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Any suggestions - desperate!

Discussion in 'Health and wellbeing' started by cleversparkle, Nov 22, 2010.

  1. cleversparkle

    cleversparkle New commenter

    Last year I had a considerable amount of time off work - around 25 days. I was a probationer and, luckily, my head was very sympathetic. I was diagnosed as suffering from 'cluster head aches', my pill was changed and I was given amitriptyline (sp) to take if I felt a headache coming on in the evening but nothing to combat the day time ones.
    Things seemed to improve for a while but recently the sore heads have come back. It isn't just an annoying pain that I can ignore - it's a hideous, head exploding, eyes burning, brain rattling type pain that slows my reactions and genuiney slows me down. I struggled through school last week, gradually getting worse. Tablets every night and now it's here again. On Friday, my PT begged me to go back to the doctor and said that they should be looking for a route cause - not just be happy with a chemical quick fix that simply masks the pain.
    My question is - how do I make the doctor listen? Last time I went, she was trying to tell me it was stress. Yes, I have a stressful job but that does not automatically mean I am stressed! Plus, these headaches don't just appear in term time. They like to mess with the holidays too. I want to know what is causing the blinking things, not be taking drugs for the rest of my life!
     
  2. cleversparkle

    cleversparkle New commenter

    Last year I had a considerable amount of time off work - around 25 days. I was a probationer and, luckily, my head was very sympathetic. I was diagnosed as suffering from 'cluster head aches', my pill was changed and I was given amitriptyline (sp) to take if I felt a headache coming on in the evening but nothing to combat the day time ones.
    Things seemed to improve for a while but recently the sore heads have come back. It isn't just an annoying pain that I can ignore - it's a hideous, head exploding, eyes burning, brain rattling type pain that slows my reactions and genuiney slows me down. I struggled through school last week, gradually getting worse. Tablets every night and now it's here again. On Friday, my PT begged me to go back to the doctor and said that they should be looking for a route cause - not just be happy with a chemical quick fix that simply masks the pain.
    My question is - how do I make the doctor listen? Last time I went, she was trying to tell me it was stress. Yes, I have a stressful job but that does not automatically mean I am stressed! Plus, these headaches don't just appear in term time. They like to mess with the holidays too. I want to know what is causing the blinking things, not be taking drugs for the rest of my life!
     
  3. Sparkle,
    I have become very experienced at dealing with doctors... although I now have a good one.
    You could try writing everything down a list of symptoms starting with the fact that they don't discrimnate between schhol/holidays. Then preszent list and say exactly what you ahve written above.. you nee dto know what is going on.
    This may be a long shot but I had a spell of very bad headaches afew years back, was being investigated for 'things on the brain' and it turned out to be a lactose allergy.. have you tried excluding all things milk from your diet for a week to see if it clears up, then try caffeine, then wheat.. it's grasping at straws but you never know.
    I feel your Doctor should be sending you for more tests , maybe a scan.
    I tend to take the lead now... and tell the Doctor what I have come for.. not rudely but along the lines of ..'Can we re-do my bloods just to see what is going on as my symptoms are rocky'. I normally get agreement and if refused get a good reason for it.

    You have to be assertive, so hard when you feel poorly. If you have no joy with one doctor pick another an dtry again. They don't all use the same tactics.

    I really hope you feel better soon, it is horrid being poorly long term.

     
  4. cleversparkle

    cleversparkle New commenter

    Thanks, Woozle. That's all really good advice. I hadn't thought of an intolerance/allergy and nor has my doctor. I too feel they should really be investigating further. Hopefully they will this time.
    I plan to everything you say so that I can be fully armed when I go to the doctor.
    Now - if only I could get an appointment. They appear to be like gold dust around here.
     
  5. Insist on an appointment this is a significant (not the word I want but the word that volunteered) problem... you deserve helpquickly a sthe headaches are causing pain and anxiety.

    Good luck.
     
  6. cleversparkle

    cleversparkle New commenter

    I think I need you to stand behind me and *** me while I'm on the phone - and maybe even in the surgery!
     
  7. cleversparkle

    cleversparkle New commenter

    Oh dear. That was another word for 'nudge'. It clearly means something very different in TES land.
     
  8. qwe

    qwe

    Are you using the term 'cluster headaches' descriptively or is that a medical diagnosis? As the latter it is very distinct entity.
    Whilst the advice about looking for a root cause, writing down all your symptoms, asking for tests etc is trendy and doubtless well-intentioned, if you already have a medical diagnosis of cluster headache it is of limited relevance . Whilst stress might contribute to the symptoms it seems unlikely that your doc meant that as the whole story
    If you research online you could probably make yourself more up to date on the theories of causation than the average doc, but the pretty basic patient.co.uk gives the following:
    "Research suggests that a part of the brain called the hypothalamus becomes overactive during each attack. However, it is not known what causes this overactivity. During an attack the hypothalamus is thought to release chemicals (neurotransmitters). These may stimulate nerve cells in the brain to cause the pain and other symptoms. The nerve overactivity may also cause a widening (vasodilation) of the arteries (blood vessels) in the affected side of the brain. One theory is that the pain is caused by the widening of these blood vessels which then press on nearby tissues in the brain, which can cause pain. However, this is just a theory and the exact cause of the pain is not known.

    One feature of the hypothalamus is thought to be concerned with the 'body clock' or circadian rhythms. Something to do with this 'clock function' of the hypothalamus is possibly why in many cases the clusters tend to occur at the same time each year. And, also, why during a cluster each headache attack often occurs at about the same time each day. (This is often a couple of hours after going to sleep at night.)

    There may be some genetic part, as in about 1 in 20 cases the condition also occurs in some other close relative.

    Most cluster headaches occur for no apparent reason. However, some people find that something may 'trigger' a headache. If you find that something triggers a headache, then it is best to avoid it for the duration of a cluster period (until you are in remission). For example:
    • Alcohol. Some people find that a headache often occurs within an hour or so of having an alcoholic drink. It is usually advised to stop drinking alcohol completely for the duration of a cluster period.
    • Hot temperatures may be a trigger, such as exercising in a hot room, or having a hot bath.
    • Strong-smelling substances, such as solvents, perfumes, petrol, etc.
    Almost all people with cluster headaches have no abnormality of the brain that can be shown by scans or tests. In a very small minority of cases, cluster headaches seem to be triggered by a tumour in the pituitary gland (pituitary adenoma) or other brain tumours. (The pituitary is a small gland at the base of the brain.) It has to be stressed that this is a rare cause of cluster headaches."
    As to tests, it says:
    "The diagnosis is based on the typical symptoms. There is no test that can prove the diagnosis. Tests are sometimes done if the diagnosis is not clear to rule out other causes of headache. Sometimes tests such as a brain scan may be done to rule out a pituitary adenoma (as described above.)"
    The full advice sheet is at http://www.patient.co.uk/health/Headache-Cluster-Headache.htm
    I don't think amitriptlyine is intended to 'mask the pain.' I don't know much about its role in cluster headache (it isn't mentioned in the above) but certainly for migraine it is used as a preventive, not a painkiller (my other half used to take it). Advice is always to take it in the evening but it should reduce the risk of problems throughout the 24 hours. As far as I know it is unusual to be advised to use it "as and when" when you feel them coming on.
    Unfortunately the info above suggests there aren't any non-drug treatment options (unless you count 100% oxygen as a non-drug).
     
  9. cleversparkle

    cleversparkle New commenter

    Hi qwe, thanks for the information and advice.
    A lot of what you say rings very true for me. It was exactly this time last year that this first started. I used the term cluster headaches as this is what the doctor had diagnosed. Although, to be honest I didn't have much faith in her as she didn't seem to know much about it and appeared to be clutching at straws. The doctor said that the medication was to prevent the further development of symptoms,but only to be taken at night. Initially she told me to take it every night but on my follow up appointment, when I said it appeared to have helped, she changed to the advice above (as and when I felt one coming). All well and good but, if I hadn't felt one coming before I went to bed and woke up with one, it was too late. This is what appears to be happening more lately. They are developing through the day, usually in the afternoons, or I wake up in the early hours with one. When this happens I have been reluctant to take the medication as it does seem to knock me out!
    I will still go back to a (different) doctor but just for them to clarify the use of the medication.

    Thanks again, very helpful.
     
  10. Sparkle..

    I really want to know what alternate word for nudge gets censored... I am racking my brains .. what is left.

    You have to be quite firm and determined when negotiating with Doctor's like teachers they have too much work and admin to do in too little time... they want to help but its easy to get swamped.
    I suspect the GP is saying only take amitryptilene at nigt a sit has asedative effect.. i too use it as an evening painkiller and sedative.. it's good stuff.
    Have you made your appointment yet?
     
  11. cleversparkle

    cleversparkle New commenter

    I have. I managed to get a cancellation for 2p.m today. Will let you know what they say. I am seeing a different doctor to last time.

    The word was P R O D...hope that works!
     
  12. cleversparkle

    cleversparkle New commenter

    Following a crappy doctor's appointment I'm now even more desperate.
    I was in and out of the surgery within 5 minutes and the lady I saw might as well have told me I was wasting her time. She didn't have access to my notes from my previous GP and didn't seem to have the time or inclination to listen to my explanation. I managed to tell her that I saw my last GP 6 or 7 times on this issue and that she had said I was suffering from cluster headaches and had given me amitriptylin. At this she said "well, what more would you like me to do?" and said that if I had "been for all the tests" she couldn't do more. I interjected with what was going to be "but I haven't had ANY tests, this was an informed guess from the doc who was going to refer me to a neurologist if the medication didn't help or the symptoms persisited". I got as far as 'but' before she rudely interrupted with "but what?".

    So, having had another rubbish day and night and being made to feel like a fraud, I have emailed school and asked to be referred to OH. I have no idea if this is correct or what will happen from here but I needed to do something.
    Could anyone advise what will happen next?
     
  13. qwe

    qwe

    I am probably often seen as defending doctors on here, but on the face of it a written complaint would be very reasonable.
    (just in case you were worried by the thought of amitriptyline being a "sedative," it's really just that even at the low doses you will be on it often makes people a little drowsy; obviously if it's taken in the evening this side-effect ceases to be hazardous, and may be helpful. Some people are given it as a 'surrogate' sleeping tablet because it's not addictive and it doesn't wear off in the way traditional sleeping tablets do; its almost obselete use for depression required MUCH higher doses)
     
  14. dominant_tonic

    dominant_tonic Established commenter

    Hi cleversparkle - sorry you are having trouble, headaches are vile.
    I have loads to say, and will say it all so you can pick and choose what to listen to or what not. So I apologies in advance for the length of the post, but have to say my piece in the hope it helps. Most of this I have gleaned from various neurologists and GPs, most of which were lousy, but a few have been brill. Like everything I guess it is just a case of finding the right one.
    1) I would query her diagnosis of cluster headache for a few reasons. 1, they are really really rare in women, nearly always blokes. secondly, they have such a specific type of pain, that you are left in no doubt about it and you seem to e unsure. Cluster headaches are known as the suicide headache, because the pain is so severe it has driven people to suicide - and this is medically documented not myth based. The pain is thought to be possibly the most e\severe pain one can experience - the women sufferers with children in some cases saying it i\ was equvaialent to childbirth, but in most cases saying it was worse than childbirth. Also do these headaches wake you at night? It is unusual to have cluster headaches that do not wake you at the same time every night when you are undergoing a flare up. Also, was a cluster headache, you would have had a referral to a neurologist, and a prompt one at that.
    2) take amitryptaline (when I remeber to get it in the UK [​IMG]) for prevention of stress headaches. They are regularly used off label for prevention of headaches as are other tricyclic anti depressants. I initially took 10mg a night, and gradually built it up to 50 mg at which point it became effective. Don't forget it is an accumulative medicine (can't think of the proper word), but it is not a pain killer. Therefore you have to have enough of the stuff floating around your system before it takes effetc. For me this is about 3-4 weeks. I occassionally up my dose in advance of expected things such as a forecast dire change of weather (only from hot to cold the other way doesn't bother me), orif I know I cam going to hit a really busy point . EG, in November I begin upping the dose because I know December is a nightmare for me, and skipped meals and lack of sleep are inevitable, and I know I will pay the price. As far as painkillers go I go on the 1000mg paracetomol, two hours later brufen, two hours later paracetamol etc etc and that usually kicks it - but if not I don't persist as brufen will give re-bound headaches, and switch to co-codamol instead.
    Initially the amitryp, used to make me feel drowsy all the next day, well not drowsy so much as sort of swimming through mud. But a found a tidy doctor when I went to find out about it, and he had taken the medication hismelf, and found that it should be taken sort of 8pm ish as opposed to bedtime, otherwise the peak release of the tablet was when you were waking.
    Anyway, I love them they are my saviour. My stress headaches range from a nraky reminder that I am not looking after myself and an outright tear inducing agony, that hurts everytime I breathe/move. You will learn how to control them. My mum has trigeminal neuralgia (common in post menopausal women maybe attributable to the hormone change but no medical backup yet), and takes tablets like mine but different :) They take a whil to build up also.
    Anyway, I did warn you this was going to be long, but I had to post in case something stood out, as I really feel for you. My headaches have seen me on one memorable occassion standing in the GPs car park in tears, unable to walk in because the movement made it chronically unbearable (at this point they sent me home and asked me to come back because they were on luch 12-2 :) Nice. But I can sympthise with your pain, and yes push for ecerything. Sod the, it's not them that has to live with the pain. Good luck xx
     
  15. cleversparkle

    cleversparkle New commenter

    Thanks to everyone who has taken the time to reply.
    I have also been questioning whether these are 'cluster headaches' as, although a lot of symptoms did ring true, the severity of the cluster headaches and a few other things have put some doubt in my mind. I think that is why I'm so frustrated - something must be cauaing the bloody things.
    I will NOT be going to see the doctor that I saw yesterday again.
    I was only prescribed 10mg tablets and was told to take 1 a night. Last night I took 1 before bed, then another when I woke up and felt crappy through the night. I woke up feeling lousy again this morning - not a headache as such but a very foggy feeling and limbs lvery heavy. I guess this is a result of taking the amitriptylene too late!

    I am hoping that the OH referral (which my school are supporting me on) will mean the doctor is forced to investigate further. I'm not happy with the idea of pumping myself full of medication (either amitrip. or painkillers) on a regular basis and so hope there is some kind of root cause to be found.

    For now, I will continue to take the amitrip. and just hope that it helps. I really, really want to get back into work tomorrow.
    Once again, thank you for taking the time to respond and keep your fingers crossed for me.

    CS x
     
  16. Hello Sparkle,
    Firstly the above poster is right (drat cant remember name) amitryptilene isn't a sedative it just has that effect on me. It also relieves pain but is mainly antidepressant.. my body doesn't follow the rules. I take 12.5mg an hour before bed.
    Thank you for filling in the word.. the sensors are going a bit nuts but hey ho.
    I think you have been very unlucky and managed to get two doctors who weren't as helpful as she could be.
    I would go nuts you are a much more patient person than I. I have a chronic condition with no cure and would hit the roof at being told 'what do youw ant me to do' by a doctor, the immediate response of care, explain, investigate and show a little $£*$ing compassion springs to mind.
    I would be phoning the practice manager to point out how the treatment has been anything but supportive an duseful and that basic blood tests, bp etc have not been performed. I think it is reasonable to expect some sort of scan for reoccuring headaches just to be sure.
    I would be making yet another appointment.. how many GP's does your surgery have? And going in with the 'I hope you can help me, I have been getting severe and frequent headaches and have not yet had ANY tests performed.. can you please book me in to be checked out.
    OH cannot offer any medical treatment in my experience they take comprehensive notes an dmake a decision as to if you are fit for work.
    What is the lighting like in your classroom? Do you find yourself standing in a dark room with a projector shining on the board? Have you light bubs that flick and need changing, are the blind salways down.. I had a science colleague with the most awful headaches and he was doinga ll of the above, bright computer screen dark room etc... it didn't cure him but made the headaches slightly more bearable when they attacked.

    Let us know how things go...

     
  17. qwe

    qwe

    I have confessed to a tendency to defend docs (I like mine a lot and know her well - she's the wife of my equivalent in the neighbouring institution - and another teacher I know is married to a surgeon with GPs amongst his best mates), but it strikes me as rather hypocritical that we resent jibes about 9-3 days and long holidays (the latter at least is true, after all!) but are the source of jibes about 12-2 'lunch-hours.' This is when hundreds of prescriptions are checked and signed, when referral letters are dictated, when results of blood tests and imaging are checked and actioned, when hospital discharge & outpatient clinic letters are read and actioned, and, above all, when home visits are done. Turn up during those and there may not be any GPs in the building.
    These threads have a desire for blood tests as a recurring theme. There are thousands of medical conditions of which only a tiny proportion have an appicable yes-or-no blood test. Generally levels of various things are measured, with no clear cut off between normal and abnormal levels and a whole host of possible explanations for variance from the mean +/- 1SD. Many serious conditions can leave all of these unchanged. As far as I know there is only one type of headache, called temporal arteritis, in which you would expect any blood test abnormalities. (Whether the OP has true cluster headache or not we don't know, but I think we can be confident it isn't temporal arteritis.)
     

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