Avatar universal

4 months of Shooting pain at the back of the head - Occipital Neuralgia??

This is a long post so sorry for how long it may be we are both at our wits end with this problem.

4 months ago, my other half woke up with a severe headache which started at the back of the head. She was laid in bed all day and the room had to be dark as she had problems looking at things in daylight. When she closed her eyes she said that she could see flashing "stars" and flashing colours along with pain at the back of the head - pressure seemed to ease the pain. Pain killers such as paracetamol, ibuprofen and co-coldamol didn't relieve the pain.

The pain eased a little the next day but that evening we checked at the back on the head and felt a lump, like a little lymph node (to this day this lump is still there) but the pain was coming from underneath this lump, the place at the back of the head where the skull dips down.

We rang the out of hours doctor and they suggested to got to A&E as soon as possible. The hospital suggested she had meningitis but after a test of the bloods it came back negative. After another test, it was aired that she may have a bleed on the brain.

She was admitted in to hospital for a few nights where they did a CT scan, a CT scan involving a liquid, they performed a lumbar puncher and took an x-ray of the chest. She was isolated as she may have been infectious - in the end this wasn't the case. All the tests came back clear but the doctors claimed the "headache" was now due to the lumbar puncher - again this wasn't the case. We (as a patient) had suggested a MRI but the relevant departments we're reluctant to give her a scan. After a week and a half of been in hospital, she was advised that the headache will subside after 20 days, 4 months later she is still suffering the same symptoms, We were at the point where we felt the doctors were clutching at straws and are still clutching at straws. After seeing the Dr, it was noted that she was admitted in to hospital with a thunderclap headache.

She went to see the eye doctor who has given the all clear with her sight.

When she left hospital she was given Topamax (i know this is a brand name, but i'm unsure what the drug is called - it was that long ago i've forgotten) to prevent the pain from coming back. The trouble is, the pain never disappeared for the pain to return so she went back to the local doctors where they put her on naproxen to be taken with Topamax. She was told she would be seen as an outpatient with the neuro dept.

A week later after visiting the local GP, the pain subsided and she felt great but things started to get worse, she started to struggle to stay awake and she often said "all i want to do is sleep" and spent the hours of not been at work asleep. Weeks like this went by and in the end she went back to the local GP (the same doctor) and they said why are you taking both naproxen and topamax so she explained that they had suggested to take both. She slowly weened herself off these drugs and the pain started to return so she is now in a position where she either "puts up with the pain" or is sedated to kill the pain.

The weeks ticked by and still no appointment came through to see the neuro dept. After many complaints to the hospital and finding out the notes hadn't been typed up she managed to get an appointment with neuro - around 10 - 12 weeks later after been discharged from hospital,

During this wait she tried all sorts to manage the pain and been back to the doctors and the hospital for pain relief but the process at the doctors or hospital each time is exactly the same, they end up giving her paracetamol and anti-inflammatory drugs which don't work. After taking no crap from the doctors, they eventually gave her oramorph which when taken (giving it 20mins of being taken) starts to kill the pain but also knocks her out, this seems like the only thing that kills the pain and the result is to sleep.

Now about 4 months on she says the pain is at the back of the head, to the left behind the ear and often gets shooting pains which shoot up to the top of the head and round to the temple. The pain can "move" round to the right side but the majority of the time its on the left hand side.

She is starting to "live" with the pain and doesn't want it to control her life so is putting in place things to control it until someone can give a true diagnosis of the problem - things such as ear plugs as loud sounds effect/bring on the pain or the pain can suddenly come on and she just has to deal with it, all she wants to do is to sleep as it seems to drain her.

An appointment came through to see the neuro dept and she explained everything to the Dr who gave her an injection into the occipital nerve. The Dr said this would ease the pain - it did for 5 mins but when we drove out of hospital the pain soon came back. The Dr also said he would get her booked in for a MRI scan.

So today she has been for an MRI scan - the scan lasted 20 mins and she came out shaking due to the loudness of the machine and required pain killers from A&E which she never got - she got to the 4 hour limit and she discharged her self. She took her own ear plugs but the machine operator said she would be ok with the ear defenders given to her, these "ear defenders" were glorified headphones, not the big ear defenders like work men use. If she had used her own earplugs along with these "ear defenders" she might have been ok.
She explained to me that as the machine scanned from right to left, she didn't experience any pain in the right hand side of her head but as soon as it got to half way cross her face and around to the left hand side of her head, the pain became severe.

Now its a case of waiting for the Dr to get back to her but she is nervous about what will come back - if anything.

After looking up symptoms on the net (which isn't the best thing do but what is when no one is helping) and talking to friends and family we may have come to the conclusion that she may have a problem with the occipital nerve or may have vestibular disorder - looking at the symptoms she ticks 90% of them.

Can anyone help give a better picture of this as we have had enough and just want to know what is up, the worse thing is not knowing.

3 Responses
Avatar universal
Had she seen a chiropractor? Ears, nose, throat specialist? I was first diagnosed with migraines, but then I was told maybe sinus infection. I do not have it severe, I have head tremors. Was told stress and anxiety. Try meditation and see a natural path as I am. Hope your results are nothing to be concerned about, and you have an answer soon.
Avatar universal
She hasn't seen a chiropractor but her Ears, Nose and Throat are all fine.
Avatar universal
No MRI results back as of yet but last week she ended up seeing an our of hours doctor who has prescribed her Tramadol, I guess this is the last pain killer on the list she can have.
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