Help Me Wean Off Keppra XR

matchu

New
Messages
555
Reaction score
0
Points
0
when I was taking Keppra xr I swear I went up and down the stairs hundreds of times not knowing why I went up or came down. Lost a few pounds though. Or forgetting what I am saying mid sentence, but when seeing the doctor, it is like taking the car in, everything is fine.:ponder:
 

higg99

New
Messages
2
Reaction score
0
Points
0
Make sure it says sublingual, I used to work in a pharmacy and was taught in a pharmacology course that B vitamins need to dissolve under the tongue. The best ones are expensive in a liquid suspension, I take the cheaper ones from trader joes, and it takes a couple of days to work. I take two at a time in the morning and also you need to keep it under your tongue at least a minute. Your saliva dissolves stuff like starch, it needs to dissolve and absorb under the tongue to be effective. Your gut will destroy the vitamin.
 
Messages
1
Reaction score
0
Points
0
Dear Sicily726,

We are also in the same category as you. John's Keppra is at the same dosage in addition to Depakote. He suffers from tremors, lack of coordination, dizziness, lack of strength, intestinal problems and anger outbursts. He is now being weaned off Depakote at his insistance to a new neuro. We don't trust her because she said since his seizures were under control he should have staying in tree work. Impossible with these side effects. I find it incredible she thinks a tremoring uncoordinated hand should hole a chain saw atop a tree. I can't tell you how many times he has said he would prefer the seizures.

We lost his tree business after his seizures in 2005. We also lost our house and are in bankrupcy

My son has been of great help and loves us but doesn't understand and says the anger is unacceptable. I will try to explain to him again.
On our way to sign bankrupcy papers we were hit by a 18 wheeler and I was injured. Today I have to go for steroid injections in my spine to help with the pain. I am leaving this page on the computer in the hopes that he will look and surf the site. Any help or encouragement or just some kind of understanding is appreciated
On
 

mnij123

New
Messages
19
Reaction score
0
Points
0
I was just started on Keppra. It was to replace topamax which it my opinion is worse than the Keppra! I was on Keppra before but I was moody, angry, and agressive and went off of it. However, I am a student and the topamax renders me unable to read and focus which is impossible for school. Keppra doesn't do that to me. I am only on 500mg two times a day though.
 

sicily726

Account Closed
Inactive
Messages
28
Reaction score
0
Points
0
I, too, was switched from Topamax to Keppra because at the time I was in graduate school and became totally cognitively disabled on Topamax; also, the Topamax did not stop my seizures at all. Keppra stops most of my seizures and does not have the cognitive side effects Topamax had on me, so I thought, cool, I can get some seizure control AND still know my address and phone number and read and comprehend. However, the depression, insomnia, anger, etc. of Keppra is debilitating for me at times; the anger caused me to get fired from a job and I worry the insomnia or the anger will jeopardize the part time job I now have! This is why I don't know what else the neuro can do . . . I will not take a drug that causes cognitive side effects like Topamax and now I'm telling her I won't take a drug that causes mood side effects and insomnia. There is no such thing as an AED without side effects. But my seizures are non-stop and out of control without them. Seems I've no real choices--seizures or insanity--pick your poison.
 

Eve

New
Messages
286
Reaction score
0
Points
0
Hi. I am currently taking 1000 Keppra XR. I have found that my problems with anxiety lessened when I started taking the Keppra Xr at night. I am also taking Zoloft along with it. I have partial simple seizures that occur in my sleep. I am also taking a Multiple B100 complex. I take Calcium and Magnesium as well.

When I first switched from Cabatrol(tegretol) to Keppra XR I had bad seizures. Now my seizures have gotten "shorter" but I am still having seizures. I have an appt with my neuro on Friday, will let you know what happens.

I know I feel better taking the Keppra XR at night as opposed to the morning. But I am still having nocturnal seizures................but they are shorter. I dont know if the neuro will up my dosage or what. At least my anxiiety level had gone down dont know if its because of the the Zoloft or because I have been taking this Keppra XR for 2 months.

I really don't like having to take the Zoloft but once I started on the Keppra my panic attacks worsened to the point it was ruining my life. But now that I have been on the Zoloft a month and a half the panic attacks have lessened considerably. But still I wish I didn't have to take the Zoloft.

Good luck to you I know it's all a pain to deal with!

I used to take topomax too and it totally messed up my ability to focus so I had to go off it.
 
Last edited:

sicily726

Account Closed
Inactive
Messages
28
Reaction score
0
Points
0
You Guys are Great

Well, after taking the B Complex Vitamins (which includes 100 mg B6 in the mix of B vitamins) for awhile, I find I'm a little less depressed, but the insomnia, anxiety and panic persists. Seeing the neuro on Thursday. We will see. Good to know I've gotten good advice in here, and that I'm not alone. My heart goes out to those who continue to have problems with Keppra XR. Maybe we can all learn from each others' experiences.
 

sicily726

Account Closed
Inactive
Messages
28
Reaction score
0
Points
0
Well, the neuro suggested taking all 3000 mg of the Keppra XR once per day instead of 1500 mg in the am and 1500 mg in the pm to see if that ends the insomnia. It worked; taking 3000 mg Keppra XR once per day has eliminated the insomnia side effect. Now, if I don't set an alarm clock, I'll sleep for 12, 13 hours--just like when I was on regular Keppra (not the XR) at 3000 mg per day, 1500 mg twice per day.

I guess the dosing schedule of the XR made all the difference (I haven't told her yet). I am guessing the neuro wants me screened for the surgery, because I got a voice mail message from the dept. of surgery at the hospital yesterday asking me to call them back. I don't want the surgery, of course. So when I call them back on Monday, I guess I'll say thanks but no thanks.

Irony of ironies, now that I can finally sleep, I'm scheduled for a deprived sleep EEG on Monday!

I feel like screaming, but am grateful that I can now sleep (except for tomorrow night!).

Thanks for putting up with my Keppra complaints and for lending me your advice and support. The B vitamins are helping with my mood and the dosing schedule change has eliminated the insomnia.

Maybe I can live a near normal life.
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,499
Reaction score
6
Points
148
Nothing like a well-deserved good night's sleep. It's great that B vitamins and the dosing adjustment have made a real difference. I hope the all-nighter for your EEG isn't too stressful, although I guess that's the point of it. Good luck.
 

Bernard

Your Host
Administrator
Messages
6,539
Reaction score
9
Points
153
Sounds great sicily726. Glad to hear that you found benefits from some simple changes. :)
 

sicily726

Account Closed
Inactive
Messages
28
Reaction score
0
Points
0
I was taken off of Keppra when told I was having psuedo seizures, no weening off just stopped! I was taking 3000mg keppra xr! I still have seizures but since nothing showed up when while being monitored in the hospital, the doctor took me off and I have not even heard from my neurologist. Not one peep from him.
Well, matchu, it appears you and I have something in common. I showed up in the ER demanding to be taken off of the drug Keppra XR due to crippling depression and suicidal thoughts--neither of which I'd ever had before Keppra came into my life. Unlike my neurologist, the ER doctor agreed that Keppra could cause these things, and admitted me. They put me on a neuro floor, and did video eeg monitoring while taking me off keppra. It appears the diagnosis I got back in 1993 of complex partial seizures may have been mistaken because they are telling me they are 95% sure I've got "non-epileptic seizures" aka "pseudo seizures," with the qualification that there is a teeny tiny possibility I might ALSO have epileptic seizures. So, they want me back in for more video eeg monitoring and to see a shrink. I have been having horrible withdrawal symptoms from the Keppra, specifically anxiety and panic attacks, and sensitivity to light. The neuro who treated me in the hospital says it will take 6 to 8 weeks for all of the keppra to get out of me, and for me to return to my pre-keppra "normal."

So, I ended up in another ER after being discharged to be treated for a severe anxiety attack, and finally got some sleep.

I don't mind the tentative diagnosis of pseudo seizures, so long as I can get "cured" of it, and it does not involve the taking of any kinds of pills.

After being on this Keppra nightmare, which destroyed my mental health and with it my life for the past year, I will never, ever, ever again take another prescribed drug!

Seizures and/or pseudo seizures are bad, but prescribed drugs for seizures are worse.
 

RobinN

Super Mom
Messages
7,836
Reaction score
0
Points
0
Please work on nutrition and find some supplements to support brain health. There is a lot of anecdotal evidence that proves food sensitivities, and bad nutrition can cause brain disorders. PNES is a brain disorder, one that is more of a chemical imbalance, or sometimes an emotional imbalance. Nutrition can be associated with this. It can also help create a healthy environment for you.

I am glad that you will not be taking this drug any more. It sounded like a terrible experience for you. Best of luck to you.
 

sicily726

Account Closed
Inactive
Messages
28
Reaction score
0
Points
0
Thank you, Robin! And thanks for all of your support throughout my ordeal here. I think I know what the "emotional" problems are ... the doctors said my PTSD (anther "diagnosis" I got many, many times many, many years ago) is the probable cause of the pseudo seizures and that if I get the PTSD treated, I'll probably be able to make my "spells" go away. So, for anyone else out there who has PTSD and pseudo seizures, take care of your PTSD, and you may be free, and know peace.
 

sicily726

Account Closed
Inactive
Messages
28
Reaction score
0
Points
0
I was taken off of Keppra when told I was having psuedo seizures, no weening off just stopped! I was taking 3000mg keppra xr! I still have seizures but since nothing showed up when while being monitored in the hospital, the doctor took me off and I have not even heard from my neurologist. Not one peep from him.
matchu--I simply MUST know whether or not you had "withdrawal" symptoms from abruptly stopping such a high dose of Keppra, and how long you were on it before the abrupt withdrawall.

I was on Keppra for 5 mos., then keppra XR for 5 mos before being weaned relatively quickly in the hospital. Now I've got severe anxiety attacks and insomnia that won't quit. Are these symtoms of withdrawing the keppra, since I never had anxiety attacks before this?

Any help/responses appreciated. I want the anxiety attacks and insomnia to END NOW.
 

Eve

New
Messages
286
Reaction score
0
Points
0
I have been on Keppra XR and now I am on regular Keppra. I think the anxiety attacks might have been worse with the Keppra XR. I took Zoloft 50 mg and it helped and now I am back on 1500 regular Keppra. 1000 at night and 500 in the am and I am now taking a new AD Pristiq and it seems to help with the panic attacks. I am being trated for partial nocturnal seizures.

Good luck for you...........................know its frustuating.
Sometimes a change in meds help. I also take 100 mgs of B Vitamins along with a Cal Vit D3 and Mag supplemt and watch what I eat and I exercise 5 hours a week rotate between walking and yoga.

I know its difficult being weaned off a drug . I had a hard time being weaned off the Cabatrol which is why I started on the Zoloft. But now I am taking Pristiq.
 

sicily726

Account Closed
Inactive
Messages
28
Reaction score
0
Points
0
thank you

thanks, Eve. Unfortunately, the last thing I wanna do is take a DRUG. I'm going to try to find something natural, if such a thing exists, for my anxiety and insomnia. I figure this is only temporary drug withdrawal symptoms, since I never had these symptoms before this. So, I'm hanging onto the thought that, "This too, shall pass."
 

Eve

New
Messages
286
Reaction score
0
Points
0
In that case try exercise, yoga, meditation or listening to music. New Age Music or Celtic Music works for me. A long walk in the park works miracles sometimes. Or even a long hot bath or shower. Or take in your favorite movie. Eat foods that are high in Vitamin 6 like bananas and red bell peppers and I always eat one can of water packed tuna a week that is also high in vitamin B6.

Good Luck.
 

Meetz1064

Fantastico
Moderator
Messages
3,777
Reaction score
0
Points
0
A thought

on my end here: Melatonin. It is a natural hormone that our bodies make (in the pineal gland) that some of us do not make enough of. Even starting out on a dose as low as 3 mg a day is a great start to haling with sleep. There are some people whose bodies don't make it at all, and so they are unable to reach REM sleep (dream sleep), and melatonin helps get them to that point.
 
Top