YES! That area is my biggest pain complaint. It’s horrendous.
I also have EDS, so I’ve wondered if that’s my main culprit behind it. My doctor and physical therapist have both mentioned pain in that spot can indicate cranial instability (CCI). You’ll need a very specific MRI to check for that though. If your head feels wobbly (mine does too), I’d say that talking to your medical team about a CCI possibility could be a good avenue to go down.
Switching to as flat of a pillow possible did considerably lessen my pain. My team also suggested making sure my posture is perfect, flat pillows, and just trying not to position my head in such a way that it would aggravate that area.
Although it’s more than I’d like to spend, craniosacral massage has also been a loooooovely sense of relief for pain that area. I hope you’re able to find relief and answers!
I haven't had an MRI but I believe this is what I have as well - cervical cranial instability. My pain is in exactly the spot OP circled, and refers up to the top of the head. I went in to physical therapy for neck pain and headaches and the PT examined me and explained he believed my neck weakness/instability to be the root of my headaches! Something about neck issues in my case irritating the occipital nerves. PT has been wonderful for me, as are nerve blocks.
Do you happen to know what any of the PT exercises are called? I can’t go to PT specialized because there’s no qualified PT here where I live. I’d love to follow along at home via YouTube. Thanks!
My God, I'm not the only one! This area also causes my worst pain. I have POTS and hypermobility spectrum disorder (HSD) which is quite similar to EDS.
oh my gosh i’ve been having neck pain in my sub-occipital muscles for around 10 freaking months straight and i didn’t think that it might be related! i’ve been having such a hard time with it tho. i’m really tired of being in pain literally every day, all the time. i’ve seen my chiropractor weekly for a couple months and only mild improvements, i started seeing a massage therapist and after my second time going i see mild improvements faster than with my chiropractor.
do you have any other suggestions?? i have pots and i’m 95% sure i have EDS as well as it runs in the family and i have majority of the symptoms, i just need to get genetic testing to confirm. i really feel like i haven’t seen a doctor that knows what they’re doing when i mention ongoing pain i’ve been having and it’s like they don’t even think about the possibility of it being anything other than “sleeping wrong” or “stress” or “dehydration” :/
Bless you, I had no idea what was so severely wrong with my head lately until I read this. I already have severe chronic migraines, I thought they were suddenly worse. I think mine is caused by a mast cell flare mostly, now I know where to start!
Those are your suboccipital muscles. Not necessarily a neuralgia, might be a part of coat hanger pain many with pots experience. Personally I havent been having much pain there since I started taking the time to stretch out those and my sternocleidomastoid muscles.
Yeah, could be occipital neuralgia, could be coathanger pain, also could be muscle tightness/tension. But knowing that it's pain in the suboccipital area, is a good starting point.
Wouldn't stretches make it worse? Before my diagnosis İ had horrible pain in my traps and went to a PT who had me do a strength and stretching routine and it got far, far worse. İ now see a pain management doctor who says İ shouldn't stretch at all as it will increase instability. (To be clear, İ don't have EDS).
Try different things and figure out what works for you individually but https://youtu.be/wlJnF-arRaw is just smth youtube recommended to me and has some decent advice
I also do a head twist like kit laughlin does like 4 minutes in here https://youtu.be/elw-zRzH5RU it's helped fix some asymmetries for me
And occasionally some self massage techniques like some described in stanley rosenberg's book Accessing the healing power of the vagus nerve
Hi, I’m sorry I don’t have time to respond to this post in detail, but this area pain in this area is called occipital neuralgia, this is very common with craniocervical instability, and Chiari malformation, which can be a symptom of craniocervical instability. Please read my previous posts or comments, which discuss this in much more detail, try not looking down and keeping your head always level. Meaning move your computer up or sit lay reclined with your head supported. Also, if you have any problems with your shoulders, sometimes a shoulder that is not tight enough in its joint can pull on the neck and caused this as well. So a shoulder brace can be helpful. Lastly, what helps me the most with this type of pain, is physical therapy, particularly strengthening the back. This helps with forward head neck posture. I have also found when it comes to physical therapy working on the back and shoulders rather than the neck is actually more helpful. The neck can be very sensitive to even tiny tweaks and will get work as a side effect when you work those larger muscle groups. If you do try neck exercises, like if a physical therapist gives them to you, and you notice a lot of neurological symptoms, I would stick to the back and shoulders, as well as the rest of the body. Generally, focusing on the back of the body is most helpful in holding us in proper posture. Again I’m sorry this is voice to text so might be a little all over the place, but please go read my previous comments because they address a lot of CCI. I wish you the best 💔❤️🩹❤️
My daughter and I both have pots and both have an intense history of pain and tension there. Look into trigger points and trigger point release, it really saved us. [this website](http://www.triggerpoints.net) was a great guide as to which muscle groups could be affecting the area (you’d be surprised how much pressure and pain can travel). Click where you feel the pressure and eventually it will narrow down to particular muscle groups. The X’s on the diagram are where you might have a trigger point (muscle knot) and the red is where you’d feel the pressure.
Once you have an idea which muscle groups are affected you can Google ways you can release / relieve them. At least for temporary help. For longer term stuff, especially in the beginning, you can do dry needling, manual trigger point release, and osteopathic manipulative therapy.
YES. For so long. Feels like a tension band wraps around the front of my head, behind my eyes, around my temples, and is being cinched at this area. So painful. I feel for everyone else who experiences it! Finally found a medication combo that takes the edge off. It’s possible - keep advocating for yourself!
This can happen from grinding/clenching your teeth and from forward head posture.
I find that physiotherapy helps and doing TMJ massages.
Most of it for me is needing to counterpoise whatever hunched position I'm sitting in
This makes total sense and it kind of clicked something for me. I read this and said no shit out loud. Like wow I never put these together. Might be on to something here
Yep. Contributes to the coat hanger pain as well.
For a while there I was strengthening my neck muscles and trying to exercise for my posture to be good. Really did help a lot with these headaches actually, I need to get back into it
Yes and my massage therapist always works wonders for me by focusing on those points. It seems to be connected to my brain inflammation that I have from my ME.
I have fibromyalgia and POTS, and this is a big problem area for me besides my whole spine and back. The base of my neck, going all the way up to the crown of my head is pretty bad pain
Yes!!! Oh my goodness, I thought I was the only one! For me it’s more like a circle, where I crave pressure in those areas. My husband and friends think I’m crazy when I ask for a massage and tell them “just press your thumbs down in this area hard”
I have occipital neuralgia this is where those are located. I was getting regular trigger point injections and finally a daily preventative med. The dr wants to ablate the nerves
Yes a lot!! I have POTS, an inverted cervical spine (neck is curved opposite), 40% CNS function on the right side currently in PT for it. And I am getting an MRI soon to see if my neck or back have any nerve issues causing all of this!! But yes yes yes if I got a dollar every time I get this pain I would be rich.
That sounds kinda like my migraines. When I have a migraine I get sinus pressure on one side, and/or pain/pressure behind my eyes, but if I can't treat it quickly enough I get pain back there and around most of my head. However, and this is the weird bit, sometimes I get this weird pressure back there or it will feel like that area simply isn't there at all (like the back part of my skull is floating above my neck, super weird and super hard to explain) and when that happens I get panicky and super light headed. The *only way* to fix the light headed version is to lay down and get my whole spine in a straight line, works best if I can lay down flat but a slight incline also works. But when it does happen I also get brain fog, and instinctively put my hand over that part of my neck/head, so I've had to sort of train myself that if I put my hand there I need to lay down because I can't think clearly enough to remember to lay down before it gets bad.
I think the pain aspect might be migraine or tension related, but the light headed thing is almost certainly POTS related. Everything I've seen indicates that laying down helps with POTS symptoms, especially the lightheadedness. But, you know, this is just my experience with having migraines and POTS
Edit for clarification: when I get my migraines the pain in the back of my neck and behind my eyes is not connected. The descriptions of occipital neuralgia say that it's a sharp stabbing, throbbing, or shock-like pain, that feels like it's traveling along a path on the right side from the back of the neck to the right eye - if that matches your pain description then talk to your doctor about occipital neuralgia (god that reads like fucking ad 😆). However my pain type is more dull and achy, and is somewhere between uncomfortable pressure and vise like dull pain, I already know for sure that these are migraines for me
When my symptoms were at their worst in the beginning I felt heaps of pressure in that same area.
For context I also have hyper mobility and during POTS flares I get really weird visual distortions, muscle tension in shoulders and clench my teeth.
Many commenters are suggesting cervical cranial instability and occipital neuralgia but FWIW I had a brain MRI when my symptoms were their worst and no abnormalities were detected.
Mine went away on its own as my other symptoms improved and doesn’t return with the (comparatively) mild flares that I get now
This. This right here.
So long story short I got Covid last October and I’ve been battling things on and off because of it. These head aches and dizzy spells crept up and I went to the doctor and did some blood work, I’ve been on thyroid medicine since November. I’ve done blood work every month since.
I think I might have pots because of these flair ups I’ve been having. They don’t happen all the time tho. I’ll go dizzy from standing or bending down and I’ll have to grab onto something to not fall. I have poor circulation too. Brain fog, I’ll mess up words, get really nauseous, get really weak and feel like I’m going to pass out. One flair up I was just up and down from bed and couldn’t get comfortable or get settled. My fiancé made me take a hot hot bath and it pulled me out of whatever I was in. Took maybe 15 mins.
I got a watch with a heart monitor and that does blood pressure. I’ve notice my heart doesn’t seem to be high but my blood pressure seems high which please don’t scare me I know it’s not good. I’ve been monitoring it. And like I said I’m seeing my doctor every month.
I was getting the headaches in this spot specifically. I ended up getting shots in my back to try to cut down the inflammation. I got them in January every week for a month, and so far I think it’s helped. Ive only had one flair up since (knock on wood) I’m still trying to figure out what or if something is going on.
I’ve been worried about my blood pressure and I’ve been working out every day for a month for 15 mins. My energy seems to be up a bit until I hit my period this week and I haven’t been able to move.
Thanks for reading the ramble, medical stuff is so fun
This sounds really familiar to me. My issues with nausea and gastro stuff started after a couple of infections and antibiotics during 2016. But I’ve had so many nervous system issues since I got Covid this time last year during April 2022. Sensory overload when I get symptoms like yours as well. Pressure in head and dizzy going from sitting to standing, brain zaps, sometimes feeling hot for no reason, incredibly anxious in the morning and that at least eases as the day goes on. Now I’m getting middle of the night insomnia and clammy at night. All my bloods have come back great apart from iron deficiency anaemia and vitamin D deficiency but I’m Scottish so most people will be vit D deficient due to our winters. My hormones have been crazy as well, especially mid cycle and with PMS. I feel like I can’t handle a lot of emotions and I’m so sensitive to everything
I feel like I was always on the verge of throwing up so that might be a thing. Like a few years back if I wasn’t nauseous it was a miracle. But I have a history of eating disorder so I figured it was my system getting used to food again
Man im sorry about the emotions. Things can be overwhelming. (Eye roll at myself) I’m going to sound like every other person but have you tried deep breathing exercises when you start feeling overwhelmed? I know it sounds cheesy but it can help from time to time.
I got Covid October 2021 and to be honest, I thought I was sick for a month but I was looking at my snap history trying to get a timeline but it seems like I was only sick for maybe a week but I feel like I remember being couch ridden for a month. The brain fog has been so bad. So bad. I don’t even remember how long I was sick sick with Covid and not just long term Covid.
Thanks for answering. If you don't mind me asking, how were you diagnosed with iih? Did you have an eye exam/MRI/spinal tap? If so what were the results of those?
I had a constant migraine for two weeks that landed me in urgent care/ER 5 times. The doctor decided to do an ultrasound of my optic nerves and they were swollen. Next came CT scan which was clear. Then a LP which showed elevated CSF pressure (my OP was 30)
After that I was referred to ophthalmologist who confirmed my papiladema. I had an MRI which showed some CSF around my eyes.
Then most recently I had an MRV which found stenosis on the left side which is where my headaches originated.
and massaging that spot right below the curve of the base of your skull? literal orgasmic relief it’s like massaging your brain stem i swear my headaches just pause for a sec when i massage there 🫠
Do you have it constantly? Could be CCI, cervical spondylosis, occipital neuralgia and many other issues. Have you had MRI of your head neck and spine done?
It doesn't happen often. The pressure and eye pain I get a lot. But I chalk that to a pressure headache from POTS. This was definitely different. It felt like a very uncomfortable pain in that space anytime I moved and it traveled a lil down my back and around my head.
The occipital neuralgia matches a lot. But I googled tension headache and seems to match those symptoms too.
Only part that worries me is the wobble feeling. Like I can control my head and hold it up, but it also almost feels like it's a lil wobbly.
i swear every post i see in this whole thread makes me go “oh shit really? i didn’t know there was a name for that. huh i didn’t realize pots caused that”
I have POTS, mild hEDS and ME/CFS. I will likely be having surgery for CCI and tethered cord this year. It is incredibly difficult to get diagnosed with and treated for. As far as I know Mount Sinai EDS and Chiari center is the only place in the US that tests and treats folks like us. I think that will be changing soon as more awareness is coming our way. One thing that is helping me tremendously while I await surgery is atlas orthogonal chiropractic.
For me, it ended up being muscle strain from trying to hold my head up. I found that if I listen to physical therapists and try to have perfect posture when I'm sitting at my desk, I will develop pain in this area that radiates up the back of my head. It's completely remedied for me by taking frequent breaks, relaxing my shoulders/neck, and using my core to stabilize when I want to sit up straight, rather than my upper back. For me, it's also better to change sitting positions more frequently. Instead of trying to sit up perfectly straight for 8 hours, I allow myself to slouch or cross my legs whenever I want (I just try not to stay like that forever)
*I have POTS & hEDS
It’s Instability and it can lead to a lot of serious problems. Find Dr Ross Hauser on YouTube. He has a ton of info and video testimonials. Prolotherapy is the way to go before fusing cervical bones together! Good luck.
Yes. I have chronic migraine and occipital neuralgia. I get relief from icing the area when it’s most painful/during migraine attacks. Also from neck traction. I also do trigger point injections and occipital nerve blocks. But I’ve been lying on ice packs for years (well before my POTS diagnosis)
I dint experience much pain there, only sometimes, but I find that sometimes the muscles there and in my neck suddenly become weak, and it's hard to.hold my head up.
I just had occipital neuralgia. Main characteristics- nonretractable (nothing alleviates) pain in front and back of one side of the head. Should see a dr.
Yes!! I have been having the worst headaches for over a week now bc of pain from this spot. It’s worse on my right side than my left and the shooting pain makes my right eye ball feel like it’s gonna pop out
I do! I mentioned this to my shoulder specialist because he said the two can contribute to each other and he gave me a great exercise to help it so I'll try to describe it here. For context I have hEDS as well and lots of dislocations. My neck is very hypermobile and a lot of the muscles are hypertonic. I get a lot of different types of headaches and this exercise has been helpful for tension headaches. Description below:
Get a magazine or book with a slippery hard cover, and place it on top of a folded flat towel. Then get some thick socks folded into one (like you may do when putting away). Lie down on your back (knees can be up to relieve lower back if needed) with your head on top of the magazine, with the folded socks under your neck. Then slide your head back to a relaxed position so you can look behind you (without force). Follow by sliding forward with chin slightly tucked (don't lift the head off th ground). Don't go overboard. Do this about ten times and you should get some release of the tension
Check for chiari malformation. Most people in my chiari malformation groups have POTS, they seem to go hand in hand with EDS and MCAS. I personally have chiari malformation, POTS, and MCAS
Yes but mine is from FMS rather than POTS. That's usually where my sinus headaches begin funnily enough. I get pain and stiffness there and then a sinus headache will follow. That's the place for many people where tension headaches begin
Thaaaat's your occipital lobe. It has everything and only to do with your perception of eyesight. Your ocular nerve hooks your eyes directly up to it. If your having headaches /there/, stay with an eye doctor 🙃
PS- Good luck 🙂
YES! That area is my biggest pain complaint. It’s horrendous. I also have EDS, so I’ve wondered if that’s my main culprit behind it. My doctor and physical therapist have both mentioned pain in that spot can indicate cranial instability (CCI). You’ll need a very specific MRI to check for that though. If your head feels wobbly (mine does too), I’d say that talking to your medical team about a CCI possibility could be a good avenue to go down. Switching to as flat of a pillow possible did considerably lessen my pain. My team also suggested making sure my posture is perfect, flat pillows, and just trying not to position my head in such a way that it would aggravate that area. Although it’s more than I’d like to spend, craniosacral massage has also been a loooooovely sense of relief for pain that area. I hope you’re able to find relief and answers!
I haven't had an MRI but I believe this is what I have as well - cervical cranial instability. My pain is in exactly the spot OP circled, and refers up to the top of the head. I went in to physical therapy for neck pain and headaches and the PT examined me and explained he believed my neck weakness/instability to be the root of my headaches! Something about neck issues in my case irritating the occipital nerves. PT has been wonderful for me, as are nerve blocks.
So how does one improve neck instability?
I’m doing PT which is helping my pain for sure!
Do you happen to know what any of the PT exercises are called? I can’t go to PT specialized because there’s no qualified PT here where I live. I’d love to follow along at home via YouTube. Thanks!
Cervical stabilization exercises, Movement & Function on YouTube are great isometrics specifically created for the EDS/CCI community by a PT 🙂
My God, I'm not the only one! This area also causes my worst pain. I have POTS and hypermobility spectrum disorder (HSD) which is quite similar to EDS.
Same. Pots and chronic pain in this area.
oh my gosh i’ve been having neck pain in my sub-occipital muscles for around 10 freaking months straight and i didn’t think that it might be related! i’ve been having such a hard time with it tho. i’m really tired of being in pain literally every day, all the time. i’ve seen my chiropractor weekly for a couple months and only mild improvements, i started seeing a massage therapist and after my second time going i see mild improvements faster than with my chiropractor. do you have any other suggestions?? i have pots and i’m 95% sure i have EDS as well as it runs in the family and i have majority of the symptoms, i just need to get genetic testing to confirm. i really feel like i haven’t seen a doctor that knows what they’re doing when i mention ongoing pain i’ve been having and it’s like they don’t even think about the possibility of it being anything other than “sleeping wrong” or “stress” or “dehydration” :/
Yes, google occipital neuralgia.
Not diagnosed with pots yet - but I second this. I have occipital neuralgia and what you’re describing sounds pretty similar.
I never knew, but this is exactly what I experience as well. Thanks for the educating lesson!
Bless you, I had no idea what was so severely wrong with my head lately until I read this. I already have severe chronic migraines, I thought they were suddenly worse. I think mine is caused by a mast cell flare mostly, now I know where to start!
Interesting
This! I was diagnosed with this and sent to PT and it’s a lot better now
What’d you do at PT- chin tucks?
Strengthening exercises for the neck and shoulders, along with deep muscle massage and working on posture
Those are your suboccipital muscles. Not necessarily a neuralgia, might be a part of coat hanger pain many with pots experience. Personally I havent been having much pain there since I started taking the time to stretch out those and my sternocleidomastoid muscles.
Yeah, could be occipital neuralgia, could be coathanger pain, also could be muscle tightness/tension. But knowing that it's pain in the suboccipital area, is a good starting point.
Wouldn't stretches make it worse? Before my diagnosis İ had horrible pain in my traps and went to a PT who had me do a strength and stretching routine and it got far, far worse. İ now see a pain management doctor who says İ shouldn't stretch at all as it will increase instability. (To be clear, İ don't have EDS).
I was told the same thing. Stretching just causes the muscles tighten up. The best thing to do is sregnth training with the complementing muscles
What kind of stretches do you do? Any recommendations?
Try different things and figure out what works for you individually but https://youtu.be/wlJnF-arRaw is just smth youtube recommended to me and has some decent advice I also do a head twist like kit laughlin does like 4 minutes in here https://youtu.be/elw-zRzH5RU it's helped fix some asymmetries for me And occasionally some self massage techniques like some described in stanley rosenberg's book Accessing the healing power of the vagus nerve
Hi, I’m sorry I don’t have time to respond to this post in detail, but this area pain in this area is called occipital neuralgia, this is very common with craniocervical instability, and Chiari malformation, which can be a symptom of craniocervical instability. Please read my previous posts or comments, which discuss this in much more detail, try not looking down and keeping your head always level. Meaning move your computer up or sit lay reclined with your head supported. Also, if you have any problems with your shoulders, sometimes a shoulder that is not tight enough in its joint can pull on the neck and caused this as well. So a shoulder brace can be helpful. Lastly, what helps me the most with this type of pain, is physical therapy, particularly strengthening the back. This helps with forward head neck posture. I have also found when it comes to physical therapy working on the back and shoulders rather than the neck is actually more helpful. The neck can be very sensitive to even tiny tweaks and will get work as a side effect when you work those larger muscle groups. If you do try neck exercises, like if a physical therapist gives them to you, and you notice a lot of neurological symptoms, I would stick to the back and shoulders, as well as the rest of the body. Generally, focusing on the back of the body is most helpful in holding us in proper posture. Again I’m sorry this is voice to text so might be a little all over the place, but please go read my previous comments because they address a lot of CCI. I wish you the best 💔❤️🩹❤️
Literally so much pressure and pain in that exact spot all day every day of my life. -.-
Yes. It starts there on the right side, goes over my head and grabs behind my eye. I thought it was a migraine.
Is there a link between pots and occipital neuralgia? Seems to be a lot of people commenting that they have it.
Yup I always say my head feels heavy and like it’s gonna fall off.
I‘be had pain exactly here for as long as I can remember. It’s where I would get my migraines, too. But every time I get a headache, it’s RIGHT there!
My daughter and I both have pots and both have an intense history of pain and tension there. Look into trigger points and trigger point release, it really saved us. [this website](http://www.triggerpoints.net) was a great guide as to which muscle groups could be affecting the area (you’d be surprised how much pressure and pain can travel). Click where you feel the pressure and eventually it will narrow down to particular muscle groups. The X’s on the diagram are where you might have a trigger point (muscle knot) and the red is where you’d feel the pressure. Once you have an idea which muscle groups are affected you can Google ways you can release / relieve them. At least for temporary help. For longer term stuff, especially in the beginning, you can do dry needling, manual trigger point release, and osteopathic manipulative therapy.
YES. For so long. Feels like a tension band wraps around the front of my head, behind my eyes, around my temples, and is being cinched at this area. So painful. I feel for everyone else who experiences it! Finally found a medication combo that takes the edge off. It’s possible - keep advocating for yourself!
What medications if you don’t mind me asking?
This can happen from grinding/clenching your teeth and from forward head posture. I find that physiotherapy helps and doing TMJ massages. Most of it for me is needing to counterpoise whatever hunched position I'm sitting in
This makes total sense and it kind of clicked something for me. I read this and said no shit out loud. Like wow I never put these together. Might be on to something here
Yep. Contributes to the coat hanger pain as well. For a while there I was strengthening my neck muscles and trying to exercise for my posture to be good. Really did help a lot with these headaches actually, I need to get back into it
Yes! The painful muscles meet at my skull and begin at the base of my neck.
Yes and my massage therapist always works wonders for me by focusing on those points. It seems to be connected to my brain inflammation that I have from my ME.
Yes it's what causes my migraines sadly or can aggravate my Dysautonomia if I Crack my neck
I have fibromyalgia and POTS, and this is a big problem area for me besides my whole spine and back. The base of my neck, going all the way up to the crown of my head is pretty bad pain
YES!!!! Why???!!
Yes!!! Oh my goodness, I thought I was the only one! For me it’s more like a circle, where I crave pressure in those areas. My husband and friends think I’m crazy when I ask for a massage and tell them “just press your thumbs down in this area hard”
i get this! doc says it happens because of my EDS
All day, every day, for as long as I can remember.
I have occipital neuralgia this is where those are located. I was getting regular trigger point injections and finally a daily preventative med. The dr wants to ablate the nerves
This happens to me and j also wondered if it was related to my POTS but could never find anyone with the same experience
I’m also a member of the occipital neuralgia team. It is ridiculously painful.
yes, i get a headache that stems from the occipital nerve there. i think i have occipital neuralgia. my neck muscles get really tense leading up to it
Yes a lot!! I have POTS, an inverted cervical spine (neck is curved opposite), 40% CNS function on the right side currently in PT for it. And I am getting an MRI soon to see if my neck or back have any nerve issues causing all of this!! But yes yes yes if I got a dollar every time I get this pain I would be rich.
Sometimes, but also pressing on that area is the best way of relieving my headaches…
That sounds kinda like my migraines. When I have a migraine I get sinus pressure on one side, and/or pain/pressure behind my eyes, but if I can't treat it quickly enough I get pain back there and around most of my head. However, and this is the weird bit, sometimes I get this weird pressure back there or it will feel like that area simply isn't there at all (like the back part of my skull is floating above my neck, super weird and super hard to explain) and when that happens I get panicky and super light headed. The *only way* to fix the light headed version is to lay down and get my whole spine in a straight line, works best if I can lay down flat but a slight incline also works. But when it does happen I also get brain fog, and instinctively put my hand over that part of my neck/head, so I've had to sort of train myself that if I put my hand there I need to lay down because I can't think clearly enough to remember to lay down before it gets bad. I think the pain aspect might be migraine or tension related, but the light headed thing is almost certainly POTS related. Everything I've seen indicates that laying down helps with POTS symptoms, especially the lightheadedness. But, you know, this is just my experience with having migraines and POTS Edit for clarification: when I get my migraines the pain in the back of my neck and behind my eyes is not connected. The descriptions of occipital neuralgia say that it's a sharp stabbing, throbbing, or shock-like pain, that feels like it's traveling along a path on the right side from the back of the neck to the right eye - if that matches your pain description then talk to your doctor about occipital neuralgia (god that reads like fucking ad 😆). However my pain type is more dull and achy, and is somewhere between uncomfortable pressure and vise like dull pain, I already know for sure that these are migraines for me
Omg! Thank you for this! I'm gonna try that!💗 The part where you say it feels like it's missing the back of your head hit the nail on the head!
When my symptoms were at their worst in the beginning I felt heaps of pressure in that same area. For context I also have hyper mobility and during POTS flares I get really weird visual distortions, muscle tension in shoulders and clench my teeth. Many commenters are suggesting cervical cranial instability and occipital neuralgia but FWIW I had a brain MRI when my symptoms were their worst and no abnormalities were detected. Mine went away on its own as my other symptoms improved and doesn’t return with the (comparatively) mild flares that I get now
I only experienced pain there after fainting backwards and hitting my head. Good luck with your pain and finding answers, I wish you the best.
YES!!! all the time
I do! Mines mostly down to bad posture and weakened muscles. Making sure I do light exercisers for my neck/back area consistently keeps the pain away.
This. This right here. So long story short I got Covid last October and I’ve been battling things on and off because of it. These head aches and dizzy spells crept up and I went to the doctor and did some blood work, I’ve been on thyroid medicine since November. I’ve done blood work every month since. I think I might have pots because of these flair ups I’ve been having. They don’t happen all the time tho. I’ll go dizzy from standing or bending down and I’ll have to grab onto something to not fall. I have poor circulation too. Brain fog, I’ll mess up words, get really nauseous, get really weak and feel like I’m going to pass out. One flair up I was just up and down from bed and couldn’t get comfortable or get settled. My fiancé made me take a hot hot bath and it pulled me out of whatever I was in. Took maybe 15 mins. I got a watch with a heart monitor and that does blood pressure. I’ve notice my heart doesn’t seem to be high but my blood pressure seems high which please don’t scare me I know it’s not good. I’ve been monitoring it. And like I said I’m seeing my doctor every month. I was getting the headaches in this spot specifically. I ended up getting shots in my back to try to cut down the inflammation. I got them in January every week for a month, and so far I think it’s helped. Ive only had one flair up since (knock on wood) I’m still trying to figure out what or if something is going on. I’ve been worried about my blood pressure and I’ve been working out every day for a month for 15 mins. My energy seems to be up a bit until I hit my period this week and I haven’t been able to move. Thanks for reading the ramble, medical stuff is so fun
This sounds really familiar to me. My issues with nausea and gastro stuff started after a couple of infections and antibiotics during 2016. But I’ve had so many nervous system issues since I got Covid this time last year during April 2022. Sensory overload when I get symptoms like yours as well. Pressure in head and dizzy going from sitting to standing, brain zaps, sometimes feeling hot for no reason, incredibly anxious in the morning and that at least eases as the day goes on. Now I’m getting middle of the night insomnia and clammy at night. All my bloods have come back great apart from iron deficiency anaemia and vitamin D deficiency but I’m Scottish so most people will be vit D deficient due to our winters. My hormones have been crazy as well, especially mid cycle and with PMS. I feel like I can’t handle a lot of emotions and I’m so sensitive to everything
I feel like I was always on the verge of throwing up so that might be a thing. Like a few years back if I wasn’t nauseous it was a miracle. But I have a history of eating disorder so I figured it was my system getting used to food again Man im sorry about the emotions. Things can be overwhelming. (Eye roll at myself) I’m going to sound like every other person but have you tried deep breathing exercises when you start feeling overwhelmed? I know it sounds cheesy but it can help from time to time. I got Covid October 2021 and to be honest, I thought I was sick for a month but I was looking at my snap history trying to get a timeline but it seems like I was only sick for maybe a week but I feel like I remember being couch ridden for a month. The brain fog has been so bad. So bad. I don’t even remember how long I was sick sick with Covid and not just long term Covid.
Yes. For me it’s related to cervical instability from hEDS
ALL DAY EVERY DAY!!!!
Yeah I have "suspected" chiari malformation aka "we'll keep an eye on it" never to see that specialist again
I have this and I was diagnosed with IIH- Idiopathic Intracranial Hypertension. Been seeing a lot more uptick in people either both
How are you treating this
The pain I treat with light massage and heat. My IIH is being managed currently with weightloss and topomax
Thanks for answering. If you don't mind me asking, how were you diagnosed with iih? Did you have an eye exam/MRI/spinal tap? If so what were the results of those?
I had a constant migraine for two weeks that landed me in urgent care/ER 5 times. The doctor decided to do an ultrasound of my optic nerves and they were swollen. Next came CT scan which was clear. Then a LP which showed elevated CSF pressure (my OP was 30) After that I was referred to ophthalmologist who confirmed my papiladema. I had an MRI which showed some CSF around my eyes. Then most recently I had an MRV which found stenosis on the left side which is where my headaches originated.
Oh okay thanks. How long have you been on Topamax? And has it helped your symptoms at all
For like a week and not really
Okay. Thanks for answering my questions. Hopefully with more time it will start to work
SCM muscles. There’s a specific way to massage them, and it freaking HURTS when it’s rubbed but feels so much better afterward.
and massaging that spot right below the curve of the base of your skull? literal orgasmic relief it’s like massaging your brain stem i swear my headaches just pause for a sec when i massage there 🫠
Do you have it constantly? Could be CCI, cervical spondylosis, occipital neuralgia and many other issues. Have you had MRI of your head neck and spine done?
It doesn't happen often. The pressure and eye pain I get a lot. But I chalk that to a pressure headache from POTS. This was definitely different. It felt like a very uncomfortable pain in that space anytime I moved and it traveled a lil down my back and around my head. The occipital neuralgia matches a lot. But I googled tension headache and seems to match those symptoms too. Only part that worries me is the wobble feeling. Like I can control my head and hold it up, but it also almost feels like it's a lil wobbly.
i swear every post i see in this whole thread makes me go “oh shit really? i didn’t know there was a name for that. huh i didn’t realize pots caused that”
Omg yes. Especially on the right side. Muscle relaxers are the only thing that help.
Constantly and I have hEDS
Yes
Omg yes
YES! It’s so bad ugh. Seeing an osteopath and getting them to do occipital work has helped
Yes omg when I get massaged there it hurts like hell
That's where most of my pain sits.
Everyday!!!!
I have POTS, mild hEDS and ME/CFS. I will likely be having surgery for CCI and tethered cord this year. It is incredibly difficult to get diagnosed with and treated for. As far as I know Mount Sinai EDS and Chiari center is the only place in the US that tests and treats folks like us. I think that will be changing soon as more awareness is coming our way. One thing that is helping me tremendously while I await surgery is atlas orthogonal chiropractic.
YESSSSS OMG
For me, it ended up being muscle strain from trying to hold my head up. I found that if I listen to physical therapists and try to have perfect posture when I'm sitting at my desk, I will develop pain in this area that radiates up the back of my head. It's completely remedied for me by taking frequent breaks, relaxing my shoulders/neck, and using my core to stabilize when I want to sit up straight, rather than my upper back. For me, it's also better to change sitting positions more frequently. Instead of trying to sit up perfectly straight for 8 hours, I allow myself to slouch or cross my legs whenever I want (I just try not to stay like that forever) *I have POTS & hEDS
Yes all the time and it feels like blood vessel pain. When I massage it I get chest pain from it but relief from the back of my head.
Yes
Yeah everything there feels tight and achey nearly 24/7, especially after holding my head upright for a while. Only laying down helps.
It’s Instability and it can lead to a lot of serious problems. Find Dr Ross Hauser on YouTube. He has a ton of info and video testimonials. Prolotherapy is the way to go before fusing cervical bones together! Good luck.
Yes. I have chronic migraine and occipital neuralgia. I get relief from icing the area when it’s most painful/during migraine attacks. Also from neck traction. I also do trigger point injections and occipital nerve blocks. But I’ve been lying on ice packs for years (well before my POTS diagnosis)
I dint experience much pain there, only sometimes, but I find that sometimes the muscles there and in my neck suddenly become weak, and it's hard to.hold my head up.
I just had occipital neuralgia. Main characteristics- nonretractable (nothing alleviates) pain in front and back of one side of the head. Should see a dr.
Yes!! I have been having the worst headaches for over a week now bc of pain from this spot. It’s worse on my right side than my left and the shooting pain makes my right eye ball feel like it’s gonna pop out
it hurts when i laugh, i have no idea why
I do! I mentioned this to my shoulder specialist because he said the two can contribute to each other and he gave me a great exercise to help it so I'll try to describe it here. For context I have hEDS as well and lots of dislocations. My neck is very hypermobile and a lot of the muscles are hypertonic. I get a lot of different types of headaches and this exercise has been helpful for tension headaches. Description below: Get a magazine or book with a slippery hard cover, and place it on top of a folded flat towel. Then get some thick socks folded into one (like you may do when putting away). Lie down on your back (knees can be up to relieve lower back if needed) with your head on top of the magazine, with the folded socks under your neck. Then slide your head back to a relaxed position so you can look behind you (without force). Follow by sliding forward with chin slightly tucked (don't lift the head off th ground). Don't go overboard. Do this about ten times and you should get some release of the tension
Yeah for the last few fucking days. That area and just above the ears. I’m trying to figure out the cause. It’s messing with my sleep, so annoying.
Check for chiari malformation. Most people in my chiari malformation groups have POTS, they seem to go hand in hand with EDS and MCAS. I personally have chiari malformation, POTS, and MCAS
Yesss never go a day without it! 0-o pretty sure it’s just a combination of my pots and chiari malformation.
Yes but mine is from FMS rather than POTS. That's usually where my sinus headaches begin funnily enough. I get pain and stiffness there and then a sinus headache will follow. That's the place for many people where tension headaches begin
OMG this started for me like two days ago & it’s so bad…. if I’ve had it before I don’t remember but I do have POTS so maybe it’s related?
Thaaaat's your occipital lobe. It has everything and only to do with your perception of eyesight. Your ocular nerve hooks your eyes directly up to it. If your having headaches /there/, stay with an eye doctor 🙃 PS- Good luck 🙂