New here and newly diagnosed

[sloan]

Hi, I'm just introducing myself. I'm 34 years old and new to epilepsy as well as the forum. I've had a few major episodes of grand mal seizures in the recent past, and was diagnosed with temporal lobe epilepsy a few weeks ago... After I woke up in ICU, confused (I never remember anything from immediately before, during or after the seizures). I was sent home from the hospital after a few nights, with a prescription for Keppra, which I have since been taking for a few weeks... But I do NOT like the side effects and I sincerely want to wean off.

I'd love to connect with others who experience seizures, as I don't have much experience nor community in this area. I wonder about the potential of this being genetic...? My mother had a malignant brain tumor in the same area of her brain where my seizures originate.

But most importantly, if anyone has advice about getting off Keppra (maybe using CBD instead?) I'd be very grateful.

Thanks

Sloan

 

[Porkette]

Hi sloan,

Welcome to the forum! I've had temporal lobe seizures for 46 yrs. now and I have absence and complex partial seizures. Just like you my Dr. put me on Keppra and I couldn't stand it the drug gave me a hot temper and increased my seizures so I went on cbd (medical marijuana) and it has done wonders for me. I've been on it for almost 3 yrs. now along with other seizure meds. If you are interested check out the web page healthyhempoil.com You can order the hemp oil (cbd) right on line and they will send it buy mail just be sure you check with your pharmacist that it won't interact with any other meds you may be taking. I use the cbd mouth spray twice a day and it's amazing how much it has helped me.
If anyone in your family has had seizures and they are the same type you are having it could be genetic. I have relatives who have grand mal seizures but since I don't my Dr. told me they weren't genetic.
My best advice to you is to see an Epileptoligist if you haven't yet these Drs. specialize in epilepsy, keep you on the least amount of med and if they see you can have surgery to either reduce or stop your seizures they will help you out so you can have the surgery if you want. Cut back on the carbs and starch foods and remember that stress and lack of sleep are the 2 main things that can trigger seizures. I wish you the best of luck and May God Bless You!

Sue

 

[Nakamova]

Hey sloan, welcome to CWE!

A few things to keep in mind:
1. Some meds take a little while to get used to -- you might find that Keppra becomes more tolerable if you can give it a few weeks. Some people find that taking a B6 supplement helps with mood-related side effects in particular.
2. But if the Keppra is a bad match for you, there are many other seizure meds to try, that work in different ways.
3. CBD oil is a drug too, just one that hasn't been studied or regulated. It may help your seizures but it may not. It may have zero side effects or you may find it bothersome.
4. If you decide to taper off, it's a good idea to keep your GP and/or neuro in the loop -- even if she or he disagrees with your decision, they should have a record in case something goes wrong.
5. In general, tapering is best done "low and slow" -- in small increments over a long period of time. The taper should take at least as long as the ramp-up period, and longer if you can manage it.
6. There may be withdrawal side effects -- some people report dizziness, photosensitivity or mood-related issues. You haven't been on Keppra very long, so that bodes well for having minimal, if any, withdrawal side effects, but you might want to be prepared just in case.

All of the above is not meant to discourage you from tapering -- I know the meds can be problematic in many ways -- just encouraging you to do so with your eyes open. I wish you success on the CBD oil and seizure-free good health.

 

[sloan]

Thank you very much for the welcoming responses. I'm grateful for the supportive, experienced community. Navigating this life change has been challenging and I'm not sure it's getting easier.

The negative thoughts and feelings I've been experiencing on Keppra aren't going away. My doctor called me back today and wants to switch me to Dilantin. From a simple Google search, that doesn't seem like the safest option, either. I don't know what to do. I learned about SUDEP and now I'm paranoid and scared to get off the meds even though they are making me feel crazy.

I'm not sure what I am looking for with this post, but I appreciate any support and advice.

 

[Nakamova]

Definitely ask your doc about the pros and cons of Dilantin. It was the first med I was put on. It worked fine for seizure control, but after about a year it was starting to affect my gums. I then switched to Zonisamide (which made me feel lousy) and then to Lamotrigine which has been fine.

You should also talk to your doctor about SUDEP. SUDEP is rare in adults, and I don't think you have the factors that might slightly increase your risk Your doc should be able to put your mind at ease. Regardless it's always good to get your seizures under control if you can, since they can potentially escalate if left untreated. You don't want your brain to get in the habit of seizing.

Like you, my seizures arrived out of the blue, in my mid-30s. Epilepsy sucks under any circumstances, but it was a particularly stressful time for me. I found it does help to have a support community that "gets it" (like CWE) and it also helps to ask a lot of questions, here and when you see your doctors. Much about epilepsy is still mysterious, but getting informed can help you get a handle on what's going on.

And being proactive can help as well. You might find the thread at the link below helpful.
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[Cint]

Like Nak and you, Sloan, my seizures arrived out of nowhere when I was 22 years old. They started out as Cps and went on to TCs. Before my 1st TC seizure, I was mis-diagnosed as hypoglycemic. But two months later I had my 1st TC seizure. The neurologist back then started me out with Dilantin, too. And like Nak, it started to affect my gums, plus my seizures only got worse. I've had a few really bad seizures that scared those around me, went into STATUS (a seizure lasting 5 minutes or more) a few times. I eventually had a temporal lobectomy because my seizures got really bad and no meds worked. I'm not going to try cannabis (it is legal here in Colorado). So I tried the VNS instead and it has helped me. Regardless of what method one uses, there are side effects.
I am still here, tho. SUDEP is rare.

 

[Freda]

Hi Sloan - I know how devastating it is to be diagnosed in adulthood, my daughter was diagnosed last year at age 35 and it came completely out of the blue, was such a huge shock to all of us and especially her. She was put on Keppra too, which seemed to work pretty well in controlling her seizures, but she hated the side effects. She is being very slowly tapered off Keppra and onto lamotrigine and the feelings of self hate, constant mood swings and anger and they crying episodes have nearly all gone. She has the occasional focal seizure but they're much rarer than before and she has to take a Clobazam 10mg tablet when that occurs. Other than that she's glad to come off of Keppra.

Hope your neurologist can sort something for you that reduces the nasty side effects of these powerful drugs.