Newly diagnosed

[mkeating]

I never was part of an online community before, but I've recently been officially diagnosed with partial generalized seizures. I say officially because I had several seizures in the past but was never accurately told what the problem was. I was on phenobaribtal for over twelve years with what I considered terrible side effects. Then I was off medication and seizure free for four years. This past year, I have had several seizures in seven months. I started treating with a wonderful doctor. Had a video EEG and MRI. It seems they have located the problem and are treating with Lamictal--a good drug, which I feel has very little side effects for me.

So what's the problem right?

I don't know. I had the last follow up with my doctor a few days ago after two months of testing and worrying about what was on my brain, and when I thought I would feel relief at the good diagnosis, I feel incredibly sad and depressed and afraid that nothing will be back to normal. A friend of mine says that all of the years I have been in a kind of denial about my epilepsy--believing that with the four-year hiatus I was somehow cured, and now I am just dealing with the confrontation with denial. I don't know if this is correct. I just feel sad and crying a lot and when I usually know the root causes of such feelings, these days I don't know anything.

I also feel totally unjustified in my feelings because I read about terrible cases where people are suffering from daily seizures that prevent them from working and living a relatively stable life. I feel I should just be happy my problem is controlled and move on. But I don't feel that way.

If anyone has some helpful advice, I would appreciate it. I made an appointment to speak with someone at the Epilepsy Foundation. I am hoping they can tell me I am not crazy.

 

[Bernard]

Hi mkeating, welcome to the forum. :hello:

I hear your pain. You sound a lot like Stacy. Even though she accepts that she has epilepsy, she doesn't accept the fact that she has to have seizures or drugs. She is driven to find some way to control the epilepsy without drugs. Her search continues.

I feel incredibly sad and depressed and afraid that nothing will be back to normal.

What's normal?

"Change is inevitable. Change is constant." - Benjamin Disraeli

"Without change, something sleeps inside us, and seldom awakens. The sleeper must awaken." - Duke Leto Atreides, Dune

There are some camps which believe that our time on earth is merely an opportunity for the growth of our soul. The obstacles that we face in our time here are merely opportunities for that growth.

If none of that cheers you up, try perusing the inspiration thread. Of course, you are welcome to vent over here anytime you like.

 

[mkeating]

bernard: thanks so much for the support. I know things will get better and I can see how blessed I am. Emotions are just running high right now.

I am glad to be a part of this community and look forward to the insight members will give me.

MK

 

[Birdbomb]

Something you might consider as a contribution to your depression is the medication that you are taking.

Many of the AED's prescribed for epilepsy are also used for depressions and one of the side effects can be ...depression.

Here is a list of side effects of lamictial.

What side effects may I notice from taking lamotrigine? (Back to top)
Most people who take lamotrigine tolerate it well. The most common side effects are dizziness, drowsiness, headache, blurred vision, nausea, and rash. If a skin rash occurs at any time while taking lamotrigine, contact your prescriber immediately. Rashes may be very severe and sometimes requires being treatment in the hospital. Deaths from rashes have occurred. Serious rashes occur more often in children than adults taking lamotrigine. It is more common for these serious rashes to occur during the first 2 months of treatment, but a rash can occur at any time.

Side effects that you should report to your prescriber or health care professional immediately:
•fever
•painful sores in the mouth, eyes, or nose
•redness, blistering, peeling or loosening of the skin, including inside the mouth
•skin rash of any type, itching
•swelling of the face, lips or tongue
•swollen lymph glands

Side effects you should report to your prescriber or health care professional as soon as possible:
•blurred, or double vision
•changes in seizure type or frequency
•depression, or mood changes
•difficulty walking or controlling muscle movements
•uncontrollable eye movements
•unusual weakness or tiredness

Side effects that usually do not require medical attention (report to your prescriber or health care professional if they continue or are bothersome):
•back pain, joint aches and pains
•diarrhea, or constipation
•difficulty sleeping
•dizziness, drowsiness
•dry mouth
•headache
•hot flashes
•loss of appetite
•menstrual disorder
•nausea, vomiting
•slurred speech
•stomach upset, indigestion
•stuffy, runny nose
•tremor

Please speak to your provider about this. There are many other medication that control as well and perhaps the side effects may not be as bad.

Good luck. :wink:

 

[Bernard]

Good point BB! I always forget to mention that. D'oh!

 

[Birdbomb]

Medications used to alter the brain in any way can and do alter mood and emotions. Depakote makes me insane. I rage uncontrollably and have even thrown and furniture and even had suicidal thoughts. Codine after a few days will turn me into a screaming harpie but I can use morphine without any problems. Topamax caused severe eye pain. Now THAT medication can cause blindness!

These AED's are really just trial and error and it's important to KNOW what to expect.

 

[kittykat2009]

hi there my nmae is kitty and i have just joined this forum,
so im just saying hi
best wishes to you from kitty 8)