I am on Phenytoin(Epanutin) and have been taking it for 30 years.

[Clarence11]

Although it controls my epilepsy, I have now painful feet and legs. Doctors have mentioned it could be neuropathy due to long term drug Phenytoin. anyone else come across this.

[haydn74]

I too have been on Phenytoin for over 30yrs and find it controls it bvery well. Havenoticed that my feet are a bit numb and have tingling in my hands. These symptons are also in the list for Coeliac Disease from which i have as well, so maybe a visit to my doctor is needed

[Clarence11 in reply to haydn74]

Yes, that sounds a good idea. A doctor did suggest me coming off Phenytoin a while ago,but did not say why I should do that. So I stayed on it as like you it controls my epilepsy very well. I am waiting to see consultant to find out test results and see if he thinks that is what it is. Whether coming off Phenytoin will stop it I do not know. Hope you get on ok. My son suffers with his health when eating gluten etc and he too has tingling in his hands, but does not take medication for it as they have not diagnosed Coeliac Disease. Best of luck.

[willyoung]

Hi Clarence and Haydn, I've been Epileptic for 44 years since I was 11 years old and can empathize with the Phenytoin issue. A fortnight ago my Neurologist wants me to consider withdrawing the Phenytoin which he believes is responsible for Peripheral Neuropathy that began about 1 year ago. My daily regimen until last week was; Phenytoin 100 mgs t.i.d (3 times), Lamotrigine 100 mgs t.i.d and is now Phenytoin 100 mgs b.i.d (2 times) and Lamotrigine 100 mgs q.i.d (4 times). I'll have to see how the transition progresses, or not, with a view to adding another AED like Keppra.

Not having seen my Neurologist before he was surprised that I had to pay privately for a vitamin D test that proved "insufficiency" at just 34 nmols/L with the recommended level being optimal between 75-125 nmols/L.

I bought 360 x 5000 IU's soft gels, taking one daily to replete my level to 111.9 nmols within 3 months. Research will find many medical papers proving how AED's deplete our bodies of vitamins B & D and Calcium. I also supplement with a daily Calmag (Calcium/Magnesium 500 mgs to help with vitamin D absorption. If it helps, reference can be sought at Magnesium Essential to Absorption of Vitamin D & Calcium - See more at: nutraceuticalsworld.com/con....

By restoring my vitamin D levels I was able to disobey my GP's advice, to keep me on an antidepressant for 12 years, and successfully withdraw the toxic Prozac that my body no longer needed. Dr David Tanton makes a profound statement that should be heeded more often, "no one is drug deficient". In my opinion, and from my experiences, the problem in today's modern, stressful life is that intensive farming has destroyed the minerals and nutritional value in food and, instead of addressing our diet, we're too dependent on pharmaceutical drugs.

Kind regards, Will

[happy48]

Hi

Staying on the same medication for a long time can lead to worse side effects and can also become toxic, as in my case. I was taken off that drug and found another that was suitable for me. I suggest you come off it. You will probably find another that will be suitable.

All the best x

[Hidden]

I have had epilepsy for 40 years now. I have also been on Carbamazapine and Phenytoin for at least 30 years with no problem. I would rather stay on these too than change onto anything else and start messing up the system. I have maybe one tonic clonic seizure a month but nothing serious. I have tried Epilim and many others, but Phenytoin suits me and I won't change. I have muscle pain in the thighs occasionally, but not related to Phenytoin usage.

[Hidden]

Hi Clarence, I have had epilepsy for 40 years and been on Phenytoin for at least 20 years and more. Phenytoin controls my seizures, with the combination of Carbamazapine. I take Vitamin B, D, Calcium and Magnesium separately, as Mena-Cal 7 (Vit. D, Calcium and Magnesium). I do now get numbness in the feet but only occasionally and also believe this is a side effect of the medication after so many years. I will not change from Phenytoin as I would rather have control of my seizures. Keep us updated and all the best.

[Spikeysusie]

My mum has been on Phenytoin for over 50 years and has also suffered with sore legs, but as she has varicose veins this may also exacerbate the problem. I have been taking Epilim for nearly 20 years as it controls my night time only seizures extremely well. However I do suffer with not being able to lose weight and am always lethargic, I read something on this site about taking vitamin B12 and this started to give me more energy, then after a bout of illness took Metatone tonic which contains sodium, magnesium etc and immediately felt better than I had in years! Reading some of the above comments has made me realise that I have obviously been deficient in these vitamins and minerals for years, why don't the Drs know about this and tell you, the knock on effect is massive as I have lacked energy for so many years, I've been depressed, not exercised as too tired to, gained weight, been depressed again and all for the sake of some vitamins!!! Which people had warned me not to take as it interfered with AED's, so naff it all I'm off out to buy some today and fingers crossed from here on I will be much livelier and lose these extra pounds at last!

[trevor1954]

I was on Phenytoin for about 6 yrs. Then one day i came out in a rash,It lasted about three yrs. No one could find out what was causing it. I was under dermatologist at hospital, they kept taking samples of skin to test but nothing showed up. Eventually it turned out i was allergic to Phenytoin. They changed my drugs and within a couple of weeks of taking last one, rash disappeared. Dont want to be down but rash has just appeared again after about 8 yrs. I think i am becoming allergic to keppra. got to see specialist this morning.