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Take control of your epilepsy and seizures. Seizure management has never been easier.
TAKE CONTROL TODAY
Was on TOPAMAX for a year. Hated the side-effects and had breakthrough seizures. Neuro wants me to try KEPRRA or LAMICTAL next. I want to know the skinny on these suckers. Weight loss/ weight gain? Emotional nightmare stuff? Funky skin rashes? Cognitive Fog? anyone has the goods, please chime in!
Recent Comments on this Discussion
Hey Stranger :)
I take Keppra 4000 mgs , 2000 morning & 2000 night-time. That is a large dose and I take anti-depressants because of it. It has an effect on me when my emotions get out of control, but it's been a long time. I guess you take the good with the bad sometimes and deal with it ! I also took Lamictal a few years ago in combination with other AEDs. Over time I started to get a rash on my arms and legs, this was after taking it a few years with keppra. Then neuro took me off lamictal ... the rash went away. Don't let me scare you ,give it a try see how things work out. Each one of us are so different in so many ways, like snowflakes. I know I sound crazy but it takes medications in diff. amounts and even mixed together with others to settle things down for a patient. I'll pray things go well for you.
Take care and bless , Johnny :) +-
Johnny,
Thank you so much for sharing your med journey. You don't sound crazy at all. Like you, I truly believe in the snowflake metaphor. :-)
I will re-post whatever happens with the meds. I see the neuro in December for the results of my recent AEEG 72 hour thingy. When I get to that consult is when I get the new Rx. take good care ~
Johnny,
How are you? Thanks for that post about staying on the Keppra when things got bad. I managed to find a good pharmacist who got me the Teva Generic 250mg tabs. It's the only decent generic. I'd be dead without it.
I take 500mg Q6 hours for a total of 2000mg/day. That's half your dose, but I'm a small, and now sick, girl. I used to need horse doses of meds, but I think I may now have hepatic impairment (compared to what I used to be) because I now have "normal" tolerances to meds. The blessing is that it is cheaper that way.
I also had the "permarash," but I was also taking Seroquel at the time and I have a terrible reaction to sulfa compounds. It could have been from both. I also got rashes and hives from Tegretol.
You sound really good. Your writing is really organised and that's a really good sign. I pray that you are healthy and happy.
Please check out my new forum. This is a link to the first comment: http://my.epilepsy.com/discussion/992746#comment-1039387
Baruch Hashem. Hoshia na.
Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!
P.S. Please read my blog. Thanks.
P.P.S. Please click here to read my latest post.
I have taken both Lamictal and Keppra for simple partial seizures. Remember, everyone reacts differently to medications.
On Keppra, I have the same side effects as Topamax: Constant fatigue, terrible memory, difficulty concentrating, very mellow state of mind as if nothing mattered (probably come off as depressed), and a general "dumb" feeling. However, I haven't had any seizures.
On Lamictal, I initially lost a lot of weight but then leveled out after a few months. I also had an occasional seizure whenever I had a headcold (I believe the mix of Tylenol and Lamictal caused this).
I've also taken Tegretol, Depakote, and Topamax. These were the worst when it came to side effects. I plan to ask my doctor if I can switch back to Lamictal from Keppra. I'd rather have an occasional seizure than feel like a complete idiot.
Good luck to you.
Puddle,
yeah I'd agree the occaisional seizure versus the all day everyday "comfortably dumb" state.
Maybe I won't get the skin rash? *fingers crossed*
Puddle,
You are luckier than me. Nothing keeps me seizure free and they all have terrible side effects, some less tolerable than others. I limp by with the Keppra. It's better than being dead.
Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help! Please read my blog. Thanks.
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P.P.P.S. The latest post from the zeelot. Please read this one. It's important.
My new neuro suggested Lamictal. But, after some research and a laundry list of side effects, I decided it wasn't worth the risk simply because I have so many sensitivities to medication. However, yes, do factor in that everyone is different.
Best of luck,
Litara
Litara,
I too, am sensitive to meds. took Effexor once, for depression and it was hellish!
I have never dropped acid.... but a half hour after I took it, time felt speeded up, then I fell asleep.
when I awoke, I felt like my teeth had been moved and were not affixed the top of my head instead of my jaw. it felt like my face was disfigured and all effed up.
almost like i had gotten hit witha two by four. It was terrifying. Whatever I was feeling would be what
I would imagine this wasa bad trip on LSD would feel like. The pharmacist said
he had never heard of anything like that, said I must be "sensitive to meds" now I'm scared to take new stuff!!
Effexor has a high seizure risk. You probably had some weird complex partial stuff going on. That would explain the Salvador Dali dripping watches time distortion stuff.
I get the time speeding up and slowing down stuff from TLE. It is disturbing and bizarre, especially when the pitch of sounds gets higher and lower like when you change the speed at which your spinning a record. It is truly nauseating.
I was unlucky enough to have been on Effoxor. The withdrawal was worse than from Ativan. It didn't even make me "not depressed." It just sucked to put it bluntly.
It seems that a lot of us epileptics are sensitive to meds. I think epilepsy and sensitivities are related. Too bad our doctors are too insensitive to figure this out.
Baruch Hashem. Hoshia na.
Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!
P.S. Please read my blog. Thanks.
P.P.S. Please click here to read my latest post.
Deborah,
yah! sounds like your theory makes good sense about the sensitivity overall with the E population. it also makes sense with the partial activity while on Effexor, I had never considered that as an option. I should also add it caused GI probs and an overall "cognitive stupor".
thanks for making me feel less freakish :)
I'm really glad I could help. It's terrible to feel like your the only one and some kind of weird genetic mutant.
The effexor was really tough on my stomach too. I felt better with it than whatever hellish med they had me on before, but it was bad and I stopped taking it. I forget what medication fire I fell into after that.
You should be "scared" to take new stuff. I am and I have to be. I read the monographs and am fortunate that I know how to and understand them. I can tell if a med has a "mechanism of action" or "pharmacodynamics" that will kill me or come close.
I can tell if a med is going to have an interaction even if it isn't even listed on the FDA web site. I kid you not. I found one and snooped around on the internet and I was right. Other people had found it too and the FDA data base was not up to date. They really need more money.
I've found others before and since. I just didn't bother to check the FDA site to see if they had them. The pharmaceutical companies need to be more careful because they are ultimately liable for something like that.
The FDA needs to be more careful to. I'm not a doctor or a chemist and I know enough to find the stuff. They all should be ashamed of themselves.
You need to be really careful. If you have a good pharmacist he or she is the one to go to. Ask for stuff you can read or web sites you can use to educate yourself. Rxlist-dot-com have the full prescribing and patient information for meds marketed in the US. That's also a good place to start.
I think they may have a medical dictionary too, but my memory is fuzzy right now because I've been having a bunch of seizures. So I can't be sure.
I've been saying this for years now: Educate yourself, advocate for yourself, and don't f*ck with your meds!
Baruch Hashem. Hoshia na.
Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!
P.S. Please read my blog. Thanks.
P.P.S. Please click here to read my latest post.
It just happened again!
Baruch Hashem. Hoshia na.
Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!
P.S. Please read my blog. Thanks.
P.P.S. Please click here to read my latest post.
Everyone is different. All meds need to be titrated slowly and you should try to get the brand name and extended release formulation is there is one. It makes a huge difference.
Lamictal has the skin rash/Stevens Johnson risk. Titrate very slowly.
Keppra has the emtional nightmare risk. Actually, it's physiological responses interpreted as emotional responses misinterpreted as bad behaviors. By any name, it's a potential nightmare.
Critical: Slow titration, brand name extended release formulation, and if your brain feels like it's going to explode get your doc to get you off it immediately or lower the dose!
I'm on the Teva generic Q6 hours. I blew through the Dough Nut Hole or should I say insurance do not pay hole so now I pay for my meds out of pocket until next year. I can't afford the brand name extended release. I have to take two 250mg pills every six hours because I am allergic to the FD&C Yellow #5 Tartrazine dye used in the 500mg pills. This costs almost twice as much because you basically pay by the pill and the larger doses usually don't cost that much more.
The whole thing sucks. Stopping the seizures is important, but so is having a life worth living. You have to find the optimal balance between the two.
Best of luck.
Baruch Hashem. Hoshia na.
Please read my blog. Here's the link to Tadzio's first post: http://psychout.typepad.com/blog/2010/11/as-kids-were-taught-that-sharing-is-caring-who-do-you-love-to-share-stuff-with-and-why.html
and here's the link to my latest post: http://psychout.typepad.com/blog/2010/11/devorah-zealot-soodak-nee-deborah-ellen-soodak-aka-debbie-soodak-asks-what-does-a-girl-have-to-do-to-.html
Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!
That's all I need is a fatal rash....sheesh!!!
I hope if that is the med the neuro puts me on,
that does not happen :P
I have seen Lamictal work spectacularly well for certain people. It almost killed someone I know and if it weren't for me it wouldn't have been almost. I got her to the ER because her doctors and therapists were completely ignoring her symptoms.
She was in the beginning stages of Stevens/Johnson. She had the water blisters all over her body and inside her body cavities. She could easily have died.
I know other people whose lives were completely changed by the Lamictal. They were able to lower or go off of their antidepressants entirely. Everyone is different.
The most important thing with Lamictal is very, very slow titration. Go up in tiny baby steps, widely spaced. Keep an eye out for rashes that don't go away. Keep your doctor posted. Don't let your doc tell you "it's not Stevens/Johnson." You don't want to end up like my friend in the ER or worse. If it hadn't been for me she'd be dead.
All the meds are scary, but epilepsy is scarier. I can't stop seizing and I'm scared. I can't get to doctors right now and I'm not going to have the money to pay my next quarterly insurance premium so I'm going to have to suspend the insurance until I get some money together (if ever).
The meds are a necessary evil for most of us. As bad as they are, uncontrolled seizures are worse. The brain damage and related physical injuries leave us permanently impaired. You have to find the right treatment and the right balance.
Baruch Hashem. Hoshia na.
Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!
P.S. Please read my blog. Thanks.
P.P.S. Please click here to read my latest post.
Deborah,
Luck I will need for sure, thank you for this information.
Your signature was of interest to me, so I researched it as best I could:
Baruch HaShem
"Baruch HaShem" is a Jewish phrase, literally meaning "Bless the Name". However, this is just like saying "Thank God!" in English, and is used just as often. The Hebrew word "Baruch" means "bless", and originates from the word "Bracha" (blessing). A Jew will usually use this phrase if something good happens, for example: "Baruch HaShem that he did not get hurt in that car accident."Jewish tradition forbids God's actual name to be spoken aloud; even in serious prayer, one does not pronouce His name according to the spelling and vowels in the Siddur, or prayerbook. Instead, one says "Adonoi", which translates into "My Master". But since this phrase is designated for actual prayer only, when Jews refer to God in a casual manner, they normally say "HaShem", which, as you accurately stated, means "the Name [of God]". The true name of God is considered too holy to be spoken at all, and when written out in Hebrew, it is forbidden to erase or throw away the paper.
Hoshia na
“Hosanna” is two words in the Hebrew—hoshea-na. “Hoshea” is an imperative meaning “Save!” “Na” is a particle of entreaty tacked on to the imperative, meaning “I pray” or “I plead.” So it roughly means, “please save.” In the context of the psalm, “hosanna” is a cry for help, a supplicatory plea for God to extend salvation. “In the highest” means in the highest degree or heavens. They were calling for salvation from the ultimate source—Heaven itself. “Hosanna” seems to have evolved through the centuries to the point that, by Jesus’ day, it was more of an exclamation of joy—a shout of praise and acclaim. People probably so use it today. But notice carefully its true biblical import.
Yeshua haMashiach
In the original Hebrew "Jesus Christ" is Yeshua haMashiach and is interpreted as "Yah who is Salvation, the Anointed One." Yah is short for the Holy Name of YHVH, which itself means "He who was, who is, who is to come", thus "the Eternally Existent One." So, the full title of the Mashiach is "The Eternally Existent Saving and Anointed One."
With love in Christ.
You have done your home work. I am a Jew, not a Christian, but you are correct: the people were crying for salvation or deliverance. Hosannah has been, some say deliberately, mistranslated.
There is no doubt that Jesus of Nazareth was a prophet. Jews do not believe that the Moshiach has come because the prophecies have not yet been fulfilled. That said, Revelations is mostly a retelling of the prophecies of the Old Testament.
Most of the Christians I know believe that when the time comes the Jews will be "saved" because they will recognise the signs. Of course we will. The difference in beliefs here is that for Jews it will be the first and only Coming and for Christians, it will be the second.
I don't think it will make much difference. The End of Days will be the End of Days.
I always write out the reference to Him by hand. I have far too much respect to include it in the auto-signature. I want to think of Him as I write it and thank Him for the fact that I am still capable of doing so.
Even though I use the word luck, I don't really believe in it. What I really believe in is Him. He will see us through.
Vaya con Dios.
Baruch Hashem. Hoshia na.
Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!
P.S. You can find the links to my latest blog posts here: http://my.epilepsy.com/node/992635#comment-1039015
I'm on lamictal after trying 3 previous drugs that did not work. i am finally getting some seizure control. With lamictal you have to taper onto it gradually, and I found that with each dosage increase I would be quite sleepy, but it leveled out after a couple of days. So far I have nothing but good experiences with it. As long as it is started gradually, the risk for the infamous rash is substantially reduced.
Masterjen~
Lamictal has come up with a number of positive feedback, only a few bad things so far. Seems like I hear more negative things about Keppra, then again I guess everyone is diff. did you ever get any responses to your "taking natural progesterone as an adjunct" post?
If you do a search on google you will get peoples opinions or side effects on them. The drug information is under treatment and drugs.
I am on Keppra, Zonegran, and Tegretol. Keppra when I first started it made me sleepy and my recall was foggy. After a month or 2 it got better, each increase my system did not react very much. Each person has a slightly different reaction.
I have taken lamictal and it was beneficial. I took it when it was first on the market.
tonialpha,
thank you, I will google the stuff. I find that here on e.com peoples opinions have been immensely helpful, so wanted to ask folks on this site. thank u :)
I have partials. I'm taking 3000mg generic keppra and 150mg topamax. I'm worn out, it seems like all the time. It could be the sezures or the meds. I was on lamictal, till I became allergic to it. It took 6 weeks for that to happen.
yellow,
thanks for the heads up on the "how long to become allergic" scenario. I woulda thunk it would happen immediately. thanks again :)
That's a really important point and not just for allergic reactions. Some side effects are "treatment emergent," meaning that they take awhile to show up.
Pay attention and let your doc know if you think something's not right.
All the best.
Baruch Hashem. Hoshia na.
Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!
Please read my blog.
My latest post: http://psychout.typepad.com/blog/2010/11/epilepsy-carpe-diem-ecstatic-seizures-of-the-temporal-lobes-a-lunatic-lepers-lot.html
Tadzio's first post: http://psychout.typepad.com/blog/2010/11/as-kids-were-taught-that-sharing-is-caring-who-do-you-love-to-share-stuff-with-and-why.html
Enjoy! (or not, some of it is tough going)
http://psychout.typepad.com/blog/2010/10/epilepsy-carpe-diem-images-of-auras-of-temporal-lobe-epilepsy.html
Yellow,
That's a lot of meds. You could be exhausted from the meds, the seizures, or both. I think I'm fried from both. It's a question of how sick or how dead. I'd rather be asking how sick than be dead and not asking at all.
Baruch Hashem. Hoshia na.
Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!
P.S. My latest post: psychout.typepad.com/blog/2010/11/devorah-zealot-soodak-nee-deborah-ellen-soodak-aka-debbie-soodak-asks-what-does-a-girl-have-to-do-to-.html on this very subject. Staying alive.
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