Headache :: Possible Occipital Neuralgia?
Jan 26, 2016
For nearly two years now, I have had a severe pressure pain at the base of my skull on the right hand side of my head. It has steadily got worse, often flaring up whilst I have been in the gym, but now, like tonight, it has been throbbing/stabbing so badly that I am unable to sleep.
I have been back and forth to my doctor about 5 times so far and every time she has sent me for a blood test and concluded that I have low iron and to take supplements for that. My whole family are susceptible to iron deficiencies and I am a regular blood donor who has never been turned away, so I am confident low iron has nothing to do with it.
I was getting quite frightened that I could possible have an AVM in my head, or something putting pressure on my skull, so after much persuasion, my doctor referred me for a CT scan that came up 'normal'. She called me and suggested that I keep taking iron tablets as this must be the cause of my 'headaches'.
I do NOT have a 'headache'!! I keep reiterating to my doctor that it is a constant pressure in that area, sometimes my head even hurts to touch, but she is insistent that it is a headache. Occasionally I get a pain behind my right eye and over the top of my head, so I am getting a lot better at wearing my glasses any time that I am reading or studying. I have looked online at my symptoms, and I think it could possibly be occipital neuralgia - does anyone have symptoms like this? I have looked on other threads but there seem to be a lot of associated physical symptoms, for me it is just the head pain.
If you would believe it, my doctor actually asked me if I wear my hair up at night as she thought having my hair in a loose ponytail could be causing the pain. When I said I wanted a scan, she told me she would 'have to make something up' that sounded worse than what I told her because if she sends a person for a scan and it's not serious, she gets a slap on the wrist, as scans are expensive and she can only request three per month.
I am going back this week to discuss occipital neuralgia with her (let's hope she knows what it is!) and to insist on maybe an alternative treatment to injections or meds - maybe acupuncture?
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I have had horrible migraines for 10+ years which have become chronic daily headaches, manageable, but daily. A year ago I started having horrible pains at the base of my skull on the right side, some days it is a horrible stabbing pain, some days it is just a dull ache, but it is always there. I saw my neurologist in May about the pain since it just would not go away, she really had no ideas for me, she thought it might be a pinched nerve but said she really didn't know, she started me on nortriptyline, after being on the nortriptyline for 2 months and no change, she switched me to gabapentin, I am now taking 1200 mg 3 times a day. Some days I notice a difference, other days no change at all. My Neurologist said to stay on it and it should be helping. About 3 months ago the same type of pain started on the left side of my neck, about 1.5 inches below the base of my skull, closer to the middle by the spinal cord than the outside of the neck, it felt like a muscle knot that wouldn't go away, for the first few weeks, thinking it was a muscle knot, I was trying everything to get the knot to go away, after no relief with heat, massage, ice, I saw my neurologist and basically demanded that we get an MRI to see what was going on, she said she didn't think that was necessary, but ordered it anyway. She said my MRI looked totally fine and that i should still stay on the gabapentin, but no more help than that. After that I decided to find a different doctor. I started seeing a physiatrist, specializing in neurologic issues. My first appointment with him was fantastic, right away he said from everything i am describing i have occipital neuralgia. He explained what it was, and that it is a tricky thing to get under control, and he really couldn't say what is causing it. He said that the gabapentin is what he would prescribe, and it probably is helping, just not taking the pain away totally. He did prescribe a cream to apply to my neck, that he said he has great results with. He said he likes to try this first before doing any injections. It is a special compound cream that is specially made at a pharmacy he uses, its a mix of baclofen, gabapentin, ketorolac, and lidocaine. Its hard to tell if the cream is working, kind of like the gabapentin, sometimes it feels great, other times the pain is the same...
My true issue and reason for posting is, I have had a bad headache on the right side of my head, it moves from the right base of my neck, around my ear to my front temple area. Throughout the day it is in a different spot and I can pinpoint exactly where it is, it feels like someone is stabbing a knife right in that area, but it lasts for hours, throughout the day it does get a little "better", but i can always feel it, when it gets "better" it just feels like a massive pressure in that area. I have been a headache sufferer for as long as i can remember, but this headache is different than any headache I've ever had, and it going on day 19. I have tried everything; my many different headache medications (including an injection i give myself), I've taken a dose pack of steroids along with some anti nausea medication my neurologist gave me, i have gone to get a DHE treatment from my neurologist, i have gotten a toradol shot, and pretty much anything else i could think of, and nothing is kicking this headache. After doing lots and lots of online research, it leads me to believe that this is related to my occipital neuralgia, not a "normal" headache. Has anyone has a headache like this before? Do you think it is related to the occipital neuralgia, or something else? Does anyone have any ideas to make it go away. Also, if anyone has any tips on dealing/treating neck pain from occipital neuralgia.
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Ever since I've contracted HSV2 my life has been a living hell! I've been having sharp pains all over my body , leg pains, itching sensation all over my body, and last but not least pains in the back of my head and neck which sometimes radiates to my scalp. can herpes cause this to happen? If so is it life threatening or deadly?
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Does anyone have problems with occipital neuralgia? I have been having headaches everyday going on 7 months now that are dull and cause shooting head pain. It travels from my neck, to the top of my head, behind my ears, and behind my eyes. I have had MRI's and CT scans, and everything has come back normal. I have gone to PT for 4 months and had 2 nerve blocks. Nothing has given me relief. I went to a new doctor yesterday and he suggested that I may have occipital neuralgia. I am desperate to hear about what has helped other people and to hear about how everyone else copes with this/if it has gotten better.
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I had bad head and neck pains and lightheaded/dizzy days for about 18 months. Would last a day or two then feel fine in between. Held down a super full time career and ran a home really well. Was successful etc. But since xmas when I had a major headache/pain in the back lower part of one side of my head which started boxing day and went on and on I saw a neuro who thinks it is occipital neuralgia. On gabapentin and awaiting some procedures in theatre to help (I hope!) Anyone else have this out there?
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My friend has had diagnosed with occipital neuralgia. I am now living in my country of origin because I developed Parkinson at the age of 28. I kept receiving medication in the UK but opted out for DBS at this clinic abroad. They were so great that they offered me a job as I recovered. I told the doctors about my friend and they told her to come over for something called peripheral nerve surgery as they had a doctor visiting from the States. She initially exhausted all medication therapy and also nerve blocks, I think she used botox did not help her. Now she is migraine & headache free, happy, smiley person.
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I was told by my neurologist that's what I have which is fine I have a lot of the symptoms (burning in head, ache, sharp pains, etc.) however I would like to know if anyone else experiences a metallic taste with theirs?
Or bitter taste? Hard to explain the taste exactly but I noticed I only get this taste when my ON acts up.
My right cheek also feels numbish when it comes along. I have a nerve test for neuropathy in a few weeks (to see which kind I have) and have had CT/MRI of brain which was clear so the taste may be related to the neuropathy but it just seems weird it comes when the ON comes.
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I had this unit put in in Dem. 2013 but because of the lead trying to push through the back of my neck it had to be revised in August 2014. Was doing great until January 19, 2016 when the lead again pushed entirely through the skin on back of my neck. Now my insurance company will not approve for me to have another unit put back in. I was free 90% of the time with my unit in and now I am back to having so much pain in this area. It makes it very hard to have any quality of life except to wait around for another horrible burning pain that takes 3 mores days to overcome each time. Has anyone else had their insurance refuse this especially when it worked great?
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I have not officially been diagnosed with Occipital Neuralgia, but I am beginning to think that that is what I have been suffering from. I will be going back to a doctor soon (husband is military and we are currently getting ready to move to a new country...so it will be a few months before I settle and can get to specialist). In the meantime, I wanted some advice from others who deal with this. I am curious if this sounds like ON to you (I know you can't diagnose me...just curious if my story is similar to anyone else's) and what you do for the pain.
I am 25 years old right now. The headaches started when I was about 18 or 19 years old. It started on the right side of my head right at the base of my head and neck. I got them almost everyday. It was just a dull ache. Nothing awful, but definitely annoying enough that I would have to take advil (especially when I had class or work or something). As months went by and the pain continued, I started getting nervous that I had a tumor (I am a pretty big hypochondriac). I went to my doctor and he sent me to get a CT scan. Everything came back normal. The headaches continued. Went to a neurologist and got an MRI. Again everything came back normal. The headaches still continued. Went to physical therapy. Still not much improvement (granted, I don't practice the exercises he taught me very often). At this point, to be honest, I gave up hope. I took advil almost every day and learned to deal with the pain. I assumed it was just tension headaches. The pain has now gotten worse. The headaches are still only that one side of my head, but the pain spreads behind my ear and up to my right eye when it is at its worst. It feels like a deep ache and I constantly want to stretch or crack my neck or something (which doesn't work). I have a "knobble" that I use to massage the area. Applying a lot of pressure on it hurts...but in a good way. It sort of relieves the pain for the time being, but unless I take advil it will usually come right back and it will last for a few hours if I don't do anything.
I am a teacher and I obviously have to be at my best everyday. The pain makes it impossible, which is why I usually give in and take meds even though I KNOW I should not be taking it everyday. If I am just at home and have nothing to do, I try to massage the area and relax until it dies down.
Does this sound like it could be Occipital Neuralgia? Does anyone have any other idea of what it COULD be? I haven't had much help from doctors, so I sort of want to be armed with information the next time I go see one. I am sick of being told it's nothing when I am spending every day in pain.
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I had no idea what Excruciating Pain was. Does Radiofrequency Ablation in the facet joint nerve work?
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Four days ago I woke up with pretty bad pain on my Occipital bone one the right side.It felt bruised and hurt to touch.Then the pain was constant and throbbing.Now,four days later my neck on that side is tight and sore and have had a constant headache. Before this I was having pain on the same side in my face right near my ear as well as ear pain.I am SUPER dizzy too.I do have meniere's disease as well so I think this problem is aggravating the menieres and dizziness.
I saw my ENT for the ear and face pain and she noticed I had fluid in my ear and treated it,but said it did not look like an infection.My nose has been super stuffy as well.
Having meniere's I tend to hold my head stiff in fear of dizziness and I sleep propped on 4 pillows due to dizziness.After researching all I keep seeing is OCCIPITAL NEURALGIA 😳.I read it can be from neck issues or sometimes infection and the lymph nodes in the Occipital swell.I plan on calling the Dr tomorrow but does anyone have thoughts or similar symptoms? The pain is pretty bad. It feels just like I bumped my head.....Anyone?
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I'm 27y,male,weight 44kg. I've started to have headache after having a very tough semester at college 2 months back and it become worse 2 weeks back when i visited a neurologist who diagnosed me with "tension headache".
He prescribed me a cortisone injection in addition to 9 days of prednisolone (3 days 60mg, 3 days 40mg, 3 days 20mg).
The tension headache has gone, however, I still have headache on the sides of my head and behind my eyes, some pressure in my ears sometimes.
During my prednisolone course,I had severe depression, mood changes, anxiety (i couldn't sleep), sweating & lose of appetite. (I didn't have any history with these weird side effects)
Now, it's day 6 after stopping the prednisolone and i still have some depression/worried but i think i'm getting better day after the other.
My questions:
1. How long does it take for Prednisolone to clear out from my system?
2. Since tension headache has gone, why am I'm still having headache (sides of head,behind eyes & sometimes pressure in ears).
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I have a painful and migraine inducing bump on the left side of my Occipital bone, located an inch away from my ear. It's extremely painful and I have noticed some mood swings and it's driving me insane. Lately I've been having bad back pain too. I just want to know what are the possibilities or potential issue. It's very very painful and sore. It almost feels like a cyst by its hardness. I also am having a little case of the cold on top of this.
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I have had a recent ultrasound scan done on a hard lump on what seems to be my occipital lymph node, it doesn't move at all, it feels like bone and is painless, my lymph nodes on my neck have been swollen for 15 months and now in the past 2 weeks another lump has appeared on my shin bone, that lump is also solid and doesn't move however this one has become tender, i am being referred by the doctor who did my scan to have some "needlework" done i was wondering if this means a biopsy?
I also have other symptoms however i am currently being tested for lupus and my gp is querying antiphospholipid syndrome (hughes syndrome), my recent bloods tests have shown my cardiolipin antibodies as positive (i've had this test done 3 times within the past 3 months, positive every time) also my ESR was highlighted as 2mm (but the gp assured me this is normal)
I am a 24 year old female and also an epileptic and unable to take epilepsy medications due to severe allergic reactions which is now believed to be my immune system fighting off the medications, hence all the testing which is what has led up to this point. Another symptom when i deep breath i get a sharp pain in my diaphragm in the chest.
I really want to know if this could be lymphoma or if someone has had a similar experience as i've had no direct answers yet and i'm getting worried?
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If anyone else has had an Occipital Nerve Stimulator fitted and if it was a success. I had it fitted in March 2014 and had to have the wires adjusted as they were causing problems in my neck and not helping my migraines. I had about 5 week of some relief and my medication intake did reduce. However, in September of this year. I felt the machine stop working and had no sensation from it on one side of my head. Over the past week I am no longer able to bend my head over or reach my arms out without getting pain and a pulling sensation at the back of my neck. I have been sent for X-rays this week and am now waiting for the whole procedure carrying out again. I had high hope's on this operation helping. I understand it's not a cure, but I just need help with reducing the severity of my daily headaches/migraines. Has anyone else had equipment failure?
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Has anyone had facet joint injections c2, c3, or know how many years is safe to keeping burning the nerves? Or weak muscle and occipital pain to where to skull is out of place and you have to snap it back into place with swelling and pain. Or know anything about cervicalgia? Or steroids in the facet joints in the occipital, c1 joints? When does steroids injection start to soften the bones?
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I was driving on the highway last week. I started seeing flashing lights, shapes and lack focus, and disorientation. This has been something that randomly happens and I just sit down until it passes. After doing some research I know these to be either Auras or Simple Partial Seizures. This time on the highway I lost consciousness and woke up in an ambulance confused and soaking in urine. They suspected that I had a seizure while I was driving because of a bite on my tongue and history of seizures when I was a child. The hospital did a CT Scan which revealed something then an MRI the next day. The MRI showed that I have a 5cm cyst . That's bigger than a golf ball. I have my 1st appointment with a neurologist in a few days. Im so afraid...I don't know what to do. I've had to inform my job because I drive and travel everywhere for work. Its so hard to talk about it with people. I cant help but to think that I have had my last birthday.
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I have a few bumps on the base of my skull / top of my neck. One of them is large and the others are small. They are quite painful and swollen and have been there for a week or so. What could this be? Should I see a doctor about it?
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I'm 36 year old female, have had headaches x6 months along with an enlarged lymph node at base of skull just above hairline (occipital I think it's called). MRI was normal, ultrasound revealed enlarged lymph node, neurologist wanted to treat as headaches and sent me to ENT to evaluate enlarged lymph node, routine blood work just revealed low b12 (taking supplements now). Vision is good, already had eye exam. Usually over the counter meds treat any pain I have and they haven't relieved headaches at all, neurologist tried migraine meds which haven't helped either. ENT Dr. seems to think the headaches are causing the enlarged lymph node and wants to treat headaches to see if lymph node goes down any, but I can't help but think the node is causing the headaches because when I press on node it makes headache worse. (I know THEIR the Dr. and spent years on schooling, etc and specialize in this stuff but doesn't make since to me) The node itself isn't sore to touch, just worsens headache. So far the new meds from ENT isn't helping either, and am told my node is just about nickel size and they don't biopsy it until half dollar size. I'm tired of going from dr to dr when I have to work and my insurance is about to end, I just want answers, so any help is greatly appreciated to steer me in the right direction.
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For the past week, I've had a headache. It started out with being one of the worst headaches ever. I've been dizzy and lightheaded with ears ringing for the past week and a constant headache that varies in pain. Yesterday, I found my occipital node is swollen and if I push anywhere on it or on the left side of my head, I feel pressure and it hurts in my face all through the left side of my face and in my eye. I've been having awful muscle spasms in my neck and body, and now there is a constant dull pain still in the left side of my head that will not go away. I hear cracking and popping in my head often since it started too. Please help! This is killing me. What could it be? The headaches get to almost unbearable and sometimes it's just a dull agitation.
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I've been suffering from PHN for about 2 and half years. The pain is mostly around my eye, temple and forehead, sometimes the top of my head. Lately I've been finding that I get very drowsy after an "attack" of pain. Does anyone else ever get that? I can't work out if it's an effect of the pain or a side-effect of the medication I'm on (which is a mix of Cymbalta and Pregabalin).
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