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Epilepsy Research Institute

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gerrymob profile image
12 Replies

I can't remember if I introduced myself when I joined the site a long time ago. I am 73 years old on 31 March, can't understand how I've made it this far.

I was diagnosed as an epileptic at the age of 26 whilst serving in the army and was invalided out. Until 1972 I had very few seizures and worked until I retired in 2005, my work taking me overseas. In 2014 I had two seizures, one May and one in August, was seen by a neurologist who told me not to worry and suggested that I stopped taking Lamotrigine at a very low dose as it would not be effective. this year I had a seizure on 13 January, one on 13 February, sat around until 13 March, nothing happened but next day i had another one. I have made an appointment to see my GP soon. I saw my GP two weeks ago and told her about the January and February seizures when she showed me a letter from the neurologist which he recommended that I should be put on Lamotrigine but at a much higher dose that I was on previously. I shall asked to be given the higher dosage.

The only question I have is will the medication have any effect?

In the last 18 months I have been diagnosed with COPD, Blepharitis, Reflux. I have had mild Psoriasis for many years. My upper teeth are not there in any number. I have worn glasses since the NHS came in in 1948.

Having said all that my general health is good. no aches or pains, coughs or colds, I cant remember the last time I used a tissue for a cold, maybe 50 years.

I can still get up Constitution Hill in Swansea, reputedly the steepest inhabited hill in the UK, average gradient 1 in 5, and at various points on the hill 1 in 3.

I have got a few questions regarding COPD and a few other problems but it is well past my bed time.

Peace

Gerry

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gerrymob
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12 Replies

I had seizures for years and finally they were controlled by Lamictal (Lamotrigine) (I believe it was a lucky guess by a neurologist--at that time it was a newly-released drug being prescribed for depression.)

The seizures destroyed my long-term memories, and my doctor couldn't tell me much about epilepsy, so I did years of research on it. Now I know very little more about the condition than I did before.

Generally, people can tell when the seizures started, and sometimes they decide that is the "cause" of the "episodes," but people still know very little about what actually causes seizures. "They" have a pretty good idea what happens during a seizure, but whether a medication will work seems to be completely unpredictable. Some medications that work great for some people don't work at all for others--and many people can find no medication that works at all for them. (It took over 7 years of trying different medications before my seizures were controlled.)

I've had great luck with Lamictal/Lamotrigine; it sounds like it worked for you before, so it probably won't hurt to try it again.

Good luck!

gerrymob profile image
gerrymob in reply to

BekiP

Many thanks for your positive reply. I am seeing my GP tomorrow morning and restart medication after being off it for a long time. Best wishes and many thanks.

Peace

Gerry

gerrymob profile image
gerrymob in reply to gerrymob

Saw GP this morning and got my medication. I asked the GP about Lamictal and lamotrigine and if there was any difference. She said it was only the cost. The pharmacy has given me what looks like Lamictal but the word lamotrigine is under the word Lamictal. Has anyone any idea what I have been given?

Peace

Gerry

AmyBadd profile image
AmyBadd in reply to gerrymob

Lamictal is the brand name. If that is what you have had before then it is for the best to stick with it. The active medicine in lamictal is lamotrigine and so if you had another brand it should work the same, but there is a possibility you might get side effects you had not experienced before. It is like how Neurofen is a brand name for ibroprofen. It is more expensive than the ibroprofen you can get that is made by tesco, or co-op, for example.

gerrymob profile image
gerrymob in reply to AmyBadd

I confirm I was given Lamictal. Got another months supply and I mentioned to the pharmacist that I would like yo conue on Lamicta;. She said that is what she gives to all patients prescribed Lamotrigen. It seems that I am fortunate in getting the brand name one.

Peace

Gerry

AmyBadd profile image
AmyBadd in reply to gerrymob

I think that with neurology drugs it is quite common to get the branded version. I hope it has been working well for you so far :)

I haven't been on the medication you are mentioning. I have been on Carbamazapine and Phenytoin for years now, which have been altered with dosages regularly until the correct dosage has now been found. An increase in dosage was necessary for me with both. No seizures so far for 4 months so hopefully dosages are now helping. Regarding psoriasis... All drugs can cause a skin reaction or one may not agree with another. I suffer from skin allergies and urticaria at times, all depending on the medication I am put on for a problem.

gerrymob profile image
gerrymob in reply to

I refuse to use prescribed medicines and anything the chemist sell. I use Potters Psoriasis Cream which i found in a local health shop. I also have Exorex Moisturising Cream which I found on the but can't remember where I bought it, possibly ebay. I have mild psoriasis and these creams work well.

Hi gerrymob, thank you for reply. It depends where you are based as to where you got the Potters cream from. If it works, then carry on using it. I am based in Durban, South Africa... If you are overseas, we don't always have suitable creams here. Have a good day today.

DarrenC profile image
DarrenC

Hi ya Gerry, It's nice to hear your words. It sounds like you've done well from an early time, where I can only imagine how difficult it must of been with the understanding of neurology in 1972. I have been to hell & back with tegretol 10 folding my nervous system, to the point of telepathic status. I know that your feelings are the creation of your thoughts(ie) your senses. And they will create energy to the correct are of your brain, to open the right cells with the stored info. Then your emotional senses(ie) your temporal lobe will create emotional reaction, your heart, lungs & physical strengths are key to controlling your thought patterns(ie) your emotions. As you get older your body weakens in all these areas, just the same as a car that never serviced. So your nerves strengthen from the up rise of your heart beats, and the shrinking of your lungs. Your muscles weaken and can't cope with the high bolts of energy, that occur from your nerves passing through your affliction. Breathing correctly is a key to life, think through your eyes & ears to control your emotions, and understand what your epilepsy actually is to create a more positive feel for it. Instead of pure fear all the time and think about your medication? is it needed? your instinct & prayer will answer. God Bless you Gerry.

gerrymob profile image
gerrymob

Two weeks ago my Lamictal was increased by 25mg per day. I took the first new dose in the morning and felt awful and went to bed and slept for hours.

Is this common when upping the dosage?

I have a long way to go before I reach the dosage what the neurologist wants me to make.

I also have a problem walking, my legs are ok but I shuffle some times. Is this anything to do with my medication? I will be seeing my GP in a few days, I shall ask her.

Peace

Gerry

gerrymob profile image
gerrymob

Hello everyone out there. I have been quiet for some time now. Just to bring myself up to date, My Lamictal has been increased and initially I had back aches and never had any aches and pains ever I initially found it hard to cope, I went to bed whenever the back ache came on and felt better when I woke up. The last week/10 days have been OK, maybe my body is getting used to the Lamictal. Hopefully the medication will eventually stop them completely as some people on the site that after many years the are now seizure free.

Just in passing, I am off to my home city of London on Thursday to a garden party for disabled ex servicemen at the Palace. HM will be away but Princess Anne and Admiral hubby will be there who I have already met at the palace a few years ago at concert. I met HM at Windsor Castle a couple of years ago, shook hands and had a short chat. Met Charles and Camilla in Cardiff on the Armed Forces Day celebration, shook the proverbial hands and chatted to both. I shan't bother with the younger princes but I would like to meet William and Harry and have a chat about our service experience. Servicemen do reminisce as we get older and swing the lights.

Off to bed soon, I trust that everyone on the site stays well and wish you all the happiness in the world.

Peace

Gerry