Occipital Neuralgia

jemmouse

DIS Veteran
Joined
Jan 10, 2010
I recently just got diagnosed with this. I had a headache but localized to the area behind my ear, going into neck. So I first went to General Practioner he just prescribed me Flexeril. Well it didn't go away. So i made an appointment with a Head/Neck Surgeon. He diagnosed it instantly as Occipital Neuralgia. I was like HUH?:confused3 He then rubbed the area and asked if it felt better, and it did. SO then he said he wanted to do a cortisone injection. Now I have had these in my feet, and knees BUT when he said HEAD, I thought I was gonna run out of that chair and to my car. But I said do it, because that pain just wasn't easing up and starting to consume me where all I wanted to do was sleep. ANd hello I am a mom and that is not possible, plus not a good way to live your life. SO he did it, and really it didn't hurt. I just didn't like the noises it made when the shot hit the nerve, kind of crunchy. Well after the shot the DIZZINESS stopped and yes I had that also. I felt great when I got home. The only side effects I had were that I couldn't sleep the ENTIRE NIGHT :scared1: The next morning the pain was back but not nearly as bad. The doctor did say that some people need these in a series of three. SO I talked to the doctor on Friday and he told me to come in tomorrow, Monday. He also prescribed me pain meds with and without codeine, and to take the Flexeril in between the headache meds. Also he told me to get a massage to loosen the muscles. I am thinking that i don't need another shot yet. It has lessened but now it is real sore to the touch. I am going to go get a massage hopefully tomorrow or Monday and see if that helps. And then go back to doctor on Thursday.

Anyone ever have this done, any suggestions, as to what form of treatment you had...When I stress out it goes right to my neck and well now my head. The doctor didn't do any other tests. I did have a CT of my sinuses just days prior and he got results and said it was clear and I just finished with my yearly Blood work and that was all good. SO well sometimes when I get something I always think bad things but do believe this is just what he says because it is so localized, kind of strange how it just hurts in one spot.

Again any help or tips would be greatly appreciated. I just wonder when or how long does this take to completely go away, and am i now going to be prone to these?
 
Im so sorry you are going thru all this pain.
I had the same thing go on years ago. I was not a happy camper, the shots did go well, with lots of sleep too.
One thing I can totally agree on...massage! As a massage therapist, I can't tell you how many clients come in with head aches and leave with less pain...and less sinus problems.
I had great "hands on" teachers who taught me 2 wonderful releases:
1. Occipital release and 2. Sinus release. I wish I was near you to help.
Find a very good massage therapist and ask if they can do thoses releases.:thumbsup2

Good luck and hope you get better soon:hug:

Annie:flower3:
 
Apparently I have it..but my Dr never used those terms and never suggested I pursue much in the way of treatment aside from some muscle relaxers and NSAIDs. It was discovered years ago (10+) so it's possible treatment suggestions have changed..I have not gone back to the Dr since it was diagnosed way back when and I manage it with Myoflex (like Bengay but not stinky) and Aleve. I did pursue physical therapy for quite a while that helped with the nerve being pinched.
 
Yes, in fact I have been dealing with this since last February. I feel for you! :( I have been on a slew of different meds and have had several tests, sinus CT, MRI of my head and the last was a neck CT, but my insurance won't pay for a MRI of my neck unless I do another 6 weeks of PT, but I've been through PT twice now.

I FINALLY got a cortisone shot mid Sept. It helped somewhat, but wore off about 3 weeks ago. I'm due back for another shot next week. And I agree, the sound made me woozy. :laughing: So far what works best for me is Toradol. It's a NSAID. They will only give you 20 per month and supposedly you are not suppose to take it for more than 5 days in a row, but I've been on it since August. I know I can't just keep taking it, but it's the only think that has worked so far.

Keep us updated. Maybe we can help each other get through this. It's hell. :(
 


Thanks for the thoughts and suggestions. I cancelled my appointment today and rescheduled it for Thursday. On Wednesday I go for a massage. It still hurts but not nearly like it did. I actually forgot about it for about a half hour today:cool1:...Went trick or treating with my son, and i noticed it, but kept going.
I am gonna ask my doctor if i could try some physical therapy for it. I already goto one for my foot/knee so hey why not throw in the head. No seriously I have heard that the electric stims and the deep massage would help. AN hey i will try anything.
What are some of the releases that you are referencing? Do you think most massage therapists know of them?
 
When I have a flareup, I use a combination of Aleve, dark lighting (no sun or bright lights), cover the eyes, no noise and ice pack the neck (usually a bag of peas or corn, because they conform easier).

Once my skin is very very cold, I have DH or DD rub the base of my skull where I "knot" up. They have to stroke downward very firmly.

Once my skin starts warming, I have to reice it. I usually fall asleep for a while, wake up and start the whole thing over again. Takes about 3-4 hours, but then all the pain/nausea/dizziness is gone!

I avoid the cortisone shots, just because I have hydrocortisone cream for my psorasis and I'm worried about "too much", kwim?
 
HI there, I too was diagnosed with occipital neuralgia almost 4 years ago....mine started with a headache in the back of my head that started and never went away.... I have at least a constant ache in the back of my head (on the right side) and on my bad days it shoots over my head into what feels like an ice pick in my right eye.... I am on pain meds and a muscle relaxer, but we are trying to get me off the meds so we can have babies....so they are doing a series of cryo (freezing of the nerve) injections and my second of possibly 3 injections is in December....I am glad that you started this thread so now we have a few that suffer with us (unfortunately) that we can talk to that can relate....
 


Hi all...I did the massage today. ANd yes it did help but when i was finished and went to get up was i ever DIZZY! Now i have had massages before but never ever have i felt like that. Now though it seems as if the pain in the back of my head lowered a bit. You know this is just so frustrating!:scared1: I am tired of taking medicine that makes me feel out of it. I have noticed tonight that some of the dizzy feeling has come back. ANyone else out there get DIZZY???
My appointment is tomorrow at 11;00...I know you can only get 3 of these shots in a 6 month time frame, and I am not sure I want to use it up already. I never had a Head CT or MRI. All I had was a CT of the Sinusses.

I agree with one of the other posters, the headache medicine the doctor gve me does nothing. The Flexeril knocks me out so who knows if that works as well.
I personally wonder if this came on by and dont laugh by always looking down. I am a SAHM and I am on my iPhone alot playing Word with Friends, I know sounds bad but I am being truthful. Then I am on computer alot. Who knows...
The massage therapist did say my right side of neck and shoulder was extrememly tight, and my issue is on the right side of head. I also have noticed what some of you say it is nice to turn the lights off. ANd I am also tired more now, but that could be from the meds.

I will let you know what the doctor says tomorrow. But I have to say, I havent had what some of you say about the ice pick on the eye. My heart goes out to you. This hurts and again its one of those things where we look fine so some people just dont understand and act like suck it up.

Well going to bed, have my moist heat wrapped around my neck, going for the Flexeril, and until the morning...Goodnight and I hope some of you get relief tonight!:cloud9:
 
I personally would be going for cranio-sacral therapy, acupuncture, and good gentle chiropractic. Sounds right up their alley, rather than dealing with steroid shots and heavy medications.
 
Hi all...I did the massage today. ANd yes it did help but when i was finished and went to get up was i ever DIZZY! Now i have had massages before but never ever have i felt like that. Now though it seems as if the pain in the back of my head lowered a bit. You know this is just so frustrating!:scared1: I am tired of taking medicine that makes me feel out of it. I have noticed tonight that some of the dizzy feeling has come back. ANyone else out there get DIZZY???
My appointment is tomorrow at 11;00...I know you can only get 3 of these shots in a 6 month time frame, and I am not sure I want to use it up already. I never had a Head CT or MRI. All I had was a CT of the Sinusses.

I agree with one of the other posters, the headache medicine the doctor gve me does nothing. The Flexeril knocks me out so who knows if that works as well.
I personally wonder if this came on by and dont laugh by always looking down. I am a SAHM and I am on my iPhone alot playing Word with Friends, I know sounds bad but I am being truthful. Then I am on computer alot. Who knows...
The massage therapist did say my right side of neck and shoulder was extrememly tight, and my issue is on the right side of head. I also have noticed what some of you say it is nice to turn the lights off. ANd I am also tired more now, but that could be from the meds.

I will let you know what the doctor says tomorrow. But I have to say, I havent had what some of you say about the ice pick on the eye. My heart goes out to you. This hurts and again its one of those things where we look fine so some people just dont understand and act like suck it up.

Well going to bed, have my moist heat wrapped around my neck, going for the Flexeril, and until the morning...Goodnight and I hope some of you get relief tonight!:cloud9:

I have the same issue on the same side of my head! I get dizzy too. My doctor gave me two sets of shots over a month long period the first time it happened (about 4 years ago) and I was good for a while. I can feel it when it starts up and I have had a couple of single shots since then but otherwise have been OK. One thing that really helped me was investing in some GOOD pillows that really support my head and neck while sleeping. I sleep almost exclusively on my right side and my pain was always worse in the mornings. Now I have no pain upon waking. :thumbsup2
 
I personally would be going for cranio-sacral therapy, acupuncture, and good gentle chiropractic. Sounds right up their alley, rather than dealing with steroid shots and heavy medications.

I asked my doctor about these and he said that chiropractic was an absolute no-no, I also asked about acupuncture and he laughed about it, he did say light massage is OK.
 
Well I had my second of possible 3 cryo (freezing of the nerve) yesterday and I hope I get improvement last time, so I hope it goes completely away this time!!! Please send pixie dust and good luck my way...

OP and everyone else how are you feeling? Does the weather make it worse?
 
Trying to revive this thread in case any of you are still out there....I came down with Occipital neuralgia after an attack one night. I had put 18k miles on my Prius in one month (3 teenagers, nuff said) and didn't realize the driving/my position in driving would lead to muscle strain on my left side of my neck...for a few weeks I had pain as I was driving but I just knocked it up to fatigue/driving strain..had no clue the strain would
off my lesser occipital nerve and wake me at 2am with excruciating pain...it was so pinpointed and direct I thought I was having a stroke. It went away in 20-30 minutes and I thought that was the end of it...bwahahaha...
I had the debilitating headaches that felt like a balloon was going to explode in my head...then shooting heat/electrical tingles throughout my head...MRI, CT, MRA showed I'm perfectly healthy...so did blood work...ER doc poo pooed me and said I had a headache I'd be better in 2 days...this was after suffering for 3 weeks...
I'm curious how all of you are doing...I am really trying to avoid any medications, during the peak of the pain I was popping aspiring/aleve like candy...now I can go a few days without anything but it's tough...I do feel as if it's getting better, but never goes away.
My question is, did the nerve blocks help? I just don't want to aggravate it after I've tried so hard to let it 'heal' ...if I just had an idea of how long to expect the cells to heal...I could manage better. And with such acute damage to the 'lesser' occipital nerve (so glad it wasn't the greater!) does that ever heal? Do nerves heal from being attacked by swollen muscles? Hope you all are doing better! Disboards has been a friend to me for many years, so hopeful that someone here has some help :)
Supposed to see neurologist this next week, I just want to be filled with knowledge before accepting his recommendations...the other 3 doctors wanted to dope me up with Topomax and pain killers...I just can't go that route...it's been a hellish 6 weeks but I can say my pain is down from 80% of the day to about 40% of the day...that has to be something!

Thanks!!
 
I personally would be going for cranio-sacral therapy, acupuncture, and good gentle chiropractic. Sounds right up their alley, rather than dealing with steroid shots and heavy medications.

This!
 
My DIL had it (I say "had" because she doesn't anymore). She suffered for 4 years after a botched medical procedure. They tried nerve blocks and botox which gave her very temporary relief. She had nerve decompression surgery about 6 months ago and it's been nothing short of a miracle. She was the perfect candidate for the surgery. I don't know if any of you know it but there are a couple of FB groups and a website: http://www.mdjunction.com/forums/occipital-neuralgia-discussions

They are both great resources. My DIL had trouble functioning and couldn't work full time. She's now looking for a full time job and has her life back.

BTW, if your nerves really are compressed they probably won't just "heal". They could very well be inbedded in the muscle tissue and have constant pressure on them that won't just stop.
 
My DIL had it (I say "had" because she doesn't anymore). She suffered for 4 years after a botched medical procedure. They tried nerve blocks and botox which gave her very temporary relief. She had nerve decompression surgery about 6 months ago and it's been nothing short of a miracle. She was the perfect candidate for the surgery. I don't know if any of you know it but there are a couple of FB groups and a website: http://www.mdjunction.com/forums/occipital-neuralgia-discussions

They are both great resources. My DIL had trouble functioning and couldn't work full time. She's now looking for a full time job and has her life back.

BTW, if your nerves really are compressed they probably won't just "heal". They could very well be inbedded in the muscle tissue and have constant pressure on them that won't just stop.
''

That is exactly how it felt for 6 weeks! I was so frustrated doctors just wanted to placate my symptoms with drugs and not find out what was wrong..if MRI, MRA, CT are negative they cry foul...and do nothing...so thankful I finally got a diagnosis that makes sense..Just in the past week I feel like I'm 70% of who I was before this all started, for the most I was barely 20%...could not function, all I could do to move during the day and not collapse from fatigue/pain throughout the day...I have slept a great deal...I think this has helped my muscles relax in my neck..I will keep the decompression surgery in mind!! Thanks so much and so thrilled your daughter has her life back! Amen!
 
lmhall2000 I know this thread is old but did you ever receive a nerve block that helped your occipital neuralgia? I have the same symptoms you did and been dealing with it for a year. I'm not near as bad as I used to be but I finally saw a neurology surgeon and he has suggested a nerve block. I just don't want to go "backwards" as it seems like it's getting better (very slowly). Thanks.
 
lmhall2000 I know this thread is old but did you ever receive a nerve block that helped your occipital neuralgia? I have the same symptoms you did and been dealing with it for a year. I'm not near as bad as I used to be but I finally saw a neurology surgeon and he has suggested a nerve block. I just don't want to go "backwards" as it seems like it's getting better (very slowly). Thanks.
Had this going on two years now. Does anyone else have it as a pattern? Mine are every 5 days , rarely changes and lasts 12-22 hrs. Nothing helps. Also have tinnitus with it. Wondering if anyone else has anything similar. Thanks
 
As I mentioned above my DIL had decompression surgery in early 2014 which gave her 18 months of complete relief. Then, the symptoms came back so she had a second surgery which basically cuts the nerves so they don't send the signal about 18 months ago and that gave her complete numbness over the back of her head and behind her ears, but she doesn't care. She's doing great and rarely has a headache of any kind anymore. The second surgery is required in some people. Insurance didn't cover either surgery, but they were worth paying out of pocket (about $14,000 per procedure). So, just be aware most insurance will say no, but they're willing to pay for multiple other procedures from botox to drugs (oral and injectible) which add up on their own.

Just an FYI, DDIL had a major attack the first time it happened and very slowly got a bit better, but it does come back. I think everyone has a pattern. Hers was a major attack, several months of slowly getting a little better, then it coming back again after a year or so.
 
Had this going on two years now. Does anyone else have it as a pattern? Mine are every 5 days , rarely changes and lasts 12-22 hrs. Nothing helps. Also have tinnitus with it. Wondering if anyone else has anything similar. Thanks
 

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