I don’t know if anyone’s been following my saga with Trigeminal Neuralgia (TN) and Carbamazepine. I had horrible face pain when speaking or eating, went to my GP and he prescribed Carbamazepine, standard drug for TN. It made the pain a lot better but made miy walking and bladder control much worse, after a single dose. I was very scared, wondering if it was the drug or whether all my symptoms were part of a relapse. I googled ‘multiple sclerosis’ and ‘Carbamazepine’ and found a British Medical Journal article describing Carbamazepine making MS symptoms worse. I spoke to my GP about it, he was very sorry about what he’d done to me and, at my suggestion, prescribed Gabapentin instead.
Anyway the point of this post is as follows. When I told a friend with MS this sad story, he said ‘I would never take a new drug without googling it first’. I thought, well I never would NOW and I wish I never had. I thought I would share on here and hope that someone gets a benefit from my horrible experience.
Thanks Sewingchick I always google my symptoms and medications. I learned this is required the hard way.
I’m afraid if I always Googled first, and read every adverse incident there had ever been, I’d never take anything.
I’ve learnt not to read patient information leaflets, either, for the same reason - I’m sure to see something that scares me off taking the drug. Or take it, but become hyper-vigilant about the side-effects, and start freaking about the slightest thing.
I do, however, keep them carefully, and IF I notice anything unusual in the days or even weeks after starting, head straight for the leaflet, and see if it’s listed as a possible problem, and also whether it’s listed as: “Tell your doctor immediately!”, or: “Minor problem, should pass.”
It’s remarkable how few side-effects I seem to get, when I haven’t been trained to expect them, by reading a list of things I’m supposed to look out for. Of course, I know that I might, as you did, get a side-effect that’s 100% real, and not caused by preoccupation with side-effects! But if I Googled all the time, I’m sure I’d have plenty more of the latter.
Tina
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I’m sorry that you had such a bad reaction to carbamazepine. I don’t like the straight sort - I take (for a number of years) tegretol slow release. This sorts out my TN without sending my mobility down the drain. I tried gabapentin for a while but it made me very sleepy, I prefer Tegretol, we are all different.
The thing about side effects - they MAY happen but it doesn’t mean that they will but with MS it’s as probably as well to know that the effects could mimic a relapse. So many people get relief from TN with carbamazepine that it would be a shame if they were put off trying it
Jane
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I googled the effects of the steroids I was given and shouldn’t have done. I ended up waiting for the side effects that were listed and worrying about them. In the end I should have just taken them and looked up a possible effect as and when I got one. Turned out the effect far outweighed the side effects which were no where near as bad as I had read.
I think everyone will have a different effect whatever the drug, but next time I will just take the drug and see what happens to ME, and not worry about what MIGHT happen!
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Reading the list of possible affects put my sister in law off her recent medication then she endured pain I thought that odd. I take all my meds and change them if they dont work.
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For Jane - or anyone else who knows - do you mean that you know people with MS and TN who can take carbamazepine without worsening of MS symptoms?
Also, is tegretol slow release carbamazepine or is it something different?
Tegretol is carbamazepine - it’s just the company name. The full name of the tabs I take are tegretol prolonged release.
I have MS and TN. My MS is not made worse by the tabs I take (I’m SP though so who knows?) I have seen posts by lots of MSers who take carbamazepine so I don’t think your experiences are universal
Jane
I never google for drugs.
I was put on Tegretol Carbamazepine on slow release for my Transient Epileptic Amnesia as its also used for seizures.
Within 3 days I was literally falling over, lost my balance completely, could hardly function and felt awful. It was like i was drunk and not in charge of my life, i tried to struggle with it for 7 days, this was on the low dose. My GP took me off it in the end as i was black and blue.
We are still waiting for my neurologist to decide what to try me on next. The effects were horrible for me. Was it because of my MS I have no idea. It did actually say when i finally read the blurb in the box, if your on blood pressure tablets do not take without advice of doctor. Well i am on blood pressure tablets a beta blocker, so what is that, i dont know.
I think Google is no bodies friend. I think quite honestly it can do more harm then good sometimes.
I know lots of people with MS who take tegretol and have no problems with it for their TN.
l suffered with TN - for years. lt was a nightmare. Back then the doctors did not link it to MS - l had to see an Ear/Nose/Throat specialist to see if he could fathom out the pain in my ear/face/neck. And the tests were not very pleasant. l was in such agony with the TN - l actually felt suicidal. l really felt like shooting through my ear - how dreadful is that.
lt was not until l started taking LDN - that at last the TN went - that was 8yrs ago.
Hi, have to say I agree with Tina on this one, you need to try meds to see if they help.I’m on Methotrexate, the side affects are horrible, had visions of liver failure, hair loss, you name it, its on leaflet!!! I never google though, did it once before I was diagnosed with Scleroderma, I convinced myself I had been bitten by a poisonous spider, pretty extreme as I havent been abroad for many years!!! Even though I have to have bloods every 4 weeks the benefits far out way the side affects, if things change I’ll stop them & try something else. Tracey x
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This has turned into a thread that has been very interesting for me. We have people posting from every point on the spectrum. That is: people who always google their drugs before taking them; people who read the info provided with the drug but don’t google; people who don’t read about the side effects in the info provided for fear of imagining they’ve got them; and people who don’t even check whether the information leaflet warns against taking the new medication alongside something they are already on. I can’t really understand the last set of people but each to his/her own.
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The thing to remember is, we are all different, we react differently to medication. If you googled for example, paracetamol, that too has side affects which could potentially cause harm, but most people dont think twice about taking them. Anything new (to us) & not " over the counter" quite rightly, causes concern, sure if you discussed them in depth with your ms team, they will advise you appropriately & find whats best for you, they are there so you can raise your concerns. Not all the sites on google are genuine Tracey x
The British Medical Journal is genuine. I went to see my GP about the pain in my face. I also sent an email to my neurologist - I’m still waiting to hear back from him. My MS nurse is impossible to get hold of at the moment but when I did talk to her about neuropathic pain in a different bit of my face, months ago, she said it was nothing to do with MS. I’m happy if other people can ‘discuss things in depth with their MS team’ but the idea that I am going to wait several months to get help with severe pain that comes every time I speak or eat is not realistic. I’d rather look on google and use my intelligence to work out whether what I’m reading is likely to be reliable.
and people who don’t even check whether the information leaflet warns against taking the new medication alongside something they are already on.
I used to check all the time, and when i queried contradictions to my GP I was told we wouldnt have put you on it, if there was a problem for you.
I also asked about the blood pressure tablets and tegretol and said to my GP could it be that, that is making me feel so ill on these tablets, and she told me, your neurologist would have checked before giving you the prescription.
So that is why i dont bother anymore whats the point.?
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Just in case anyone was wondering, 300mg a day of gabapentin has pretty much sorted out my Trigeminal Neuralgia.
I still can’t use an electric toothbrush on that side of my face without really severe pain. I also get pain if I shout at the kids - or even tell them off with real passion. For example, I found out this morning that my eleven-year-old thinks that you dispose of the cardboard inner tube from toilet rolls by putting it down the toilet - when he persisted with this view in spite of my forceful arguments to the contrary, I found the TN coming back. So it may be that I am going to be a better mother because of all this - there’s always a bright side to the darkest cloud.
My bladder control is now excellent and my walking has improved from its worst (thank goodness). But I am on 0.3g a day of biotin now, so not sure what’s doing what…
lt seems that Biotin is helping several people on the facebook group with bladder control - and for retention - which must be distressing also. And of course - there are the guys who said that they had ‘return of sexual function’ after years of thinking that they were never going to be able again. And this was only after a couple of weeks. lts these small improvements that make such a difference to us. l am much more energised and walking better and safer. Touchwood.
Me too. Everyone has his/her own approach according to temperament and personal experience.
In my own case, I tend not to start a new drug unless I’m desperate, happy to try anything and in no mood for small print!
Alison
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