Keeping on the Plan

Well I have been over a hundred days on the caffeine-free plan and I am up to 32% headache free days and I have got rid of the restless leg syndrome. All that through misuse of the drug caffeine (tea, coffee and chocolate) … not bad. The hardest time was the amount of chocolate I was offered over Christmas!

Well the two-monthly GP visit, which my GP was supposed to initiate did not occur; which was no surprise. So back to me to look after myself. I have wrote to both my neurologist and GP with an update on progress.

On the Sunday, 4th, January I upped my Topiramate to 250mg from 200mg which is my normal dosage, and has been for many years, and I went to headache free. My neurologist did say I could go up to 500mg over time. It did take me until Tuesday, 13th January to realise that I could not keep awake during the day. Please note the following is directly taken from the side affects from Topiramate … “Very common: More than 1 in 10 people who take Topamax … sleepiness … tiredness – seek medical advice if you experience tiredness”, and I am the one with two degrees and am a member of Mensa. So much for all intelligence and no common sense!!!

Anyway I am happy to say I am back to 200mg of Topiramate and today, Wednesday, 14th January, I am wide awake. I cannot believe such a small dosage could have such an adverse affect on me. I will continue to monitor the headaches and see if they improve. A good try though.

I just thought I would blog this as an encouragement for all those other sufferers who either want to try caffeine free, or use Topiramate, or for all those plonkers who cannot read the labels on their medication. The latter is to remind them they are in good company.

All the best for 2015 to all my friends.

12 Replies

  • Hi Johhny

    Well done sounds like you are doing your best to take control of your own future improvements.

    I think it was you that recommended Coenzyme Q10?? Anyway I have been taking it for over a month now, and initially I noticed I felt less tired, but unfortunately it didn't last and I am back to feeling exhausted all the time.

    I wondered whether my body has got used to the dose, but I am on the highest recommended dose, so I will persevere with it for now.

    I also tried vitamin B complex (not sure who recommended that) but unfortunately I started to get really bad headaches and the tinnitus got much worse. I'm not sure if it was the Vit B, but have stopped it for a while to see if things improve, tinnitus has but not headaches.

  • Hi Johny,

    Well done for stopping the caffeine-the chocolate would be the hardest for me! I do try to minimise it and have Decaf tea and coffee.

    I have Topiramate 200 mg for post traumatic migraine and post concussion syndrome and have daily headaches but the doctor told me that 200 was the max I could go to unless I was having seizures.

    I've been ok on 200 mg but seen little if any change. I think I'd be happy to be able to take a little more but I think I too would probably become tired. I have to nap midday already to recharge and because I'm tired.

    I think it's just a slow process for me( since August 13).

    Keep us informed how you get on :-)

  • For chocolate … you can have most white chocolates because they are made with cocoa butter and not cocoa solids. The caffeine is in the cocoa solids. You do need to check the labels and watch out for the ones that sneak in cocoa solids, although not many do. You can also have caramel, e.g. Caramac, but both of these are down to taste.

    For drinks … decaffeinated tea/coffee has, according to EU regulations, up to 1% caffeine; but some manufacturers have been known to creep up a little bit more. It is OK to go up to two or three cups a day, but anything more than that and you are building up caffeine in your body still. I limit my intake to one or two a week, usually a Costa (or similar) as a treat for good behaviour. I have been experimenting with caffeine free teas. I also know J2Os add caffeine to their drinks as a natural product, as do others! You are safe with all 7UP brands and bizarrely Fanta Orange. I take water mostly at work. The other issue with decaffeinated brands is how many chemicals they use to decaffeinate the stuff.

    My headaches were caused by bronchitis/pneumonia as a two-year old and again as a 41 year-old, but I was also in a 140 mph crash (I was doing 70 mph on a motorway but jumped a central reservation hitting cars coming on the outside lane of the other side of the motorway), and had a blackout whilst doing judo. I still got my black belt another day! I have suffered headaches everyday of my life, but am now managing to fight them.

  • A big ouch is what my head feels when i think of your crash!You've done well to be telling the tale and a black belt too well done!!

    I used to run a Costa coffee a couple of years ago when i was well - the job i had just before I got my new job then had my accident there a month after starting!I miss working at Costa!

    Two different beans in the Costa- Arabica and Robusta.( that's the strong one). Starbucks only use Arabica.

    I rarely have white choc im lactose intolerant so usually have dark with cocoa butter etc in.

    Have you ever used acupuncture for your headaches?

  • No I have not tried any alternative therapies. I have a friend (Karen) who was diagnosed Bipolar and had suffered many years with headaches. Recently she had an injection for her headaches, removing fluid from the tip of her spine and her headaches went immediately. She had been suffering headaches since the birth of her daughter who is currently doing her Masters in Mathematics at Lancaster University. Karen thinks everyone should now ask for injections, I am just cynical about everything though … maybe I have been let down by too many in the past.

    As far as the crash goes it was not my fault and the white van driver went to the next junction turned around and came back, owning up to causing the mayhem. I wrote off 7 cars and two lamp posts, but no-one other than the white van driver went to hospital that day. The policeman on the scene did not believe anyone could have got out of my Mondeo alive though. C'est la vie.

  • Although horrific it sounds like somebody was looking down on you that day and the other people too!

  • Hi Johnny, well done, glad its working. I stopped caffeine aswell after bi, def. helps headaches but I'm a chocaholic and always struggle with this. Wish Id known about the white choc before, could do with some right now! K

  • Tobeleroe is nice ... but a little of an overindulgence.

  • Very, VERY well done and good on you for taking control yourself. Doctors do what they can but we are ultimately we are the keepers of our own bodies and we are more aware of our own health than anybody else.

    Good luck and I hope the progress you have made thus far continues apace.


  • Thank you ... GPs are after all General Practitioners and they do the best they can in the time frames they have.

  • Congrats on the caffeine free, very impressed. I've tried to lay off it, which has worked cos my old craving for a cup of coffee has disappeared, so a thumbs up there.

    Tried tetley redbush with vanilla the other day and it's delicious! Weird tetley not making tea, but it clearly says it's caffeine free

    Oh my word, about your accident!!!

    Hi, by the way :-)

  • The Redbush + Vanilla sounds like a great tea … I have added it to my shopping list.

    I was not worried about the accident; I have had many ups and downs over my life and funnily enough classed that more as an up rather than a down. At the time I was doing 75 hour weeks, working all over Europe. It gave me chance to re-focus my life and tune in on what was more important to me. I only do 35 hour weeks now for work, and fill my spare time with much more enjoyable things. I have done some amazing things since then: jumped out of a plane at 3,700 feet for charity, climbed several peaks, wrote a book, had a poem published, volunteered for some amazing work, completed my second degree, the list goes on.

    Life grabs you sometimes and points you in a different direction. My headaches are just part of who I am, but it doesn’t stop me from living. It has stopped me from Judo and swimming though!

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