• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.



Registered User
Sep 16, 2005
I don't think i've got it...yet...but i thought i better check...

This year I have been suffering from what i originally thought was tooth ache, then ear ache then sinusitis, then cluster headaches or some other headache that is similar to migraines. It appears that the nerves in my face have gone haywire, specifically the trigeminal nerve....but none of my pains appear to fit any one condition exactly.

I have a dull ache in the side of my head pretty much all day every day, around my temple...and then just for fun i get episodes of excruciating pain that can last a second or 5-15 minutes. Pain that makes me cry and sob, pain that makes me want to whack my head against something, pain that makes me worry that if these episodes don't stop soon I am going to end up losing my job. I noticed the pain really getting bad in February and it has gotten worse and worse and more often as the year has passed.

The dentist declares it can't be my teeth and I don't appear to have any jaw or clenching, bruxing of teeth problems. My sinus has been scanned and all looks good, I have had a CT scan looking for a pituitary tumour and nothing showed there either, I just got an MRI done yesterday...have no official word on it yet, but I won't be surprised if it is clear too. I have yet to be prescribed any pain killer that can completely rid me of the pain, I am going to a naturopath today.

Anyway, just wanted to check and make sure that noone has ever seen such symptoms in a dementia case before (being as my Dad has an early onset dementia that is more often than not hereditary - I am concerned a little).
P.S. If people have been wondering why I am hardly on here these days, this is part of the reason...even my poor dad is not getting as many visits from me, as most afternoons when i finish work I am in agony.


Registered User
Jan 4, 2006
Hiya Nat,
That is so strange, I was thinking about you a little while ago, and here you are.
Sorry that you are not feeling too well.
Sorry I cannot answer your question.
But pleased to see you posting - take care .
Love Helen


Registered User
May 24, 2006
Nat it could simply be Neuralgia
I think they call it tri geminal Neuralgia

I believe some schools of thought say its a virus trapped in a nerve cluster

Try to find a really good Homeopath they should be able to solve it or even an Acupuncturist


Registered User
Feb 22, 2006
sort of north east ish
nat .... sorry to hear you're having such a hard time. I hope the naturopath will be of some help. perhaps it's 'simply' that you're exhausted and stressed out with looking after your dad? I know it sounds a bit of a lame explanation for such awful pain .. but i'm sure it can be a possibility. if you're anxious about something happening to your mind, it's possible that you're aware of every pain and change ........ and things get blown out of proportion. i'm not saying that it doesn't hurt or that it's "all in your mind" ...... just that the mind can be more powerful than most of us imagine ... and can create more pain than we might expect

take care of yourself



Registered User
Sep 16, 2005

Thanks for the comments but i'm well aware of the tricks the mind can play...and the effects of stress, but this time this appears to be a 'real' thing.

Doesn't seem to be affected by my levels of stress and I have to say I am really really really sick in the head if this is created by my own mind because it is true torture...its not a little bit of aches and pains or me being self obsessed so that the pain seems bigger than it is.

I have tried all different ways to stop the pain, trying to relax, massages, smiling for as long as i can when i feel it coming (weird i know but i thought maybe the concentrating on the smile would both relax and take my mind off it), heat packs (which sometimes are a godsend and sometimes make it worse), hot showers, aromatherapy, telling myself its not really painful and just simply doing nothing.

The majority of the time it comes when I am sleeping and as far as I am aware not stressing, not obsessing, just sleeping and quite happily too until the pain comes and wakes me up. Wakes me up like I have a knife through my head with a hook on the end of it, gradually being pulled out.

Personally I am coming to think that putting things down to stress and it being 'all in the mind' is just the easy way out for the world and doctors and does the person suffering the pain no good at all. Afterall how many times have I heard of people with dementia not getting a decent diagnosis for years and being told that they are just depressed or worrying too much. And NO that is not why I am worried about this. Fact of the matter is, if it wasn't for the obvious fact that my Dad's brain has shrunk....people could say that the whole disease is in his head too (which it is by the way!)...the stress of life was all too much for him.

I am so sick of every time I freakin hurt, someone suggesting that it is the bloody stress (and no i am not attacking you Aine I know you meant well). If it wasnt for the goddamn pain in my head life would be pretty unstressful at the moment. Dad is surprisingly very well, seems happier than I have ever seen him in his life as he is kinda looking at the world like a 3yr old does, and a happy 3 yr old too, and he's not getting any worse physically. My mum is behaving herself and not upsetting me of late, well not in any major ways. And I am still over the moon in love with my husband and we are planning our Christmas holidays, trekking for 10 days in Tasmania....something for which I NEED to lose these headaches for.

As I told my doctor when I first saw her about the headaches...I know I probably worry too much about things, but **** happens in my family. My Dad had 8 brothers and sisters and 6 of them died of cancer, one drowned and one remains alive. My Dad himself has got some disease that the odds say he shouldn't have, my mother this year (after I already had the headaches so the stress of the event didn't trigger them) had a 1 in 125,000 memory loss episode. I had a disorder 6 years ago that at the time I was told by about 5 doctors I was too young to get. Did I mention the time I broke my freakin leg and was sent home from the hospital without them x-raying and them saying it was only muscle pain???If I say my freaking head hurts, check it out!

Thankfully I have finally got a doctor who is happy to do just that. And the specialist she has referred me onto, appears to think the problem is real too and not a creation of my overly stressed mind. However as the pain is atypical I have a feeling eventually they are going to tell me that they can't help me so I have gotten to the point that I would rather it if I knew what it was even if it were dementia, or a tumour, or a specific type of headache that they could treat. Anything is better than not being able to stop the pain, when I need to function, I need to go to work....I want life to start being happier I don't need this making life harder again.


Registered User
Jan 4, 2006
Hiya Nat,
Have you looked up that tri-geminal neuralgia thing? I did, and some of it sounds like the sort of pain that you describe - though you are on the young side for it - but knowing your luck, that makes no difference!!
Pleased that dad seems 'happy' - it helps I thunk - just knowing that most of the time they are not anxious or distressed.
Do tell us about the trekking plans - is it just the two of you going?
Love Helen


Registered User
Sep 21, 2005
talk about me getting it wrong

Hi Nat just sent you a PM and am so sorry to have misread how you are at moment, thought things were much easier for you with your dad being in affectionate mode , just why when one situation improves another takes over, I know what a strong person you are so it must be really bad to be effecting you like this , hope you can get some relief from the pain, glad mum is behaving her self at last. just think of your trip, is that where you went on honeymoon? maybe the good memories will confuse the pain signals for a while. Interested in what you said about early onset mostly being inherited, is there evidence to support this, if so i am very concerned for my children, one connection I have spotted with Alzhiemers is that sufferers have themselves or a realative with Rheumatoid arthritis
I just wonder if there is some connection, Trevors father had it very badly wher e the bodies immune system attacts it self could just be same going on in the brains of AD suffers, any one eles seen this conection or am I just trying to find an answer as to why this has happened to my lovely husband, thinking of you Pam


Registered User
Aug 9, 2005
Hi Nat,
So very sorry to hear about your pain. I have migraines so I can (sort of) imagine how much you are suffering. Have you been to a Neurologist yet?

Also, it may not help but, have you tried an analgesic that is 500mg paracetamol, plus 10mg codeine plus a "calmative"? (I can't think of it's names! ) Is readily available over the counter at Australian pharmacies so you should have no trouble buying it. Not really strong (like a prescribed painkiller) but the "calmative" element (whatever it is) can help to relax you and (for me) is a great help with the pain. I'm sure you've probably tried this drug (wish I could remember what it is called!) but if not, do try it.

Wishing you success in finding a way around this awful problem You'll love Tassie (if you haven't been before)!! If you have, you'll know what I mean! I hope you can have a wonderful and pain free holiday.


Registered User
Jul 28, 2005
south london
I had something similar, dull deadache/paing in the jaw. head aches occasionally my throat would go into spasms and I would have difficulty breathing. it took about a year to diagnose and eventually turned out to be a "chondrosarcoma" which is a cancer of the cartlidge.

hope you find out what it is soon, and that it's nothing too serios


Registered User
Jun 27, 2006
This isn't specific to head pain but don't let anyone tell you it's "all in your head" (no pun intended). Nerves are funny things and will sometimes comtinue to fire when they shouldn't. When my son was 11, his father accidentally ran over his foot with the car! No broken bones and the first couple of days everything seemed to be improving as normal. Then the pain started up again. Within a week the pain was up to his knee and within a month he was essentially bed ridden with pain from the tips of his toes to the top of his head. To cut a very long story short, he had CRPS (Chronic Regional Pain Syndrome) aka RSD. Eventually, after visiting doctors all over the country (and the US is a big country) and being told it was psychosomatic by one doctor after another, his psychiatrist (who, incidentally, said that it wasn't in his head) suggested another neurologist who actually managed to treat him (anti-epileptics plus a lot of aqua therapy). He is now 17, pain free and healthy, but the whole thing took 18 months to resolve.

Suffice it to say, it's coloured my view of the medical profession. They don't like you to know this but medicine is as much an art as a science, and finding a gifted diagnostician is like trying to find a needle in a haystack, but they are out there. We lucked out - the neurologist we found had suffered from this condition himself - he knew it was real.



Registered User
Jul 2, 2006
Newport, Gwent
Hi Nat
I'm not medically qualified, but do work for the NHS as a mere secretary, so do know my way around the system some what. Basically, he who shouts loudest gets the action!

Its a fact of life that doctors will latch onto a reason e.g. stess factors in your life, and sadly put stress as reasons for physical symptoms before going down (in their view, costly tests route).

A close friend of my, and colleague suffered really bad headaches for months, went back to her GP time and time again. She had recently had a baby, returned to work, and had major work being done on her house, diagnosis...... stress. I dont wish to frighten you, but she died within 2 months of a brain tumour!

So my advice to you is badger your GP to death for intensive tests, failing that, simply arrive at A & E (out of normal GP hours), and refuse to leave (even stating that you will be contacting lawyers if they discharge you without diagnosis!!!).

Strong measures I know, but sometimes needs must. I know the last thing you want to do is enter into a fight when you are feeling really ill, but sometimes it is necessary to get some action.

Good luck, hope you get a result soon.

Tender Face

Account Closed
Mar 14, 2006
NW England
Cate said:
Hi Nat
I'm not medically qualified, but do work for the NHS as a mere secretary,
Youch, Cate! Don't put yourself down!!!!

From my perspective, many 'mere' secretaries in the NHS can do cartwheels whilst spinning several plates...

Nat, sorry I can't really help but to back up what Cate has said, if you've got as far as a named specialist and a referral.... start badgering... direct .... and see what their secretary is made of.......: 'If I say my freaking head hurts, check it out!' should prompt a response!

Wishing you love and luck, Karen (TF), x


Registered User
Jul 15, 2005
Hi Nat,
It is good to hear from you but I am so sorry for the circumstances. I am so glad you are getting looked at and hopefully will have some results soon.
I know you are tired of being told it could be stress but stress is cumulative. What you experienced last year in the way of stress can rear its ugly head later. That isn't in ones head either. When your stressed, the muscles tighten, the veins constrict, the heart beats faster, the organs work harder and oxidants are released. It can be very damaging. That being said, it is REALLY hard to not be stressed in our situations ! I was really hurting myself and have to work daily to let it go and it is so hard. I carry mine in my back and stomach.....everyone is different.
Of course, that may not be what is going on with you and it is very smart of you to eliminate every other cause because those symptoms could mean so many different things. I have been told that AD doesn't cause headaches by Mom's neurologist. I know early onset can be hereditary but don't think that is what is going one with you. Besides, they are so close to figuring out how to stop it, if you get it at some point, they will probably have a cure! ( we can only hope and pray for that)
I hope you have a delightful trip, you certainly deserve the break. Take care and please report on how you are. Meanwhile, your in my prayers.


Registered User
Mar 4, 2006
South Wales
Hi Nat,

So sorry to read of your problems. Some years ago I knew a lady (admittedly in her 80s) who had severe face pain that was finally diagnosed as Trigeminal Neuralgia (TN). From what I read at the time, if they can find a cause for the pain it isn't TN!!!
As I recall she was initially helped by one of the older anti-depressants that are well known to help with pain control (that's NOT assuming that the pain is in your mind). Later she was helped with a drug called Temgesic that is put under the tongue and helps quite quickly. But it certainly needs a doctor's prescription and may be classed as a controlled drug, so there may be a reluctance to prescribe.

I hope you get some help from your recent referral to the neurologist.



Registered User
Aug 29, 2006
SW Scotland
Hi Nat

Much sympathy, I know what it's like Do you have a good holistic centre in your area? If so, it's worth talking to them. I did, after years of pain, hospital referrals, etc. and they sorted me out after two treatments.

Problem was in my neck, which I already knew, and my spine was out of alignment. Trouble is, pain causes muscle tension, which traps nerves, causes more pain.... downward spiral. I do hope you get it sorted soon, constsnt pain is soo depressing.




Registered User
Aug 20, 2006
My Mum had dreadful neuralgia for a couple of years. It seems to be one of those conditions that can appear without a readily apparent cause - or at least, one which medical science has yet to discover. So usually the treatment is to deal with the symptoms.

The only thing you can do is be persistent; you say you have been referred to a neurolagist. It may be worth asking if you could be referred to a pain specialist - they do exist.

My Mum's neuralgia just stopped one day. No specific cause was ever diagnosed.

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