulder) The nerve connected to head. He taught me to how to exercise my neck every morning. Look toward ceiling and drop your chin toward your chest alternately for 20 seconds each for 6 repetitions. Get adequate sleep and rest to repair nerve damage. Took vitamin(B1,B12) for nerve. Reduce gadgets addiction( maybe the cause for my neck pain electric shock to my scalp).

Hi Luice, apologies for the delayed response. I'm sorry to hear you've been experiencing this and I hope you've since been able to find some relief. I recommend discussing these symptoms with your GP to clear the presence of underlying conditions and discuss whether you'd benefit from seeing a headache clinician.

What did you do so that you recovered?I am having a insincere 2 months

Hi Cathy, I'm sorry to hear you've been experiencing this. The symptoms you describe can indeed be seen in occipital neuralgia. I recommend discussing these symptoms with your GP first to determine if there's any underlying causes and then, see if you're a good candidate to see a headache clinician.

I'm in the same boat right now

I am so sorry Jasmine. I promise you are not alone and are loved. Please know God has not abandoned you and He loves you. I will pray for you. Hang in there. I have this issue of Occipital Neuralgia as well but not as severe as you describe. You are not alone. I promise you that. I use a heating pad when it gets to the point of making me nauseated. It does help.Praise God

@@GodsChildJenny1979 God is healing you as it is working on me too. Thank you Jesus for all those healing miracles and the ones to come.

Hi Jasmine, thanks very much for your comment and I apologise for this delayed response. I hope you have since been able to find some symptom relief. Often, when you're in pain, this may increase your stress levels (or vice versa), however there is no direct link between pain and mental health conditions and pain (i.e. conditions such as depression and anxiety do not directly cause pain). It sounds like you would greatly benefit from seeing a headache clinician to assess and manage these symptoms. You may be able to find one local to you if you google "Watsons Headache Clinician" in your area/city.

Get another opinion

Hi Joleen, I'm so sorry to hear that you've had this experience- that sounds like it would be very difficult! My best recommendation is to discuss the symptoms with your GP first to see whether any scans or tests need to be done. You may be able to discuss the potential of seeing a Watson's headache practitioner with your GP, since you're after a long-term solution. I hope that this helps- please feel free to contact us if you have any further questions!

Are you alright?

Hi Rosy, these conditions can be frightening. It sounds like you've already likely been speaking to your local doctor, at the very least. Its a good idea to have some scans done (MRI of the brain) to check that there isn't something more sinister happening.

@@Nik-6675 I guess I'm okay... just taking each day as it comes.. thank you for asking 💚

@@brisbaneheadacheandmigrain3863 yea I did have an MRI of my brain which ruled out what I have.. apparently it's from trauma.. I still have to do a nerve conduction test and I think it's called EEG?? One sleep deprived an other normal.. I had a nerve block injection which didn't work so I dunno what's next 😒

@@brisbaneheadacheandmigrain3863 plus I had one test for checking some brain stem I dunno how it works but they put warm water inside your ear to check your balance and I ended up unconscious for 5 to 6 secs...

We have the same. I always wear eaphones and my ear kinda hurts, but I don't have shock pain on my head tho I can still feel the pain but not too much. I'm hoping as well that it is just due to stress

Hi Sheryn - I am experiencing exactly these symptoms right now. Did your problems go away in the end or did you need treatment? I'm very grateful for any help you can give me - thank you

@@B12OADY Hey I experienced it too for almost two weeks left side only. The pain was indescribable. But now it's gone. I went to masseur. He massaged my shoulder (left shoulder) The nerve connected to head. He taught me to how to exercise my neck every morning. Look toward ceiling and drop your chin toward your chest alternately for 20 seconds each for 6 repetitions. Get adequate sleep and rest to repair nerve damage. Took vitamin(B1,B12) for nerve. Reduce gadgets addiction( maybe the cause for my neck pain electric shock to my scalp).

@@marygracecarpizo4826 Hey Mary. I can't thank you enough for taking the time to reply with this very useful info, that's so kind of you and been genuinely very helpful to me. Thank you x

Hi Sheryn, apologies for the delay in response. I hope you have since been able to find some relief for these symptoms! I'm so sorry to hear you've had to experience that. If you haven't already, I recommend discussing these symptoms with your GP and they'd be able to assess and determine what could be causing the symptoms. Hope this helps! Please don't hesitate to reach out if you have any further questions.

Hi Katie, I'm sorry to hear that this has been your experience- that sounds quite difficult. It is a possibility that the surgery may have caused some irritation or increased sensitivity of the occipital nerve- however this isn't something I can be certain of. The best option is to discuss this with your doctor(s) and possibly see a headache clinician who may be able to assess for the root cause of your occipital neuralgia. I hope this helps, please feel free to get in touch if you have any more questions!

Going threw the same thing

Hi Shoshana, thanks for your comment. That is a common symptom of occipital neuralgia that many of our patients bring up. It sounds like you may benefit from seeing a headache clinician, however, I recommend discussing these symptoms with your GP first to ensure there are no other underlying conditions.

Hi Sergio, thanks very much for your question. A Watson's Headache Practitioner should be able to assess the first three vertebrae of your neck and your brainstem to determine if that is the cause of your headaches or migraines. However, I recommend seeing a GP first to clear the presence of any other underlying conditions.

Hi Ariel, I'm sorry to hear you've been experiencing these symptoms. I recommend discussing this with a GP. You're absolutely right- this sort of electric shock/sensation can be quite frightening. Please feel free to get in touch if you have any questions or concerns!

Hi Lizzette, thanks very much for your questions. Normally high blood pressure isn't a direct cause of occipital neuralgia. It would be best to discuss the blood pressure and hearing loss with your GP if this is not normal for you. You may benefit from seeing a Watson's headache clinician if you're suffering from occipital neuralgia as they'd be able to conduct a thorough assessment to determine what could be causing your symptoms.

Am having this too ... particularly on my left side ... triggering upper neck and towards the top left part of the head or scalp ..as you rightly mentioned ... I had horrifying headache last 2 days ..... Today I asked my girlfriend to do s massage on my neck or nervous system point ...and I turn after quick nap facing down ....the headache was gone the sharp pain inside my head also gone, I was able to eat food after that .... but unfortunately I am experiencing a new sharp pain on my left top calp area and it's been like this for hours now ...😓

I am feeling the same for a few weeks now

@@tenzind4175 Hi! Are you still experiencing it?

@@raizzajoygonzalo3025 Hi! How are you?

@@tenzind4175 16 days and counting how bout you guys?

Thanks very much for your comment. I'm sorry to hear you've been experiencing this. I recommend seeing a physiotherapist to assess your head and neck to determine the source of these symptoms.

At our clinic, we use the neck (aka cervical spine) to assess brainstem sensitivity. I'm sure there are other ways of assessing it as well!

@@brisbaneheadacheandmigrain3863 Duh, the neck (cervical spine) is where the brain stem is. Explain HOW you test brainstem sensitivity via the neck. This all sounds like total BS.

Hi SS, thanks for your comment. Apologies for the delayed response- I hope you've since been able to find some relief in these symptoms. If not, I highly recommend discussing this with your GP.

I was diagnosed in October. I feel pain from ON several times each day. I would urge you to see your primary doctor and request a referral to a neurologist who can determine if you do have ON. From there you would establish which treatments are right for you! Good luck my friend

i just find out that i have a "stress nerve" my doctor read my MRI..

I'm not sure what they mean by "stress nerve", but generally clearing any issues that show up on MRI is a good place to start. Hopefully it puts you on the path to recovery.

@@brisbaneheadacheandmigrain3863 thank you..and i been seeing my theraphist twice a week and it helps my recovery fast..

I get that too

Hi Lisa, thanks for your question. Things such as dizziness and vertigo are a common side effect of Occipital Neuralgia, both which can cause people to feel off-balance. I recommend discussing this with a GP first to clear the presence of any other underlying conditions.

Yes it can . Ur balance basically comes from these 3 areas . Cervical Spine. Inner Ear ( Verstibular ) & ur Eyes .

And some fore head pain

I also took a ibuprofen and it stop hurting should I keep taking or should I wait

It's quite possible that you have it in the early stages (depending on how severe it is, it may be further along). It sounds more like Trigeminal Neuralgia, based on the location of pain that you've described. Something to be careful of with ibuprofen is that it can cause issues with your gut, so avoid taking that on a regular basis if you can. Consult with your local doctor or pharmacist for more information regarding medications.

I have a pulling/burning sensation in my scalp right side comes and goes but I was almost about to scream before, the pain and burning can be intense 😩

Have you found any help? I've been researching cervical instability and occipital neuralgia since first hearing of them on KZfaq. I certainly didn't hear about this by the three migraine neurologists I've seen over the years or the neurosurgeons who wanted to fuse my lower neck (where I have no pain) telling me doing this wouldn't stop the migraines so of course I didn't do it. I told them all that the source was at base of skull and that pressure on scalp caused the migraines.

Hi Michelle, apologies for the late response! I hope you've since been able to find some relief for these symptoms! I'm very sorry that you've had to experience this. I recommend seeing your GP to assess whether there are any underlying conditions/causes and perhaps even to discuss the potential of seeing a headache or migraine clinician.

@@Rollwithit699 Thanks very much for your comment. You are indeed correct that the source of these types of symptoms come from an issue around the base of the skull. To be exact, they occur as a result of changes to your upper cervical spine (the first 3 vertebrae in your neck) which is situated right underneath the base of the skull.

@@Rollwithit699no, I still not been helped yet. But it’s in process and I’m on public waiting list again

@@brisbaneheadacheandmigrain3863I’ve had this for 20 years. It is occipital neuralgia nerve impingement.. that’s wha5 I’ve been told. Each specialist says it’s not operable. But they never say why. Tried manytreatments had ablation frequency treatment last December.. didn’t work. So now I’m back on public waiting list.. I think the last treatment 8 had didn’t work bc the specialist changed her mind where she was going to do it. From neck to back of head. I knew this wasn’t going to work and I was correct.

Thanks for your comment Naxxremis. Sorry to hear you experience this. I hope you've since been able to find some relief in your symptoms!

@@brisbaneheadacheandmigrain3863 it was about posture :)

I'm sorry to hear about that OMIE, and it's hard to answer that question, we see patients who have had the condition for short amounts of time such as yourself, but also people who have had the condition for 20 years+. If it continued, I'd recommend seeing your GP for medication, and if it persists having your neck and brainstem assessed.

Hi there, it can be a scary thing to have. But rest assured that it is most often a treatable condition!

Lol

@@brisbaneheadacheandmigrain3863 thanks now I know now where I get tinnitus ^^

@@brisbaneheadacheandmigrain3863 I also having scalp because of this, but I know how to cure

@@zhangcheho5735 how are you curing ? Cause i have tinittus too because of this.

Hi there, thanks for your comment, but I'm not 100% sure what your question is. Feel free to ask again and I'll do my best to answer.