Hello all,I have Temporal Lobe Partial Seizures. They have never been in good control. I have had seizure surgery. And last year had the VNS implant surgery. That coupled with the medicine regime I was on was doing well for me until the health insurance decided to take me off of one of the drugs. Threw me back a couple of knotches for a while. LOL I am on Topamax and Trileptal. The drug that the state took me off of was Clonazepam. I am 43 years old.


Re: New

Submitted by pinkangel_82 on Sun, 2006-01-15 - 11:57
Hello Neesy I am so sorry to hear that you have been going through a bad time with your epilepsy. As I don't live in the States I am very surprised to read that your health insurance decides if/when one of their clients stops taking a particular med. I think it should have been your neurologist to be on the safe side. What did your doctor think of it? It would most definately have made you ill if they stopped your meds. Hope you were able to do it on a gradual process like I did. I felt much better mentally when I came off my Clonazepam and Topamax which in the end of taking them gave me really bad side effects. If I were you I would discuss this again with your neurologist or doctor and see what he has to say about it. I myself have temporal lobe epilepsy. Am also on three different meds and hope to have surgery because the meds aren't controlling my seizures which happen mainly for me at the time of my period or just before it. I hope you are beginning to feel better now.

Re: Re: New

Submitted by Neesy on Wed, 2006-01-25 - 09:34
Pinkangel, He did take me off of it slowly. As slow as he could. Since he was only given a month to do it. LOL He was better than most of the doctors I have dealt with. It was not the first try. And needless to say he and his associates were not happy about myself and many of his patients having to do without medications now. But, with the healthcare being with it is here in the states doctors don't have as much control as they would like in most situations. Unforunately. You say you have temporal lobe epilepsy also. What three medications are you on? When are they going to evaluate you for the surgery? I hope you feel better soon. :)

Re: Re: Re: New

Submitted by pinkangel_82 on Wed, 2006-01-25 - 10:13
Hi Neesy Thank you for letting me know how you got on. The healthcare is dealt with so differently in the States compared to the UK. So I am sorry to hear about the stress this has caused you. Does this mean that your being perscribed not enough meds than you should be taking to control your epilepsy as best as possible? The three meds I am taking at present are Tegretol, Keppra and Clobazam. Clobazam is just an add-on med for during my monthly cycle, but after my monthly cycle ends I then get the withdrawal seizures. As for my pending surgery, I am having another EEG in Feb and my WADA Test in March 2006. I am also going to visit the Epilepsy Nurse for the first time next Tuesday and ask her if she can change my meds because I don't think Clobazam is doing me any favours. I have added you to my buddy list, so if ever you want a chat just send me a message. Look forward to speaking to you. Bye for now. Teri

Neesy Yeah, I also have

Submitted by Javajunkie28 on Mon, 2006-01-30 - 16:59
Neesy Yeah, I also have temporal lobe seizures. And I have had 2 brain surgeries and the VNS, as well. I currently have 2 meds, it used to be four but I did not like that idea, so I requested/discussed the reduction. And ta-dah, I am now down to 2. Well, here is an idea: in about a month I am a canidate for a Trial Surgery (which hasn't gone to market yet). I was wondering if anyone has heard of it or had it already implanted on top of their brain. This implant actually stays in a "passive" mode, unlike the VNS, until it detects the seizure about to occur. Then it fires up and interrupts the occurence of the seizure. If anyone knows of or shows interest you could PM me or discuss it here. It is the item that the company is covering all costs for canidates that fit the criteria: no control of seizures, more than 5 seizures in a month, same area of the occurence has stayed constant, etc. Ok, sorry for gabbing. More later if interested. Javajunkie

Re: New

Submitted by txrhb1 on Thu, 2006-01-26 - 20:47
Hi Neesy, I am so sorry that you have had such a difficult time with the insurance company. I recently had an experience where my insurance company denied paying for a medication which I needed to control my GERD. My doctor wrote them a letter, stating that for my condition, the drug he prescribed was the only one that would help me. The insurance company has now allowed me this medication, although I do have to pay a bit of a higher co-pay than others. You might see if your doctor can do that for you. Good luck, Barbie *************************************** "We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

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