Scared of the drugs

[picklepops]

Hey guys - thank you for taking the time to listen to me and for offering any advice.

Over the years I've had these vague funny things that happen to me that I hadn't been paying much attention to. Deja vu, seeing colored spots, odd sensations on the right side of my body, moments of sudden confusion and feeling like I'm floating/in a dream...I always chalked it up to hormones, or being tired (I always get weird when I'm tired).

These vague things have progressed to being quite intense and finally got my attention. The deja vu is now overwhelming, horrible, and followed by intense nausea. I smell things that aren't there sometimes (electrical burning usually). Sometimes my speech will start coming out slurred like I'm having a stroke. Random memories are suddenly recalled vividly without my asking for them. A few times I've woken up suddenly hearing music playing very loudly in my ears (that wasn't actually there). Once when I was brushing my teeth, I had the oddest sensation that my mouth had shrunk down to the size of a Barbie doll's....there's a lot more.

I told my doctor about it and she got quite upset. Told me I was having seizures and sent me in for an MRI which came back fine. She wanted to refer me to a neurologist, but by that point I had read enough on the internet to convince me that the drugs are very difficult to live with and I'm leery of taking them. I thought maybe it was something I could fix, or make better, by being vigilant about taking vitamins, getting a lot of sleep, avoiding stress, exercising regularly, and eating healthy. I figured since I wasn't blacking out or convulsing it wasn't all that bad - just a weird glitchy problem in my brain. The side effects of the drugs sound worse.

Alas, after nine months it has not improved. It's still happening, and the other day I remember having a small seizure at dinner, then a vague memory of going to bed a few hours later, and waking up in the middle of the night with another seizure. But I remember nothing between dinner and going to bed. There's just a big black hole in my memory which is scary.

Part of me worries that I'm not taking this as seriously as I should, another part of me worries that maybe I'm just being a hypochondriac. Mostly I'm worried about having to go on drugs for it. From what I hear they can cause a lot of memory problems, depression or anxiety, fatigue, physical health problems...it sounds like I'd be trading one set of issues for another. Damned if you do and damned if you don't.

I'm not really sure what I'm asking...I know what I need to do is go to a neurologist and get it figured out and diagnosed, and probably just take the drugs. I guess I just wanted to express my fears about them, and get encouragement from you guys that you can still live happy, functional lives while taking them...

Thank you if you took the time to read all of that

 

[Nakamova]

Hey picklepops, welcome to CWE!

Part of me worries that I'm not taking this as seriously as I should, another part of me worries that maybe I'm just being a hypochondriac. Mostly I'm worried about having to go on drugs for it. From what I hear they can cause a lot of memory problems, depression or anxiety, fatigue, physical health problems...it sounds like I'd be trading one set of issues for another. Damned if you do and damned if you don't.

I definitely get where you're coming from. When my seizures arrived out of the blue (at age 35), I was very resistant to take medication. Unfortunately I can't control my grand mal seizures without it. But I have no particular problems with the med I'm on (Lamictal). A little dry mouth at night, but no memory issues, no fatigue, no mood problems, no other physical issues.

Everyone reacts differently to meds, but it's worth giving them a shot, especially if your seizures are escalating in kind, frequency, and/or duration. Left untreated, seizures will tend to progress, so it's much better to be proactive. And what you describe does sound very much like partial seizures. In encourage you to see a neuro and get a formal diagnosis.

Do you keep a seizure/symptom diary? It can help you track how your symptoms are changing. It may also point to possible triggers. For example, you mentioned "hormones" -- in fact some seizures can be caused by spikes in estrogen throughout the month (it's called catemenial epilepsy if you want to google it), and the treatment can involve progesterone-based birth control rather than AEDs. Another non-medication based treatment approach to consider is the Modified Atkins Diet. See http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/modified-atkins-diet

Best,
Nakamova

 

[Nakamova]

One more thing -- you may find this CWE link helpful: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[350spider]

Hi Picklepops,

I'm new to the board, but a lifelong epilepsy sufferer, so I thought my history with meds might be useful. I've been on a variety, and each did different things. The key, for me, was keeping close contact with my neurologist and doctor, and letting them know the side effects I had (or didn't) and deciding whether or not these were easy enough for me to live with or not.

Some meds didn't work for me at all. But now, I have two medications that give me no side effects. I do have some seizures that still come up (I'm about 80% covered by meds), but the meds themselves are wonderful for me.

Also, I find that the better care I take of myself (sleep, exercise, diet, etc.), the less my meds affect me.

I would always urge people to be pro-active. I went into remission for a long time (off meds), then my seizures returned and I wish I'd gone back to my neurologist quicker! It could have saved me a few months of yuck. Best of luck with this, and remember, it's totally natural to feel anxious, nervous and unsure. Your doctor should work this through with you as well. Keep us posted!

 

[Frink]

Hi picklepops, welcome to CWE.

Sure sounds a lot like you are having temporal lobe seizures. Many of your symptoms are the same as mine. Deja vu, nausea, smells, slurred speech, random memories, hearing music, Alice in wonderland syndrome, are all things I experience.

Do not be afraid to try the medications, they can make an incredible difference in your life and most people who are having success with their medications do not come on the forums and talk about the wonders of their drugs, but many people who are having side effects and poor seizure control will write about the problems and seek advice on other medications.

Since more people complain of medication problems than talk about medication success it can make it appear that the drugs are all bad and riddled with unbearable side effects when the opposite is the truth, most drugs are well tolerated by most people and the newer drugs have less side effects than the older ones.

 

[ln1]

Hi picklepops!

I completely understand where you are coming from!

Many of your seizures sound like mine when they first started out. Over the years, I went from deja vu with the electrical smell and metallic taste to brief black-outs to finally last year, a tonic-clonic.

I had been having seizures since I was a child, but did not know because although they were strange, I didn't feel like they were major. So basically, my seizures progressed until they got my attention.

When I was first diagnosed with temporal lobe epilepsy, my heart dropped, which I'm sure most people experience. My attention then turned to the idea of having to take medicine, potentially for the rest of my life. I have always been a lightweight when it comes to meds, even over-the-counter medicines. I was the type who could take 1/2 the recommended dosage of cold medicine for an adult, and be drowsy for 2 days. So, the thought of taking an AED had me terrified.

As many have mentioned, there are a variety of factors that can go into how medicines affect you, so no one knows for sure how you will react to a particular medicine. But, I want to share that my personal experience has been very positive. Keppra is the only medicine I've taken. I've been on it for almost two years. The only side effects I suffered were mild headache and dizziness when I first started, but have had no other side effects, and my seizures are controlled.

Definitely arm yourself by educating yourself on your options, but I would suggest consulting with a neurologist or epileptologist to stay ahead of any issues.

I wish you the best!

 

[picklepops]

Thank you so much everyone for your kind words and encouragement! It makes me feel a lot better about trying medication and that there is hope for feeling better in the long run. And yeah, I don't really want to run the risk of waiting to see if it gets worse because if it does, it sounds like it will be even more difficult to reign in. Thank you again.

 

[valeriedl]

I had my first seizure completely out of the blue when I was 27. It was a horrible grand mal that wouldn't stop and I had to be put into a coma for about 2 months until it was safe to come out of it. I pretty much didn't have any choice but to go on meds from the beginning.

We'd tried a good bit of different meds and dosages until we found the right ones and dosages that worked. Some I did have side effects that were bad and I had to be taken off of them because of that. The worst side effect that I can remember that I had to be taken off the med for was not eating. Not everyone has the same side effects with each med though. The only things that I believe are side effects from the meds I'm on now are being tired a good bit, not sure which med or meds that's from, and getting angry easily, I know that's from the Keppra. These things don't happen with everyone. It's sort of a trial and error thing when it comes to meds.

I do have memory loss but I know that's from epilepsy and having seizures.