Have just been diagnosed with epilepsy and am having MAJOR problems with medication

[ptangyangkipperbang]

After 4 'incidents' within a week I ended up hospitalized and diagnosed with seizures. I have been put on carbamazepine and am supposed to be slowly increasing the dose from 200mg to 600 mg day. For the first few days I had horrendous headaches. These have now passed but I am left with an incredible feeling of fatigue. I am going to bed at 6pm, sleeping in the day and can hardly string a sentence together.

I am unable to look after my children, never mind my house, and feel as if I'm at the bottom of a big pit. The GP has said to reduce the dose but that this could mean I suffer fits. Will things get better?

Bump

My Dad has had epilepsy for years and was on medication that was controlling it perfectly until up about a couple of years ago. He has loads of tests to confirm it was the epilepsy. It has taken him well over a year to find the correct medication and the correct dose. If the medication you are not on isn't agreeing with you please ask your doctor or consultant to change. I assure you there is the right medication out there for you it might just take a while to find it. My Dad is perfectly fine now so don't give up hope!

Thanks. I hate sounding so sorry for myself but I just want things to be normal for the rest of the family.

ooh here i am!

i wasnt able to tolerate carbamezapine, so was put onto epilim, which was much better for me BUT there is a syndrome attached to it, which causes an increased risk of birth defects, my oldest child was born with this

i think it would be reasonable to ask them to change your meds to something else, there are quite alot of options

my epiradar went off

Thanks Lou33. Couldn't respond last night because had to go to bed at 7pm! I am just waiting for an advice call from the GP to discuss options. Will keep you posted.

Lamotrigine is safe for unborns. I take it twice daily and was told by my consultant that it is the best one if considering pregnancy. All 3 dc have been fine.
It probably depends on type of epilepsy as to what they give you though, doesn't it??
I have Juvenile Myoclonic Epilepsy - sensitivity to light, also affected by stress and tiredness.

yes it does, the type of epilepsy will decide which meds you can have, but there are still more than one type available for each category

i would predict that if she has been put on tegretol (carbamezapine), then she would be offered epilim (sodium valproate), but please bear in mind that it is not advisable to get pg while taking it

my sis is on tegretol and got pregnant whilst taking it as it made her contraceptive less effective. her boy is autistic but i don't know if that is related. i am not sure what defects it can cause, apart from spina bifida, which is what my gp told me about.

lou33 - you seem very knowledgeable though. my sis wasn't told anything about what could happen, just that her pill hadn't worked because of the tegretol.

i only know what i say through bitter experience

i was allergic to tegretol so they put me on epilim, saying there were no syndromes associated with it so i didnt need to worry about being pg on it, and in fact they increased my dosage when i was 20 weeks pg

dd1 was born with a lot of problems, we didnt know why, until a paed at hammersmith hosptial showed us a paper in a well known med journal stating the risks of epilim on unbornn children

the facts had been known for a long time, but there were no warnings

we took the HA to court, or at least tried to, but man it turned into a huge closed shop, people who were not involved directly, but had since become involved with dd1 and her medical care, were all pressuring us not to go ahead with it

we did go ahead but they woud not take it to court, however we did get it on paper that her probs were a result of the anti convulsants i took, which was all i really wanted

they have since had many others sue the company and have now put warnings on the info leaflet, i believe

The neurologist did warn us about getting pregnant. However, DH has had a vasectomy so we should be okay.
They don't seem to be able to put their finger on the type of epilepsy as the CT scan didn't show anything so it was based on mine and DH's description of what happened (initially they had thought it was a mini-stroke because the whole of my right side was paralysed).
My GP told me that they often use carbamazepine as a first resort because it is one of the cheapest epilepsy drugs.

Lou33 how awful. As if you need a fight on your hands with the authorities when having to deal with a situation like that.

yes i know, she was born with hydrocephalus, 2 congenital heart defects and a good few anomalies which correlate with valproate syndrome

she was developmentally delayed for a long time

she's caught up now and her epilim related probs seem to have been resolved, but for the first year we didnt really know if she was going to make it

she went into suspected heart failure once when she was about 8 weeks old

oh and she had some seizures up til she was about 2

we had to take rectal valium with us everywhere we went

We found great help from the epilepsy nurse specialist attached to the hosp.Ask if you have one and if not there will be a local one somewhere.She came to see my dd at home and spoke with the school and both sides of family ect also.She was always at the end of the phone and liased with consultant ect.

It took us months to find the correct dose and med but also found other ways of reducing need for med, like making sure her blood sugar was never low and lots of sleep.
At one point she did sleep from 7pm to 8 am and long naps in the day so i really know where your coming from with the sleep.
There really is a vast array of good new meds out there now so you sound like you need to change yours pos. Carb is an old drug and quite strong, so go back to your specialist as soon as you can.

Join an epilepsy support group on line maybe.
Hope you feel better soon x

GP won't change my medication! Said I have to wait till I see neurologist next Thursday. Has advised me to keep on the reduced dosage (200mg) and then discuss it at hospital appointment. This level is tolerable (unlike 400mg which was horrendous) but can't say I'll be having the best week ever. Oh well. Thanks for positive messages tho. It really helps to know there is light at the end of the tunnel.

sorry i should have made it clear that i meant ask the neurologist to change them, the gp cannot do that

if you cant wait til next week i would suggest calling the consultant and telling htem what is happening, see if they can advise ytou to do anything while you are waiting to be seen