Hi all,

I'm new and trying to dig through the threads. I'm very confused with my condition and I guess just seeking support.

I have been diagnosed with fibromyalgia several years ago and have been treated with Lyrica and then Gabapentin for that. I started gaining weight on the Gabapentin, so my rheumatologist started weaning me off the Gabapentin to start amitriptyline. As soon as I started weaning, I started having strange spells. The best I can describe was severe dizziness, muscle weakness, strange tingling. It felt like a shock was going through my body. The best way I could describe it is I felt like I got unplugged for a few seconds. It's like a electric feeling of trying to switch channels. As the weaning of the Gabapentin went on these became stronger and more frequent.

I went to visit a neurologist and he said it may be migraines, so they upped the amitriptyline and to take 100mg of the gabapentin 3x/day. This was a week ago and have noticed zero difference. The last two days however, I mistakenly was taking my 300mg gabapentin instead of the 100mg. And amazingly started feeling a little better. Not perfect, but fewer of the strange episodes.

Do these sound like seizures? I will be going in for an EEG, but was curious since the Gabapentin seems to be the common theme for these spells. Also, is epilepsy just mean someone that has seizures or is it a disorder where you have seizures? Just trying to understand if there is a difference between having seizures and being defined as epilepsy.

Thanks for the help. I look forward to talking with you all and learning in this forum!

Hi ellief,

Welcome to the forum! What you are discribing could be a possible seizure but if I may ask do you feel tired or confused at all and do you blank out (lose consciousness) for a few seconds? If you have any of these symptoms along with the dizziness and tingling feeling in your body then you may be having a seizure.

I know that when I was on gabentrin I gained a lot of weight and it made my seizures much worse so I went off the drug and I'm doing much better now. In regards to the amitripyline you are taking this drug has been known to cause seizures in people and it won't help you at all if you are having seizures because the drug will reverse what the gabetrin is doing for you since it's an anti depressent. You should get ahold of your neurologist IMMEDIATELY and tell them what's going on. My best advice to you is to go see an Epileptologist (Dr. specializing in epilepsy) at an Epilepsy Center which are at University hospitals or very big hospitals. Have the Dr. do a e.e.g. on you and also have a DNA test done. The e.e.g. will show if you are having any seizures and the DNA test can be done to find out what meds can help you the best with the least side effects. I would also have an MRI done with the dye and a CT scan. Try taking vitamin B12 1000 mcg. once a day that helps the nervous system and has decreased my seizures greatly, stay away from anything with nutra sweet (aspartame) in it because the nutra sweet causes more electrical activity in the brain and can trigger seizures. Keep track on a calender and write down what time these possilbe seizures are happening along with a discription. By doing this the Dr. may see a pattern in the possible seizures. I wish you the best of luck and May God Bless You!

Sue

ellief,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here to assist you. Look into the following forum on headaches:

http://neurotalk.psychcentral.com/forum32.html

Our shoulders are here for support in many ways. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Thanks for the warm welcome!

Does epilepsy just mean someone that has seizures or is it a disorder where you have seizures? Just trying to understand if there is a difference between "having seizures" and being defined as epileptic.

I had a few more bad episodes this weekend. Fell on the stairs during one, dropped a bag on another, and having jerky tremor during them now. I have another call into my neurologist this morning to hopefully get me OFF amitriptyline and change the gabapentin! My rheumatologist mentioned trying lamictal. Anyone know if that will help fibro too?

Thanks for the support... I feel like I'm crazy and just need to vent on here.

Hi ellief,

Epilepsy means a person is having a seizure disorder another words the seizure happens more than once. When a person just has a seizure it means that they have only had one or two seizures in their life and then the seizure stops. Epilepsy is caused by to much electrical activity in the brain. A good example of this is a thunderstorm. I'm sorry that you had more seizures I was on lamictal at one time I don't know if it will help the fibro but keep your eyes open for a rash and any skin itching. Many people have broken out with a rash after being on lamictal for just a few days. This happened to me and I had tiny red spots on my skin that looked like pimples and my skin itched like crazy. If this should happen to you get off the drug IMMEDIATELY. I wish you the best of luck and May God Bless You!

Sue

Got my EEG yesterday and had two seizures during it.... I'm shocked ... my body never cooperates during tests, so I'm pleasantly surprised something was caught on paper. Diagnosed with Temporal Lobe Epilepsy and started on Keppra. Here is to a new start and feeling better! Cheers!

Hi ellief,

I'm glad to hear that they were able to catch your sz. when they didyour e.e.g. but I'm sorry to hear that you have epilepsy. Just like you I have Temporal Lobe Epilepsy. My seizures start on the right temporal lobe. I was on Keppra last yr and it increased my seizures like crazy plus it made me feel exhausted no matter how much sleep I got. If I may ask did your Dr. tell you what type of seizures you are having? I've found taking Diamox, mysoline, and vimpat the best 3 AED's (seizure meds) to reduce/stop my seizures. Also taking vitamin B12 helps me a lot. I wish you the best of luck and feel free to ask me anything in regards to temporal lobe epilepsy anytime. I've had it for 39 yrs. now. May God Bless You!

Sue

I am happy they have found out about the seizures and have started to have you on meds to control them. I am taking Keppra it has seems to help me. My doctor wants to keep me on it to help with the surgery I had, which has control my seizures. On meds one will work for while others have problems. So take you time to find out what works for you. Please keep us up to date. My thoughts and prayers are with you.

Darlene

I read somewhere that 80% of people will have an [U]unprovoked[U] seizure during their lifetime. I have seen several definitions of epilipsy, and they differ somewhat. All state that epilepsy is a neurological condition involving electrical activity of the brain. Some say that epilepsy features seizures which result in loss of consciousness. I'm not sure that is accurate.
Focal seizures can be localized to a specific area of the brain and typically do not result in loss of consciousness. Complex seizures may have altered consciousness, but not loss of consciousness. Not all seizures are grand mal/tonic clonic with motor symptoms and loss of consciousness.
But, I think in general that epiliepsy is defined as recurrent seizures which must be controlled by medication. (or surgery if medication cannot control the seizures).
I'm happy you have a diagnosis. I hope your treatment is successful.

hi Ellie here's a hug

So strange that this happend as you were getting off the neurontin. In 1999 I saw a neurologist who die the VEEG and it didn't show a seizure but I had a wierd episode not really like what my normal "episodes were like at the time. I have had all kinds of seizures and at that time was hainvg cmplex partial seizures I think where I would end up paralyzed at the end but aware of what was happening. Previously in my life i had had tonic clonic seizures, petit mal seizures etc. So when they did the VEEG they took me off all of my meds cold turkey and I went into withdrawal. I was on amytriptyline for FMS and prozac for depression and the neurontin and I think one other but not sure. It was hell. But after I got through that I started having restless legs syndrome. Now I know that that is a common syndrome associated with FMS but the fact that it happened after I had been taken off the neurontin made me think it was caused by the neurontin or rather the taking off of it.

Also, i did lose t least 40 pounds when I got off of it. Now I'm on it again and have gained weight again--sigh. but it sure helps the FMS pain as does the cymbalta i'm on. I knw this isn't a fibro forum but I noticed you also have it and amytriptylene will also cause weight gain. at the time that I was taken off of everything they ended up putting me on trazodone instead and it works better. Only problem is there is a very tiny chance of it causing seizures which is why my doc now is trying to get me off of it and just use the clonazepam for sleep. My problem is that while the clonazepam helps it doesn't fully work.

Although it does suck that you have epilepsy , I'm glad it was caught on the first eeg you had! i have only had on positive one and that was back when I was 13. I now have tonic clonic seizures again. But that is another story

Take care and I hope your med helps you. We all react to medications differently so this could be the right one for you or you may need to have more than one. I personally can't take depakote(rash all over) and mysoline(hallucinations and severe vertigo) And several other just didn't work like tegretol and the fist one I was on was dilantin and it stopped working while in high school. so, there is always a chance that you may have to change meds over time or in the beginning if this one isn't working. i know it is a major pain but they will find the right one for you so don't give up hope and know that many others have gone through this and are here for you Take care,
Sara