Medication - Tiredness - Ill - Diet coke - I don't know what to do
I believe I am overmedicated and have been since the age of 16. I have tried talking to every doctor I have seen in the last year (since January 2009 I've been saying this). The medication I'm on makes me so tired. Every doctor I see says 'wait until you see the specialist' then the specialist says 'I'm going to refer you to another specialist' and the cycle continues. I am on my last tether here, because my friends who are medics keep going on at me about my diet coke, that the aspartame can kill you, and I've done the research and yes it can if you drink enough... well I drink around 25-30 cans of diet coke a day, no kidding. I'm spending a fortune on it, and even with this caffiene I frequently fall asleep in lectures and seminars at uni. When I don't drink the caffiene I sleep an extra five hours during the morning until I've drunk three cans of diet coke I can't do much because the tiredness is literally crippling. I feel like I am in a vicious circle here, because I can't see the diet coke stopping without the tiredness getting better.
It's ridiculous that I am on this medication, as I was put on it for various diagnoses that have since been cleared. I can see a direct correlation with my caffiene consumption going up the same time I was put on one of the sedative medications (clomipramine) at 16 (I was previously on many antidepressants before this from the age of 14), I'm 20 now! I don;t even have what the medication is prescribed for.
I'm at the end of my tether. I can't get any doctor to agree to lower my medication anyfurther (one medication has been lowered by 25mg) they won't consent to taking me off or lowering anything and it's getting to the point I'm ready to do it myself.
To make matters worse I've been physically ill for the past 8 weeks, they think I have glandular fever (awaiting test results) so that's making me even more tired. My neurological condition also disrupts so much and mkes me space out and it's just all a big mess right now. :(
I'm on Abilify (antipsychotic), Clomipramine (tricyclic antidepressant) and Amitryptaline (tricyclic antidepressant) as well as prn stuff that doesn't matter.
hmm.. GPs often dislike "meddleing" with medication... as mine puts it they are "amatures whereas the psychs are experts"... but still if the side-effects are this bad and messing with your ability to have a normal life you'd think that they would be willing to do something...
I guess you could try just demanding that they do something... point out that you've been waiting and keep getting referred over and over and just cannot continue this way.
These are psychiatrists not gps, they keep referring me to different sorts of neurologists/neuropsychiatrists as it's thought I dont have - have never had - a mental ilness now. But I'm still seeing psychiatrists for support and I'm so confused. Sorry, thanks for your reply, I have been demanding but I guess I'll just have to keep at it.
How would you feel about getting an advocate or PALS or someone/thing like that involved. I have a feeling that getting an outsider to put on pressure may make them take more notice of your wishes.
"Everything is possible through Christ, who gives me strength". Phillipians 4:13
That's horrible :( I'm sorry to hear that. I sometimes think the side effects that medication causes are worse than the illness itself, and credit to you for continuing to "comply" with it despite such frustrations and unpleasantness. Where are you with the specialists now?
Those are both great ideas, I don't know why I hadnt thought about putting it in writing or getting an advocate. You two are geniuses! Thank you so much.
This sounds a really difficult situation for you and I hope you get some answers soon. With regards to you not having/never having a mental illness I'm assuming you mean a primary organic illness as opposed to reactive illnesses such as depression or anxiety caused by the trauma of having an undiagnosed condition and innapropriate therapy/hospitalisations, because it would be incredibly bizarre to have you on all these meds which aren't treating anything at all and if that is the case I think you are being incredibly patient and stronger than most people would be in that situation, I'd have probably stopped them on my own.
Do your psychiatrists know just how badly these are impacting on your functioning? I know how easy it is to get into a negative cycle with caffeine when on medication that is sedating, though not to the extremes that you have. And I know how excessive tiredness can really impair you when you start at uni and everyone seems to be go,go,go all the time!
Is there any way you could organise to allow yourself to have some extra rest by rescheduling your work load. If you are struggling to meet deadlines at uni, you are more than entitled to ask for some extra time, as you would be for your disability on it's own, or having glandular fever on it's own, the two combined means they definately should be understanding.
I guess whatever happens it's probably more important for you to not stop taking tablets without medical advice because of your temporal-lobe epilepsy, I know medication withdrawal can cause fits.
Hey :) Just thought I'd say, I'm completely addicted to diet coke as well. If you need the caffeine it might help to switch to something a bit better for you, sainsbury's do their own brand of diet cola that doesn't have the nasty sweeteners in, its just sucrose (I don't know much about it but I don't think its as bad for you) and its cheaper as well, I buy it when I cant afford the real stuff lol. Also make sure you look after your teeth because the fizz isn't good for them. About being over medicated, I was in the same position a few years ago and I just took myself off them. I was alright at first but then had a major episode of paranoia so bad I couldn't leave my room. But when they put me back on the meds, it was just the one and I now feel much better than I did, so it kind of gave them a kick up the bum to get it sorted. Sorry if this is a little all over the place and hard to read, my concentration's a bit rubbish at the moment :) x
Rain that's fallen - I agree with others that writing or speaking to PALS may be a good idea, they can investigate what is taking so long.
Have you told all these specialist how much cola you are drinking?
Also - another idea is to write everything down, take a note of your appointments, when who with what the outcome was and also notes of your medicines, amounts, when from et al.
It might be that writing all this down and literally laying it on the table will make them see that this has been going on for an awful amount of time *hugs*
Wish I could help more, but I do understand what a fight the system can be sometimes.
If the Human brain were so simple that we could understand it, we would be so simple that we wouldn't.
No other suggestions, I hope you do ctc Pals or Mind, the situation you are in is ridiculous! you have been very patient for waaay too long.
Just wanted to mention the 'rebound' effect of too much caffeine...the more you drink, the more you will need it and round and round it goes....with all the SE's that caffeine can bring too.
But I understand the needing it too.
I hope you can get someone to finally do something to help you.
When I was on amitrptline, it made me super sleepy in the morning so I can sympathies with you.
However, not a long term solution but perhaps if you feel you really need the caffine could you maybe look at getting it from a differnt course than diet coke. For example Caffine tablets. Then you couldnt get the effects of the coke as you could take them with water. However, be careful to work out how much caffine you are getting as they have a relativly high amount compared with coke and you dont want to take to many as you will get bad side effects.
