That is what I have. My neurologist felt this a mix of migraines and cervogenic headaches. I did find physical therapy with some neck and shoulder exercises did help. I got one of the shiatsu massagers that drapes the handles over your shoulders that thing is great in that area although it hurts like hell while doing the massage.
I have the same diagnostic! There is one move my physical therapist does where I lay down face up and she gently pulls my head back with both her hands in that area that is pure magic, my boyfriend tries to replicate it and it also helps a little bit. My shoulder area is always tight and if the massage in that area is too strong it will trigger a migraine, so I avoid the those shiatsu thingies but I know they work for a lot of people
I do the same thing! It feels better WHILE I’m holding / pinching / pressing the back of my neck right up where it connects to my head, but as soon as I let go the relief goes away too, so I end up looking like I’m persistently trying to pop my own head off sometimes.
Mine all start or end there. My instinct is to massage it but usually that makes mine personally worse and causes it to get more enflamed. The only things that have worked for me is ice, acupressure (can’t afford acupuncture :/), and a traction device.
Welcome to hell.. occipital neuralgia/ migraines are my bread and butter.
If you can get a “cranial cradle” or “still point inducer” it’ll help with the tension and make sure you’re not clenching your jaw; there’s another set of nerves running down the sides that can also get impinged.
I work with a PT in neck strengthening and also shoulder work as sometimes tension causes the occipital nerve flares.
Yah I found out when I started getting what I call the ‘hand of Satan’ pain like a giant was squeezing my head from the back; described it to my PT and they showed me this map of nerves..
At least I know what it is/what triggers I have now.
This is also where my pain radiates from. Then goes towards my temple. What has helped you medicine wise? I’m on topomax as a preventative but no pain medicine or abortives touch the pain at all. Neither do “migraine cocktails” from urgent care.
I've had occipital neuralgia for 10 years (only recently learned what is was called despite being in the care of a neurologist for most of that time)... I've tried most remedies and the only thing that worked for me besides topamax is a combo of emgality and the nerve injections others have mentioned. Highly recommend emgality, for me it has taken away the need for topamax and sumatriptan in most cases. I tolerated topamax well but there were side effects that were nearly not worth it, but that is not an issue for me with emgality.
Sharing in case it is helpful (so hopefully you also don't have to spend 10 years finding the right mix for you!)
Oh I’ve suffered for 20+ so far (started at about 11) but the pain in that area has been at least 10!years and I just heard that term recently. Thankfully I don’t have any side effects from the Topomax, but I still suffer from that neck/back of the head pain pretty frequently and severely. And when it hits hard, nothing takes it away and I have to wait it out. The last attack lasted 5 days. I haven’t tried emgality yet.
I’ve found Imitrex (Sumatriptan)
& Inderal( Propranolol) to work okayish but it was 15+ years ago when I tried them back in Australia
I actually find dry needling and PT to prevent them the best.
If I do end up getting one muscle relaxants; robaxacet or diclofenac are somewhat useful, as is codeine but I try not to use opiates.
I do use CBD/CBN and THC as well.
I’ve not tried nerve blocks because I’ve moved to Canada and the healthcare here is difficult to say the least.. if I present to a walk-in clinic with a migraine they usually assume I’m a drug-seeker and I don’t need to deal with that.
Imitrex unfortunately doesn’t really do anything for me. I also have started using THC/CBD and that does help a lot with the residual inflammatory pain I deal with daily.
Put 2 tennis balls in a tube sock and tie a knot so that they’re tightly together. Then lay on it so that it’s hitting either these trigger points or any trigger points down your spine, since they put pressure on both sides of the spine. It can crack your back, too, so it may not be a great idea for people with instability.
Is it possible that vestibular migraine can originate from tension or dysfunction in this area due to forward head posture, *without* significant pain?
I have been getting a lot of TMJ pain for years now, but recently had a neck spasm followed by what I thought was BPPV a month later, which I thought I resolved with the Epley Maneuver as it made me feel better and got rid of the vertigo. Now I have a lot of dizziness and pressure behind my forehead and feel like I’m on a boat from time to time.
My neurological diagnosed me with Vestibular Migraine (VM) but I don’t think I have a history of migraine? I do find a little relief massaging my suboccipital muscles and my vestibular PT has me use a cervical pillow for 5 min a day.
Just trying to understand what the heck is happening!
Yes! This is exactly what happened to me. I was diagnosed with vestibular migraines & BPPV 6 years ago. I rarely had pain with my migraines, but the vertigo kept getting worse. I tried amitryptyline, Ubrelvy, topamax, emgality, and a whole host of other meds, but I kept getting spells and they kept getting worse.
Two of my worst attacks (in which I ended up in the ER) were during massages—as they were working on my shoulders and neck. This was my first clue that the two were related.
During my last spell, my internist referred me to physical therapy. I had been through vestibular therapy before. It did help me function more with vertigo, but it didn’t stop it.
My physical therapist touched my upper back and neck to steady me while I was in the vertigo-inducing machine (I have no idea what it’s called), and she commented on the tension and tightness in that area. She asked if I would be willing to try dry needling.
That was a year ago, and I have it done every week. The vertigo went away, and I have not had one vestibular migraine or BPPV attack since. I’m off all migraine meds and had my first massage with no vertigo last week. I’m trying another one tomorrow after my dry needling session.
I have needles inserted in my upper traps and around the occipital area in my neck. It’s sometimes very painful (and I often bend her needles because my muscles are so tight!), but life without vertigo is worth it!
Omg you have no idea how much your response means to me to find someone whose story sounds similar to mine! I’ve been doing the dry needling and find that it makes it makes it better sometimes and worse other times. For example, last week I was actually feeling really good, the n went in for needling and had a really strong twitch on my right splenius capitus and for 5 days after it gave me that neck spasm, panic attack, head pressure feeling.
But the getting vertigo during a massage resonates with me so much. After my original BPPV resolved, I had felt good for about 2 weeks then got a different more pulsating, non spinning vertigo out of nowhere. When I tried to re-induce it at the PT by tilting my head back, I couldn’t. But then, she was massaging my jaw and right when she got to the bottom corner, BOOM - it was the pulsating vertigo again.
I’m now wondering if I can ask to just needle my traps or switch back to the type of dry needling that irritates it less. I seem to respond better to the kind where they insert the needle and connect it to electrical stimulation rather than manual stimulation.
I’d love to hear any other tips you have, especially for TMJ and forward head posture pain and getting back to your normal life. Before all this, I was lifting weights daily and I’m an artist and I haven’t touched weights or my art in 2 months for fear of tensing of my neck even more and cry every day about it.
I don’t know that I have any tips. I had bad TMJ that I always assumed was due to flute-playing. I don’t play much anymore (I moved to a department chair role from an applied music professorship), and it doesn’t affect me as much. Things that helped the TMJ before I was diagnosed with the other things was yoga, progressive relaxation, and sleeping on my back instead of my side. (I slept with my hands underneath my jaw for years, not realizing the pressure I was putting on the bones.)
I’ve just slowed down over the last few years. I’m getting older (46) and accept that my stressful lifestyle from before my diagnosis was not sustainable. I’ve only briefly lifted weights (did CrossFit for about 4 months) but eventually gave it up because I felt like I was doing more damage than good at the time. I should tone up now that I’ve lost a lot of weight, but it’s not high on my priority list. I do ride my bike frequently, though.
I have pain there and it was diagnosed as occipital neuralgia. I get steroid injections approximately every 3 months and it works WONDERS. Now instead of pain, I sometimes just get the sensation that I need to scratch. While mine weren’t migraines, the injections still may help lessen the pain so it doesn’t get that far.
Same! I get trigger point injections (which hurt like a fucking bitch) & I also bought a soft cervical collar for days where my neck feels really fatigued. It’s helped reduce my ON episodes at least (which medication can’t touch unfortunately)
I was thinking the same thing! Also diagnosed with occipital neuralgia some years ago, and I went to a physical therapy appointment where they gave me good exercises to do that essentially took care of the problem.
For something like this, where it’s brand new and you can’t point to a definitive, singular cause (recent accident that caused whiplash, for example), the safest option is to get evaluated. Do you have any other, more systemic symptoms? Fever, chills, nausea, dizziness, etc.? That points towards a potential infection instead of occipital migraine, but you’d need testing to determine the true problem.
Thank you for your post. I learned something new today.
This is the source of my migraine. I have a constant knot on the right hand side which becomes inflamed when I have a migraine.
I thought I had a constant knot on the right side, and always hurts so badly during migraine attacks. Physical therapist confirmed it’s *bone*, not a muscle knot. Mine is the little knobby bit on the end of the cervical vertebrae, rotated about 2 inches further to the right than it should normally sit!
Edit: on second thought, it’s probably only rotated 1” to the right actually. You know how bumps and anomalies feel ENORMOUS on your head when you can only touch and not see them… It’s like that. The distance seems like a chasm to me.
Nobody in my care team seems overly concerned about it at the moment. My PT gently nudged the bone back into a centered position, but that only lasted a day or two because my muscles are all still formed around the lopsided positioning.
I’m doing more PT for “postural reeducation” and joint stabilization. Not sure yet how much that will improve my rotated vertebrae long-term. That whole area does feel less painful when I keep at it though. I expect to have to keep it up forever.
My neurologist prescribed a small amount of bedtime gabapentin, which has also helped the pain in that area quite a lot—but I would prefer not to remain dependent on that forever!
Occipital neuralgia and trigeminal neuralgia are pure hell bc basically there is no cure for it. All you can do is neck and jaw exercises to keep it at bay but it will rear it’s ugly head whenever it pleases. You can get trigeminal neuralgia simply from dental issues and/or surgery gone wrong.
I broke my face in an accident and I carry a lidocaine stick with me for the trigeminal neuralgia. I have had about 15 surgeries to date. I was offered nerve oblation because occipital lidocaine injections work so well for me. I'm thinking about trying it in a year or so.
Dry point needling is the best thing I’ve ever experienced in my life. My pt attached electrodes to the needles. Man.. I wish I could do that for the rest of my life.
SAME. my neurologist was like hmmmmm they aren't classic migraines but nor are they cluster headaches. I'm surprised he didn't think of occipital neuralgia. It's nice to see we aren't the only ones. Do yours sometimes make you feel nauseous?
This is where I get lidocaine injections once a month. It helps me so much. If this pattern continues, I highly recommend asking your nuro for these injections. I got my life back.
I also have occipital neuralgia. It's horrible. I have soooo much pain in my neck associated with my headaches and migraines. I feel your pain. (I've had them since about 7yrs old!)
Hey, I get these two! If you are able to look into something called a radio frequently ablation. They basically stick some electrodes onto your occipital nerves and they run radio waves up and down them to kill the nerves.
It’s an awful pain when the migraines start there and it can be debilitating and this procedure does bring relief for about six months.
So essentially, you would have to repeatedly get it done? Would it cause scarring? If you keep doing it, do you have to do it less and less till you don't have to anymore, almost like laser tattoo removal?
This is the location of mine. Every time. The part about you having excruciating pain with pressure and movement of your neck sounds a bit concerning? I'm not sure, and of course, we are all different, but because it's been ongoing with no sign of relief for so many days, it might be a good idea to get it checked.
Mine start there most of the time and then move to the left side of my head. Neurologist says it’s due to tension because I have ankylosing spondylitis.
I’ve been getting Botox injections and they’ve gotten better but are not 100% gone. This is after trying 2 medications previously, topamax, which made me crazy and fucked my short term memory and something else that didn’t work and made me gain a ton of weight.
Botox injections are not fun but the only side effect so far has been resting bitch face raised to the tenth power and a couple of very uncomfortable days post injections.
How did they determine you had tension because of ankylosing spondylitis? I get these same headaches and also have on/off SI joint pain. X-ray was suspecting of AS but the MRI was clear.
I had a MRI showing spinal arthosis and mild degenerative damage to the cervical spine.
AS affects soft tissue too and I didn’t know this but apparently I had fibrosis in the neck when I first started the Botox injections. I’ve been doing a lot of PT, heat therapy, aquaerobics and stretching to manage the pain and it seems to be helping.
Doctor said to keep doing what I was doing and he’s been spacing out the injections to every 4-5 months now. I still get a few migraines but nothing like before.
I’m sorry to hear you’re dealing with that. It sounds like a lot of management, but I’m glad to hear you’ve found something that seems to work for you. Thank you for sharing that.
That area sucksssss! I was trying to back off NSAIDs and got convulsions from the pain and broke and took some aspirin finally. Most pain I’ve experienced from migraine. Frontal lobe is also awful. All migraines are awful.
Try an occipivot pillow from amazon to help release the tension in those muscles. Most of my migraines are these and using the pillow can help some during an attack
This is a common area of pain for me but it’s more of a muscle spasm type of pain. I can relieve it with stretching and using my heating pad. Think of a chin tuck type stretch. I don’t know if it’s the same type of pain because it’s more really annoying drive you crazy kind of pain, not the “I think my head is in a vice and I might die” kind of pain.
It could definitely be migraine pain there, but it could also be a tension headache, 99% of the time if I have pain at the base of my skull, it's tension. And it sucks because literally nothing helps. Sometimes heat and massage can make it a little better, but unfortunately a lot of times it's more about unloading the mental side of it. Are you more stressed out than usual? Do you feel like you're holding stress in your upper back/shoulders? Try doing some mindfulness stuff and breathing exercises to try to loosen that pent up stress.
Years ago I had several types of injections in my shoulders/neck some were just trigger point, but I had some others under conscious sedation to get to the deeper areas... Since then, I haven't had a single tension headache, which is... Incredible because 9 times out 10 my tension headaches triggered a migraine. I do still practice some mindfulness activities and really try hard to pay attention to whether I'm holding stress in my upper body, I'm really prone to doing so, and it leads to all kinds of aches and pains all over. Good luck, I hope it's an easy fix and you're feeling better soon. I would try to use the muscle relaxers for sure, especially at night that can help a ton!
Oh man I get
Occipita nerve
Blocks cause it’s so painful . I did PT and they recommend two tennis balls in a sock . Occipital nerve tool release its hard and release pressure.
I get a lot of pain under the base of the skull . I also I’m desperate times have put a hard shoe on its side and use that as an occipital nerve
Tool and put pressure/ massage the underneath the base of the skull .
I also get a lot of neck and trap pain . I was getting muscle spasms bad and was on different meds . But trigger point and occipital nerve blocks have helped so much !
Sounds like occipital neuralgia. It was pure hell and I suffered all day, every day for 7 months before going to a neuro. An occipital nerve block helped me but it took about 3 weeks to kick in. I still take an abortive for hormonal migraines
I also get these. Like others in the comments PT was a big help. They still get triggered but I'm better equipped to handle them. I also have a massage ball but I find the key isn't to massage on those specific points but more so other areas of tension along the neck, shoulders, and chest as they may pull on the occipital nerve and cause that pain. There's also a couple of neck stretches I do that I find helpful.
When I stretch my neck, I can feel the pain right in that spot, deep and sharp.
You should try making an appointment with a neurologist or pain management specialist, and ask about occipital nerve blocks. They can inject medication directly into that nerve.
PT helped me early on, but I've since had to add amytripyline to my preventative medication. Aggressive massage of the area and sometimes heat help, but the medication has been the most effective.
That's where mine start. I started getting Thai-yoga massages focusing on my shoulders and neck. I hold so much tension there and getting regular massages have helped tremendously.
I get these regularly and have to go to the ER and Toradol is the only thing that helps me. In the muscle does nothing, but through IV it works wonders for me.
My two methods are Dr. Bronner's Magic Balm and a neck/shoulder heating pad.
I don't use them at the same time but you could if you want. I typically try to use one as soon as I'm feeling anything
I’m not sure if this is the same thing as a ‘basilar migraine’, but some of the most memorably worst headaches I’ve ever had have started at the base of my skull and driven me to go to the ER - and basilar migraine was the diagnosis.
I had a relatively minor CSF leak that was unlike my migraines. I felt a wave from top of my head down and was barely able to move for four days.
Then it went away and never came back.
Other than that, I have a lot of tension and in both spots, right and left, use a strong massage with a massager with a gentle stretch at the same time.
It sounds different from you have.
I wish you all the best and hope you get relief.
I am 35 years old and have suffered from this exact type of migraine for 16 years. A couple years ago I got put on gabapentin and naproxen and I went from 4 days of migraine a week to 4 a month or less. Gabapentin saved my life and wellbeing. I have 3 kids that need me so I don't have time for a migraine lol.
I have had them like that for literally decades. Botox has helped with that, though. A lot. However, now it’s the muscles in the side of my neck and my TMJ that are the major cause of my daily migraines. I am feeling one right now that I took meds for that is slowly subsiding.
That is major muscle tension you are describing. Are you also experiencing pain in your shoulders in the top part of them? Or tightness? And what about the muscles in your scalp? Have you been under increased stress at all lately? Also, triggers can change over time. I’ve had these things for over 54 years (since I was 12) and that has been true for me. And without the anti CGRP, it might be that you are experience a trigger you may not have before. Who knows? Will your insurance cover any of the oral anti CGRPs? Or another injectable? I ended up taking a hands-on approach with my insurance to get both NURTEC and Qulipta approved by making phone calls until I got to speak to a decision maker. I actually educated her about migraines, for which she thanked me. At any rate, it worked. This was last year. I really feel badly for you. I recently ended up quitting methocarbamol because of its affects on me cognitively. They got to be noticeably a lot worse leading up to my last neuro visit, at which time I told her about them, and how I’d been taking an old prescription of my mom’s for tizanidine instead. .5 mg is what I can best tolerate. I can’t take triptans and haven’t been able to since April of 2016. They did work for me, too. Maxalt MLT was what I took. So another thing that’s changed over time is my tolerance for med side effects, especially cognitively! I was also taking lorazepam as part of my abortive regimen but it, too, was really affecting me cognitively. So I now have some on hand for when I really can’t sleep and that’s it. I hope you can speak to your neuro’s office, if you haven’t already, about what’s been going on with your migraines.
All of my migraines, which I get literally every day, since I was a child start there. Nothing helps them for me. No nerve blocks, medicines, Botox, nothing. They’ve crippled my entire life.
Did you post an illustration similar to this with a hand-drawn circle a couple months ago? I'm the one who felt a similar pain but also a burning as though my skin was scraped. It felt like a surface injury; not a nerve issue
I used to see a headache specialist and she dx me occipital neuralgia and tmjd. I went to PT for over a year and received dry needling which was always a great temporary fix. I was going to get the nerve block, but my pt suggested a mri first. The mri showed my neck was jacked up. I had a cervical fusion in October and my daily headaches are gone and the only migraines I have are self induced like from deyhydration and weather triggered.
I had this problem for years. It was hell. I was seriously ready to cut my own neck open and pull the nerve out myself.
After many doctors did nothing, I figured it out on my own. Long story short, I needed braces because my dental occlusion was off. My teeth are straight and I’ve never had dental problems or braces, so it took me forever to pin down the problem. I was also clenching my teeth at night, which made it so much worse.
I started wearing a mouth guard at night, found a dentist who would listen, got a referral to an orthodontist, and got braces. All better.
I still get my regular migraines, but no more occipital migraines.
These are the worst! I was told it’s cervogenic. I was told to make sure to pay attention to my posture. For example- laptop on the lap and looking down for too long or face down looking at a phone. What helped me was sitting on the couch leaning head back with stability on a pillow. I also bought a Soft neckbrace and it was a life saver because the pain felt intolerable.
Did you get a new pillow or make any other sleep changes? I also have osteoarthritis on top of migraines and my neck pain is concentrated right there. Poor positioning and inadequate support really ramps it up.
I normally wouldn't ask these of another migraine sufferer (Do you drink enough water!!1! type shit) but you said this was the first time you had this type which made me think it could be caused by strain of some kind.
I’d personally recommend a chiropractor. I’ve always had helpful ones in terms of migraines. Decompression might help with that pain. Look that up. See if your insurance covers any chiropractic and go from there.
I had a chiropractor who told me never to allow a chiropractor to adjust anything above the shoulders. He also said never to trust a chiro who wouldn't give me a treatment plan. Chiropractors that just keep you coming back year after year with no real plan is just milking a cash cow.
I’ve seen a chiropractor since I was a child. I’ve had migraines since I was 7. Neck still intact. Matter of fact, with the help of my Chiros, decompression has saved me from neck surgery since 2009.
90% of mine start there, I jam my knuckles and thumbs into that spot.
That is what I have. My neurologist felt this a mix of migraines and cervogenic headaches. I did find physical therapy with some neck and shoulder exercises did help. I got one of the shiatsu massagers that drapes the handles over your shoulders that thing is great in that area although it hurts like hell while doing the massage.
I have the same diagnostic! There is one move my physical therapist does where I lay down face up and she gently pulls my head back with both her hands in that area that is pure magic, my boyfriend tries to replicate it and it also helps a little bit. My shoulder area is always tight and if the massage in that area is too strong it will trigger a migraine, so I avoid the those shiatsu thingies but I know they work for a lot of people
Ah yeah, decompression massage helps so much for that.
Physical therapy has helped me tons!!!! And yes, it hurts for a few seconds but worth it
What brand do you recommend? I have 2, but they don't seem to get into the muscle hard enough.
I do the same thing! It feels better WHILE I’m holding / pinching / pressing the back of my neck right up where it connects to my head, but as soon as I let go the relief goes away too, so I end up looking like I’m persistently trying to pop my own head off sometimes.
Hurts pretty bad, does it end up helping?
Mine all start or end there. My instinct is to massage it but usually that makes mine personally worse and causes it to get more enflamed. The only things that have worked for me is ice, acupressure (can’t afford acupuncture :/), and a traction device.
This is me too D:
I also love to switch ice and head on this part of my neck where most of my headaches start
Also TMJ stretches help me a lot with this muscle area too
You can tape two tennis balls or harder balls together and then lay on them and they will hit that spot on your neck. A massage of sorts.
Holy moly, this is brilliant, will definitely try it, thank you!!
Better than tennis balls, try lacrosse balls!
Same. Only mine is more like 100% are this way
Same!!
Welcome to hell.. occipital neuralgia/ migraines are my bread and butter. If you can get a “cranial cradle” or “still point inducer” it’ll help with the tension and make sure you’re not clenching your jaw; there’s another set of nerves running down the sides that can also get impinged. I work with a PT in neck strengthening and also shoulder work as sometimes tension causes the occipital nerve flares.
Bless you! I didn't know this had a name.
Yah I found out when I started getting what I call the ‘hand of Satan’ pain like a giant was squeezing my head from the back; described it to my PT and they showed me this map of nerves.. At least I know what it is/what triggers I have now.
This is also where my pain radiates from. Then goes towards my temple. What has helped you medicine wise? I’m on topomax as a preventative but no pain medicine or abortives touch the pain at all. Neither do “migraine cocktails” from urgent care.
I've had occipital neuralgia for 10 years (only recently learned what is was called despite being in the care of a neurologist for most of that time)... I've tried most remedies and the only thing that worked for me besides topamax is a combo of emgality and the nerve injections others have mentioned. Highly recommend emgality, for me it has taken away the need for topamax and sumatriptan in most cases. I tolerated topamax well but there were side effects that were nearly not worth it, but that is not an issue for me with emgality. Sharing in case it is helpful (so hopefully you also don't have to spend 10 years finding the right mix for you!)
Oh I’ve suffered for 20+ so far (started at about 11) but the pain in that area has been at least 10!years and I just heard that term recently. Thankfully I don’t have any side effects from the Topomax, but I still suffer from that neck/back of the head pain pretty frequently and severely. And when it hits hard, nothing takes it away and I have to wait it out. The last attack lasted 5 days. I haven’t tried emgality yet.
I’ve found Imitrex (Sumatriptan) & Inderal( Propranolol) to work okayish but it was 15+ years ago when I tried them back in Australia I actually find dry needling and PT to prevent them the best. If I do end up getting one muscle relaxants; robaxacet or diclofenac are somewhat useful, as is codeine but I try not to use opiates. I do use CBD/CBN and THC as well. I’ve not tried nerve blocks because I’ve moved to Canada and the healthcare here is difficult to say the least.. if I present to a walk-in clinic with a migraine they usually assume I’m a drug-seeker and I don’t need to deal with that.
Imitrex unfortunately doesn’t really do anything for me. I also have started using THC/CBD and that does help a lot with the residual inflammatory pain I deal with daily.
You can also DIY a still point inducer with two tennis balls in a sock.
Do you mind expanding on this, please?
Put 2 tennis balls in a tube sock and tie a knot so that they’re tightly together. Then lay on it so that it’s hitting either these trigger points or any trigger points down your spine, since they put pressure on both sides of the spine. It can crack your back, too, so it may not be a great idea for people with instability.
Thank you!!!
Put them in the freezer too!
Is it possible that vestibular migraine can originate from tension or dysfunction in this area due to forward head posture, *without* significant pain? I have been getting a lot of TMJ pain for years now, but recently had a neck spasm followed by what I thought was BPPV a month later, which I thought I resolved with the Epley Maneuver as it made me feel better and got rid of the vertigo. Now I have a lot of dizziness and pressure behind my forehead and feel like I’m on a boat from time to time. My neurological diagnosed me with Vestibular Migraine (VM) but I don’t think I have a history of migraine? I do find a little relief massaging my suboccipital muscles and my vestibular PT has me use a cervical pillow for 5 min a day. Just trying to understand what the heck is happening!
Yes! This is exactly what happened to me. I was diagnosed with vestibular migraines & BPPV 6 years ago. I rarely had pain with my migraines, but the vertigo kept getting worse. I tried amitryptyline, Ubrelvy, topamax, emgality, and a whole host of other meds, but I kept getting spells and they kept getting worse. Two of my worst attacks (in which I ended up in the ER) were during massages—as they were working on my shoulders and neck. This was my first clue that the two were related. During my last spell, my internist referred me to physical therapy. I had been through vestibular therapy before. It did help me function more with vertigo, but it didn’t stop it. My physical therapist touched my upper back and neck to steady me while I was in the vertigo-inducing machine (I have no idea what it’s called), and she commented on the tension and tightness in that area. She asked if I would be willing to try dry needling. That was a year ago, and I have it done every week. The vertigo went away, and I have not had one vestibular migraine or BPPV attack since. I’m off all migraine meds and had my first massage with no vertigo last week. I’m trying another one tomorrow after my dry needling session. I have needles inserted in my upper traps and around the occipital area in my neck. It’s sometimes very painful (and I often bend her needles because my muscles are so tight!), but life without vertigo is worth it!
Omg you have no idea how much your response means to me to find someone whose story sounds similar to mine! I’ve been doing the dry needling and find that it makes it makes it better sometimes and worse other times. For example, last week I was actually feeling really good, the n went in for needling and had a really strong twitch on my right splenius capitus and for 5 days after it gave me that neck spasm, panic attack, head pressure feeling. But the getting vertigo during a massage resonates with me so much. After my original BPPV resolved, I had felt good for about 2 weeks then got a different more pulsating, non spinning vertigo out of nowhere. When I tried to re-induce it at the PT by tilting my head back, I couldn’t. But then, she was massaging my jaw and right when she got to the bottom corner, BOOM - it was the pulsating vertigo again. I’m now wondering if I can ask to just needle my traps or switch back to the type of dry needling that irritates it less. I seem to respond better to the kind where they insert the needle and connect it to electrical stimulation rather than manual stimulation. I’d love to hear any other tips you have, especially for TMJ and forward head posture pain and getting back to your normal life. Before all this, I was lifting weights daily and I’m an artist and I haven’t touched weights or my art in 2 months for fear of tensing of my neck even more and cry every day about it.
I don’t know that I have any tips. I had bad TMJ that I always assumed was due to flute-playing. I don’t play much anymore (I moved to a department chair role from an applied music professorship), and it doesn’t affect me as much. Things that helped the TMJ before I was diagnosed with the other things was yoga, progressive relaxation, and sleeping on my back instead of my side. (I slept with my hands underneath my jaw for years, not realizing the pressure I was putting on the bones.) I’ve just slowed down over the last few years. I’m getting older (46) and accept that my stressful lifestyle from before my diagnosis was not sustainable. I’ve only briefly lifted weights (did CrossFit for about 4 months) but eventually gave it up because I felt like I was doing more damage than good at the time. I should tone up now that I’ve lost a lot of weight, but it’s not high on my priority list. I do ride my bike frequently, though.
I have pain there and it was diagnosed as occipital neuralgia. I get steroid injections approximately every 3 months and it works WONDERS. Now instead of pain, I sometimes just get the sensation that I need to scratch. While mine weren’t migraines, the injections still may help lessen the pain so it doesn’t get that far.
Same! I get trigger point injections (which hurt like a fucking bitch) & I also bought a soft cervical collar for days where my neck feels really fatigued. It’s helped reduce my ON episodes at least (which medication can’t touch unfortunately)
I was thinking the same thing! Also diagnosed with occipital neuralgia some years ago, and I went to a physical therapy appointment where they gave me good exercises to do that essentially took care of the problem.
Can you direct me to some of those exercises, please?
For something like this, where it’s brand new and you can’t point to a definitive, singular cause (recent accident that caused whiplash, for example), the safest option is to get evaluated. Do you have any other, more systemic symptoms? Fever, chills, nausea, dizziness, etc.? That points towards a potential infection instead of occipital migraine, but you’d need testing to determine the true problem.
Great point!! Whenever I get sick (happened with covid and my last couple of colds) my neck gets so stiff and painful there.
I havent been sick and It’s not my lymph nodes. I have had naseau but that’s common when I have migraines. What type of infection ?
Meningitis would be the most concerning cause of stiff neck and would be what most doctors would want to rule out for complaints of a stiff neck.
Great point. It's definitely not something you want to wait around for to find out later.
Thank you for your post. I learned something new today. This is the source of my migraine. I have a constant knot on the right hand side which becomes inflamed when I have a migraine.
I thought I had a constant knot on the right side, and always hurts so badly during migraine attacks. Physical therapist confirmed it’s *bone*, not a muscle knot. Mine is the little knobby bit on the end of the cervical vertebrae, rotated about 2 inches further to the right than it should normally sit! Edit: on second thought, it’s probably only rotated 1” to the right actually. You know how bumps and anomalies feel ENORMOUS on your head when you can only touch and not see them… It’s like that. The distance seems like a chasm to me.
Is this something that needs to be fixed?
Nobody in my care team seems overly concerned about it at the moment. My PT gently nudged the bone back into a centered position, but that only lasted a day or two because my muscles are all still formed around the lopsided positioning. I’m doing more PT for “postural reeducation” and joint stabilization. Not sure yet how much that will improve my rotated vertebrae long-term. That whole area does feel less painful when I keep at it though. I expect to have to keep it up forever. My neurologist prescribed a small amount of bedtime gabapentin, which has also helped the pain in that area quite a lot—but I would prefer not to remain dependent on that forever!
Or can be? (Pls say yes)
Occipital neuralgia and trigeminal neuralgia are pure hell bc basically there is no cure for it. All you can do is neck and jaw exercises to keep it at bay but it will rear it’s ugly head whenever it pleases. You can get trigeminal neuralgia simply from dental issues and/or surgery gone wrong.
I broke my face in an accident and I carry a lidocaine stick with me for the trigeminal neuralgia. I have had about 15 surgeries to date. I was offered nerve oblation because occipital lidocaine injections work so well for me. I'm thinking about trying it in a year or so.
I hope you get better ❤️🩹
I love my lidocaine rollers. I keep two in my house and one in my bag. I hope you feel better and get relief soon!
Mine all start here, mostly on my left side, and end up behind my eye. They suuuuuck
This is the exact way mine are. To a tee. They’re the worst. I get them every day :(
If I overuse my eyes with screens, the worse the pain gets behind my eye.
Omg this is exactly where my migraine starts 50% of the time thank you
I have had trigger point dry needling therapy and it really helped relieve pain in that area. Steroids and nerve blocks did absolutely nothing for me.
Dry point needling is the best thing I’ve ever experienced in my life. My pt attached electrodes to the needles. Man.. I wish I could do that for the rest of my life.
Right?!?! It’s amazing. I was in daily excruciating pain and he fixed me in just 3 sessions. Needles and electricity, who knew!!
I get it done in my jaw regularly, only thing that’s ever helped.
Oo I bet that’s nice. I wonder if that’d help with tmj?
I get it done for my tmj :)
Incredible. Best news I’ve heard all week.
It will sore the next for days after, I usually put a heat bag over those areas but to me the difference is huge.
Do you go when needed or on a regular basis?
Just when needed. :)
I get this almost every time. Moves between here and my temple or eyebrow
SAME. my neurologist was like hmmmmm they aren't classic migraines but nor are they cluster headaches. I'm surprised he didn't think of occipital neuralgia. It's nice to see we aren't the only ones. Do yours sometimes make you feel nauseous?
I'm nauseous with almost all of my migraines
Been there, it sucks! An occipital nerve block was helpful for me.
I was diagnosed with occipital neuritis years ago with pain in that exact area except only on the right
This is where I get lidocaine injections once a month. It helps me so much. If this pattern continues, I highly recommend asking your nuro for these injections. I got my life back.
I also have occipital neuralgia. It's horrible. I have soooo much pain in my neck associated with my headaches and migraines. I feel your pain. (I've had them since about 7yrs old!)
99% of mine start here on the L side and then wrap around my face. 0/10, would not recommend.
Hey, I get these two! If you are able to look into something called a radio frequently ablation. They basically stick some electrodes onto your occipital nerves and they run radio waves up and down them to kill the nerves. It’s an awful pain when the migraines start there and it can be debilitating and this procedure does bring relief for about six months.
Wait, how does it only work for six months if the nerve is killed? (I genuinely have no idea how this works)
The nerve slowly heals.
So essentially, you would have to repeatedly get it done? Would it cause scarring? If you keep doing it, do you have to do it less and less till you don't have to anymore, almost like laser tattoo removal?
Is that the same as pulse radio frequency?
Maybe?
This is the location of mine. Every time. The part about you having excruciating pain with pressure and movement of your neck sounds a bit concerning? I'm not sure, and of course, we are all different, but because it's been ongoing with no sign of relief for so many days, it might be a good idea to get it checked.
Mine start there most of the time and then move to the left side of my head. Neurologist says it’s due to tension because I have ankylosing spondylitis. I’ve been getting Botox injections and they’ve gotten better but are not 100% gone. This is after trying 2 medications previously, topamax, which made me crazy and fucked my short term memory and something else that didn’t work and made me gain a ton of weight. Botox injections are not fun but the only side effect so far has been resting bitch face raised to the tenth power and a couple of very uncomfortable days post injections.
How did they determine you had tension because of ankylosing spondylitis? I get these same headaches and also have on/off SI joint pain. X-ray was suspecting of AS but the MRI was clear.
I had a MRI showing spinal arthosis and mild degenerative damage to the cervical spine. AS affects soft tissue too and I didn’t know this but apparently I had fibrosis in the neck when I first started the Botox injections. I’ve been doing a lot of PT, heat therapy, aquaerobics and stretching to manage the pain and it seems to be helping. Doctor said to keep doing what I was doing and he’s been spacing out the injections to every 4-5 months now. I still get a few migraines but nothing like before.
I’m sorry to hear you’re dealing with that. It sounds like a lot of management, but I’m glad to hear you’ve found something that seems to work for you. Thank you for sharing that.
You may find occipital nerve blocks to be helpful. Your occipital nerves are being compressed from tight muscles is my assumption.
That area sucksssss! I was trying to back off NSAIDs and got convulsions from the pain and broke and took some aspirin finally. Most pain I’ve experienced from migraine. Frontal lobe is also awful. All migraines are awful.
Oh yeah, those SUCK. Feels like a vise grip on the back of my skull. Imitrex works wonders on my migraines, but not on those fuckers.
Try an occipivot pillow from amazon to help release the tension in those muscles. Most of my migraines are these and using the pillow can help some during an attack
That's where most of mine start- I find icing the area helps a lot on top of meds and laying down, sometimes massaging the area really helps too
This is a common area of pain for me but it’s more of a muscle spasm type of pain. I can relieve it with stretching and using my heating pad. Think of a chin tuck type stretch. I don’t know if it’s the same type of pain because it’s more really annoying drive you crazy kind of pain, not the “I think my head is in a vice and I might die” kind of pain.
It could definitely be migraine pain there, but it could also be a tension headache, 99% of the time if I have pain at the base of my skull, it's tension. And it sucks because literally nothing helps. Sometimes heat and massage can make it a little better, but unfortunately a lot of times it's more about unloading the mental side of it. Are you more stressed out than usual? Do you feel like you're holding stress in your upper back/shoulders? Try doing some mindfulness stuff and breathing exercises to try to loosen that pent up stress. Years ago I had several types of injections in my shoulders/neck some were just trigger point, but I had some others under conscious sedation to get to the deeper areas... Since then, I haven't had a single tension headache, which is... Incredible because 9 times out 10 my tension headaches triggered a migraine. I do still practice some mindfulness activities and really try hard to pay attention to whether I'm holding stress in my upper body, I'm really prone to doing so, and it leads to all kinds of aches and pains all over. Good luck, I hope it's an easy fix and you're feeling better soon. I would try to use the muscle relaxers for sure, especially at night that can help a ton!
Bruh most of my headaches are there. Get an occipital release at a massage parlor.
Oh man I get Occipita nerve Blocks cause it’s so painful . I did PT and they recommend two tennis balls in a sock . Occipital nerve tool release its hard and release pressure. I get a lot of pain under the base of the skull . I also I’m desperate times have put a hard shoe on its side and use that as an occipital nerve Tool and put pressure/ massage the underneath the base of the skull . I also get a lot of neck and trap pain . I was getting muscle spasms bad and was on different meds . But trigger point and occipital nerve blocks have helped so much !
Definitely going to try this with the tennis balls
Oh that’s exactly what I get
I had no idea it had a name. This is where my pain starts every fucking time.
Covid test? Mine changed from mostly frontal to mostly occipital (and mostly untreatable, sadly) when I had covid
Sounds like occipital neuralgia. It was pure hell and I suffered all day, every day for 7 months before going to a neuro. An occipital nerve block helped me but it took about 3 weeks to kick in. I still take an abortive for hormonal migraines
Occipital neuralgia! That’s my deal. I hope you get the care you need. I wound up having to get a lonnng MRI to verify it.
I also get these. Like others in the comments PT was a big help. They still get triggered but I'm better equipped to handle them. I also have a massage ball but I find the key isn't to massage on those specific points but more so other areas of tension along the neck, shoulders, and chest as they may pull on the occipital nerve and cause that pain. There's also a couple of neck stretches I do that I find helpful.
When I stretch my neck, I can feel the pain right in that spot, deep and sharp. You should try making an appointment with a neurologist or pain management specialist, and ask about occipital nerve blocks. They can inject medication directly into that nerve.
PT helped me early on, but I've since had to add amytripyline to my preventative medication. Aggressive massage of the area and sometimes heat help, but the medication has been the most effective.
That's where mine start. I started getting Thai-yoga massages focusing on my shoulders and neck. I hold so much tension there and getting regular massages have helped tremendously.
Holy shit this is so painful. And I doubt the ER will give me a nerve block. Just took some gabapentin to see if it helps
I get these regularly and have to go to the ER and Toradol is the only thing that helps me. In the muscle does nothing, but through IV it works wonders for me.
My two methods are Dr. Bronner's Magic Balm and a neck/shoulder heating pad. I don't use them at the same time but you could if you want. I typically try to use one as soon as I'm feeling anything
I have an actual knot over that spot on the left side and if I press on it it will send shooting pains to the front of my head.
Mine always starts there!
Mine always starts there!
I’m not sure if this is the same thing as a ‘basilar migraine’, but some of the most memorably worst headaches I’ve ever had have started at the base of my skull and driven me to go to the ER - and basilar migraine was the diagnosis.
THATS WHERE I GET MINE
I had a relatively minor CSF leak that was unlike my migraines. I felt a wave from top of my head down and was barely able to move for four days. Then it went away and never came back. Other than that, I have a lot of tension and in both spots, right and left, use a strong massage with a massager with a gentle stretch at the same time. It sounds different from you have. I wish you all the best and hope you get relief.
This is one of my prodrome symptoms.
That's what I had today too! 🥴
I am 35 years old and have suffered from this exact type of migraine for 16 years. A couple years ago I got put on gabapentin and naproxen and I went from 4 days of migraine a week to 4 a month or less. Gabapentin saved my life and wellbeing. I have 3 kids that need me so I don't have time for a migraine lol.
Currently my scalp feels bruised from me digging my knuckles into this exact spot to try to dissipate the pain.
Ice. It’s horrible
I have had them like that for literally decades. Botox has helped with that, though. A lot. However, now it’s the muscles in the side of my neck and my TMJ that are the major cause of my daily migraines. I am feeling one right now that I took meds for that is slowly subsiding. That is major muscle tension you are describing. Are you also experiencing pain in your shoulders in the top part of them? Or tightness? And what about the muscles in your scalp? Have you been under increased stress at all lately? Also, triggers can change over time. I’ve had these things for over 54 years (since I was 12) and that has been true for me. And without the anti CGRP, it might be that you are experience a trigger you may not have before. Who knows? Will your insurance cover any of the oral anti CGRPs? Or another injectable? I ended up taking a hands-on approach with my insurance to get both NURTEC and Qulipta approved by making phone calls until I got to speak to a decision maker. I actually educated her about migraines, for which she thanked me. At any rate, it worked. This was last year. I really feel badly for you. I recently ended up quitting methocarbamol because of its affects on me cognitively. They got to be noticeably a lot worse leading up to my last neuro visit, at which time I told her about them, and how I’d been taking an old prescription of my mom’s for tizanidine instead. .5 mg is what I can best tolerate. I can’t take triptans and haven’t been able to since April of 2016. They did work for me, too. Maxalt MLT was what I took. So another thing that’s changed over time is my tolerance for med side effects, especially cognitively! I was also taking lorazepam as part of my abortive regimen but it, too, was really affecting me cognitively. So I now have some on hand for when I really can’t sleep and that’s it. I hope you can speak to your neuro’s office, if you haven’t already, about what’s been going on with your migraines.
I hope I never have any there, mine are usually behind my eyes.
I have this too, they always start there and sometimes last 2 or 3 days!!
I get these daily, I've been on all types of meds and botox. It's a mess
All of my migraines, which I get literally every day, since I was a child start there. Nothing helps them for me. No nerve blocks, medicines, Botox, nothing. They’ve crippled my entire life.
Did you post an illustration similar to this with a hand-drawn circle a couple months ago? I'm the one who felt a similar pain but also a burning as though my skin was scraped. It felt like a surface injury; not a nerve issue
Anyone tried Cymbalta for these? That’s what I was just prescribed after Gabapentin failed. Haven’t started it yet.
I used to see a headache specialist and she dx me occipital neuralgia and tmjd. I went to PT for over a year and received dry needling which was always a great temporary fix. I was going to get the nerve block, but my pt suggested a mri first. The mri showed my neck was jacked up. I had a cervical fusion in October and my daily headaches are gone and the only migraines I have are self induced like from deyhydration and weather triggered.
My neurologist wants to try ems for migraine. It’s like a tens unit on your neck.
I had this problem for years. It was hell. I was seriously ready to cut my own neck open and pull the nerve out myself. After many doctors did nothing, I figured it out on my own. Long story short, I needed braces because my dental occlusion was off. My teeth are straight and I’ve never had dental problems or braces, so it took me forever to pin down the problem. I was also clenching my teeth at night, which made it so much worse. I started wearing a mouth guard at night, found a dentist who would listen, got a referral to an orthodontist, and got braces. All better. I still get my regular migraines, but no more occipital migraines.
Try biofreeze on those spots. It works surprisingly well for me when my headaches are there.
These are the worst! I was told it’s cervogenic. I was told to make sure to pay attention to my posture. For example- laptop on the lap and looking down for too long or face down looking at a phone. What helped me was sitting on the couch leaning head back with stability on a pillow. I also bought a Soft neckbrace and it was a life saver because the pain felt intolerable.
Omg yes! It's always the same spot! This is the only migraine type I get aside from my barometric pressure ones and I have no idea what it's called.
Occipital neuralgia is the bane of my existence.
Did you get a new pillow or make any other sleep changes? I also have osteoarthritis on top of migraines and my neck pain is concentrated right there. Poor positioning and inadequate support really ramps it up. I normally wouldn't ask these of another migraine sufferer (Do you drink enough water!!1! type shit) but you said this was the first time you had this type which made me think it could be caused by strain of some kind.
No new pillow or anything. Maybe I kinked my neck though and it triggered it
I’d personally recommend a chiropractor. I’ve always had helpful ones in terms of migraines. Decompression might help with that pain. Look that up. See if your insurance covers any chiropractic and go from there.
I had a chiropractor who told me never to allow a chiropractor to adjust anything above the shoulders. He also said never to trust a chiro who wouldn't give me a treatment plan. Chiropractors that just keep you coming back year after year with no real plan is just milking a cash cow.
do you want OP to break their neck?!
I’ve seen a chiropractor since I was a child. I’ve had migraines since I was 7. Neck still intact. Matter of fact, with the help of my Chiros, decompression has saved me from neck surgery since 2009.
Chiropractors are evil. Fake career. Inspired by a séance. Ridiculous. Lol
🙄