A Man with a Plan

I have been asked by my neurologist to scale my headaches from 0 to 10 while I come off caffeine, with 0 being no headache whatsoever and 10 being the worst of my headaches. I am up to day 54 and all is going really well, I have even reached up to 30% headache free, i.e. my headache tablets are actually working for the first time. It is bliss on the headache free days for the first time in my life. I am on a 3 month strategy … a man with a plan.

However this week something has gone horribly wrong from Sunday with a headache rating of 4, Monday 4, Tuesday 2, Wednesday 9, Thursday 9, Friday 7. I thought I had slipped up and done something I shouldn’t have done. My headaches were getting as bad as they have ever been. It wasn’t until I started analysing everything I was eating, doing and not doing that I suddenly realised I just had a seasonal head cold. Good luck with all my friends who suffer colds this time of year.

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  • MY NEURO SUGGESTED I DO THIS & COUNT THE NUMBER OF 10s I HAVE & HOW MANY TRIPTANS I TAKE TO STOP THE PAIN EVERY 2 MONTHS. IT REALLY HELPS ME & HIM MONITOR WHAT'S GOING ON WITH THE 10s DOWN FROM 24 TO 22 IN LAST 2 MONTHS. DOESN'T SOUND A LOT BUT EVERY DAY WITHOUT ONE IS A BLESSING.

    I HAVE A 2 TODAY BUT IT'S MY FAULT. GOT TOO TIRED PAINTING & FELL OFF THE LADDER ONTO A CONCRETE FLOOR. THANK GOD I DIDN'T BANG MY HEAD BUT IT'S STILL LEFT ME SHAKEN & BRUISED.

  • Well I'm glad your neurologist is taking your headaches seriously and I am really pleased his strategy is working for you.

    My neurologist says theres nothing about the tumour that will cause the headaches try a triptan (already got those) and paracetamol, (I use plain basic uncaffienated, and tramadol). Asked about possible 'bounce back' headache from pain killers and told not in my case(?), and he is now suggesting a beta blocker which I'm not to keen about.

    Can you possibly give me a guide to what the caffiene free plan is, does that include leaving tea and coffee aside, only I think that one of most debiliting problem I have is the constant headache. Even on the odd day when I don't get woken in the night or wake up without a headache I know that within about 2-3 hrs I'm going to have one. The worst ones getting up there with kidney stone pain (if you haven't had kidney stone I can seriously recommend drinking plenty of water so NEVER get one) and most days ,if compared to the full blown migraines I used to get years ago, they are up there in the 7+ mark.

    On a more possitive note, I've recently had an increase in one of the epilepsy drugs I take and that seems to have helped reduce the headache levels back to about 4 on a bad day and down there at a 2 on a good day, despite them being 'nothing to do with either the tumour or epilepsy', strange.

    As I say great news for you and long may the improvement continue.

  • I have suffered headaches all my life. The caffeine free means all caffeine, i.e. no tea, coffee, chocolate, or any derivative, e.g. chocolate cake, coffee cake, etc.; even J2Os have caffeine in them. The good news is that white chocolate does not, nor does the 7Up range, nor Fanta Orange. The latter confused me since Coke, who make Fanta Orange, are renowned for putting all sorts of poisons in their drinks. I am not allowed any form of pain killers either, since even the ones that say do not have caffeine in, do.

    I am on Topiramate for my migraines, 200mg per day. If this does not resolve my headaches I can go up to a maximum of 500mg, but I was hoping to resolve without such a dramatic increase. The caffeine suppresses most form of painkiller.

    You are allowed decaffeinated drinks up to two or three a day, but the issue with this is although the EU stipulates 1% of caffeine in decaffeinated drinks, some do rise up to 5%, and as an individual two or three rise to four or five so your levels creep up. I keep mine strictly to two or three per week, i.e. a treat when I go out.

    I do drink 3 litres of water a day and have fruit/herbal teas if I fancy something hot for a change.

  • Wow that's some regime but if works then it's got to be worth it. I see my GP tomorrow, a Neurosurgeon in December and also a pain management programme in early December so I will run this option past them before I try just to make sure I'm not going to confuse the issuse with the epilepsy, tumour and other nerve related problems.

    Thank you so much for taking the time to respond to my post as it has certainly given me another option, drug free and from your results, pretty effective.

    I hope your improvement continues and will let you know if the option is open to me and if so how I get on with it.

    My wife, reading over my shoulder, has just laughed at the daily water intake as I sometimes struggle to get in 2 litres a day to fend off the kidney stones lol.

    Once again many thanks for your response.

  • I have a glass measured out so I know how much it takes, and simply take one glass an hour. It gives me a break from the computer at work, although between you and I, I need to call at the little boys room before filling the glass with water again. I work seven hours so get through seven glasses. This equates to three litres. Everything else, like the tea (usually lemon and ginger) at lunch break is a bonus. The difficulty is when I am off at the weekend.

    Topiramate has a risk of causing kidney stones, so the water helps ensure I don't add complications to the process. Only 5% of the drug enters the blood stream so the other 95% needs flushing through your kidneys.

  • Regardless of the the caffeine intake which I have already started to try and reduce I will definitely up my water consumption in an attempt to both ease the headaches and help prevent future kidney stones, although I was recently discharged from the urology department as now, after 20yrs of producing the blighters (4 yrs ago ending up with serious kidney infection due to a stuck stone resulting a stent to by-pass), have been declared free of any sign of kidney stones or developing stones. Nor THAT is good news!

    Having been a lorry driver formany years the extra amount of liquid was avoided, because of the frequent liquid disposal problems (hard to park 44 tonne truck on street corner) and a high caffeine intake was virtually compulsary to maintain the alertness levels of long driving periods. The epilepsy has solved that issue with permanent removal of HGV license and, according to last neurology review, the loss of my car license also likely to become permanent. Probably a good thing for other road users, so you can sleep easier and feel safer on the roads.

    Extra trips to the little boys room would be an added bonus for me as it's up a flight of stairs so the additional exercise is, apparently, good for an expanding waistline. Although probably not so good in the event of a seizure but life is full of risk, it's what makes it so exiting and worthwhile.

  • The comments made me laugh, but the loss of the loves of your life (including the waist-line) is harsh. I had to give up judo (am a black belt) and swimming (pressure in the water), although I am OK driving, providing I swap drivers if I get to bad a headache. Luckily I get plenty of warning. I have learnt to love what I can when I can and say "such is life" to the rest. I am still convinced I look like a twenty-year-old, it is just my internals that don't feel like it. Good luck with life, it is good knowing I am not alone.

  • I'm glad I've made you laugh! I find that laughing and humour are the best medicine, making me feel better all round.

    Losing my licenses was a massive loss but the plus side is I can now shout and critisize my wifes driving, speed, choice of parking spot etc. etc. the same way as she used to berate me lol. It is true, 'What goes around comes around lol', oh and of course the other plus is I get my bus pass early!

    I've always had the mental age of a teenager and probably forgot to slow my life when I should have, but hell at least what ever comes my way I know that what's behind me was worth doing and FUN!

    One of the best thing, like you, is that on finding this site and the Epilepsy Society site is that you realise that a) you are not alone b) there are people out there that can truely relate to your issues and c) unfortunately there are people out there who are far worse than I am so that I can re-evaluate and class myself as lucky.

  • Keep up the laughing.

  • As long as don't laugh too loudly and give everybody else a headache I'll be fine..... Hang on perhaps I've got a plan now to help others around understand, mmmh! Mind you having been a drummer in various rock, blues and covers bands from 16 - 58 I guess I've already done that to the point of overload lol. No longer play as gig before last (about 2 years, or more, ago now) my grip whent AWOL and I did an impersonation of a knife thrower with the sticks, people ducking and running for cover every where. Still seemed a bit of a bonus for the aged in the audience, they collected them up to build their own zimmer frames and supports for their garden plants (I use them for paint stirrers).

    I have, what some say at times, is a bizzar sense of humour (mostly usually at myself I hasten to add despite the above 'zimmer frame' comment) so it's not always appreciated.

    Still at least I haven't had a humour by-pass yet.... now that would be truely awful!

  • Now humour I think matures with age. I see the funniest things in all sorts of situations. At a friend’s funeral, my father looked at his watch and said, “She’s dead on time.” I did everything I could not to laugh. My father just looked bemused as if he hadn’t said anything out of the ordinary. On another situation my boss rang and said, “Where are you? I replied, “I am in my car.” I did have a car kit so was driving legally. Now that is my level of humour, and some people don’t appreciate it, but I think it is hilarious. After some persuasion I did explain to my boss I had just passed Gretna Green, and would be on time to pick him up from Glasgow Airport.

    As an aside, my daughter got to grade 5 in drums (rock school), grade 5 in piano, but has decided to concentrate on her flute. She is going for grade 6 next.

  • I love that your humour is alive and well, unfortunately I never had the opportunity to wind my boss up about my location as the vehicles were all fitted with tracking devices accurate to within a few feet, although I could always just stop and report I was on a statutory break when actually I was delivering (they weren't always aware of postal address of return loads just town or area.

    I'm glad your daughter is taking mulitple instuments. When I started to play drums there wheren't such easy opportunities to take formal training so it was turn the record player up really loud and play along till I got it fairly right.

    Some people might be surprised someone studying drums would also study other instruments, but I think it is vital to have a real "feel" for music. I've played (badly) violin and cello and fairly competent rythm guitar, although at one time I was told "As a drummer you make a bloody good guitarist, but then as a guitarist you make a bloody good drummer". Confused? So was I, but then I am a drummer.

    On that subject my son, far is better than I am, trained kit drums at school, also to grade 5, but frustratingly gave up and joined the Navy. Not too sure what that say's about me.

    My daughter also learnt keyboard to a more than acceptable level then just stopped playing,bit of a pattern forming here. No stamina these youngsters lol.

  • Well done for you caffeine free diet. I must say, I have tried to give up caffeine after 3 o'clock to try and make me sleep better. I most of the time make the night, but I unfortunately always wake up a few times, before dozing off again! Hope your head cold is better soon!

  • Hey ..A man with a plan...liking the having a strategy part, that's good and it looks like it's paying off :-)

    I can really tell on the days I don't have caffeine, yawning all day!

    Hope that 30% increases very soon

  • I got very ill (weird fever sort of flu?) November 2012, was in bed not eating, couldn't read or do anything just in complete haze and sleeping on and off for 2-3 days. My brain's been worse ever since. Think we really need to try avoid bugs, getting ill when already brain-injured can damage us more. That means avoiding busy places and breeding grounds like public transport, benefit offices and such. But we often can't. Post-viral syndrome? Encephalitis? Already lost bits of brain so affects us more? Feels like.

    I took myself off coffee (only ever had it at breakfast, never later in day than elevenses) for 6 months because after ABI brain/body into overdrive and terrible insomnia. But it made no difference. I remember my first coffee after all that time: delicious. Oh and I lost one and a half stone in first 2-3 months, dramatic. Told GP but he decided not to note it in my records. Now know our metabolism goes haywire/speeds up after ABI (not always?) and GP should have taken that as another sign (he ignored all the rest and all my questions like did I have a stroke/TIA) that I was telling the truth and my brain was injured. Why's he still a GP?

  • I think the biggest problem, with any type of brain issue, is that the symptoms mimic so many other conditions that they are not always picked up, unless they are major sudden onset problems, i.e. brain anurism, major stroke, really aggressive tumours, and I think we sometimes are a little harsh on GP's who may not have the specialist knowledge or brain specific training required to diagnose them. Plus they have to deal with an extreme range of illnesses with limited time and huge numbers of patients each day. For you or I as patients it can be frightening that it's not been picked up as early as we would have liked but even specialist neorologists are also mislead at times by the mix of symtoms which seem, to me at least, are extremely individual to each patient and don't fit an easy fixed pattern such as runny nose, cough and sneezing with a common cold or flu.

  • Mine all started immediately after op,there on waking including very damaged throat,serious vision changes and brain not working.Told him lots,no way he couldn't have hear/understood even with my even more severe then muddle! And jerky walking, very bad memory problems, told and asked so much,loads of appointments.

    BUT: he believed hospitals' lies, on phone = he refused to tell me what he was told) and in letter from consultant surgeon - well actually from his insurers (written in solicitor-speak and after they (and all and sundry) had got hold of my med records. I did form to get them Dec 05 but was made to wait 6 weeks til they'd been edited for me. Same with GP records, odd delay then when I saw (and copied them) was SO shocked, my questions not noted nor the massive number of symptoms I'd told him. And he wrote opposite of what he'd said when I'd told him keep it all private,not tell hospital stuff about me he said 'that puts me in a difficult position' but wrote 'will do as best can'. Was angry,shocked and so upset when I read them, why not reflecting my appointments?

    I assumed he had written all properly but was then forced to edit and the first time after that I saw him I said 'was it a lot of work?' (to prepare them for me, said I've seen my notes now) but as usual he didn't answer and just looked at me.

    So no, there is NO way he could have made a 'mistake',nor the locum I saw that summer - who again just referred me to mental health - after terrible experience of 'counsellor' right at start organised by guilty hospital/PALS, no info or choices given to me and they her 'client',me 'the case' to interrogate, 'find' other stressors and make out my history 'showed' I was useless, had dysfunctional relationships and I was obviously wrong about it all. She and things she (and so many others/wrote/said) said still hurt so bad and replay. Can't stop it.

    And then a different GP in the automn: did 'neuro' tests but said normal. Her notes blame me for 'choosing' no neuro referral. Too much to say. Try to block all this out but can't, follow me wherever I go and whatever I do.

    Too late for me, my life destroyed and I tried so hard to get the truth but failed. Tried so hard to encourage changes but think all I did failed. To know you're injured, physically (massive terror but short then survival), but then emotionally destroyed over & over BY CHOICE by so many people in so many places over such a long time hurts so much more and destroys your very soul/being. All I believed in was false. My reality wasn't real. Everything I knew wasn't (and isn't) true. I wrote so early on that it felt like I was being punished and it still feels like that.

    Sorry, I've gone on, forgive me. But there is NO way that GP plus the locum, plus other GP,plus first out of area hospital plus being sent to coventry at second when I told the truth, silly silly me. And the nasty 2 men when I had barium swallow, so awful. Too much pain inflicted, can't all be 'by mistake'. So many times they could have decided to act as should but chose not to.

    And I think mental health and 'somatisation' very much to blame. In my opinion that is most likely a lie and doesn't exist,just that right tests not been done or if have (as in my case) the idiot doing them too stupid (or scared?) to see/report properly. Shouldn't be allowed to test then = does more harm.

    Sorry, touched a nerve, spewing it out, sorry. Need to go talk to psych, been trying talk about all this from start but never allowed to. Explain WHY I feel so depressed and how/why others shouldn't judge my reality through their distorting spex/biases. Destroys so m,any not just me. And I feel scared of everything now, so unsafe, can't trust but silly me I forget then do/try/take risk. I am SO stupid, hate myself. Learn forget learn forget... how am I meant to improve? Lost my confidence, can't rely on me,lost me. Maybe I don't exist?

  • I am not medically qualified so can't really comment on your specifics, all I can say is that if you are offered any form of councelling grab it with both hands.

    In a previous period of my life I suffered from severe stress and anxiety problems and luckily I had a very understanding GP who sent me to a stress and anxiety managment centre where, in group sessions, we were taught, in class as it were, positive and practical techniques that would help us to a) relax and b) how to prioritise our concerns so that they were easier to cope with.

    Unfortunately the situation I was in at the time and which was causing the problem deteriorated at an alarming rate which, despite the techniques taught, lead to a period of depression, severe enough that I actually contemplated suicide, in fact I got within a hairs breathe of being sectioned, again I sought help from my GP who referred me for councelling. The very first thing that the councellor said was "I can't solve you problems, what I can do is listen with an unbiased ear to your thoughts and give you strategies to cope with them". That is an honesty that I appreciated. The thing is, as the councellor pointed out, that for the sessions to be successful for me I had to put some work and commitment into the sessions myself and be TOTALLY open and honest with them about my thoughts and feelings.

    The important thing that, I think, you need to remember is that, despite the darkness that is invading your life at the moment, the REAL you is still in there some where and if you can accept proffesional help you will be able to find that person again.

    If your depression is so bad please don't think that you can't talk to somebody. It would appear from your post that you have lost faith in the medical profession, so how about the Samaritans, they are there to listen to you, completely confidential, totally unbiased, totally non judgemental and trained to understand the needs of many different problems and can point you in the right direction for further help.

    I hope you have noticed that I haven't used the platitudes often trotted out to people with depression "pull yourself together", "look to the positives", "you're stronger than that", "your just full of self pity, snap out of it". Having been there I know that those comments actually make thing worse rather than better. If you could actually do any of the things that those comments suggest, you would have already done them.

    My advice would be to please seek the proffessional help and if you don't feel confident to do that contact the Samaritans. Having been deeply clinically depressed myself, I can tell you it can be a life saver (in my case literally) and help you find the real you again.

    This post won't help with your medical problems but I just hope it will help you to see that, if you talk to the right people, there is hope, help and comfort available to you and there is definitely some glimmer of light in the darkness, no matter how faint that is, even if you can't see it yourself. Talking to trained people WILL help.

    There are people there that can help you find both the light and yourself.

  • Hope lost. Talked out. No words to express the despair, mega mega constant stress and utter desolation. Done the rounds, just get sent somewhere else. Do this do that = but I can't. utterly exhausted. worn out, but I was several years ago, everyone knew but got moved on/dumped over and over again. Feel so so unsafe, am, but nobody cares. So many of my things fiddled with, 'lost', broken and me broken into little bits. No glimmer anywhere and believed me I've tried. Sick of trawling from one 'mental health professional' to another. Don't know who 'right people' are. Shaky and heart going, dizzy going round in circles and me not clever enough or strong enough to think of anything at all. Why don't people understand this? Keep saying not clever enough but that denied too. Feel really really ill. Tpold yesterday to go back to see psych i saw. Felt pointless, try again? Worn out with trying. Made me very run down and ill. I'm useless, rubbish and complete failure. The light's gone out and I'm gone.

  • That's obviously not true because people care about what happens to you. I do or I obviously wouldn't reply to your post!

    Please at least try the Samaritans help line.

    As I said in my earlier reply if you've lost faith with the health care system then the Samaritans will listen and advise.

    Please trust me when I say that they can turn the light back on.

    I told you in my earlier reply, I've been where you are, the world black and desolate, no way out, people either not believing in you or putting you down as a waste of space. I've quite literally sat in my car and thought about driving flat out into a brick wall or over a cliff. It is NOT the answer.

    I was tired, ill, partially incontinent (bowel condition), on nearly 30 tablets a day of various meds, steriods, blood pressure control, cholesterol control, anti-depressants, stomach anti-inflamatories, others to conteract the side effects of the rest etc. etc.. It was a bloody nightmare and I still had to try and cope with the problems that were causing the stress related conditions causing the need for the meds. I was desperate beyond belief, not only was my health, my home and family under threat so too were the homes and family's of another 8 people I was directly responsible for and god knows how many people of the firms I dealt with.

    I do know what pressure is and I'm not trying to compare my old or current problems to yours, it's not a competition to see who's worse off or who's got most the problems, its about seeking solutions and help.

    I didn't believe it at the time but with help and PROPER advice I did get through it, it wasn't a quick fix, it took a long time, but I did make it and believe I am stronger for it.

    I know that if I need it there is help there just waiting for me to call.

    There is help out there for you too, don't give up on yourself.

    The way I look at my turn-around is that I WON, THEY lost!

    Please, Please try to get help again. The Samaritans I keep on about, but if you have any religious beliefs, of any faith, you could turn there. They can all give you the emotional support you so desperately need and help you find the strength to win through this. It can be done.

  • Thanks.Been awake since 5am (less than 5 hours sleep), freezing cold and exhausted. No, no religious beliefs, no faith in anyone or anything and not in me: I fail at everything I try to do. Exhausted trying. Trouble talking often but when overtired can't think properly and sometimes can hardly talk at all. Sick of being told I must, me, try find solutions, can't or would have. Repeat, I'm not clever enough. Rang Headway helpline, told to go out, derr: hard enough anytime but when this tired no way, why can't people understand? Got to try rest/sleep (good for nothing as pretty much always now) but OK will try samaritans. Have before but can't remember what I/they said. I don't believe there'll ever be an up. No, I know,not a competition (another things that replays,my GP said that when I talked about my sleep problems), allthat stuff won't stop replaying year after year. Brain wiped. But thanks all the same.

  • I hope my last post has help you some and I am truely glad you will try the Samaritans. It seems to me that you are a little like me in brooding and repeatedly going over things in your head time and time again.

    Luckily for me I had the support (although many years ago now, probably 15 plus) from the anxiety/stress management clinic and the councelling when really depressed so I am better able to cope.

    Remember that although they may not show it and say just about the worst thing possible when trying to to give you advice, the majority of people do care about their fellow human beings and that includes YOU!

    I believe the samaritans will be able to give you the advice and comfort you need.

    Take care and all the best wishes with thelp you seek.

    Pleease feel free to vent here if you wish.

  • Hi Johnny-One, Seems like your thread got hi-jacked and disapeared in completely the wrong direction, sorry.

    As for the caffiene, I'm still waiting to see consultant and haven't as yet given up completely but I have reduced the caffien intake and replaced it with good old tap water and it seems to be helping a bit. Also around same time I had an increase in Lamotrigene dosage, which in the past has also helped. Having said that the improvement withe reduced caffiene has been better than with just the med increase in the past.

    Hoping your plan is working well for you and that the headaches are still improving.

  • Overall things are going well. I am still clinging on to 30% no headaches, but am hoping for this to continue on an upward movement. Not a good journey home today though. My journey is 19 miles and is normally three lots of 12 minutes. Today it took 2.5 hours of driving due to accidents and a change in road work priorities! A lot of frustrated lorry drivers, car drivers and bike drivers trying to weave in and out. I took a 30 minute comfort break and a herbal tea whilst doing a crossword, before re-joining the traffic may-hem. I am too laid back nowadays to worry about traffic jams. I had a good chat with the people in the Costa Coffee shop and had a taste of their Mint Humbug ... naturally caffeine free.

  • I definitely go with the 'drink water' comments. it helps cleanse the liver, which is where the blood goes to the brain from, so we are sending the grotty chemical residues from meds docs insist on giving us, straight into our brains. also my meds pharma instructions said to take with large glass water. how manyofus sip just enough to get the pill from mouth down our throats only?

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