Feeling like I will never be "normal" again

[Beanogirl]

:sad:

In the past year and a half I've tried lamictal, Keppra, trileptal and now vimpat. I'm either having an allergic reaction, a walking time bomb, a zombie or now experiencing shooting pains on my right side. I've only been on vimpat for a month and the pains started 2 weeks ago. I was hoping it wasn't related to the med but now I think it is. I have a pain on my right side near my rib cage, my right arm feels numb and I get shooting pains in my shoulder and below my collar bone when I take a deep breath.

When I call to talk to my neuro she seems annoyed and will switch my med without even talking to me about it. I know I should switch doctors but she is the closest neuro to me. I have 3 kids. I want to enjoy them and play. I want to be able to keep up with my house and cleaning and not feel like a zombie waiting to take my next nap. I live for naps and I was never like that before. Sorry to be a downer. I just really need to vent to someone who can relate.

 

[C0urt]

normal is overated,

it gets better

 

[Janus]

Ditto COurt, normal is conformity with a less hard name. Everything will be different no matter what. May be worse, may be better but we know it will be different. However it turns out, that will be temporary also. I know you may be thinking, "so what?, SHUT UP!" This is just my 2 cents on conditions, that is, its all perspective. And because we don't know what we don't know, we have every right to be 100% ourselves, warts and all. It is so freeing and makes life more fun when I remember that.

 

[Endless]

Beanogirl,

I hate to break this to you, but you ARE normal. So am I, so is everybody else. Everyone has something incredibly difficult in their lives at one time or another, or forever. Anybody that has the perfect life, well, you just don't know them well enough to know their problems. I'm not minimizing what you are going through - it's tough. And sometimes it takes all the strength you have. But take comfort in the fact that you are a member of "normal," the biggest club in all the world.

 

[Cherriuz]

No need to say sorry for saying how you feel.
I think your neuro should keep you more informed/involved but i do know how you feel about the distance thing, sometimes its just not possible to swap and that must really suck
In my experience thats a short time to go through so many meds. I spent a year on lamactil going up very slowly and adding things in and have only just reached a point with it thats perfect (thats just my opinion on it)

I dont think there is a normal, personally, and if there is i suspect its over rated anyway!

I do understand how you feel about the next nap, its frustrating not being able to keep up with the kids

*big cuddles*

 

[Gillette]

I totally understand, I used to giggle when I heard someone say they had to have a nap ..... I was one of these people who woke in the morning and didn't go to bed again until night .... but that was then this is now! That was a life that I struggle to remember and when my husband or kids mention anything 'oh remember when we used to ....?' ..... 'No!' A lot of times now I can't even remember what I did 5 minutes ago .


Things will get better, your body has to adjust to what is going on within it and the meds but your mind is going a million miles an hour. I found that I was my own worst enemy, I couldn't change what had happened as hard as I had tried no more than you can. I was fighting against sleep, housework, spending time with the kids and my husband ..... but had to realise that I wasn't wonder woman, I never was even before so what makes me think I could fit it all in now and deal with all the extra on top!

4 different meds later, still on a combination of last 2 and 3 years after being diagnosed and 2 years of being on meds, wouldn't accept it for the first year as I was hoping it would go away .... I am now a new me, not the old me but as normal a me as I am happy to accept and given the journey we all take when diagnosed, looking around I would rather be the normal me than some others at least I know whats wrong with me ;-).

 

[Belinda5000]

normal what's that I've had seizures always. Everyone has something they can't do and I've been on more drugs than I care to admit.I've had 1000's of seizures but that's life and I'm not going to stay at home just because I might seize

I had my neuro take me off Clonazepam and I haven't had a sz since 12-26 and I hope to keep it up to come off phenobarb.

 

[Janus]

Absolutely! This reminds me of one of my favorite quotes;" I tried being normal once, worst two minutes of my life!"

 

[arnie]

Regarding the "normal" part of things, epilepsy will always be a part of who you are, and that's ok. On the issue of medication side-effects, however, which seems to be the biggest concern for you, I would really encourage you to keep talking to your neurologist, or even go to the one farther away if you have to. You should NOT have to live with medication side-effects that are as intrusive and even debilitating like yours seem to be. I was on Dilantin for about 15 years, then on Lamictal for another 15 years, and have had brief trials of Keppra, Zonegran and Trileptal. Those last three made me feel just awful in various ways so I told my neuro that I would not continue taking them. I'm thinking now that I'm starting to see increased side-effects from Lamictal (I found out that seizure meds can start giving you adverse effects years after you have started taking them, unlike many other drugs). In addition to the side effects I have never gotten good control of my partial seizures from any medication. That was all discouraging and contributed to my decision to get my vns implanted.
So, work with your docs to find a medication that doesn't drag you down so much. The epilepsy normal does not have to include tons of nasty side-effects!

 

[kirsten]

:sad:

I have a pain on my right side near my rib cage, my right arm feels numb and I get shooting pains in my shoulder and below my collar bone when I take a deep breath.

It's easy and often common sense to assume that these problems are related to AEDs but your issue sounds an awful lot like there's some sort of sprain or spine/nerve thing going on. Have you lifted anything heavy or been doing anything repeatedly that you weren't doing before this started?

Long time ago, I lifted something really heavy. At first there were no symptoms but that night when I ate dinner I suddenly had the most horrific pain on one side of my rib cage, to the extent that i was struggling to breath. I had to shoot to the emergency room, where i found out I'd sprained a muscle between my lungs and ribs (or was it between my ribs and skin? Who knows?) Doc said it was from the heavy lifting in the morning. I'm no doctor, but isn't it worthwhile to just take a trip to the GP to get examined?

 

[giveasmile]

I've been in the same whirlwind of medications, side effects and drug allergies over the last year and a half. (For me; Keppra, Topomax, Phenobarbital, Lamictal, Klonopin/Ativan and Gabapentin)

It feels very far from normal-- even my new normal.

I think someone hit the nail on the head when they said to slow down.

If you need to stay with the same Neurologist maybe ask if you can start on smaller doses and increase much more slowly or back off to the last dose when you have to, or use some Ativan in between switching things. I was trying to follow the exact increase schedules I was given and if I broke out in a rash or couldn't get out of bed, or was having kidney/back pain, or more seizures, I was abruptly taken off one and immediately increasing something new. For me it was too much, too fast, too soon and too many things coming and going from my system.

People here also suggested to me that I ask the Neurologist about Keto diet or to see if I'm a candidate for vns or anything else that might be out there.

If you try a few times to have this Neurologist slow down and have a discussion, rather than just get annoyed and immediately change prescriptions, then your quality of life is worth finding someone else.

 

[Suburbmom]

I can relate to the "not feeling normal", and I have had epilepsy for 24 years now. Its just a different kind of normal, where unfortunately medication plays a large part. I can tell you what I have used but, would recommend you talk with your neurologist.

I'm 42, and when I was 18 after a long day of work, being tired, and stressed had my first Grand Mal seizure. My doctor put me on Dilantin, and Phenobarbital where I had occasional breakthroughs although this was often because of a missed dose. As a high school / college student I wasn't great at medication consistency. I improved greatly as I got older, and remained on it for 18 years. Out of no where I started feeling drunk/ intoxicated so much so I went the ER because I couldn't walk straight. They took my blood levels and found crazy high toxicity levels from the Dilantin. My neurologist switched me to Lamictal. This made me feel intoxicated too, but I didn't have any seizures. When I talked with him, he put me on Keppra where the next day I had a Grand Mal. We went to a combo of Lam/Kepp. Seven years seizure free, and then a breakthrough Grand Mal. I was devastated, and completely freaked out. He upped my Lamictal to 500mg, kept my Keppra at 2000mg and added Klonopin .25 to the mix. I have been fine for the past year, but still have days where I feel intoxicated. My "normal" has changed again, but I am learning to live with it.