@JohnW2. You sound as if you have a level of familiarity with drugs?
Yes, "a level"
However, even if I have the knowledge, and even if I knew enough about you to offer 'advice', you really should not be looking to a complete stranger you have stumbled across on the Internet to offer advice about your medications. In any event, it appears that you've already had advice from four doctors, two of whom offer opposite advice from the other two, so I'm not sure that throwing a fifth opinion into the melting pot would really help you all that much.
What I can try to do is to summarise the facts and 'general advice' (much originating from NICE), much of which you are probably already aware ...
I doubt you read about my recently increasingly bad side effects, which I appeared to trace back to Atorvastatin, which I've been prescribed for a few years, for my cholesterol control. The most concerning side effect, which got progressively worse as time went on, was one of waking after a couple of hours sleep, restless, then the restlessness would progress to a sense of absolute panic, and terrible anxiety, while at the same time feeling desperate to lay down and sleep. Over-heated, I would go out in the garden, and just sit for maybe a couple of hours, feeling as if I was about to die.
As with all statins, the most common side effects of atorvastatin are related to muscles (pain, stiffness, weakness, spasms etc - but, very rarely, more serious problems). In the databases of reported side effects with atorvastatin, the nearest to what you describe are 'insomnia' and 'nightmares' (both reported as 'uncommon', defined as meaning that they are seen in less that 1 in 100 patients who take the drug), not quite what you've been experiencing. What you describe sounds a bit like a 'panic attack' (not a reported side effect of statins) - are they something you have experienced in the past?
I read a piece about statins possibly being the cause, so I stopped taking them on the 19th, since when I had one mild attack, then nothing. I advised the docs., two agreed with stopping, two suggested I carry on with them, but the recent problems they caused - I would not dare.
As above, I can find no evidence that side effects quite as you describe have been reported with atorvastatin, but that obviously does not mean that it's impossible that the drug is the cause in your case.
It's worth remembering that something between 5 million and 8 million people are taking statins in the UK, which makes it more difficult to determine what side effects are the result of taking these medicines - since if there is anything (unrelated to the statin) 'wrong' with a person (i.e.some other disease/problem), it's not all that unlikely that, by chance, they will be taking a statin at the time (8m is about25%over the over-40 population) - so the statin may therefore 'unfairly' get blamed! On the other side of the equation, if none of those 5-8 million people have reported possible 'side effects' quite like those you have experienced, that makes it pretty unlikely (but not impossible) that the drug ever does cause such a side effect.
In situations like this, one obviously wants to be fairly sure that the undesirable symptoms are actually be a direct result of the suspect medicine. Ideally, that is achieved by demonstrating that symptoms disappear when the medicine stops, and then re-appear if the medicine is started again (possibly repeating that cycle more than once). In your case, it seems that you have done the former (stopped taking atorvastatin) but have 'not yet dared' to re-start it. Whilst I can understand your nervousness/reticence to do that, unless/until you do there will be no certainty that atorvastatin has been the cause.
It is well established that atorvastatin is the 'first drug of choice' for cholesterol reduction, and even to provide protection against heart attacks/strokes etc. in people considered to be 'at high risk' even though they do not have a high cholesterol level - and this is very much the current recommendation of NICE.
The latest I heard from the doc., was that they might try me on an alternative form of statin. ....
In a situation like this, when there is a group of similar drugs, it certainly makes sense to try switching to a different one if there are any problems (of effectiveness and/or side effects etc.) with the first drug tried - since it's very common for individual people to have different experiences (in relation to either efficacy or tolerability) with different drugs in the group. There are a lot of statins available, and a number of sub-groups (atorvastatin being in the 'most powerful' sub-group), so a lot to choose from.
I also read that there are alternatives to statins, but the doc. said the alternatives were a bad idea.
... and I (and NICE) agree with him/her. There are quite a few non-statin cholesterol-lowering drugs around (many being the only ones we had before statins appeared) but they all 'have problems' (in terms of effectiveness, tolerability or safety), such that NICE recommends either that they are not used at all or, at least, only considered as a 'last resort' if all attempts to use statins has failed.
You probably don't want to be made to think about this, but in a situation like yours one has to remember that one is not taking the medicine 'for fun' but, rather, to hopefully reduce the risk (or delay until the distant future!) of death or life-changing illness as a result of heart attack, stroke or other vascular catastrophe. Therefore, if the drug IS the cause of the unpleasant symptoms), some people have to consider whether or not they regard some degree of 'unpleasant symptoms' an acceptable price to pay for that reduction in risks of death/disability - a decision which will obviously vary considerably between individuals, and also obviously dependent upon the nature and severity of the 'side effects'.
Have you any thoughts on the subject, please?
As said, I can't 'advise' (that's for your doctors), but there are a few 'thoughts' above
Nervous though you naturally are, it would be nice to start with confirmation that the symptoms stay away whilst you're not taking atorvastatin but return if you re-start it - and if it did return (confirming the causal relationship) then it would make sense to try a different statin. I find it hard to see why any doctor would be unhappy or unprepared to do that.
Since you seemingly have four doctors who are currently disagreeing about how to proceed, I would be tempted to suggest to them that they might 'get together' and formulate some sort of 'consensus' advice, even if somewhat of a compromise - it really would be neither sensible nor fair for them to expect you to make the decision between their differing views!
If you want to pursue this discussion further, you might prefer to take it 'off-list' (i.e. to PM).
Kind Regards, John
