Recently diagnosed, curious about others side effects

[Padfoot]

Hey all,

I hope everybody is well.

My name's Elena I'm 23 and I was very recently diagnosed with Epilepsy (Begging of feb)

After having two prolonged seizures around 2-3 days apart I was quickly prescribed Lamotrigine and Clobazam -When I upped my lamotrigine dosage I had a really crappy allergic reaction in the form of a rash all over my neck and arms. The Clobazam caused horrible nightmares and really disturbed sleep!
My neurologist took me off both and has now put me Levetiracetam/ Keppra.

My bodies dealing much better with Keppra although at first I was still having quite vivid auras, once my dosage was upped they have stopped all together!

I'm just curious about whether other people have experienced night time teeth gurning/ inflamed gums. Additionally I seem to be having a lot of problems with my sinuses which is causing a lot of unnecessary headaches!

I'm pretty sure I have read somewhere that anti convulsive medications can play a bit part in blocking your sinuses?

Thank you all
I just want to know whether this is all occurring in my head aha and I'm unnecessarily placing blame on my meds when its something unrelated :bigsmile:

 

[Cint]

Hi and welcome Padfoot,

My seizures started when I was in my 20's, too. After trying many meds and a brain surgery, I'm now taking 3000 mgs. Keppra. I do have sinus problems, mainly a constant runny nose. I just got over a sinus infection. I also experience inflamed gums. I just had a dentist appt and he says it is a common thing with the AEDs. During a few of the seizures I've suffered, I broke my front teeth.

So yes, it is all in your head! But it is from the meds.

One more thing to beware of with Keppra, it can cause rage/depression for some. So if you start feeling any of these, call your dr. ASAP!

 

[seagull]

I take Lamotrigine and colbazam no problems like that but I wondering if they cause kidney problems as seems I have

 

[Frink]

Welcome Padfoot,

I do not take AED's and have no gum problems but I do have chronic sinus problems.

 

[Padfoot]

Hi and welcome Padfoot,

My seizures started when I was in my 20's, too. After trying many meds and a brain surgery, I'm now taking 3000 mgs. Keppra. I do have sinus problems, mainly a constant runny nose. I just got over a sinus infection. I also experience inflamed gums. I just had a dentist appt and he says it is a common thing with the AEDs. During a few of the seizures I've suffered, I broke my front teeth.

So yes, it is all in your head! But it is from the meds.

One more thing to beware of with Keppra, it can cause rage/depression for some. So if you start feeling any of these, call your dr. ASAP!

Dear Cint,

Thank you very much for your response

I appreciate the advice about contacting my Dr. When I first prescribed Lam & Col- I was told there were no side effects and felt like I was going insane with 3/4 nightmares every sleep! and generally feeling like walking death lol.

Sorry about your teeth Cint, I've been avoiding the dentist I should probably trot on over there sometime soon...

Have a lovely day/night everyone
I'm from the UK and it's 7.30am over here currently!

 

[JJR1956]

Hi Padfoot,

Sorry about the issues you're having. Just keep an eye on this board and you'll get all the answers you need. Mine started about 16 years ago due to a car accident. I had 2 grand mals in 2 months time. THOSE really hurt! For me, Dilantin was dreadful as in teeth and gums. I had to go for scaling of the teeth 4 times a year. I'm on Phenobarbital & Alprazolam now and no problem with the mouth, but my bone density is getting messed up.

Wish you well,

Joey

 

[Padfoot]

Hi Padfoot,

Sorry about the issues you're having. Just keep an eye on this board and you'll get all the answers you need. Mine started about 16 years ago due to a car accident. I had 2 grand mals in 2 months time. THOSE really hurt! For me, Dilantin was dreadful as in teeth and gums. I had to go for scaling of the teeth 4 times a year. I'm on Phenobarbital & Alprazolam now and no problem with the mouth, but my bone density is getting messed up.

Wish you well,

Joey

Hi Joey,

Thank you very much for responding!

I'm hoping I'll kind of just get used to them, have you found that the side effects lessen as time goes on?

 

[JJR1956]

Hi Joey,

Thank you very much for responding!

I'm hoping I'll kind of just get used to them, have you found that the side effects lessen as time goes on?

With Dilantin, it only got worse as time went on. I was taken off of it after 5 years. The Pheno seems to have no side effects except the loss of bone density...but that's it. Other people could be different. I'm 60 years old, so that could be part of the bone loss too.
I hate getting old! LOL :giveup:

 

[Padfoot]

With Dilantin, it only got worse as time went on. I was taken off of it after 5 years. The Pheno seems to have no side effects except the loss of bone density...but that's it. Other people could be different. I'm 60 years old, so that could be part of the bone loss too.
I hate getting old! LOL :giveup:

Oh gosh that's awful! Sorry to hear it. Good to hear your side effects are now minimal.

Haha and you're 60 years young Joey!
Have a lovely day/night/afternoon whatever time of day it is right now in the US!

 

[valeriedl]

One of the meds that I'm on is Keppra. A few years back my gums started hurting horribly, even bleeding when I brushed my teeth. I went to the dentist and he said that I had receding gum lines and it can be caused buy one of the meds I'm on. I'm sorry but I don't remember which one/ones he said it was.

I'm constantly blowing my nose. We go through boxes of Kleenex like crazy. I don't know if it's because of one of the meds I'm on or not.

 

[acshuman]

Side Effects

I have been lucky in that I have NOT had any negative side effects other than swollen gums from Dilantin. I have been taking Dilantin for 50 years.
A person w/E learns over time that they will be facing many things that 'normal' people won't have to face. You will see this and learn to deal with these things!
Many things that can take place are hard to describe, so you will have to make yourself willing to 'take these strange things on' and NOT let them conquer your self confidence!:twocents:

ACsHuman

 

[valeriedl]

Luckily my family usually understands about things that happen are due to epilepsy or the meds. It might take my neuro or another dr to tell them that though. I've also told them that I've talked about things that happen, like side effects of meds, that have been brought up on here. I'll tell them that what ever it is happens to several other people too, not just me.

The only thing they had a problem understanding, and I'm still not sure if they completely believe me, is Kepprage. I just have such a short temper at times and my family will yell at me when I say or do something because I'm angry. I just can't help it, the actions or words come out of my mouth before I realize I'm saying or doing it.

One thing that did help them understand a little more about Kepprage was when my grandma had been taking Keppra. The drs thought she was having nocturnal seizures so they put her on it. Grandma was always the sweetest person it the world but when she was on it you couldn't believe the words that would come out of her mouth! She was constantly yelling at my grandfather, swearing even! She told me it was all she could do to not hit him with a frying pan at times. She couldn't take the kepprage so she stopped taking the Keppra and went back to her old self again.

 

[acshuman]

Kepprage

valeriedl,
Having a person who is taking Keppra suddenly turn angry or violent is something that seems to be a very common side effect of taking Keppra! This is something that you should be able to show your family by using your computer. If you 'google' 'Keppra side effects', you will get a list of articles that tell about how a person who is taking Keppra can have side effect like anger.
If you search for these articles and bring them up on your computer, tell your family members that you have something on the computer that they need to read, they should have NO reason to NOT read the articles.
If they refuse to read the articles, they are showing you that they don't want to understand how you have to take a med, and that med's side effects are causing your problem!
If you ever need to vent your feelings or have any questions about E feel free to ask them here! We are willing to help you by using any of the knowledge we have learned from our experience w/E. :shake:

ACsHuman

 

[gymrat827]

tegtrol, vimpat, toppmax, keppra, klonapin are all meds i take. I am an odd breed, being that i take so many.

But you may be tried on a few before you/they (dr's) find what works best/well.

I even have a VNS implant in my chest.

 

[Sabbo]

Hi. I've been on so many AEDS that I often joke with my neurologist about feeling like a lab rat. I currently take 400mg/day of both Topamax & Vimpat, but still get breakthrough seizures.

 

[gymrat827]

Hi. I've been on so many AEDS that I often joke with my neurologist about feeling like a lab rat. I currently take 400mg/day of both Topamax & Vimpat, but still get breakthrough seizures.

i take 1200 a day of teg

400 a day a vim

1500 a day of kepp

150 a day of toppmax

2mg a day of Klonapin

my VNS is about 70% to max

im on my 5th nero, theres 2 huge places in Chicago and hes 1 of them. (RUSH)

on my very 1st appt he said no one takes more than 2 drugs, the slightest, fewest ppl take 3 and those are the ones who cant get things figured out at all.

here i am seeing im for 2yrs with 5.....lol......& an implant in my chest.

 

[Sabbo]

Tegretol was the first AED given to me, & the worst. I had a very severe allergic reaction to it. I had a rash all over my body, a very high fever, & I lost 85% of my hair. My hair never grew back. Keppra caused such horrible cramps that I was doubled over in pain.
While I was with my father's insurance, I was also seeing the neuros at RUSH. I might try to go there again. My seizures have become worse in the last 17 years.

 

[acshuman]

Results of Having E

I have a friend whose son had Absence E as a child and up to the age of 18. At that time it seems that he GREW OUT of his Absence E. His seizures stopped occurring by themselves and his doctor was able to wean him off of his meds! This does happen sometimes, but NOT all of the time, so you can't expect this same thing to happen for everyone!:dontknow:

ACsHuman

 

[gymrat827]

I have a friend whose son had Absence E as a child and up to the age of 18. At that time it seems that he GREW OUT of his Absence E. His seizures stopped occurring by themselves and his doctor was able to wean him off of his meds! This does happen sometimes, but NOT all of the time, so you can't expect this same thing to happen for everyone!:dontknow:

ACsHuman

glad he did. but if that was the case, this joint would have 90% less the population.

 

[valeriedl]

Hi. I've been on so many AEDS that I often joke with my neurologist about feeling like a lab rat. I currently take 400mg/day of both Topamax & Vimpat, but still get breakthrough seizures.

I know what you mean about this one and I think I even said that a time or two. When I was first diagnosed I don't know how many meds and dosages I tried before they found out which ones worked best.

Some didn't work, some made things worse, some I couldn't take the side effects of ect.....

Finally after a few years we found out what worked best but every so often we still change the dosages. Luckily it's almost always decrease them instead of increase them.