Possible occipital neuralgia?

Brain and nerves
1

Hi, 

I am new to the site so please bear with me. 

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 ben 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 reitereating 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 accupuncture? 

Any advice would be appreciated, she just does not understand.  This pain is getting worse and worse. 

Thank you - apologies for such a long thread.

T x  

1 Like
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Hang in there, I know it's frustrating! Glad you have the CT scan....my advice would be to find a neurologist and have the scan released to them to look at. The first doc at the e.r. Thought my scan looked "normal" and told me to get a new pillow but other docs saw a large cyst in my brain I am about to have taken out!  My cat scan was kind of 3D and the top layer of the scan looked ok but as my neurosurgeon went layer by layer on the computer all the black fluid showed. It may just take a specialist knowing what to look for with your symptoms. Wish you all the best.

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Thank you for replying, it is so frustrating. I know I'm not making it up!! The doctor said 'Do you think you have something serious?' and I just thought 'Well, you're the doctor....' I will be bold and ask for a second opinion.

I am sorry to hear you have had such an awful experience but it is reassuring to have some more advice. I really hope your surgery goes well.

Tx

4

I have been having the same symptoms for three days!!I can not even touch my occipatal bone on the right side and it feels swollen.Almost like I bumped it.It travels doen my neck and I have frontal headaches?The back of my head aches constantly.On top of it all I am super dizzy.I do have menieres disease and I think this aggrivates it. Behind my eye and my face hurt on that side too.I was told weeks ago that I had fluid in my ear on that side and treated.Im stumped and going to make an appointment with a neurologist.

5

That sounds painful!!  Good for you making another appt - I went to he dr again yesterday who is still insisting it is an iron deficiency - when I mentioned occipital neuralgia as a POSSIBLE cause she said 'That's to do with your neck' (!!!) and refused to refer me to a neurologist - she is refrring me to Orthapaedics instead as she said a neurologist 'wouldn't deal with nerves or muscle/skeletal symptoms'.  Oh dear, it seems as though she is massively wasting my time and the money of the NHS!! 

6

I know this is old but I have exactly the same thing! Finally after two weeks of daily headaches I went to the doctor. It's funny that your doctor thinks this is not O. N. Because that's the first thing that my doctor thought it was when I explained my headaches...you should get a second opinion. I was put on Neurontin for two weeks to stop the inflammation in the nerve....it is beginning to help with the headaches!

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Oh I forgot to mention O. N. Is pertaining to the nerve running up the back base of your head...not your neck...I'm fact u dont have much pain in my neck....I'm not sure why you weren't taken more seriously...it's a shame when we know our bodies but no one listens....I hope you have found relief and a better doctor!

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Hi Tinks

My Mum had similar issues and it has taken 4 years to now be in a position to have surgery - she was diagnosed with a rare AVM where the nevk and thorax meet.

The GP sent her for scans but we have literally had to beg for others to be carried out and heard a lot of nonsense along rhe way.

Mum was admitted via A&E as she could barely walk in January.

She saw many Doctors at the hospital who had no idea, who were not interested. One Neurologist said she had migraine - never once did they carry out any neurological tests.

We eventually paid privately to see a neurosurgeon - he was appalled at Mum's condition and wrote a letter telling the GP that Mum needed to be seen by a specialist. That was the best £260 ever spent!

We went to the National Hospital in Queens Square who have been great.

It's been a long, painful, emotional journey but we got there - well with a diagnosis after so many tests, scans ...don't give up!!! We all know when there is something wrong and your GP should be referring you - don't waste time in getting to a specialist.

All the best. Tracey

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I jave just seen this post now!!! Your GP is talking utter utter rubbish!!! What does ypur GP think a neurologist does??!!

Look at the websire for the NHNN at Queens Squate - I called my Mum's GP and asked for the referral but at first she said she wasn't sure if she could refer but I had already done my homework and told her there was a section about advice for GPs!!

Don't give up - change GPs if you have to!

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Thank you so much. I finally got a neuro appt but it has since been cancelled, I don't know why. My head pain is a lot better and I don't have as many episodes, but I'm determined to get seen! I might look into going private.

Thanks again, glad your mum got the help she needs. x

11

Thank you, I'm sorry I didn't reply, I haven't been on for a while. It's been really frustrating. I got a neuro appt that has since been cancelled for no reason so I might wait for another one or go private. I've changed jobs and am not under as much pressure, that seems to have helped but I'm still wanting to know what it is/was. Thank you for all your help! x

12

Hi

i have the same thing! my head been hurting for about 6 months are more, i would get these stabbing pain and burning in the occupital area of my head and it will move to the front sometime and my right eye would hurt and above my eye! the pain is really bad most of the time! the dr are not much help! i had to research all my symptoms!They were treating me for high blood pressure because one of the symptoms is when the the On start it would shoot my bp up to some crazy numbers! insane!! i took mri of my head nothing but my the mri of my neck had a bulging disk so the nurologist say that could be causing the pain! its very depressing and not much plp to talk to about it! Thx for sharing! i would like to here back from you!

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Tx
hi there. i was diagnosed with migraine for years by my GP and prescribed sumatriptan which did work but caused side effects. i suffered the exact same symptoms almost nightly between the hours of 2 am to 7 am and had to take a tablet or id continue with intense pain. i started to notice i also had a painful neck and back of my head along with pain above my right eye. After many longs years and no help from my GP i went privately to see a neurologist. As soon as i explained my symptoms he said he thought i had Occipital Neuralgia. options were Amyltriptalin ( id tried but it spaced me out) or occipital nerve block injections. i chose the injections and they do help a bit but i have to have them 6 weekly and its working out costly. im going back next week to discuss it with my neurologist. From January I’ m going on NHS so this will help. As an added bit of info i have a really bad neck, back and shoulders from years of hairdressing. The neurologist thinks this is the cause. Good luck

14

I have very similar symptoms. I have Occipital Neuralgia caused 7 years ago by neck/ head trauma; occipital nerves got damaged The doctor should give you Lidocaine/ similar injections in your occipital nerve channels. If it stops your head pain it is most likely ON.
It is death warmed up. A nightmare.
Please let me know - I can share many signs, experiences with you if you have ON. Take care.

Best
N

15

Hello everyone, I saw this topic on this forum. I know it’s an old topic but maybe someone can help me with some tips. I think I have Occipital Neuralgia also. Since 6 months I have a rare pain on the right side of my head. The pain is mainly on the right skull above / behind the ear region. When I touch the region with my hand it also hurts and feels like a bruise. Also when I’m lying on a pillow it hurts. Sometimes I wake up in the middle of the night with an awesome pain. When I’m turning my head it also hurts very much. And sometimes I get shooting pains during the day. If someone is hurting the spot in my head with a knife. I have been to the doctor en neuro specialist. I have got a CT scan to rule out some things but that scan was normal. But since a week I am also a bit dizzy and nauseous. Are all these symptoms related to occipital Neuralgia and familiar with you ? Thank you in advance.

16

Hi there.
I’m really hoping you see this.
I had all the Occipital neuralgia symptoms!
8 months in now.
Its constant.
Had 2 mri scans and a CAT scan which don’t show anything sinister.
It has shown a bulging disk and partially collapsed disc in my neck.
Nothing helps with the pain not even gabapentin!
Any help or advice would be greatfully received on what to do.
Many thanks. Darren.