back after a while..and been diagnosed

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vapour

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Hi all. I came to this forum in November while I was going through tests.

My seizures stopped for a while, so I didnt go to see the neuro again for quite a few weeks... not a wise decision.

In january they started up again, so I finally went to have the longer EEG and MRI.

Both picked up abnormalities in my left temporal lobe, just as the first shorter EEG did.

After discussing with my neuro about my symptoms, and having the test results he made a diagnosis of temporal lobe epilepsy ... and I am having partial seizures.. simple partial...sensory partial and complex partial.

I recieved the diagnosis a few weeks ago and was put on lamictal. Right now Im only on 100mg because it takes ages to reach an effective dose but I might have to be on around 300-400mg.. we will see.

I felt very alone at first. Unfortunatly I have already recieved some heavy stigmatism from a couple of friends, and had to end the friendships (one of whome I live with who will be leaving in about 2/3 months to move elsewhere) .. infact she actually told me I was demonized (I think because during one seizure I had made this awful high pitched shreak... when usually I cant talk at all)

However I have a couple of other friends who are being extremly supportive, though from now on Im probbaly not going to tell anyone else.

I found an epilepsy support group in my area, free... where they have really top neurologists come in once a month to talk about the latests developments and treatments.

I have been advised to wear a medical bracelet, which I am.. mainly due to the fact when Im having one Im not able to talk.

Hoping that the medication will work-surgery has been mentioned breifly but I would much rather take meds than have surgery-and I might not be a candidate anyway.

So, im glad to be back here, I actually did try to log on after I got the diagnosis but Ive been having PC problems.
 
Hello :banana:

I am new to this site ... and actually quite new to the world of epilepsy ! I am waiting to see a Neurologist at present (11 weeks plus of wait actually) - but I believe and so does my GP that I am suffering from Simple Partial Seizures . I have had them for years but always put them down to being just me having Funny Five Mins - but recently they have got a lot worse ! You must feel relieved after being diagnosed ? ARe you on medication ?? If so - how are you finding it ???

Be nice to chat some more sometime

Take Care xxxx
 
My daughter was not helped with meds, but she is in more control with nutritional changes, and neurofeedback. We have also found out that there is a blood sugar connection that none of the doctors picked up on. I had to demand a test.

Keep looking for the cause, be careful of just jumping on the med band wagon without looking into alternatives.
 
Hi Vapour
I was only diagnosed last year as well, I have complex partial seizures. I was the same as you in that I didn't want anyone to know and I felt very alone as well but I think it is really important to tell people, not only for community awareness but safety and support for you. It's great that you wear the bracelet but if friends and family are aware of your condition and seizure types they will recognise what is happening and be able to help you. If they saw a seizure and didn't know what was happening then they are likely to panic and be of less help to you. Don't let the reactions of a few small minded people stop you from talking about your condition. You might find it will help to have people to talk to, even if they don't know what you are experiencing. Also your true friends will want to know more about what you are going through so that they can help you. This is a great place to come and make friends and have a chat when you need someone who understands. These are the only people I know who have epilepsy!
 
Thanks all for hte replies.

For angies question.. yes I am on medication. I have been put on lamictal but it takes quite a while to reach an effective dose...so it will be a few more weeks before i am there .. in the meantime im trying to keep a stable sleeping pattern, rest, and not nap .. otherwise I know ill have seizures.

Id like to know more about the nutritional stuff that can help epilepsy.

Im confidant the meds will work, surgery has been mentioned to me, but I will only go there as a last resort and if it gets worse.

I contacted an epileptologist, because I was advised to see one, but I dont know if I am going to go yet...
 
Hi Vapour,
Sorry you had to come back with a diagnosis, but welcome back. Please don't let the "stigma" hold you back in life. Epilepsy is a medical condition, not some demonized condition like some fools still like to portray it. No reason to be ashamed. If those who can't stand by you, well, they aren't friends to begin with!! You're better off without them.

As far as surgery, stay wise and use that as a LAST resort!! If you're just starting out on meds, there's no reason to rush in to brain surgery. Their rule is to try at least three meds before going down that road. I went that route and wish to god I'd never done it! Especially now when there are so many alternatives available.
If you have trouble with your meds, you should see an epileptologist. They're more informed.

Good Luck!

Cindy
 
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