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J Cuevas

J Cuevas

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I might be new to this site but epilepsy is not new to me. We have been together since 1965 and not until last year was it diagnosed as Epilepsy. Not when it first surfaced it was just absence seizures and as time passed it graduated to complex partial and now to secondary generalized tonic clonic seizures. I would say that with the medication I am on now on it has controlled the seizures but it is doing a real number with my memory. The medication I'm on now is Keppra and Vimpat. This time around after seeing so many neurologists I saw an epileptologist and with the first visit after the EMU he was able to pin point the exact place it originated from. Thank God for small favors.
I’m hear and presume we might exchange ideas sooner or later.
Thanks,
Jose
:hello:
 
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I just started taking Vimpat not to long ago so good luck with your medications, I hope they work for you!
 
Welcome to CWE,im sure your gonna get on great here,all the best!
 
J Cuevas said:
This time around after seeing so many neurologists I saw an epileptologist and with the first visit after the EMU he was able to pin point the exact place it originated from. Thank God for small favors.
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it's like night and day isn't it. yeah some neuros are good but the comfort of having an epileptologist is huge. i had multiple radiologists and a neuro that i didn't really care for for years and towards the end of our 'relationship' they started suspecting MTS on my left hippo.
leave him, get referred to an epileptologist. they do their own tests and have me in the seizure unit and whadya know? it's not MTS and it's only slightly the hippo, also my entire left amygdala.
not putting neuros down but yes, small favours :)

welcome to cwe. and as crash says, you're gonna like it here ;)
 
Hi,

this is a great forum with great people, jump right in.

I guess I"m the only one who had a BAD experience with a Epileptologist. I guess it's the same as any Dr. it all depends on which one you see.
 
Welcome to the forum. These people are really great and I am sure you'll fit right in. Have a great day.
 
jyearta Fortunately for me I did NOT have a bad experience with an epileptologist totally the contrary but I ask myself why did I not find him sooner. The neurologist I was seeing he only wanted his "professional fee" and you know what that included talking about politics and prescribing Dilantin and Mysoline. These medications were effective at first but regrettably as time went by they became less and less effective. He did a short EMU which according to him was negative. Sure it was negative 24 hrs and still with AED ? My absence were back and then the secondary generalized tonic clonic seizures; since he said I did not have epilepsy he took me off the medication and sure enough a week later a had a grand mal and then he said you need Ambien. You guys know what Ambien is for ? zzzzzzzzzz
He said I needed to sleep more but not behind the wheel. I should have sued him and the attorney that said there was nothing to do. HAHAHA there was but now it is too late.
That is my point of view sorry if I disagree.
Jose
 
gtowngirl
Night and day? oh yes day is the epileptologist and night the neurologist I wonder where he studied ?) that prescribed Ambien. When have you ever heard that Ambien is for sz I haven't not once but please correct me.
 
j cuevas, is this a question for me? about the ambien? not sure what you're asking?
 
jyearta said:
Hi,

this is a great forum with great people, jump right in.

I guess I"m the only one who had a BAD experience with a Epileptologist. I guess it's the same as any Dr. it all depends on which one you see.
Click to expand...

Definitely not the only one with a bad experience :hugs:
 
Does this answer your question?

gtowngirl were you not referring to the difference between a neurologist and a epileptologist "it's like night and day isn't it. yeah some neuros are good but the comfort of having an epileptologist is huge" that's what I was referring to. I can also refer to Vimpat, for me so far fingers crossed it has worked with Keprra which of the two is the one that makes the other work? no idea, but its working!!
 
Hi Jose! just wanted to add my welcome to the the others'.

As for Ambien, you're right, it's a sleep med, not an anti-seizure med. It can have an anticonvulsant affect but only at prohibitively high doses:
As a muscle relaxant and anticonvulsant, the drug's effects are not evident until dosages 10 and 20 times those required for sedation, respectively, are reached. For that reason, zolpidem (Ambien) has never been approved for either muscle relaxation or seizure prevention. Such drastically increased doses are also more inclined to induce one or more of the drug's adverse side effects, including hallucinations and amnesia.
Click to expand...
(from Wikipedia)
 
I'm really happy for each one that finds the right Dr. for you.

I would prefer to see a GOOD Epileptologist. The one I saw only wanted to tell me where all she goes to speak about E.
She put me on Keppra which was the meds. from wellll you know, When my husband call (I couldn't) she would not listen to ALL the side effects! she just ask well did I have a seizure my husband say no. then she said well that's what I here to get.

I had to have a sitter come in my home, She would NOT listen to the side effects.
 
Hi J Cuevas, I noticed that you are on Keppra right now. Are there any major side-effects? Are you more likely to be angry or upset at small things? Or is everything okay so far?
 
Lovepurple. Side effects with Keprra? don't know it it's Keprra or Vimpat but your mood changes not for the better. Gaining weight and you MUST take the medication with something in your stomach if you have to take it in the morning. What happened to me was that I was taking it in the morning as soon as I woke up but nothing in the stomach except for coffee and one day the muscles in my legs gave way. That had never happened to me. This lasted for 20 minutes and it was something very scary. I called the doctor and he told me that I must have something I my stomach before taking the medication. You read the medical indications and no where does it state that.
It has controlled the sz in combination with the Vimpat. Keprra by itself did nothing
So just take not of what happened to me, good luck!
Jose
 
Jose, all medications, no matter what medical condition they are for, will have side effects.

Side effects I have noticed with Keppra:
- More likely to be crying and/or angry at small things
- Bad thoughts
- Low self-esteem (confidence)

These side effects are the reason why I had to be taken off Keppra. It showed a side of me that was unknown to my loved ones. However, not all people with epilepsy that are taking Keppra will experience these side effects or similar side effects. Hopefully, you are one of those people who have good experiences with Keppra.

I wish you all the best. I hope that you will soon be free from the grasp of Epilepsy. :)
 
That I am 200% in agreement. Walgreens will not put nust be taken with food label cause the manufacure must say that that on the printed indicatiom since they dont they cant take that ini iati e even if patients have been told by Dr office that meds and food go hand in hand..
 
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