temple area , anyone know what could taken for this headache that only goes away when I am flat on my back, and why can't I make them believe me, after all I have been telling my Doctors for bloody years and I am now at my end of tether, the more I move the more spastic like I become, seems like something that should be easy to diagnose, after all this time why is it that you feel your talking to a brick wall, and before anyone asks, no I have not fallen, at least since my last scan. I realised I put off going to the doctor and am as much to blame but when you tell your doctors and don't get feedback you then think your wasting their time, but with powerfull pain-killers you can put to the back of your mind the strange little sensation in your face or the falling down a lift sensation as you put your head on the pillow every night, and the movement of your neck can make for strange reactions and from people who may have seen it , or the times when people go to catch you sometimes as if they think your going to fall, and because you feel your not believed, because you can't show it on cue, it seems unless it is something constant, then there are some patients, that just can't be believed until they either fall over or are taken by ambulance as has happened, and like the many times before after resting for even a couple of minutes can get up as if nothing has happened, and when the doctor asks what is it you want, you begin to get a bit more neurotic and just stop asking doctors, (by no means all doctors) Is it possible that I've made it all up, and that I have never told anyone, or that I fell over, and have forgotten to tell anyone, is it possible to be diagnosed with a movement disorder, when in actual fact your being stonewalled, Nah' not in todays modern world and a cradle to the grave health service, Oh and this is no reflection on my GP, for I believe it's been hard for her too

13 Replies

  • Have you ever seen a neurologist? Have you ever had a brain and neck MRI? Neurologists also deal with headaches, as well as movement disorders arising from brain or spinal cord. If your GP is reluctant to refer you, just say that you have tried everything the GP can offer, and run out of options, so now the only thing left is a specialist assessment.

  • You need to see a neurologist sooner than later. Make sure that your pillow

    is not jammed up to the headboard or wall when you are sleeping. (just a

    tip from my experience) The movement disorder needs to be looked at by

    a specialist, not a GP so ask directly to see one.

  • I know this may sound crazy but the dentist solved my headaches, temple and ear area and headaches in general, I was clenching my jaw so bad he said I'd built the muscles up in my jaw area as much as a weight lifter would his arm etc... I now wear a mouth guard over my top teeth.... Sorted, for the last 3 years I only have a headache if I have a cold or any alcohol!!!

  • Alex - what's your blood pressure like? Widely fluctuating pressure on standing and lying down can cause some of the symptoms you describe. A neurologist would also check for this in the ruling in and out process.

  • Hi, Do you get any nausea as well? It sounds a bit like meniers disease but I'm not a Dr so what i suggest is keeping a diary of events. mark down exactly what happens and when, include everything you eat and drink. If you can manage this for a couple of weeks to a month they will take you a lot more seriously...Dr's love charts and numbers! Forget the cradle to grave thing, most of us have had to learn the hard way that we have to take responsibility for our own health. The type of language you use when you talk to Dr's can have a massive effect on how serioulsy they take you so the way to break through that is by keeping you diaries. Have you tried any relaxation techniques? Mindfulness and body awareness are very good techniques to help with pain and muscle tension. As already said start with your face and jaw and work your way down your body. It's amazing how much tension we can carry in our jaws, a head and neck massage might help but it's not advisable until you have a diagnosis. something that might help immediately is ...there are two main linked muscle groups on your jaw that you can work on to help relax it, one is just above your cheek bone at the hair line, you should be able to feel their structure just under the skin, don't rub them hard or put loads of presurre on them just gently place you forefinger and middle finger over the area and with a light but firm touch so that you can feel the muscle but you are not pressing in to it, pull down as much as is comfortable for your skin...the idea is that by pulling down you are gently stretching the muscle underneath, and hold this for about a count of ten, repeat three times. Do the same thing just under your cheekbones, with the same two fingers. This time you index finger will fit neatly in to the space between your cheek bone and jaw bone just in front of the base of your ear...there's a definitite indent where the bones meet and that is where your index finger needs to be the the middle finger in contact with it .. Use the same gentle but firm pulling down action as before. whilst doing these think about realxing your tongue. This will help with your jaw. there are more things you can do but that's a good place to start...before i got ill i was a violinist so I have some experience of neck and shoulder issues. If they help I can suggest more just let me know. Good Luck

  • Sorry Pinknosedcat, I Have only now came back to this post and read your very helpful post in reply to mine, and I will try everything you suggest because i'm sure here is where some of the best advice is given due' to experience, your mentioning being a violinist makes me think of how much music means to me ,and although only a guitar strummer, I miss playing my guitar, so I sympathise deeply with you about music playing your violin , I hope you still have a go when you can, but my fingers and hands are a problem, as I'm sure you find with your violin playing. so my headache I will follow your instructions and let you know.

  • This suggests that you may be causing the headache. Heads are very heavy. If your head is not balanced on top of the spine with the centre of gravity passing down the spine then you may be in a situation where you are having to hold the head up by keeping your muscles in contraction. This will lead to muscle pain aka headache.

    GP's know nothing about muscle coordination and balance. Most medical consultants know very little about this subject either. An Alexander Teacher may be able to help you re-balance your head back on top of your spine.

    I can only suggest a possible problem, but without seeing you with your headache my suggestion may not be an accurate assessment of the situation.

  • Heads are very heavy indeed. I must have the weakest neck muscles

    because my head feels so heavy that it's actually hard to hold it up.

    I have a spot of numbness just below the neck area that spreads

    to the start of my shoulder blades. I am not kidding you when I tell

    you that my neck is too weak to hold up my head at times. Another

    thing is that my head will not lay down on my pillows to sleep. I have

    to push my head onto the pillow to rest my head. There is so much

    tension in the neck area. I've been to massage that my doctor

    recommended however the girls that worked on my neck said

    that they can't help me to relax my neck. One laughed saying that it

    was frozen in that position. I had months of physical therapy for my

    back and neck. My neck just became too weak to hold up my head

    for long without support of my hand. My doctor thinks that it's just

    tension. No muscle relaxer ever fixed that problem that he prescribed.

  • You don't need much muscle to hold the head up as it should balance on top of the spine. If the head is balanced on top of the spine virtually no muscular force is needed to hold the head there. What is important is to not pull the head out of alignment by the contraction of muscle.

    Often you can very slight over contracted muscles which pull the head out of alignment and instead of not uncontracting these muscles you employ another set of muscles to hold the head up. These leads to reduced blood supply though muscle which in turn causes pain.

    Much of the training of the Alexander Technique is to enable you to develop the means of not contracting muscle. Alexander Teachers by the use of their hands teach muscle to uncontract.

    Try lying on your back on the floor with your knees bent. Put some books under your head. Work on noticing what your body feels and does. You will find it an interesting exercise

  • Thank you all... and all of them are possible relation to each other as there is (from my point of view) as there are two old injuries and after the last one I was left with a strange sensation on my left side of my face and a strange feeling in my head as I lay down , (after the accident on my bike) or if I sneeze, cough, or anything that is sudden can cause me to jump or see stars, and I'm left in no doubt now that it is neck related, like I begged them at my hospital to scan my neck, and on the table I moved, they said. and this has happened on two different occasions, first time she told me that I had to stop, but she assured me that they had enough to make a diagnosis, but I was left with the problem and again persuaded them to scan and again I spoiled it by moving I was told. But I am as much to blame, because I left it too long, due to my lifestyle, But not being believed makes it very hard not to be angry even if I'm partly to blame by being too sensitive.

  • I really feel for you, becuase for a long time I had pain in my face / head(and inside my mouth) that no one could explain. There was no obvious cause, and I failed to get better or respond to every drug or treatment that was tried. it was clear that some doctors didn't understand what I wanted from them and that these people hinted that I was making it all up and that it was my problem that i hadn't got better.

    Luckily, there were a few who persisted and got me what I wanted - a physical reason for the pain I was in. That's all I wanted, it didn't even matter than much by then if the pain didn't go away! It was my shoulder and neck at fault.

    Having had some lengthy and costly treatment for this I've enjoyed a few months with very little pain at all. Now that the pain has started creeping back in, it's obvious that it was coming from my neck all along, but because it was felt in my face everyone was looking in the wrong place.

    Please don't blame yourself. OK, so there are lots of things we could all do to make ourselves healthier, but we are also human beings. When you are at the end of your tether it's going to hurt when you're told what you don't want to hear.

    Please don't give up hope. (Sorry this doesn't make much sense - I'm tired, should've stopped typing hours ago to do my shoulder exercises but of course, I haven't...)

  • Try and see an otoneurologist, they deal specifically with headaches,balance problems, nausea, visual disturbances ect.

  • I would suggest visiting a sports physio therapist. They are very good at finding the location of and treating pain.

    They will treat you, advise you on any exercises to do, and then you can go back to the GP with a "diagnosis".

    The balance issues and the headaches may not be related.

    The balance issues could be a simple virus, inner ear infection.

    If the headaches disappear when the head and neck are in a different position (horizontal) this may suggest some pressure on the nerve. Or it might just be stress related.

    Although something has popped into my head that it could be a mild form of epilepsy. This may be worth exploring.

    Can you see another GP in the practice ? explain you are worried because you don't know what's going on and are there any other investigations that could be done. At the very least they should be doing a brain scan because of the headaches and balance problems.

    I know its hard but try and be more business like when speaking to the second GP, describe an episode, then ask what has already been excluded as a diagnosis, what else could be explored. Have you noticed any change in frequency of these episodes. Are you taking any meds that could be causing this as a side effect?

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