Possible occipital neuralgia?
Posted , 12 users are following.
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
0 likes, 15 replies
Bubbie Tinks14
Posted
Tinks14 Bubbie
Posted
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
kelly1014 Tinks14
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Tinks14 kelly1014
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tracey71146 Tinks14
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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!
sarahbell8 Tinks14
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sarahbell8
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Tinks14 sarahbell8
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tracey71146 Tinks14
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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
Tinks14 tracey71146
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Thanks again, glad your mum got the help she needs. x
inga76587 Tinks14
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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!
jane81034 Tinks14
Posted
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
cornelius06091 Tinks14
Posted
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
kees08736 cornelius06091
Posted
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.
darren16994 kees08736
Posted
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.