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Cervical instability as possible cause

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#1 Sat, 17/12/2022 - 18:48
Last seen: 1 year 6 months ago
Joined: 07/12/2022 - 08:05

Cervical instability as possible cause

Hi everyone

I am a new member. In 2015 i was diagnosed with episodic cluster headaches, migraines, cervicogenic headaches and ironically, medication overuse headaches as well. I also was diagnosed with fibromyalgia. The cluster headaches started in August of 2008, so it took 7 years to get a diagnosis. I am a 60 year old woman who has had three accidents resulting in head injuries: I ski-ed into a tree on a school holiday and knocked out teeth and had stitches in my head, a year later I had a motorbike accident and went over the bonnet of a thoughtless mini, knocking out my two new teeth and breaking my jaw, and then in 2015 I fell backwards down the stairs and cut my head on the corner of the radiator which got me 15 staples and a new type of headache, the migraine.!

I have been becoming progressively more ill. This summer I had to stop work as I developed chronic fatigue to go with the rest. I wake with a headache every morning which on a good day dissipates as i start moving, i am in a cluster attack phase for the last 5 weeks with the occasional day-long migraine thrown in. Zolmitriptan spray works for me for both cluster headaches and migraines but according to the blah should only be used for 10 days out of 30. I have recently had an MRI of my head and am awaiting the results. I tried to get the GP to ask for the neck instead of the head, but he said to start with the head! When the results come through he will then refer me to a neurologist.

Yesterday online I came across the term cervical instability. This is something that is much researched, and treated,  in the States, but not in the UK as far as i can see. According to the research it can cause all kinds of headaches, fibromyalgia, chronic fatigue, difficulties with gait and balance, cognitive impairment and memory problems (all of which are boxes I can tick).

Do any other members feel that their headaches are the result of head and/or neck trauma? And if so, what have you found works for you? Have you found magical osteopaths or fabulous physiotherapists? I live in West Wales and there is a shortage of neurologists and there are no headache specialists, apparently. I have to think outside of the box and push for something different to happen. Pharmaceutical solutions all seem to come with a price to be paid. Last years price was ending up in A&E with a dicky gall bladder as the Naproxen I had been prescribed was taking its toll.

Any ideas out there? Or indeed  similar tales to tell?

Thank you if you managed to read to the end of this post!



Sun, 19/03/2023 - 18:27
Gordon L
Last seen: 1 year 2 months ago
Joined: 19/03/2023 - 17:08

Hi Red

Reading your message has encouraged me to Join Ouch to hopefully offer a little bit of hope to Cluster sufferers.

I suffered from cluster headaches from my late 20s to mid 40s. For years I was unaware of what they were and just put up with it thinking at the back of my mind that I was ill beyond hope until one day I had a bout so bad that my wife insisted I call an ambulance and was initially diagnosed at A&E by the duty Doctor. I think he knew because it was the oxygen that they gave me that stopped it.

I went down the usual route of GP, Neurologist, scans, pills, oxygen etc etc and was told that I just have to live with it as a condition.

Having only just being fully checked over by my nurologist, feeling dreadful one day I walked into a massage therapists in Hove and booked a massage. This is when I first met Robert who after my first session told me that I had a serious condition with my uper neck and spine.

Going back into my teens I had an incident at school at about age 16. My brother was chasing me across the dining hall and I ran towards a pair of fire doors which usually swung open both ways. Unknown to me the caretaker had not unbolted the doors that day as he normally did and with all my force , my head down with my arm out to open the left one running as fast as I could  my head impacted with the solid fire door, splitting the door in half and I ended up on the floor the other side having ripped the bolts out top and bottom. I was a rugby player, 6ft 6 18 stone in which case I basically smashed it to pieces.

I was dazed and had a sore neck for a few days but looking back I must have nearly broken my neck. Afterward I thought nothing of it but would joke and play around that I had very little feeling in my fingers and hands not realising  infact I had essentialy fused my upper spine and atlas joint together.

I continued to visit Robert and after about 8 sessions of therapy he eventually moved something in my neck which lead to one of the worst bouts of headaches I had ever had however I continued with regular sessions knowing that I had to get my neck sorted somehow.

One day after about 5 months of weekly visits to Robert having driven home feeling a bit strange just after a massage session, as I put the key in my front door something moved at the base of my skull at the back and I suddenly felt totally different (I was at that time in the middle of a bout of clusters) as soon as it moved I had much more energy and the weird cloudy feeling that a cluster bout gives you had dissapeared.

Since that day I have not had a single Cluster headach, I informed my nurologist shortly after and he basically said its impossible as they are incurable.. Well I think he was wrong.

Continuing massage therapy about 6 month to a year of my clusters stopping I then developed Trigeminal  Nuralgia. Oxygen would not stop the pain, nothing would touch it, at one time I was on 6 times the maximum dose of amitriptyline and even that would not help.

One night I got a taxi to A&E as I was in so much pain, the Doctor added up all the meds I had already taken and the two bottles of red wine, he gave me a dose of morphine and even that did not help however when I walked outside and the cold air hit me the pain spontainously stopped.

This gave me even more faith that I just had to continue getting treatment on my neck and thankfully after several more massage sessions my headaches eventually stopped.

I did think of joining OUCH a few years ago to tell my story however I resisted just incase I had a relaps however I now can say with all confidence that my Clusters and later Nuralgia was all caused by trapped nerves in my upper neck.

I hope this helps give a bit of hope.





Sun, 09/04/2023 - 11:04
Last seen: 1 year 3 months ago
Joined: 09/04/2023 - 05:35

Hello both, thank you for sharing your stories. I'm 35 years old and I finally got a diagnosis in 2021 after being told for years from doctors that the pain was caused by stress and I was being dramatic -- I also suffered a head injury a few times in early 20s and teens however when I was 30 I had a major car accident and my cluster headaches were the worst. I was seeking support from every professional with no luck however I was finally introduced to Dr Gopinath who is a pain consultant. He immediately recognised that my cluster headaches had become flared by whiplash and head injury and I privately paid for steroid injections to be placed in my neck. For 2 years I didnt experience any pain again until this year. After having my injections, Dr Gopinath kindly moved me to the NHS list to have this injection for free in future however they unfortunately removed and discharged me "accidently". I am currently going through my bout of clusters again and its awful. Heavily relying upon sumitriptan nasal sprays, ibuprofen etc and it is massively impacting my young children and husband. I have managed to get back on the NHS list and I should hopefully be getting the injections in a months time. 

I totally agree that the pain is to do with something in your neck and upper back because I never seem to struggle with this pain and only when I'm having my cluster headaches. I also have acupuncture and the Dr recognised this too and explained that the pain in the nerves is why my ear feels pressure and blocked during a cluster headache.

I would recommend seeing a physiotherapist or any professional to relieve the tension in your back and neck and I hope that one day we can both be like Gordon *dance4*

I hope you all have a lovely Easter weekend.


Best wishes



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