Anyone else have problems with their occipital nerves? I can't seem to find a doctor in the UK to actually diagnose/treat this issue.

[Catsymoo]

Hi.

Just wondering if any other diabetics here have occipital problems and how they manage it because I've been off work for 6 months with this and am struggling again on a phased return and it's making me worried I will never get back to full time.

I'm a 33 yo type 1 and I've had type 1 since I was 22. My blood sugars were well controlled for the first 5 years but now they are always in the mid to high teens, sometimes 20s whenever I eat. I'm resistant to insulin during the day but sensitive at night. My levels usually are good when I wake up but I think this neck problem I have is related to diabetes and possibly TMJ but not diagnosed. Me and DSN are working together to try and get the sugars down, new insulin has been suggested but I haven't gone on it yet due to hypo anxiety.

I get this tightness at the base of my skull, to the point where even laying on the softest pillow feels horrible. My head throbs and it makes my entire upper body feel weak and shaky. Imagine carrying a heavy backpack all day and how tense your muscles feel.. I feel like that all the time. Sometimes the neck tension causes a shooting pain for a few seconds in my left temple and it's horrible. I even get brain fog and a sense of panic from this condition.

On the worst days I have photophobia, nausea, feeling off balance, dizziness and pain in my face and jaw. I cannot relax my jaw and sometimes the pain travels down my shoulders and arms and my arms feel very tired.

I saw a physio this year and started lifting weights but didn't see any improvements until I had acupuncture. My posture is awful and I spend most my time at a computer as I work on a computer and am an avid gamer. I try to be mindful of how I'm sitting but I have an expensive SecretLabs chair which has lumbar support etc. I've also been given nortriptyline to take at night and it seems to do a decent job preventing migraines but doesn't help with the head tension/pressure.


I am thinking I might have occipital neuralgia but I've never had a diagnosis other than I need to exercise more.

I've noticed my symptoms get a lot worse when I am looking down at phone or a book or hunched over drawing on my iPad. And if I sit in the same position for too long. My body just hates sitting upright. I can't even sleep with two pillows anymore. I think my nerves maybe damaged or inflamed from diabetes and posture/TMJ. I get major relief if I press my thumb into my occipital areas and push as hard as I can for about 1 minute. But it's only temporary. Any other diabetics have similar issues?

Acupuncture gave me about 2 months relief but issue has come back a few weeks ago.

 

[MrsA2]

Have a look at Angela Stanton , an American who has done lots of work regarding migraines, some of which she reckons is related to back of the neck posture.
Whether or not its diabetes related, they have common symptoms in carbohydrate and diet
She's mostly on Facebook

 

[Goonergal]

On the worst days I have photophobia, nausea, feeling off balance, dizziness and pain in my face and jaw. I cannot relax my jaw and sometimes the pain travels down my shoulders and arms and my arms feel very tired.

Acupuncture gave me about 2 months relief but issue has come back a few weeks ago.

As @MrsA2 says, there could be a migraine link. I used to have chronic migraines (prior to going keto) and twice had pain blocking injections into the occipital nerves (both sides) under the care of a migraine clinic. In my case they didn’t work, but it may be worth exploring - I was under the Headache Group at the National Hospital for Neurology in Queen Square.

Angela Stanton’s work is well worth a look.

 

[Ryhia]

I have occipital headaches which are not diabetes related, rather I have spondylosis and mild stenosis in my neck. The spondylosis was diagnosed around 35 years ago and the cervical stenosis after an MRI scan around 9 years ago certainly years before I was diagnosed with diabetes. When the spondylosis/stenosis is irritated, I experience most of the symptoms you describe. Nausea, loss of balance, numbness, tingling in fingers, memory issues. I was told to avoid lifting heavy objects as that irritates things and I experience pains across my chest. I am also limited in doing many of the activities other people take for granted as if I look up or down for too long I lose concentration and start to feel nauseous which can take a few days to resolve. Most recently I have been having headaches which start at the base of my neck and work their way around the back of my head. I also experience icepick headaches but not sure these are related to my neck issues I was recently re-referred to a musculoskeletal consultant as I was having major balance issues, when I mentioned the headaches, he confirmed these were occipital headaches. My consultant sent me for an MRI scan and I am still waiting to discuss the findings of that, however he also referred me to physio.

Physio gave me very simple exercises to do which have helped a great deal, for the most part my balance issues are now resolved and whilst I still do have some issues, I am not stumbling around the way I was neither do I get nearly so many headaches. I am not saying that what I have is the same as you are experiencing but there do seem to be similarities. I am not a gamer, but I did work in the computer industry for many years and part of my problem was constantly looking at computer screens.