Does anyone here have occipital neuralgia?

[rendean]

I have one episode of occipital neuralgia. Presently , I have just an extremely sore/tender spot at the nape of my neck - where my previous bout started.

If you have occipital neuralgia, could you please share your symptoms?

Thank you,
Ren

[Bjeanie]

I have severe problems with a specific spot at the base of my skull. When I have an episode it may lasts days and is aggravated the most by drinking but is bothersome all day. God help me if I drink soda or any other caffeinated beverages..Mine isn't a sore spot but a extremely painful burning, stabbing sensation. I have yet to find any relief.

[Cfarrington]

I was diagnosed with MS in 2010, but I am curious if I was misdiagnosed and I actually suffer from occipital neuralgia or even a combination of both. When I started seeing a chiropractor, I found out my brain stem was actually being crushed by the vertebra in my neck. So I've been researching occipital neuralgia to see if this could be the cause of my symptoms rather than MS.

[jgt98]

I have just found this post and feel relieved that others share these experiences, not that I am glad others are suffering, but that i am not crazy. I was diagnosed with MS ten years ago and do well but have been suffering from this ON for about 8 mths. The right side of my head is sensitive to touch..just washing your hair can bring tears.I get the ice pick behind the eye and very sensitive to light during an attack.  I also have numbness that starts at the back of my neck and radiates to the front..makes you wonder if your throat is closing up. Does anyone else experience this numbness associated with the ON. I chalk so much up to my MS that I am afraid I am gonna push something aside and it will be something else. Thanks for any response.

[plumalive]

I was diagnosed with a combination of Occipital Neuralgia and idiopathic Myoclonus in 2011, and under watch for increasing symptoms of MS.  The Occipital Neuralgia is essentially continuous and began in 2008 (I was 38 years old).  The severity of the pain ranges: I have many good days, and some bad days.  Good days = low, dull pain extending from behind the ear and wrapping up around the skull to a point behind the eyes.  Bad days = sharp, striking pain thrusting behind the ear (like someone is trying to force a hypodermic needle through the bone).  Some of the corresponding symptoms I have experienced include fatigue, nausea, trembling, spasms, and general discomfort throughout my body, as well as an increased frequency of migraines and periodic lack of coordination.  It often feels like I have continuous spurts of electrical discharge running from the brain and down the spine on bad days.  Concurrently, the neck area is often tender or uncomfortable, and I find myself rubbing the nape of my neck regularly attempting to massage the discomfort and tension away.  The Myoclonus is also a daily condition.  Myoclonus results in fatigue related jerks, mostly in the upper torso (i.e. neck, head, and shoulders).  These jerks usually cause an involuntary twitch most pronounced on the right side of my body.  I usually incur several of these per day now.  My Myoclonus symptoms have increased over time: when I was a youth, I maybe had one major jerk every six months.  By the time I was at University, it was about one per month.  By my early 30s, one per week.  Now in my 40s and have them daily, usually 2 to 6 per day - the more fatigued I am, the more frequent the jerks.  Severity of the jerks ranges - the sensation is akin to a flash of electricity discharging down the spine (the same sort of tingle one would get if they tried chewing on aluminum).  Jerks last a second at longest, but after the jerk, there is usually a brief episode of detachment (like a seizure, but I remain conscious and alert and cognitive, just sort of spacey and detached - like having a Nyquil hangover).  Other symptoms of both conditions include occasional insomnia, numbness, and tingling finger tips, toes, etc.  All the symptoms blur into those of MS, though after both an MRI and an EEG, MS was tentatively ruled out (on each test day I was essentially having a "good" day with no meaningful episodes).  I have noticed that viral infections are now more frequent and do impact the symptoms of both conditions.  HPV is farm more recurring and often manifests in distasteful places, as well as my fingers.    

[TexasChristy]

I was diagnosed with Occipital Neuralgia in 1996. I was having chronic, daily headaches & they were not responding to any of the typical migraine medications. I went to a pain/headache specialist who said that I had O.N. He did several nerve blocks in the two nerves at the base of my neck, but I never got more than 1 day of relief.

In 2005, I had severe eye pain for almost a month. I went to several eye doctors as well as my headache doctor & they all said that the condition in my eye was called Optic Neuritis & it was most commonly a presentation of Multiple Sclerosis. I had an MRI done & the conclusion was "signs show a possibility of Multiple Sclerosis" but I wasn't officially diagnosed. Then in 2008, I had an attack of vertigo that lasted for 2 weeks. I went to my neurologist & they did another MRI. That one showed definitively that I did have numerous MS lesions. I was classified as Relapsing Remitting MS.

I have tried several of the medications for nerve pain & 2 of the MS injectable medications (Copaxone & BetaSeron) & had my symptoms worsen while on them.

For the past 3 years my only treatment for the O.N. pain & the MS pain is Norco & Xanaflex (muscle relaxer). I still have daily headaches but the Norco keeps it manageable. About 2 times a month I will have a 10+ headache that will lay me up for a day.

I also have Fibromyalgia, so all three of these diseases mirror each others symptoms. My system is different in that standard Fibro or O.N. treatments do not work. I treat my symptoms from day to day & hope for the best. That's about all I can do.

I wish you the best of luck with your illnesses.

Christy from Texas

[anon07072023]

I know this an old post, but I just found it...
Finally, people have experienced what I have.  Mine started maybe a year and a half or two years ago.

When I have it, the pain is so severe, it totally stops me in my tracks and it feels like I'm going to black out.  
I'd almost compare it to being hit by lightning or someone jamming a spear into the back of my head.  

Mine starts at the top of my neck on the right side, right below the base of my head. Then it fans up the right back side of my head.  Now lately I've been getting the pain behind my right eye.

I never knew if it was related to MS or not.  ???

Thanks,
Kelly

[rendean]

If you look under the section with Lu and Quix's pics that say Top Answers, there is an explanation about the "badges" (stars).   It's to recognize those that contribute a  lot to the forum and to encourages others to participate.

The "best answer" option appears to the person who answered the question the best in the opinion of the question poster.

I can total empathize with the middle of the night awakenings due to face pain and now head pain. It's not fun!

ren

[biowham]

Ren--I should mention that I also have horrible face pain--it can wake me up at night and plagues me during the day. This usually lasts a day or two, then it goes away. It's not sinuses or allergies...it's just really intense pain that's not too responsive to IB. I'm sure I walk around with a terrible grimace on my face when it's going on. The part I hate the most is how it wakes me at night. Did that to me last night, in fact. Ugh.

Bio

P.S.
What's with the little stars and the "best answer" stuff? Kind of strange.

[rendean]

Thank you for your input. I am sorry you have this symptom. It is absolutely miserable . I used to take Lyrica  but it caused even more cog fog do I went of of it :-(. It did great for the pain but couldn't function.

Funny, I used the description of a baseball bat with DH and he just laughed and said it couldn't be that bad (you know men if they can see it, it doesn't exist, my apologies to the men on the forum).

Glad to know Bio, Anna and I aren't the only ones...you know how misery loves company.

Hope all is going well for you,
Ren

[steph74]

Oh, forgot to mention that the back of my head will get really tender, too--it does hurt to lay my head on the pillow.  But again, the meds have really helped with that.  (Still can't put the left side of my face on the pillow because of the TN, but at least I can lay down on my back!)

[steph74]

I have it, too.  My symptoms are severe (one sided, most often on the left for me) pain at the base of my skull.  I get intense "shocks" that make me feel like I've been hit in the back of the head with a baseball bat.  The whole left side of my scalp has "hyperaethesia" (sp?) where I feel too much and not correctly (a pin-***** feels like a circle of sensation).

I also have TN, so it's hard to differentiate certain issues.  I have had episodes of *severe* pain behind my left eye--can't tell if it's from the occipital neuralgia or the TN.

No migraine or pain medicine helped until I started taking neurontin.  After working up to 300 mg 6 x/day, my pain was pretty well controlled but they switched me to Lyrica to reduce the number of doses.  Unfortunately, I had to increase my dosage of that, too, so I take 100 mg 3x/day.

The pain med helps tremendously.  I still get some random pains and a lot of tingling, but I can deal with it.

Stephanie

[Wobbly]

I'm hangin in there... back on antibiotics as the pain came back on the right side of my face when I finished the last antibiotics??  but other then that.. hangin in.

wobbly

[rendean]

I have the atypical face pain as well. This new little bugger is like being stabbed in the back of the head with axe on some occasions, others it just this horrific jolts of pain that stop all movement by me until it passes.

Poor Bio suffers as well. I haven't gotten many ansers form my docs , just pills, which do help.

Thanks for the feel better wishes!

How are doing these days?

Take care,
Ren

[Wobbly]

hi there... I don't think I suffer from that one... I'm told my is Atypical Facial Pain.. right side of my face.. from side higher then my ear, down to my cheek, and lower jaw.. right to the teeth.. only the right side of my teeth, upper and lower get sore?  

hope you feel better soon
take care
wobbly

[rendean]

You're welcome! Sorry you are suffering with this lovely ailment too. It stinks because you are in agony and no one can see "it".

One of my neuros gave me "rescue" Decadron to take for 3 days only. 2mg twice a day for 3 days. It works well for me. I have used it 3 times now and it makes it bearable and finally makes it go away until it decides to pop back up on a whim.

I hope you can get some relief from your pain.

Best wishes.
Ren

[ack65]

Hi Ren,

I just wanted to thank you for the info.  I read your post the other day and then researched occipital neuralgia and was stunned to see there was a condition that fits what I have been complaining to my doctor about since January.  She was thinking migraine, which I also have but I told her this was different the pain comes from my neck up and then behind my eyes with light sensitivity and has been there on and off for the last 3 months.  I also get the stabbing pains in back of the head, top of the head and right eye.  My teeth are also sending pain signals,  I had both checked and they are all fine.  My neck is so tender, stiff and sore I can barely move it.and my chin feels like I have dental freezing.  I'm not diagnosed with ms but have my follow up with my neuro next week. - Anna

[rendean]

Mine is back but presented differently this time with the tender spot. Also the parts of my face (along upper teeth .etc, front of ear,etc.) that flare in TN are tender.  I was wondering if the IV Solu-Medrol 3+ weeks ago kept the occipital neuralgia from becoming full blow.

Anyway, I was at my PCP for another issue and he okayed the 3 day Decadron burst, which after day one is making a difference. I can lay my head on the pillow without wincing.

Sorry to hear yours occurs so frequently. Mine usually acts like yours with short bursts of breath-taking pain that freezes any movement until it passes. I cannot figure a trigger for mine either. Have had 3 docs label it occipital neuraglia and basically the answer I got was , "Well, you do have MS." Not a very encouraging or explanatory statement.

Thanks and sending wishes for yours to disappear,
Ren

[HVAC]

bump

[rendean]

bump, please ...this slid onto page 2