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Epilepsy For support and discussion about Epilepsy and Seizure Disorders. |
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05-17-2012, 09:23 AM | #1 | ||
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05-17-2012, 06:45 PM | #2 | ||
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Hi Sah-PCA, Years ago I took Lyrica and it didn't work for me. You mentioned that you were having seizures in the morning and later at night this could be what they call "Myoclonic Seizures" and they happen when a person wakes up in the morning and when they go to sleep at night. I had this type of seizure for a short time and I found taking vitamin B12 1000 mcg. once a day a big help to reduce them. I then was put on vimpat and I haven't had a single myoclonic seizure since then, but I still do have absence (petit mal) and simple partial (aura) seizures. I also take diamox and mysoline. If you need help getting you seizures meds (AED's) you can call your local Epilepsy Foundation or call the Epilepsy Foundation of America at 1-800-332-1000 and they have programs that will help people pay for AED's as well as other medical costs. You might want to consider seeing a Epileptologist (Dr. specializing in epilepsy) instead of a neuro. I've gotten much more help and I take a lot less meds since I began seeing an Epileptologist. You can find and Epileptologist at a University hospital or a big hospital. Check with your family Dr. and he/she can refer you to an Epileptologist to get the necessary help you need and hopefully stop your seizures. I wish you the best of luck and May God Bless You! Sue |
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"Thanks for this!" says: | Sah-PCA (05-18-2012) |
05-18-2012, 09:00 AM | #3 | ||
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I will try the b12 and will post the outcome of both. Thanks for your help, its greatly appreciated. God Bless you! |
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05-19-2012, 06:05 AM | #4 | ||
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Hi Sah-PCA,
I'm sorry to hear that you had to go through a crainotomy. I've had brain surgery twice and I know that it's no fun. I did want to tell you that often a person can have an e.e.g. and it won't show any problems and that's because the possible brain damage is to deep in the brain for the e.e.g. to show. This is what happened with me. I had all the tests done before surgery and my Drs. found I only had brain damage on the right temporal lobe but when they cut into me they found damage on the frontal lobe as well as the left temporal lobe that never showed up on any tests I had done. The surgery that you had as well as the Lyrica can cause problems for some people which can cause mental, and physical problems as a side effect. Chemicals in the brain have changed possibly leading to the metal problems. Give it a try and see a neurophsycologist, this is a Dr. that specializes in neurology and physchology they can do simple tests on you and find out what is causing the problems you are having. I wish you the best of luck and May God Bless You! Sue |
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06-12-2012, 03:26 PM | #5 | ||
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Jeepers! I'm glad I came back here and saw this thread! My NewNeuro doesn't think there's anything wrong with me other than mental, that all my previous doctors were wrong about the seizures (and keeps talking about "if I really had grand mal seizures" even though it was status epilepticus, seizing the entire way to the ER in an ambulance, witnessed by many), and that my reluctance to go off my AEDs is due to anxiety. The fact that my Famdoc wants me to proceed cautuiously doesn't matter; I was lectured, er I mean encouraged, to choose whom I was going to listen to, because too many different doctors are giving me different input and NewNeuro *really* wants to help me.
Anyway, I'm on keppra for the grand mal seizures; lyrica was added later for what doctors had called break through partials (that this doc said aren't seizures, and then challenged me on who I was going to believe). So IF I would be willing to go off a med, I think I'd chose to wean off the lyrica......so therefore I'm REALLY glad I read this! YIKES! I've been on 75mg 2x/day lyrica for about seven years (on keppra for 9 ys). The weaning off process sounds VERY unpleasant!!! I have sugar balance problems even when "stable" (on a very careful low-carb diet; sugar either causes tachycardia or causes me to crash/sleep; sometimes causing jerking like myoclonus in bed). I am going to have to look into this further. Thank you so much for sharing! |
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04-18-2014, 11:17 AM | #6 | ||
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When you have problems withdrawing from Lyrica it's very important to do a very slow taper. Reducing your dose by 10% every month works for most people. And when there comes a month withdrawal symptoms still break through, just increase the dose by 10% back again and you should be fine.
When you feel you are still going too fast you can stay at a certain dose for a month longer, it will only take some more time till you are there. Do the water titration method, and it goes like this: Get yourself some 100 ml jars and some syringes to do the job. For instance: empty your capsule into a 100 ml jar filled with water and shake it well. The first month you suck 10 ml of the solution out of it, the 2nd. mont 20 ml, and so on. At he end it still can be rough, and when you feel so, just slow your taper to 5% (5 ml) a month. This taper will last about a year, but it will prevent you from going through hell. Lyrica withdrawal can be just as bad (or even worse) as benzo withdrawal, so take it slow and take your time. Good luck! |
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04-19-2014, 01:08 AM | #7 | |||
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Lyricafree, It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place. Please keep us up to date on her condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. Darlene
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