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New Drug side effects

OliverHenry profile image
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I have taken Phenytion for many years and my Neurologist suggested Additional Epilim last year. I now find it much more difficult to stay awake and have just seen an entry on Google stating the two medicins should NOT be mixed together. Has anyone else taken the 2 drugs together and what was their side effect change, if any?

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OliverHenry profile image
OliverHenry
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willyoung profile image
willyoung

Hi Henry, I'm surprised the Neurologist wasn't aware of the interaction? But I keep reading that Doctors are so overwhelmed with their patient visits and paperwork that they have little time to read and research.

Thanks to the internet more and more patients are increasingly finding more superior knowledge.

I've been on Phenytoin since 1969 and Lamotrigine since 1987. After I reported tingling and numbness in my hands one Neurologist increased my Lamotrigine in June '13 then, four weeks later, another Neurologist gave me a 10 weeks Phenytoin withdrawal program as she was convinced it was responsible for my paraesthesia.

I was unconvinced and, like many, researched to find that years of Phenytoin use had depleted my body of vitamins B & D and Calcium & Magnesium. I had to pay privately instead of NHS.

I reverted to my previous AED regimen and added Enerex's Cal:Mag 500 mg daily and I've had one seizure since Xmas.

Please Google "global epidemic of vitamin D deficiency" and likewise for Magnesium.

An excellent article on "Coping with Epilepsy" illustrates the magnificent properties of Magnesium in preventing seizures.

Begin reading patients testimonies at coping-with-epilepsy.com/fo...

Kind regards, Will

Hi Henry, I have been on Phenytoin for about 25 years and more. Phenytoin has done me well for my seizures, but is taken with Carbamazapine at the same time. Everyone is different and everyone has different reactions. I tried Epilim but was allergic to just the first dose I took, and had read many reports on its interactions, etc. As Will has said, phenytoin depletes the body of Vitamins B & D, Calcium and Magnesium. I take MenaCal-7 for Calcium, Vitamin D & Magnesium, and I am supplied Vitamin B by the Govt. Hospital I am under as an Outpatient. I have now had epilepsy for 40 years and know my body... I will now not be used as a 'guinea pig' as I was in the past and have put my foot down. It can take many months and years to find a suitable medication or combination, as everyone has different side effects. Phenytoin also causes problems to the gums, but I would rather stick to it than take Epilim and cause allergic reactions. Keep us updated and good luck.

jane40travel profile image
jane40travel

I have taken both but not together. I thought you might be interested to know that when I came off phenytoin my depression lifted and when I came off epilim I felt much much less tired. The drug that I am on nowadays has fewer side effects than any of the other drugs I have been prescribed. It is called Lamictal

jules1973 profile image
jules1973

I was on epilim for twelve years and mixed that with tegretol clobazam keppra and a whole load of others with no effects taking epilim was like taking pills for nothing i am on tegretol and zonisamide which were ok but i had neurosurgery and well now i dont have seizures last one was last november the surgery worked five months and i have not even had one

Halful profile image
Halful

Phenytoin/Epinutin is an AED that scares me. This is because (back in 1973) I started seeing double and having to hold the wall to stay upright. After visits to docs ('you are depressed, have some anti depressants') optician ('you are seeing double but there is nothing wrong with your eyes, try a new pair of specs') I moved to Yorkshire and went to a new GP. He had no idea what was wrong with me a referred me to a neurologist. As I walked into the neurologist's room, holding the wall, he said 'Do you take a drug called epinutin? because this dizziness is rare side effect.' I said I did, and he said 'never take another of these pills and you will be fine'. So came off it and have been fine.

So I am just wary now of all medication!

jules1973 profile image
jules1973

Hiya i was epilim for more than ten years with no problems it didnt stop my seizures so i had taken epilim along with every other drug known ti neurologists eventually they came to a conclusion it jst didnt work and neither did phyentoin and i am allergic to lamotrogine n keppra the only two that i have no side effects to is tegretol n zonisamide